Wife stopped prednisone, swelling way up despite other meds, new diganosis?
August 22, 2009 8:38 AM Subscribe
My wife went off of one medication for arthritis and it made a huge difference, even though the other two meds didn't. She is getting a second opinion. What else might she have? (you are not a doctor)
My 32 year old wife was told she has rheumatoid arthritis after she had pain in her joints and swelling (she actually gained weight she was so swollen). The doctor put her on Prednisone (5 mg) as well as Hydroxychloroquine and diflunisal. She was told to stop taking the prednisone after, I think like 3-4 months. While she was on it the swelling went totally away, she didn't hurt and had more energy. Since she has come off it the swelling is returning (3 weeks after being off it), as has the tired and the pain. She IS STILL on the other two arthritis meds but without the prednisone they seem to be making no difference. She was already planning on getting a second opinon, but this makes me even more suspicious it was a wrong diag or at least the wrong meds.
She also was having dry skin problems as original symptoms and that has also returned (flakey scalp and stuff) with the removal of the prednisone.
So what else might it be? Some weird allergy? She does has a nut allergy already, not severe but still.
My 32 year old wife was told she has rheumatoid arthritis after she had pain in her joints and swelling (she actually gained weight she was so swollen). The doctor put her on Prednisone (5 mg) as well as Hydroxychloroquine and diflunisal. She was told to stop taking the prednisone after, I think like 3-4 months. While she was on it the swelling went totally away, she didn't hurt and had more energy. Since she has come off it the swelling is returning (3 weeks after being off it), as has the tired and the pain. She IS STILL on the other two arthritis meds but without the prednisone they seem to be making no difference. She was already planning on getting a second opinon, but this makes me even more suspicious it was a wrong diag or at least the wrong meds.
She also was having dry skin problems as original symptoms and that has also returned (flakey scalp and stuff) with the removal of the prednisone.
So what else might it be? Some weird allergy? She does has a nut allergy already, not severe but still.
There are a lot of different kinds of arthritis; they're generally identified by symptoms. One of them does include psoriasis in its symptom set: "psoriatic arthritis" is the term for google purposes. If her diagnosis is atypical rheumatoid, i.e. no blood factor, it's quite possible it will change later. This happened to me.
Cortisone is nasty stuff. The side effects of steroids are why they want most patients on NSAIDs. The fact that they're having trouble pinning down a medication for her doesn't make the arthritis diagnosis bad, even if she doesn't have rheumatoid. It just means that they haven't found the right meds for her yet. Finding good medications is a long process. I call it "the pill dance" because it involves turns with a lot of partners. Changing medication is not an indication that the diagnosis is wrong.
Definitely check out every angle, including the allergies (also an autoimmune issue), and get a second opinion, but please don't rule out arthritis because the doctor doesn't want your wife on steroids long-term.
posted by immlass at 9:09 AM on August 22, 2009
Cortisone is nasty stuff. The side effects of steroids are why they want most patients on NSAIDs. The fact that they're having trouble pinning down a medication for her doesn't make the arthritis diagnosis bad, even if she doesn't have rheumatoid. It just means that they haven't found the right meds for her yet. Finding good medications is a long process. I call it "the pill dance" because it involves turns with a lot of partners. Changing medication is not an indication that the diagnosis is wrong.
Definitely check out every angle, including the allergies (also an autoimmune issue), and get a second opinion, but please don't rule out arthritis because the doctor doesn't want your wife on steroids long-term.
posted by immlass at 9:09 AM on August 22, 2009
Response by poster: @ imlass - good guess - she actually does not have a blood factor. Hence they decided she has RA via the medication working and the symptoms not by any actual successful test.
posted by IzzeYum at 9:15 AM on August 22, 2009
posted by IzzeYum at 9:15 AM on August 22, 2009
Autoimmune diseases are notoriously hard to diagnose - especially for women. I struggled with a few different diagnoses (RA, Fibromyalgia etc.) before I was finally diagnosed with the disease I actually have, Ankylosing Spondylitis.
I have been on both Prednisone and Hydroxycloroquine. Prednisone is a miracle drug for most inflammatory diseases, but is hell on your body long term - which is why her doctor wanted her to stop after a few months. The Hydroxycloroquine didn’t do anything for me but it generally doesn’t help with my disease. From my experience in Arthritis support groups it works for some people with RA but is ineffective at helping others. The Diflunisal is an NSAID that should help with inflammation, but might not be strong enough if she has severe symptoms.
