Psoriatic Arthritis. Now what?
April 24, 2012 10:16 AM Subscribe
Psoriatic arthritis. Now what?
After months of horrible joint pain, my beloved husband has been diagnosed with psoriatic arthritis. He started treatment two and a half weeks ago, a burst-and-taper dose of prednisone plus 15 mg of methotrexate once a week. The prednisone was GREAT while he was on the high dose (20 mg), but as soon as he started tapering it down, his pain started coming back. He is not back to baseline, but he is definitely impaired in his daily activities.
He has a rheumatologist whom he likes very much, but the office is busy and there's a couple day turnaround on phone calls. My husband is 43 and until this started, he was a healthy, active, vigorous man. The joint pain has taken away a lot of things that he loves to do, including year-round hiking and bike commuting, and he is sad and angry a lot of the time.
Will it get better? Is there anything he should be pushing his rheumatologist to do or try? The more woo-woo side of the family is pushing "anti-inflammatory diets" and stuff like that; is there anything to that? I know prednisone is bad for you long-term, but how long-term is long term? Sadly the biologics aren't covered by our insurance, so those are probably off the table for now.
Even more than that, what do I need to know to support him through this? The vast majority of the information about autoimmune polyarthritis that's out there on the internet is about rheumatoid arthritis; are they similar enough that it'll be useful to me to read those? I want to do everything I can to help him, but I feel like I'm operating in a giant vacuum.
Any wisdom you have to offer would be appreciated. I know there are things that suck worse than this, but gosh, this actually sucks quite a bit.
After months of horrible joint pain, my beloved husband has been diagnosed with psoriatic arthritis. He started treatment two and a half weeks ago, a burst-and-taper dose of prednisone plus 15 mg of methotrexate once a week. The prednisone was GREAT while he was on the high dose (20 mg), but as soon as he started tapering it down, his pain started coming back. He is not back to baseline, but he is definitely impaired in his daily activities.
He has a rheumatologist whom he likes very much, but the office is busy and there's a couple day turnaround on phone calls. My husband is 43 and until this started, he was a healthy, active, vigorous man. The joint pain has taken away a lot of things that he loves to do, including year-round hiking and bike commuting, and he is sad and angry a lot of the time.
Will it get better? Is there anything he should be pushing his rheumatologist to do or try? The more woo-woo side of the family is pushing "anti-inflammatory diets" and stuff like that; is there anything to that? I know prednisone is bad for you long-term, but how long-term is long term? Sadly the biologics aren't covered by our insurance, so those are probably off the table for now.
Even more than that, what do I need to know to support him through this? The vast majority of the information about autoimmune polyarthritis that's out there on the internet is about rheumatoid arthritis; are they similar enough that it'll be useful to me to read those? I want to do everything I can to help him, but I feel like I'm operating in a giant vacuum.
Any wisdom you have to offer would be appreciated. I know there are things that suck worse than this, but gosh, this actually sucks quite a bit.
I have a number of friends with both RA (Rheumatoid Arthritis) and PsA (Psoriatic Arthritis) - though there might be other names as there is a push to get the "arthritis" dropped from the name since it's an auto-immune disorder and quite dissimilar to Osteoarthritis.
Their go-to sites are rawarrior.com and rheumatoidarthritisguy.com. If there are similar knowledge-disseminating sites for PsA, I've not come across them.
There is a *lot* of information out there (I've read a bit having friends with these diseases) but that base question of RA vs PsA for similarity in symptoms and treatment is mostly okay. They might have different causes, markers, presentations, but seem to react to the same treatments (MTX and bio-drug things) enough that a lot of the information on those two RA sites should "translate" over pretty well.
Also, there are some facebook groups, too - I believe each site has an FB page and twitter stuff, might be more out there.
Does his insurance cover counseling? Can he shop for an office he has a better fit with for his rheum stuff? How well does his primary care physician interface with the rheum and your husband's overall quality of care and life?
I agree, that does suck quite a bit.
posted by tilde at 10:33 AM on April 24, 2012
Their go-to sites are rawarrior.com and rheumatoidarthritisguy.com. If there are similar knowledge-disseminating sites for PsA, I've not come across them.
There is a *lot* of information out there (I've read a bit having friends with these diseases) but that base question of RA vs PsA for similarity in symptoms and treatment is mostly okay. They might have different causes, markers, presentations, but seem to react to the same treatments (MTX and bio-drug things) enough that a lot of the information on those two RA sites should "translate" over pretty well.
Also, there are some facebook groups, too - I believe each site has an FB page and twitter stuff, might be more out there.
Does his insurance cover counseling? Can he shop for an office he has a better fit with for his rheum stuff? How well does his primary care physician interface with the rheum and your husband's overall quality of care and life?
I agree, that does suck quite a bit.
posted by tilde at 10:33 AM on April 24, 2012
Have a doctor check him for gluten intolerance. Both arthritis and psoriasis are co-related with gluten sensitivies, and many people improve significantly on a gluten free or gluten restricted diet. But have him checked for it BEFORE he goes on a gluten free diet. Ask for a TTG and IGG, IGA test, if positive go to a gastroenterologist. And don't be surprised if the doctor thinks that my suggestion is ridiculous, most docs don't know a thing about gluten issues.
(my apologies for gluten issues being my default answer. Just saying that there is a co-relation)
posted by Neekee at 10:35 AM on April 24, 2012 [2 favorites]
(my apologies for gluten issues being my default answer. Just saying that there is a co-relation)
posted by Neekee at 10:35 AM on April 24, 2012 [2 favorites]
Supplementing with turmeric, cinnamon, and other herbal anti-inflammatories has some research backing up its efficacy with some issues, and it's a low-risk, fairly low-cost intervention to experiment with.
