What can you tell me about how to treat rheumatoid arthritis?

January 31, 2008 9:10 AM

My father has a severe case of rheumatoid arthritis. I’m hoping those of you who have arthritis or have loved ones who do will have some information to share.

My dad was first diagnosed 24 years ago, and is now 69 years old. He has unfortunately never been very good at either managing his medical care or at taking reasonable physical care of himself. It’s recently occurred to me that neither he nor any of my family has ever done any real research into his illness. I’m under no illusions that my doing research now will result in him being cured, but I am in hopes that his quality of life can be improved at least somewhat. This thread is my starting point for research, so I would like it to become a compendium of information on rheumatoid arthritis. I am hoping that any MeFites who have experience in dealing with arthritis will be willing to share their accounts of what worked and didn’t work for them, and/or point me to resources on the net and in southern Ontario (my parents live two hours from Toronto and 50 minutes from Kitchener).

To give you more specifics about my dad’s condition and history…

The medical care my father has received has been less than stellar. In the mid-eighties he was put on gold pills, which nearly killed him. He’s a 6’ man who was always a lean and muscular 190-195 pounds; the gold pills reduced him to 130 pounds and made him cough blood. It’s no exaggeration to say he looked like a concentration camp inmate. At that point he went to a naturopath, whose only effective method of treatment was to tell Dad to stop taking the gold pills.

Since then Dad periodically goes to a rheumatologist. The medications that the rehumatologist prescribes do work somewhat, but have horrific long-term side effects. He’s been told that the medication will make him go blind and give him cirrhosis of the liver. To quote my father, he’d “rather be crippled than half-crippled and blind”. So his practice has been to avoid taking the medication for as long as he can (i.e., until the arthritis is making it almost impossible for him to walk), then take it until he stops improving, then stop taking it until he’s worsened again.

At present he’s at that “worsened” point and has made a doctor’s appointment to get a referral to the rheumatologist again. He has had a CCP test within the past few months. If I’ve got this right, an arthritis level of “4” is considered under control; his tested at “20”.

His knees are quite badly affected and he has been told he needs knee replacements but it’s obviously something he doesn’t particularly look forward to and so hasn’t agreed to it so far. His feet are quite deformed, and he needs surgery on one toe in particular that sticks up and gets rubbed raw by his shoes. His hands are deformed as well, but not nearly as badly. He has had to give up wearing t-shirts because he has too hard a time getting them on and off. He has difficulty with buttons, and socks with too snug an elastic band. He has difficulty with climbing stairs (my family moved to a bungalow in 1989 because of this). He is fairly active despite this and always up for going anywhere. He is retired now, but he worked several years beyond the age of 65 because he enjoyed his job as a trucker. He does award-winning woodworking, though of course he has to pace himself at it. He can ride a bicycle because he has one with a 36” frame that doesn’t make it necessary for him to bend his knees much.

Dad also has had a chronic cough for the past decade or so. It’s always present, but several times a year it kicks into high gear and gets so bad that he coughs until he can’t breath and is vomiting. This cough may or may not be related to his arthritis, but it has defied treatment so far. (It also might be related to a broken nose he received in a trucking accident in 1993.) His lungs have been tested repeatedly and are always clear. His GP just keeps telling him it’s a virus and he’ll get over it, and prescribes antibiotics and inhalers. The inhalers seem to break up the worst of the cough, but it never really goes away.

Dad also sometimes gets horrible, itchy, open-sore rashes on his legs. He hasn’t had this rash for quite awhile and I’m pretty sure it’s a side effect of his medication.

A few days ago, knowing what an Internet fiend I am, Dad asked me to do research on possible causes and treatments for his cough. Since I think his cough may be related to his arthritis, I’m broadening my area of research. Any help or information you can give me will be appreciated. Thank you.

posted by orange swan to health & fitness (13 comments total)

I would go to on-line RA support groups as much as to on-line medical research. Try here, here, here. Search yahoo groups. The people living with RA will know a lot about strategies, medications, side effects, and it will be easier to get practical information from them. You could even join one of the groups as a "friend and family."

As far as I know, there's no new magic pill existing or on the horizon for RA. But there are treatments and strategies that people find helpful.
posted by ClaudiaCenter at 9:18 AM on January 31, 2008

Continuing ...

For example, a good RA on-line support group would have ideas or links for buying easy-to-wear but nice looking clothing. If the coughing is a side effect, they'll know about it.