The fact that the drugs other than Prednisone aren’t working could mean that she has something else, or that she just isn’t responsive to that particular medicine. I had to go through numerous drug combinations before I found a regime that helped. Often times, since autoimmune disease have such overlapping symptoms, a diagnosis is reached by judging response to various treatments.
As Solomon has mentioned above, Psoriatic Arthritis is a possibility - as are Spondylitis and many other inflammatory diseases. I think a second opinion is always a good idea.
I am sorry your wife and you are going through this. I hope she finds relief soon.
posted by Lapin at 9:16 AM on August 22, 2009 [1 favorite]
I have been on both Prednisone and Hydroxycloroquine. Prednisone is a miracle drug for most inflammatory diseases, but is hell on your body long term - which is why her doctor wanted her to stop after a few months. The Hydroxycloroquine didn’t do anything for me but it generally doesn’t help with my disease. From my experience in Arthritis support groups it works for some people with RA but is ineffective at helping others. The Diflunisal is an NSAID that should help with inflammation, but might not be strong enough if she has severe symptoms.
The fact that the drugs other than Prednisone aren’t working could mean that she has something else, or that she just isn’t responsive to that particular medicine. I had to go through numerous drug combinations before I found a regime that helped. Often times, since autoimmune disease have such overlapping symptoms, a diagnosis is reached by judging response to various treatments.
As Solomon has mentioned above, Psoriatic Arthritis is a possibility - as are Spondylitis and many other inflammatory diseases. I think a second opinion is always a good idea.
I am sorry your wife and you are going through this. I hope she finds relief soon.
posted by Lapin at 9:16 AM on August 22, 2009 [1 favorite]
I cannot help with the arthritis question, but you should factor in a couple of things about prednisone.
Regardless of diagnosis, prednisone will decrease swelling, decrease inflammation (and consequently, pain), and increase energy. It will help rashes improve, and generally do everything but wax the kitchen floor for you.
So, response to prednisone will not help with making a diagnosis.
In addition, like all wonderful things, it has some extremely bad long term consequences. including cataracts, infection, bone loss, and joint destruction. So be wary.
Prednisone will mask symptoms of ongoing problems. So it seems entirely possible that the diagnosis is correct, the others meds aren't helping much, and the prednisone kept her feelilng good while she was on it.
I am glad I'm not a doctor, because diagnosing these things can be so tricky. I do think you are right to get a second opinion, but be sure to go back to the original doctor as well and get his/her recommendations. It can take a lot of 'tweaking' to find the combination of drugs that works.
Best of luck to her!
posted by SLC Mom at 9:20 AM on August 22, 2009
Regardless of diagnosis, prednisone will decrease swelling, decrease inflammation (and consequently, pain), and increase energy. It will help rashes improve, and generally do everything but wax the kitchen floor for you.
So, response to prednisone will not help with making a diagnosis.
In addition, like all wonderful things, it has some extremely bad long term consequences. including cataracts, infection, bone loss, and joint destruction. So be wary.
Prednisone will mask symptoms of ongoing problems. So it seems entirely possible that the diagnosis is correct, the others meds aren't helping much, and the prednisone kept her feelilng good while she was on it.
I am glad I'm not a doctor, because diagnosing these things can be so tricky. I do think you are right to get a second opinion, but be sure to go back to the original doctor as well and get his/her recommendations. It can take a lot of 'tweaking' to find the combination of drugs that works.
Best of luck to her!
posted by SLC Mom at 9:20 AM on August 22, 2009
Might she have gout? Prednisone is often prescribed to control symptoms of gout, as it seems to be effective at reducing swelling. Gout can often look like arthritis, although it has different underlying causes. (see the link up there)
posted by whimsicalnymph at 9:23 AM on August 22, 2009
posted by whimsicalnymph at 9:23 AM on August 22, 2009
I had the same diagnosis and the same meds (although a different NSAID) and had more or less the same response. What worked for me was cutting gluten out of my diet. It wasn't a 100% improvement, but it was definitely about an %80 improvement. Worth a shot, I'd say!
posted by restless_nomad at 10:01 AM on August 22, 2009
posted by restless_nomad at 10:01 AM on August 22, 2009
IANAD(Y), but the rheumatologists around here are of the opinion that everyone diagnosed with RA should be on methotrexate. That has its own set of complications, as you can imagine, and some people don't tolerate it well, but apparently it's believed to work well at limiting the course of the disease. It might be helpful to test for anti-citrullinated protein antibodies, since they're a bit more specific for RA than the rheumatoid factor test. My advice: find a good rheumatologist. They're worth their weight in gold (and that's not including the gold that they prescribe!)