IF HE DOES THIS he really really needs to keep up a list of what he takes in what doses and an eye on his liver levels (they have to test that for MTX anyway). The cheapo cinnamon available throughout most of the United States is not the "good stuff" that has the actual efficacy and for some people do much more harm than good.
posted by tilde at 10:35 AM on April 24, 2012 [1 favorite]
IF HE DOES THIS he really really needs to keep up a list of what he takes in what doses and an eye on his liver levels (they have to test that for MTX anyway). The cheapo cinnamon available throughout most of the United States is not the "good stuff" that has the actual efficacy and for some people do much more harm than good.
posted by tilde at 10:35 AM on April 24, 2012 [1 favorite]
I don't really have any useful advice for you but I wanted to at least offer my support and a few things that have worked for us. (IANAD, YMMV, etc etc etc.) My partner was diagnosed with psoriatic arthritis about seven years ago at around 30 years of age (before I knew him).
We live in the Netherlands where everybody rides bikes, and this is something that my partner still does with much pleasure (his pain is mostly in the feet and hands; I would assume that makes a difference.) He takes Celebrex for pain relief and earlier was being treated with methotrexate (he stopped temporarily so that we could conceive a child and will soon start up again). The methotrexate is a really heavy drug - eg it's one of the few that men are advised not to father children while taking - but it has been great for him and greatly slowed if not halted the progress of the disease. As I recall it took at least a few months for the methotrexate to take full effect and for the side effects (exhaustion, nausea, confusion/vagueness) to settle down, but once that happened it was fine.
Unfortunately all the resources I have are in Dutch, which I'm guessing you don't speak. Here we have a rheumatology centre called Reade, which addresses all aspects of the illness: my partner has gone to information sessions on how much he is required to tell a potential employer, they run partner/family information sessions, have counselling, give him exercises to do and have regular checkups. (We have a form of socialised health care here so money is not a factor in treatment, which I realise is not the case for most people in the US.)
As far as diet goes, I know that my partner has most definitely found that some things make the problem worse. Grapefruit and oranges are often recommended for arthritis but he has to steer clear of them as they cause him more problems. I really would suggest that your husband tries experimenting with diet, ideally with the help of a dietician.
On preview: others have asked a lot of other questions and made suggestions I was going to cover so I'll leave it there. I'm sorry that your husband (and you) are having to deal with this.
posted by rubbish bin night at 10:38 AM on April 24, 2012 [1 favorite]
We live in the Netherlands where everybody rides bikes, and this is something that my partner still does with much pleasure (his pain is mostly in the feet and hands; I would assume that makes a difference.) He takes Celebrex for pain relief and earlier was being treated with methotrexate (he stopped temporarily so that we could conceive a child and will soon start up again). The methotrexate is a really heavy drug - eg it's one of the few that men are advised not to father children while taking - but it has been great for him and greatly slowed if not halted the progress of the disease. As I recall it took at least a few months for the methotrexate to take full effect and for the side effects (exhaustion, nausea, confusion/vagueness) to settle down, but once that happened it was fine.
Unfortunately all the resources I have are in Dutch, which I'm guessing you don't speak. Here we have a rheumatology centre called Reade, which addresses all aspects of the illness: my partner has gone to information sessions on how much he is required to tell a potential employer, they run partner/family information sessions, have counselling, give him exercises to do and have regular checkups. (We have a form of socialised health care here so money is not a factor in treatment, which I realise is not the case for most people in the US.)
As far as diet goes, I know that my partner has most definitely found that some things make the problem worse. Grapefruit and oranges are often recommended for arthritis but he has to steer clear of them as they cause him more problems. I really would suggest that your husband tries experimenting with diet, ideally with the help of a dietician.
On preview: others have asked a lot of other questions and made suggestions I was going to cover so I'll leave it there. I'm sorry that your husband (and you) are having to deal with this.
posted by rubbish bin night at 10:38 AM on April 24, 2012 [1 favorite]
I am not a doctor - I am a sufferer of PA.
I was treated for the same thing with a burst-and-taper of prednisone, then onto sulfasalazine in my case. I believe this is off-label usage in the US, but it is working. The pain started back after the taper-off, but gradually died down, although the sulfasalazine had to be tapered up slightly after a month or so. I am more active than I was for several years prior to my diagnosis.
PA is literally and figuratively a pain, but I am so much better now, with a host of other little symptoms that I didn't know were associated also under control.
My diet definitely has an effect - if I eat things that irritate my stomach / gut (I am lactose intolerant), then my PA flares a bit. There are theories that gut irritation and PA are linked, but nothing definitive that I know of.
My rheumatologist is convinced that PA will be fully understood and defeated in ten years or so, and I know a leading dermatologist who is of the same opinion.
Hang in there - a couple day turnaround on phone calls is ok - this disease doesn't change its behavior overnight.
I would add one thing - I have had a couple of bouts with shingles - possibly as a result of the immune modulation effect of *my medication*. I do not know if this can occur with methotrexate, but if you see a chickenpox-like spot or get a sore nerve on your back or chest, suspect it, and go see the rheumatologist straight away, as getting treatment within three days can seriously lessen its course.
Feel free to PM if you like.
posted by blue_wardrobe at 10:40 AM on April 24, 2012 [1 favorite]
I was treated for the same thing with a burst-and-taper of prednisone, then onto sulfasalazine in my case. I believe this is off-label usage in the US, but it is working. The pain started back after the taper-off, but gradually died down, although the sulfasalazine had to be tapered up slightly after a month or so. I am more active than I was for several years prior to my diagnosis.
PA is literally and figuratively a pain, but I am so much better now, with a host of other little symptoms that I didn't know were associated also under control.
My diet definitely has an effect - if I eat things that irritate my stomach / gut (I am lactose intolerant), then my PA flares a bit. There are theories that gut irritation and PA are linked, but nothing definitive that I know of.
My rheumatologist is convinced that PA will be fully understood and defeated in ten years or so, and I know a leading dermatologist who is of the same opinion.
Hang in there - a couple day turnaround on phone calls is ok - this disease doesn't change its behavior overnight.
I would add one thing - I have had a couple of bouts with shingles - possibly as a result of the immune modulation effect of *my medication*. I do not know if this can occur with methotrexate, but if you see a chickenpox-like spot or get a sore nerve on your back or chest, suspect it, and go see the rheumatologist straight away, as getting treatment within three days can seriously lessen its course.
Feel free to PM if you like.
posted by blue_wardrobe at 10:40 AM on April 24, 2012 [1 favorite]
Extraordinarily good point, tilde. Thank you for catching me on that. Yes, get a recommendation for a cinnamon supplement from a doctor familiar with supplements while using it, and have them track your liver functions. Sorry not to have been so handwavey on that.
posted by Sidhedevil at 10:43 AM on April 24, 2012
posted by Sidhedevil at 10:43 AM on April 24, 2012
Oh - and as for the biologics - it's generally considered better to try the non-biologics first unless or until they don't work. Then the biologics provide a fall-back. For me, if I were to go on to a biologic, my business trips to India would need to be curtailed due to the risk of tuberculosis.
posted by blue_wardrobe at 10:43 AM on April 24, 2012
posted by blue_wardrobe at 10:43 AM on April 24, 2012
I'm an RA patient, so I can give a little advice. I believe one big problem with steroids is that it is just alleviating the symptoms without really getting to the cause. I was on them for several months because I was breastfeeding and could not start Methotrexate. It did feel great while on them. I went from not being able to walk down stairs to packing my house for a move within two days. I can take them if I get flare-ups, but I can't rely on them because they are not truly helping the disease.
MTX is really the first line of defense for these autoimmune diseases, you'll have to give it time to work. And I know that my insurance company has a policy that patients have to be tried out on the older DMARDS (disease modifying something something) and be shown to fail at those before being approved for biologics.
If MTX doesn't work, you should try different channels for getting the biologics if you can. The Pharma companies offer some discounts. I was originally on an insurance that did not provide prescriptions, so I could not afford the 1400.00 a month Enbrel. But they did provide reimbursement for in-patient procedures, which meant I got coverage for the drugs that you receive as an infusion in the hospital for just a 15.00 copay. But it was probably over a year for that to start because I had to prove that I'd tried MTX and another DMARD first without significant results.
I'd say the big thing is to not give in already to the idea that there will always be some pain. My Rheumy was big on insisting that his goal was to get me back to 100% all the time, and not to settle for less.
posted by saffry at 10:54 AM on April 24, 2012 [1 favorite]
MTX is really the first line of defense for these autoimmune diseases, you'll have to give it time to work. And I know that my insurance company has a policy that patients have to be tried out on the older DMARDS (disease modifying something something) and be shown to fail at those before being approved for biologics.
If MTX doesn't work, you should try different channels for getting the biologics if you can. The Pharma companies offer some discounts. I was originally on an insurance that did not provide prescriptions, so I could not afford the 1400.00 a month Enbrel. But they did provide reimbursement for in-patient procedures, which meant I got coverage for the drugs that you receive as an infusion in the hospital for just a 15.00 copay. But it was probably over a year for that to start because I had to prove that I'd tried MTX and another DMARD first without significant results.
I'd say the big thing is to not give in already to the idea that there will always be some pain. My Rheumy was big on insisting that his goal was to get me back to 100% all the time, and not to settle for less.
posted by saffry at 10:54 AM on April 24, 2012 [1 favorite]
I've had mild/moderate PsA for about 12 years. I don't take MTX currently, but it was definitely helpful when I took it. It can take a little while to kick in so if your husband just started it, he may need to wait a bit before seeing the effects.
There's some decent information on the National Psoriasis Foundation website. I recall there being a forum on there, but it's been awhile since I visited. Lacking an in person support network when I was diagnosed, that was a good place to interact with other people who were dealing with PsA.
The anti-inflammatory diet is worth a shot. I definitely notice a difference in my body when I'm eating a lot of red meat, nightshades, dairy, and other foods that cause inflammation.
Keeping active through some low-impact exercise has been key for me. I can't do things like rock climbing or volleyball because of my wrists, but I can do (gentle) yoga, swimming, water aerobics, etc. I went through a lot of denial/anger when I was first diagnosed about the things I couldn't do anymore ( i.e. I used to like playing guitar; not really possible anymore). FOcusing on what I could still do, getting into new activities, and checking in with my support network have been and still are helpful.
Your husband might see if he can get a referral to a physical therapist from his rheumatologist. I went to a therapist for a couple of sessions and came away with some good exercises and some suggestions for assistive devices.
posted by medeine at 11:12 AM on April 24, 2012 [1 favorite]
There's some decent information on the National Psoriasis Foundation website. I recall there being a forum on there, but it's been awhile since I visited. Lacking an in person support network when I was diagnosed, that was a good place to interact with other people who were dealing with PsA.
The anti-inflammatory diet is worth a shot. I definitely notice a difference in my body when I'm eating a lot of red meat, nightshades, dairy, and other foods that cause inflammation.
Keeping active through some low-impact exercise has been key for me. I can't do things like rock climbing or volleyball because of my wrists, but I can do (gentle) yoga, swimming, water aerobics, etc. I went through a lot of denial/anger when I was first diagnosed about the things I couldn't do anymore ( i.e. I used to like playing guitar; not really possible anymore). FOcusing on what I could still do, getting into new activities, and checking in with my support network have been and still are helpful.