posted by greatgefilte at 10:17 AM on August 22, 2009
posted by greatgefilte at 10:17 AM on August 22, 2009
Prednisone is beautiful, isn't it. The day I got my script I couldn't walk or hold my kids without pain, two days later I was bouncing around and packing my house to move. But it only treats the symptom of inflammation, not the underlying cause. Relying on it won't stop the progression of the disease, and it has nasty long term side effects. It'd be like continually painting over water stains on the ceiling, and meanwhile the leaky roof was rotting away your attic.
Next question, what's the disease? Even if it isn't RA, it's probably another auto-immune disease, so I strongly second seeing a good rheumatologist. Someone who you can communicate with and who will really explain the test results and the options she has.
Has she only gone to this doc for the original diagnosis? She needs to be getting regular follow-up to find the drugs that will work. It is common for docs to start with the most basic drugs, and then keep stepping up the level until the patient gets full relief. My Insurance company even required that I "fail" at two common, cheap drugs before I could be prescribed Enbrel or Humira. So push for a stronger drug, like Methotrexate, and see what kind of relief she gets from that.
posted by saffry at 10:58 AM on August 22, 2009
Next question, what's the disease? Even if it isn't RA, it's probably another auto-immune disease, so I strongly second seeing a good rheumatologist. Someone who you can communicate with and who will really explain the test results and the options she has.
Has she only gone to this doc for the original diagnosis? She needs to be getting regular follow-up to find the drugs that will work. It is common for docs to start with the most basic drugs, and then keep stepping up the level until the patient gets full relief. My Insurance company even required that I "fail" at two common, cheap drugs before I could be prescribed Enbrel or Humira. So push for a stronger drug, like Methotrexate, and see what kind of relief she gets from that.
posted by saffry at 10:58 AM on August 22, 2009
Try removing lectins from the diet, from BMJ editorial in 1999
"Another suspect lectin disease is rheumatoid arthritis. The normal human IgG molecule possesses carbohydrate side chains, which terminate with galactose. In rheumatoid arthritis much of the galactose is missing, so that the subterminal sugar---N-acetyl glucosamine---is exposed instead. These deficient IgG molecules feature strongly in the circulating immune complexes that cause fever and symptoms.12 In diet responsive rheumatoid arthritis one of the commonest trigger foods is wheat, and wheat lectin is specific for N-acetyl glucosamine---the sugar that is normally hidden but exposed in rheumatoid arthritis. This suggests that N-acetyl glucosamine oligomers such as chitotetraose (derived from the chitin that forms crustacean shells) might be an effective treatment for diet associated rheumatoid arthritis. Interestingly, the health food trade has already siezed on N-acetyl glucosamine as an antiarthritic supplement"posted by zentrification at 11:29 AM on August 22, 2009
IzzeYum, I'm really not surprised to hear she's atypical rheumatoid as an initial diagnosis. Symptom clusters and a limited number of blood tests (Rheumatoid factor and HLA-B27) seem to be the big diagnostic tools because underlying cause (genetic/environmental/etc.) and disease effect aren't well understood even now in arthritis.
I was assuming she's been to a rheumatologist but if not, that's where you guys need to head next. Arthritis is chronic and you need ongoing treatment to deal with it. I go every 6 months or so, more frequently if I'm having problems. I'm a maintenance patient now, but when I was young and first finding out what was wrong with me, I was in more often than that, usually because my meds weren't working well or were causing bad side effects. For a while I was trading meds every 6 weeks or so until I found something that worked well enough and had side effects I could live with. I wish I could say they'll find something quickly, but that's not always the case. Sometimes it takes a while.
posted by immlass at 1:21 PM on August 22, 2009
I was assuming she's been to a rheumatologist but if not, that's where you guys need to head next. Arthritis is chronic and you need ongoing treatment to deal with it. I go every 6 months or so, more frequently if I'm having problems. I'm a maintenance patient now, but when I was young and first finding out what was wrong with me, I was in more often than that, usually because my meds weren't working well or were causing bad side effects. For a while I was trading meds every 6 weeks or so until I found something that worked well enough and had side effects I could live with. I wish I could say they'll find something quickly, but that's not always the case. Sometimes it takes a while.
posted by immlass at 1:21 PM on August 22, 2009
If prednisone works, it's likely inflammation and probably autoimmune if there is seemingly no cause. Keep going to doctors until she finds one she like. Ask questions. Try supplemental treatments if she feels they are safe and thinks they might help, like the aforementioned changes in diet.