Your husband might see if he can get a referral to a physical therapist from his rheumatologist. I went to a therapist for a couple of sessions and came away with some good exercises and some suggestions for assistive devices.
posted by medeine at 11:12 AM on April 24, 2012 [1 favorite]
Sidhedevil no worries - it's impossible to cover all of the disclaimers all the time. I saw someone go through that problem and wanted to hilight the cinnamon issue as my dad had got me researching it as well.
On anti-inflam diets: I've seen some people have good results, some null. There's a bunch of new research going on with the intestines, like hookworms (heard something on NPR a while back) and gut-types .... anti-inflam might be one of those effective if specific criteria are met, but it seems less squicky to try than mucking around hoping for parasites. :)
On drugs - I see reccs for pharma company help with biologics - might be worth a try. Also, I thought I read something about shortages of methotrexate - maybe his insurance would pay for biologics if they become necessary because of a shortage?
One thing I didn't see on the responses here (including my own) is spousal support ... something all my friends have had considerable opinions on.
First, breathe. It's not likely that within a year he'll be wheelchair bound or something (though I know he's currently cut off from his preferred activities to an extent). But he might find the pain hard to express, in that something is tiring more than hurting or hurting more than tiring and you don't really "notice" it until he's pushed himself too far to appear to be having a "normal" day and spends the next couple of days recuperating.
If there are things that can be done to make life easier for both of you - like a cleaning lady or yard person or sending laundry out or something, do it. Getting a comfortable chair or a massage subscription. Keeping ice packs handy, or if you have a big house, phones that double as pagers so you can talk to one another. Room darkening curtains for sleeping or egg crate topper for his side of the bed or a better TV for the living room for him to put up his feet and rest. Getting him an e-reader or light tablet for surfing and reading that's comfy anywhere. Baking in time for excursions for rests or shade or what he needs. Breaking the tabs off of child-proof med caps (still keep in safe place!) or getting lighter dishware.
Let him figure out how much to share or not share, try to encourage outside support if things are outside your ability to help him; a counselor as I mentioned before, an online group where he can share or learn, outreach groups in his area.
Keep reaching out. On the hard days it will be hard for him to reach out. Sometimes a simple touch as a reminder that you're here, here for him, here for your "us". Ask him if there are things you can do to help - running a tub or rubbing his feet. Bringing the dog over for a snuggle. Walking the dog with him so he can go with but not have to worry about needing to rest or go in when the dog is still "go go go". Or whatever. Help him into new couples activties, and don't push to dump what he "can't" do anymore. A little clutter won't kill you, but throwing out the [whatever symbol of thing he can't do anymore, guitar, bowling ball, tennis racket, roller blades] before he is ready might really bug him.
Get some support for you, too. As a friend of RA and PsA patients, I've not seen a "spousal support" thing though I've been a sounding board. It might be scary and out of control reality for him a bit, but having to deal with it through proxy sounds really hard, too.
posted by tilde at 11:58 AM on April 24, 2012 [1 favorite]
On anti-inflam diets: I've seen some people have good results, some null. There's a bunch of new research going on with the intestines, like hookworms (heard something on NPR a while back) and gut-types .... anti-inflam might be one of those effective if specific criteria are met, but it seems less squicky to try than mucking around hoping for parasites. :)
On drugs - I see reccs for pharma company help with biologics - might be worth a try. Also, I thought I read something about shortages of methotrexate - maybe his insurance would pay for biologics if they become necessary because of a shortage?
One thing I didn't see on the responses here (including my own) is spousal support ... something all my friends have had considerable opinions on.
First, breathe. It's not likely that within a year he'll be wheelchair bound or something (though I know he's currently cut off from his preferred activities to an extent). But he might find the pain hard to express, in that something is tiring more than hurting or hurting more than tiring and you don't really "notice" it until he's pushed himself too far to appear to be having a "normal" day and spends the next couple of days recuperating.
If there are things that can be done to make life easier for both of you - like a cleaning lady or yard person or sending laundry out or something, do it. Getting a comfortable chair or a massage subscription. Keeping ice packs handy, or if you have a big house, phones that double as pagers so you can talk to one another. Room darkening curtains for sleeping or egg crate topper for his side of the bed or a better TV for the living room for him to put up his feet and rest. Getting him an e-reader or light tablet for surfing and reading that's comfy anywhere. Baking in time for excursions for rests or shade or what he needs. Breaking the tabs off of child-proof med caps (still keep in safe place!) or getting lighter dishware.
Let him figure out how much to share or not share, try to encourage outside support if things are outside your ability to help him; a counselor as I mentioned before, an online group where he can share or learn, outreach groups in his area.
Keep reaching out. On the hard days it will be hard for him to reach out. Sometimes a simple touch as a reminder that you're here, here for him, here for your "us". Ask him if there are things you can do to help - running a tub or rubbing his feet. Bringing the dog over for a snuggle. Walking the dog with him so he can go with but not have to worry about needing to rest or go in when the dog is still "go go go". Or whatever. Help him into new couples activties, and don't push to dump what he "can't" do anymore. A little clutter won't kill you, but throwing out the [whatever symbol of thing he can't do anymore, guitar, bowling ball, tennis racket, roller blades] before he is ready might really bug him.
Get some support for you, too. As a friend of RA and PsA patients, I've not seen a "spousal support" thing though I've been a sounding board. It might be scary and out of control reality for him a bit, but having to deal with it through proxy sounds really hard, too.
posted by tilde at 11:58 AM on April 24, 2012 [1 favorite]
Data points!
I was diagnosed with PA in 2004 in my late twenties. I very successfully used sulfasalazine for a few years, then I had a total remission of about 2 years, then the PA came back. Sulfasalazine didn't work this time around, so now I take Enbrel, which has been wonderful. In the in between times before they knew what I had and before it flared again, I also had a cortisone shot or three (knee and hip).
Both now and while I was on salfasalazine (and during the remission), I can run (10 mile race next weekend), do triathlons, and do yoga, etc. There was a brief time when the PA resurfaced after the remission during which we thought it was just part of a co-morbid osteoarthritis issue and I thought I would never run again, but I didn't really believe that.
This is all just to say that it could get better, both with drugs and (less likely) with occasional remission. My doctor sometimes tell me the PA could go away all together (or remit again).
Also, I used UV therapy for a few months for the psoriasis (which was mild in my case, and was of the guttate type) right after I was diagnosed, and it never came back.
posted by Pax at 1:41 PM on April 24, 2012
I was diagnosed with PA in 2004 in my late twenties. I very successfully used sulfasalazine for a few years, then I had a total remission of about 2 years, then the PA came back. Sulfasalazine didn't work this time around, so now I take Enbrel, which has been wonderful. In the in between times before they knew what I had and before it flared again, I also had a cortisone shot or three (knee and hip).
Both now and while I was on salfasalazine (and during the remission), I can run (10 mile race next weekend), do triathlons, and do yoga, etc. There was a brief time when the PA resurfaced after the remission during which we thought it was just part of a co-morbid osteoarthritis issue and I thought I would never run again, but I didn't really believe that.
This is all just to say that it could get better, both with drugs and (less likely) with occasional remission. My doctor sometimes tell me the PA could go away all together (or remit again).
Also, I used UV therapy for a few months for the psoriasis (which was mild in my case, and was of the guttate type) right after I was diagnosed, and it never came back.
posted by Pax at 1:41 PM on April 24, 2012
Drop gluten and lactose for a couple of weeks. Hardcore. No cheating. See how he feels.
posted by seanmpuckett at 2:26 PM on April 24, 2012
posted by seanmpuckett at 2:26 PM on April 24, 2012
I also have an autoimmune disease, and have some idea of what he's going through. The period after diagnosis is not fun, because you have to come to terms with no longer being healthy, with suddenly having a chronic disease for the rest of your life.
Don't count on it "getting better" -- that's not how this works. That's the wrong question. There will be good days and bad days and plenty of meh in between. I've had to deal with my disease for nearly 15 years; on balance it sucks, because I've been in at least some pain almost every day during that time. But that's not to say that my life has sucked. It hasn't. But I've had to accept some limitations.
I believe that the most important thing to realize is that chronic disease is not a sprint but a marathon. This is not something where he's not doing well means that the treatment isn't working; he doesn't need to see the doctor every time it flares up. This is not something that can be cured; it can only be endured, and managed. Settling on the best treatment can be a months-long process. If nothing else it will teach patience.
Even under the best circumstances, where he's getting the best treatment, this is going to affect his life. He's going to need some time to adjust to it, to come to terms with it, to accept it. Morale is a big factor in managing diseases like this.
To be honest, I consider a lot of the diet-related advice around inflammatory diseases to be woo-woo, with such benefits as are perceived coming from the placebo effect. Definitely don't go experimenting willy-nilly: there's a real risk of doing more harm than good, with false positives eliminating foods from his diet that don't need to be eliminated and that moreover really shouldn't be. At the very least be careful.
For example, for my disease there's something going around called the no-starch diet; it's based on a premise that is not only unproven but biologically can't work. People who've tried it say that they thought it worked, but they had to stop because they were losing too much weight. There are, I think, two reasons why it worked for them. One, losing weight is a good thing when you're dealing with rheumatic conditions, because being overweight is hard on the frame. And two, the placebo effect, which is definitely a thing when dealing with autoimmune disease. (See also: morale.)
With conditions like his and mine, people are often in very rough shape and are desperate for a fix, especially when they're not getting proper medical care (see: U.S. health system; see also: biologics coverage). Feeling powerless is understandable. Diet is something that's under their control. Whereas seeing a rheumatologist -- there are never enough of them, and you can never get enough of their time. (I'd kill for a two-day turnaround with my rheumatologist.)
Think long-term. Be patient. Hang in there.
posted by mcwetboy at 3:48 PM on April 24, 2012 [1 favorite]
Don't count on it "getting better" -- that's not how this works. That's the wrong question. There will be good days and bad days and plenty of meh in between. I've had to deal with my disease for nearly 15 years; on balance it sucks, because I've been in at least some pain almost every day during that time. But that's not to say that my life has sucked. It hasn't. But I've had to accept some limitations.
I believe that the most important thing to realize is that chronic disease is not a sprint but a marathon. This is not something where he's not doing well means that the treatment isn't working; he doesn't need to see the doctor every time it flares up. This is not something that can be cured; it can only be endured, and managed. Settling on the best treatment can be a months-long process. If nothing else it will teach patience.
Even under the best circumstances, where he's getting the best treatment, this is going to affect his life. He's going to need some time to adjust to it, to come to terms with it, to accept it. Morale is a big factor in managing diseases like this.
To be honest, I consider a lot of the diet-related advice around inflammatory diseases to be woo-woo, with such benefits as are perceived coming from the placebo effect. Definitely don't go experimenting willy-nilly: there's a real risk of doing more harm than good, with false positives eliminating foods from his diet that don't need to be eliminated and that moreover really shouldn't be. At the very least be careful.
For example, for my disease there's something going around called the no-starch diet; it's based on a premise that is not only unproven but biologically can't work. People who've tried it say that they thought it worked, but they had to stop because they were losing too much weight. There are, I think, two reasons why it worked for them. One, losing weight is a good thing when you're dealing with rheumatic conditions, because being overweight is hard on the frame. And two, the placebo effect, which is definitely a thing when dealing with autoimmune disease. (See also: morale.)