I have 4 different kinds of inflammation (2 classified as autoimmune), each treated by a different doctor. They're all treated pretty much the same, and only the inflammation is treated. Start with a drug that is most safe but least potent, e.g., an NSAID. If that doesn't work, move on to immunosuppressants trying to find one that works. Steroids are used for short periods of time to quickly get things under control when necessary. It can take time to find the right combination, even with just a single kind of inflammation. Make sure the doctor knows her actual level of discomfort so the treatment can be tailored accordingly.
Others have mentioned the possibility of the skin issues and arthritic issues being related, but they don't have to be. Another possibility is seborrheic dermatitis. A dermatologist can prescribe topical treatments to help in any case.
posted by mathlete at 1:57 PM on August 22, 2009
I have 4 different kinds of inflammation (2 classified as autoimmune), each treated by a different doctor. They're all treated pretty much the same, and only the inflammation is treated. Start with a drug that is most safe but least potent, e.g., an NSAID. If that doesn't work, move on to immunosuppressants trying to find one that works. Steroids are used for short periods of time to quickly get things under control when necessary. It can take time to find the right combination, even with just a single kind of inflammation. Make sure the doctor knows her actual level of discomfort so the treatment can be tailored accordingly.
Others have mentioned the possibility of the skin issues and arthritic issues being related, but they don't have to be. Another possibility is seborrheic dermatitis. A dermatologist can prescribe topical treatments to help in any case.
posted by mathlete at 1:57 PM on August 22, 2009
Don't know if this will help, but: I've got joint pain/swelling issues plus skin issues. Both are very localized. The joints affected are mainly wrists, certain fingers, and certain toes. I sometimes have all-over pain as well. I have skin issues mainly on my scalp, but also some other places on my body that will flare up at times. The skin issues predated the joint problems by about 7 years (skin issues started when I was 17, joint pain and swelling when I was about 24...I'm 34 now) . This was finally diagnosed as psoriatic arthritis when I was about 25, after many other misdiagnoses (RA, dermatitis, lupus, etc.) I've been treated with various medications with various success (and failure) over the years. If this is what your wife has, unfortunately there is no one wonderful drug to treat this. I've had the most success with methotrexate as it helped with both the joint and the skin issues, but it can be tough on your liver. I also do a fair amount of yoga, low-impact exercise, and get massage and acupuncture to manage the condition.
I hope your wife can find some answers and some piece of mind about her condition. I know how frustrating it can be to not know exactly what the hell is going on with your body.
posted by medeine at 2:11 PM on August 22, 2009
I hope your wife can find some answers and some piece of mind about her condition. I know how frustrating it can be to not know exactly what the hell is going on with your body.
posted by medeine at 2:11 PM on August 22, 2009
The TNF-a inhibitors actually are miracle drugs for many, many of us. But you do frequently have to fail methotextrate (for RA) or sulfasalazine (for AS and PA) before you get to try Enbrel, Humira, Remicade, or the brand new Simponi.
Like others have said, I went through what you wife is going through. It took about a year for me to reach a spondylitis diagnosis and another six months to start Enbrel, which, in conjunction with NSAIDS, muscle relaxers, and physical therapy, has given my life back.
Believe it or not, positive response to prednisone was the only way I could prove that my disabling pain and fatigue were not due to depression. That's what they mean by response to prednisone or NSAIDS being diagnostic--it proves you're not "just depressed" or lying about symptoms or whatever it is unsympathetic doctors think we women do.
posted by hydropsyche at 5:35 PM on August 22, 2009 [1 favorite]
Like others have said, I went through what you wife is going through. It took about a year for me to reach a spondylitis diagnosis and another six months to start Enbrel, which, in conjunction with NSAIDS, muscle relaxers, and physical therapy, has given my life back.
Believe it or not, positive response to prednisone was the only way I could prove that my disabling pain and fatigue were not due to depression. That's what they mean by response to prednisone or NSAIDS being diagnostic--it proves you're not "just depressed" or lying about symptoms or whatever it is unsympathetic doctors think we women do.
posted by hydropsyche at 5:35 PM on August 22, 2009 [1 favorite]
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posted by Solomon at 9:01 AM on August 22, 2009