With conditions like his and mine, people are often in very rough shape and are desperate for a fix, especially when they're not getting proper medical care (see: U.S. health system; see also: biologics coverage). Feeling powerless is understandable. Diet is something that's under their control. Whereas seeing a rheumatologist -- there are never enough of them, and you can never get enough of their time. (I'd kill for a two-day turnaround with my rheumatologist.)
Think long-term. Be patient. Hang in there.
posted by mcwetboy at 3:48 PM on April 24, 2012 [1 favorite]
I don't have Psoriatic Arthritis but I do have Ankylosing Spondylitis, which is a related disease. Both are seronegative Spondyloarthropathies which share many of the same issues and treatments. RA isn't as closely related but many of the treatments are the dame because they work by suppressing parts of the overactive immune system.
The Spondylitis Association of America was a great resource for me when I was diagnosed and the forums there were full of support for both people with AS and Psoriatic Arhritis.
Everyone above pretty much covered the meds, but as far as diet goes, there is a low/no starch diet that many people with Spondylitis find helps them greatly. It is pretty draconian - I tried it a few years ago, and wasn't able to stick with it long enough to see if it helped. I tried again a year ago after things got really bad and it has pretty much put my arthritis in remission. I now eat a low starch paleoish diet - I am able to eat dairy but many of the people I know on the diet cannot.
This is grossly simplified, but the reasoning behind the diet is that the presence of the microbe Klebsiella in large numbers has been correlated with disease activity in spondylitis. Klebsiella live off of starch, so taking the starch away kills them off and lowers inflammation. It is mainly for AS/Crohn's Colitis related arthritis but I know a few people with Psoriatic Arthritis that it helped. It seems to work better for people with the HLA-B27 gene (which about 60% of those with Psoriatic Arthritis have) which makes me wonder if there are differing mechanisms/triggers behind the same disease/symptoms for different people.
You already sound like you are being awesomely supportive of your husband. I'm sorry you guy's have to deal with this. Auto-immune diseases suck.
posted by Lapin at 3:56 PM on April 24, 2012 [2 favorites]
The Spondylitis Association of America was a great resource for me when I was diagnosed and the forums there were full of support for both people with AS and Psoriatic Arhritis.
Everyone above pretty much covered the meds, but as far as diet goes, there is a low/no starch diet that many people with Spondylitis find helps them greatly. It is pretty draconian - I tried it a few years ago, and wasn't able to stick with it long enough to see if it helped. I tried again a year ago after things got really bad and it has pretty much put my arthritis in remission. I now eat a low starch paleoish diet - I am able to eat dairy but many of the people I know on the diet cannot.
This is grossly simplified, but the reasoning behind the diet is that the presence of the microbe Klebsiella in large numbers has been correlated with disease activity in spondylitis. Klebsiella live off of starch, so taking the starch away kills them off and lowers inflammation. It is mainly for AS/Crohn's Colitis related arthritis but I know a few people with Psoriatic Arthritis that it helped. It seems to work better for people with the HLA-B27 gene (which about 60% of those with Psoriatic Arthritis have) which makes me wonder if there are differing mechanisms/triggers behind the same disease/symptoms for different people.
You already sound like you are being awesomely supportive of your husband. I'm sorry you guy's have to deal with this. Auto-immune diseases suck.
posted by Lapin at 3:56 PM on April 24, 2012 [2 favorites]
Heh, didn't read the above answer on preview. I'm pretty much the least "woo" person I know, but the low starch diet has been a lifesaver for me. I'm pretty sure it's not placebo since it was independent of weight loss for me and all of my biomarkers improved. I previously failed Sulfasalazine and Humira - which is what lead me to finally try the diet. Quite honestly, I really didn't want it to work because bread and potatoes are awesome and were pretty much my main food group before going no starch. All this to say - yes, diets can be woo-woo, but it is free and unless you are doing something crazy with it, fairly low risk.
posted by Lapin at 4:19 PM on April 24, 2012
posted by Lapin at 4:19 PM on April 24, 2012
if supplementing with turmeric, make sure you get some black pepper (or any other color, as long as they are the pepper corn kind, not the chili kind) at the same time. It increases exponentially the bio-availability of turmeric's healing properties.
Creamy turmeric tea, with a whole lot of ginger, helps sooth inflammation.... but takes some getting used to!
posted by Neekee at 5:17 AM on April 25, 2012
Creamy turmeric tea, with a whole lot of ginger, helps sooth inflammation.... but takes some getting used to!
posted by Neekee at 5:17 AM on April 25, 2012
I'm a 37-year-old female who's had PA for about five years, misdiagnosed for a couple of years (which is common). Speaking from experience with this disease, I'll echo what I think are the most important issues mentioned above and share some others:
1) Diet: I don't believe anti-inflammatory diets are entirely "woo woo" BUT, and these are very big BUTs: A) There is, unfortunately, really not enough scientific evidence to definitively say what works and what doesn't. You'll find a whole host of different types of diets being promoted for autoimmune diseases. If you go that route, it will be a matter of trial and error, and testing what works and what doesn't for your husband. And you need to be prepared that nothing will work. For example, re: the gluten-free diet, what little scientific evidence there is suggests that about 15-16% of psoriasis patients have an allergy to gluten. I personally don't find these statistics very encouraging, esp. when you factor in that these were psoriasis patients and we PA patients are somewhat unique even from P patients. I can say, only anecdotally from several years in the National Psoriasis Foundation online community, that it seems those who are helped by specific diets are more likely to have P, not PA, and in both cases are more likely to have milder cases. That's purely anecdotal. B) This is a REALLY IMPORTANT BUT: Psoriatic Arthritis is known to be a progressive, degenerative disease, with damage that is not reversible. I don't say this to lessen any other autoimmune disease or psoriasis, but rather to point out the risk of not treating PA, specifically. Irreversible damage can happen within a few months (I'm living, deformed proof). If you do go the diet route, I highly recommend only doing so while on other medications like MTX or a biologic.
2) For support for you and/or your husband, I recommend the online community of the National Psoriasis Foundation. It's not perfect, but it's the only place I've found to connect with other people with PA (there aren't many of us to begin with). It's been valuable moral support to me, and also helpful in getting advice on treatment.
http://www.inspire.com/groups/talk-psoriasis/
3) This disease does suck. I actually think it's important to accept that and say that (sometimes). One of my biggest challenges is finding the right balance between sharing my low moments and complaining too much, if that makes sense. I certainly believe it's important to keep a positive attitude overall BUT at the same time, I think it's important to accept that this is a big, permanent life change, and yes, it sucks! Something as simple as saying to your husband, "Yes, this sucks" might actually be helpful. I think you'll find that most people will minimize the disease, either out of a lack of knowledge or a well-intentioned desire to make your husband feel better, but for me personally, it has the opposite effect. So SOMETIMES the best thing you can do is acknowledge the suckiness for a bit.
4) The last thing I'll say now is that I've found that educating myself has been extremely helpful, and empowering. I was in denial for probably two full years. Denial is not a good place to be for many reasons but many of us with PA go through a denial stage. Once you've gotten past that, making yourself fully informed about PA will help in virutally every way. I recommend the National Psoriasis Foundation as the starting point for educating yourself. Also ask your rheumatologist for additional information sources, and local support groups as well (even an RA group might help, and they're more common). There aren't many, but you never know. Connecting with people who know what you're going through is priceless.
GOOD LUCK! Just asking for help indicates you're on the right track to being a supportive spouse, so good for you, and lucky for your husband!
posted by eesullivan at 6:23 AM on April 25, 2012 [2 favorites]
1) Diet: I don't believe anti-inflammatory diets are entirely "woo woo" BUT, and these are very big BUTs: A) There is, unfortunately, really not enough scientific evidence to definitively say what works and what doesn't. You'll find a whole host of different types of diets being promoted for autoimmune diseases. If you go that route, it will be a matter of trial and error, and testing what works and what doesn't for your husband. And you need to be prepared that nothing will work. For example, re: the gluten-free diet, what little scientific evidence there is suggests that about 15-16% of psoriasis patients have an allergy to gluten. I personally don't find these statistics very encouraging, esp. when you factor in that these were psoriasis patients and we PA patients are somewhat unique even from P patients. I can say, only anecdotally from several years in the National Psoriasis Foundation online community, that it seems those who are helped by specific diets are more likely to have P, not PA, and in both cases are more likely to have milder cases. That's purely anecdotal. B) This is a REALLY IMPORTANT BUT: Psoriatic Arthritis is known to be a progressive, degenerative disease, with damage that is not reversible. I don't say this to lessen any other autoimmune disease or psoriasis, but rather to point out the risk of not treating PA, specifically. Irreversible damage can happen within a few months (I'm living, deformed proof). If you do go the diet route, I highly recommend only doing so while on other medications like MTX or a biologic.
2) For support for you and/or your husband, I recommend the online community of the National Psoriasis Foundation. It's not perfect, but it's the only place I've found to connect with other people with PA (there aren't many of us to begin with). It's been valuable moral support to me, and also helpful in getting advice on treatment.
http://www.inspire.com/groups/talk-psoriasis/
3) This disease does suck. I actually think it's important to accept that and say that (sometimes). One of my biggest challenges is finding the right balance between sharing my low moments and complaining too much, if that makes sense. I certainly believe it's important to keep a positive attitude overall BUT at the same time, I think it's important to accept that this is a big, permanent life change, and yes, it sucks! Something as simple as saying to your husband, "Yes, this sucks" might actually be helpful. I think you'll find that most people will minimize the disease, either out of a lack of knowledge or a well-intentioned desire to make your husband feel better, but for me personally, it has the opposite effect. So SOMETIMES the best thing you can do is acknowledge the suckiness for a bit.
4) The last thing I'll say now is that I've found that educating myself has been extremely helpful, and empowering. I was in denial for probably two full years. Denial is not a good place to be for many reasons but many of us with PA go through a denial stage. Once you've gotten past that, making yourself fully informed about PA will help in virutally every way. I recommend the National Psoriasis Foundation as the starting point for educating yourself. Also ask your rheumatologist for additional information sources, and local support groups as well (even an RA group might help, and they're more common). There aren't many, but you never know. Connecting with people who know what you're going through is priceless.
GOOD LUCK! Just asking for help indicates you're on the right track to being a supportive spouse, so good for you, and lucky for your husband!
posted by eesullivan at 6:23 AM on April 25, 2012 [2 favorites]
Response by poster: You guys, thank you so much. One clarification: by "will it get better," I don't mean "will he be cured," I mean "will he someday be less limited than he is now." And it sounds like the answer is yes, which is good. He has no intention of going off the DMARDs; he is lucky enough to have very few side effects from the MTX so far, and the studies I've read have demonstrated very clearly why MTX is part of the gold standard treatment.
It sounds like he was lucky to get a diagnosis so soon; he started getting symptoms back in August, his doctor hoped it was tendinitis, but alas no. He went back to the doc in mid-March, where they ran a crapload of bloodwork, and the ARNP who was cataloging his joint pain noticed what we had THOUGHT was his horrible intractable dandruff and put two and two together. She wrote him a referral and he was able to be seen by the rheum in early April.
The one thing that is hard to balance for me is that he's very private about his pain, which varies a lot. I have a difficult time knowing how much to press him, because I don't want to make him feel like he's living in a fishbowl but I also don't want to just let him suffer in silence when I could help. I did manage to convey to him that when he needs my help opening jars or whatever, that I consider that to be an opportunity to repay him for 16 years and counting of him getting me that thing off that shelf. (I'm very short.) IOW, this is just something that partners do for each other, it has nothing to do with him being broken or anything.
I struggled with depression a lot in the early part of our relationship, and he was always there with me, not letting me wallow or get away with stuff but genuinely supporting me when I was having a hard time. I always knew he would have my back and would encourage me to do the hard work to get better. That's what I want to do for him, and wow, I have so much respect for the good partner he was in those days, because this shit is HARD.
posted by KathrynT at 10:11 AM on April 25, 2012 [1 favorite]
It sounds like he was lucky to get a diagnosis so soon; he started getting symptoms back in August, his doctor hoped it was tendinitis, but alas no. He went back to the doc in mid-March, where they ran a crapload of bloodwork, and the ARNP who was cataloging his joint pain noticed what we had THOUGHT was his horrible intractable dandruff and put two and two together. She wrote him a referral and he was able to be seen by the rheum in early April.
The one thing that is hard to balance for me is that he's very private about his pain, which varies a lot. I have a difficult time knowing how much to press him, because I don't want to make him feel like he's living in a fishbowl but I also don't want to just let him suffer in silence when I could help. I did manage to convey to him that when he needs my help opening jars or whatever, that I consider that to be an opportunity to repay him for 16 years and counting of him getting me that thing off that shelf. (I'm very short.) IOW, this is just something that partners do for each other, it has nothing to do with him being broken or anything.
I struggled with depression a lot in the early part of our relationship, and he was always there with me, not letting me wallow or get away with stuff but genuinely supporting me when I was having a hard time. I always knew he would have my back and would encourage me to do the hard work to get better. That's what I want to do for him, and wow, I have so much respect for the good partner he was in those days, because this shit is HARD.
posted by KathrynT at 10:11 AM on April 25, 2012 [1 favorite]
One lesson I learned is that there is a pattern to my week. I work officey type stuff during the week. Do some chores on Saturday - and can be wiped so that I can't do much on Sunday. It's not that there's a huge amount of pain (compared to before treatment), but generalized not quite able-to-keep-up-ness. This is hard for my wife to understand, given that for six days of seven, the treatment has been revolutionary. If you are able to show your husband that you can understand that (or whatever pattern emerges) pro-actively, then that will itself be invaluable support for him.
posted by blue_wardrobe at 8:53 PM on April 25, 2012
posted by blue_wardrobe at 8:53 PM on April 25, 2012
Response by poster: An update: It is getting better.
He doesn't have to have me shut off the shower any more -- his hands are strong enough now that he can turn the taps all the way off, although it hurts. He can open his own pill bottles, and his own beer bottle, and the giant jar of peanut butter. He can get laundry out of the washing machine into the dryer, and he can fasten our son into his car seat, and he cleared the north side of the house of blackberry vines. None of those things is pain-free, but he can DO them.
In addition, his psoriasis -- which is weird, it's only on his scalp and in the beds of his toenails -- is improving. His toenails were badly pitted, but if you look at them now, the pits start halfway up the nail; they're growing in normally. And he thinks his body is in shape now to start commuting by bicycle again, at least a little.
I don't want to minimize his condition; he's still in quite a bit of pain. But the MTX really seems to be making a difference.
posted by KathrynT at 6:07 PM on June 13, 2012
He doesn't have to have me shut off the shower any more -- his hands are strong enough now that he can turn the taps all the way off, although it hurts. He can open his own pill bottles, and his own beer bottle, and the giant jar of peanut butter. He can get laundry out of the washing machine into the dryer, and he can fasten our son into his car seat, and he cleared the north side of the house of blackberry vines. None of those things is pain-free, but he can DO them.
In addition, his psoriasis -- which is weird, it's only on his scalp and in the beds of his toenails -- is improving. His toenails were badly pitted, but if you look at them now, the pits start halfway up the nail; they're growing in normally. And he thinks his body is in shape now to start commuting by bicycle again, at least a little.
I don't want to minimize his condition; he's still in quite a bit of pain. But the MTX really seems to be making a difference.
posted by KathrynT at 6:07 PM on June 13, 2012
This thread is closed to new comments.
Anti-inflammatory diets are not just woo, though the science behind them is still quite preliminary so everyone's in a situation of doing their own biochemistry experiment. (Think of them as equivalent to low-glycemic-index diets for people with insulin issues, rather than as something like macrobiotics.) This book is pretty good; the author is a very smart cardiologist who doesn't make grandiose promises (despite the garbage cover copy).
I have an undiagnosed inflammatory issue that affects my joints (maybe rheumatoid arthritis, maybe not) and the anti-inflammatory diet has helped me modulate the pain and stiffness. Cymbalta and Lyrica are both gold standard treatments for any chronic pain issue.
Supplementing with turmeric, cinnamon, and other herbal anti-inflammatories has some research backing up its efficacy with some issues, and it's a low-risk, fairly low-cost intervention to experiment with. My doctor recommended this supplement, which the rheumatologist doubled down on and added this; another doctor friend who has arthritis herself just takes turmeric spice in her food or mixed in water every day, so if investing in those seems like too much for an experimental trial, that's another option.
Has your husband been evaluated for celiac disease? I don't know if this is her anecdotal clinical experience or if it's backed up by research, but my rheumatologist says she sees a lot of people with celiac symptoms that mimic arthritis, so it's one of the first things she orders.
posted by Sidhedevil at 10:33 AM on April 24, 2012 [2 favorites]