Will he let another person accompany him to the rheumatologist? I'm wondering about his weighing of benefits against side effects.
posted by ClaudiaCenter at 9:23 AM on January 31, 2008

Sorry to hear of your dad's situation. You may want to try the alternative therapy/medicine route; my mum says that cod liver oil, for example, alleviated her arthritis enormously (see also: http://news.bbc.co.uk/2/hi/health/1817974.stm).
posted by low_horrible_immoral at 9:25 AM on January 31, 2008

I am not an expert by any means, and all I can do is relate my own experiences. I was dx'd with Lupus and RA in 1989. I have been regularly seeing a rheumatologist ever since to manage both diseases. I would suggest that your father continue to see a rheumy and forget about so-called natural or alternative treatments. I don't know how bad his RA was at the beginning, but I know my own rhemy only gave gold shots (not pills) in very bad cases of juvenile RA. (I asked him once because I overhead him ordering "gold" for someone on the intercom while I was in his office.) What meds was your dad given that were destined to make him go blind and kill his liver? And who told him that? Methotrexate is a common treatment for RA and has some history of liver toxicity, but supplements of folic acid and careful monitoring usually prevent any serious damage. Even though RA is not an infection per se, in recent years antibiotic treatment (usually with Minocin) has proven effective in patients; if you search some of the RA message boards, you'll see stories from patients who were previously using wheelchairs exclusively who were able to walk and push open heavy doors after several months of Minocin therapy. In very recent years, Thalidomide has been successfully used to treat severe cases of RA; however, due to the controversial history of the drug, it involves a lot of red tape to get a prescription. But it's worth asking your father's rheumy about all possible treatment paths, so maybe mention it at his next visit. And if at all possible, please accompany your dad to his next one or two rheumy appointments and talk to the doctor. Sometimes older people (my dad is one) hear only what they want to hear, and possible side effects translate to them as "THIS WILL HAPPEN TO YOU." Best of luck to both of you.
posted by Oriole Adams at 10:02 AM on January 31, 2008

I don't have RA, so this is all going to be non-specific. But there are some general similarities in dealing with autoimmune diseases.

I definitely agree about someone going with him to the rheumatologist. Also, before he goes he should write out a list of questions he has for the doctor. The person who goes with him should have a copy of the list of questions and should take notes on each of the answers. At the end of the appointment, if any of the questions haven't been answered, the accompanying person should bring them up.

The first thing you need to do is make a list of all the treatments he's tried: the names of the drugs and the doses. It's possible that the doctor could try lower doses. The drugs wouldn't work as well, but the side effects also probably wouldn't be as bad. There may also be some drugs he hasn't tried.

He also needs to make a list of all of his symptoms. The cough, the rash, everything. If he can give approximate dates and frequency, that would be great, too. From here on out, he should keep a symptom diary, too. That should make it easier to figure out what's a side effect of medication and what's an independent problem. He should present his list of symptoms to the rheumatologist. Autoimmune diseases are tricky, complicated things, and they tend to overlap. It's possible that the rheumatologist has been so focused on the RA diagnosis that he or she is missing something else.

I really agree that support groups are good sources of information. I think a lot of men, in particular, don't want to try them, because they think it's all about talking about your feelings, but they're also a good way to get the skinny on who the best doctors are and ideas for ways to adapt your house and clothes and stuff.

Good luck with this.
posted by craichead at 10:14 AM on January 31, 2008

There are a couple of new injectable drugs for treating RA, Enbrel and Remicade. The former has been given to me as an option for treating the type of arthritis I have (not RA). They're supposed to be pretty amazing, but extremely expensive and not without their side effects either. I take a much cheaper, older drug to manage my arthritis, a low dose of methotrexate. That's an option for RA too, but also has many side effects.

That is great that your dad can bike. A bit of swimming or aqua-aerobics can be really good for arthritis too, since the joints don't experience much impact. Yoga can be good too.

I've found acupuncture and gentle massage give some short-term relief.

I've also had a couple of sessions with a physical therapist, who gave me some exercises to do, as well as a catalog of home aids that help with day to day tasks.

An anti-inflammatory diet may help too. It is fairly strict: basically no red meat, dairy, wheat, nightshade vegetables (like tomatoes), and refined foods. I've only been able to cut down on those foods rather than cut them out completely, but I've tried to add more of the good foods, i.e. ones rich in omega 3 fatty acids and vitamins A, C, and E.
posted by medeine at 10:17 AM on January 31, 2008

I know a few people (online) who had great improvement after following the Eat To Live diet from Dr Fuhrman.
posted by davar at 10:25 AM on January 31, 2008

I do have RA, and have been dealing with a moderate case for a few years. I've done a LOT of research into it.

First of all, the damage that he's done so far is permanent. Nothing will undo the joint damage. Joint replacements are his only option. That's why you start treatment early, treat it aggressively and hope for the best.

Gold pills are not a freakish treatment. Some people take them with some success. However, there are a lot of other options now.

I've been told diet has no real impact on RA. I don't know. What I eat doesn't seem to affect me one way or the other. Stress has a huge impact. Reduce stress, both physical and mental, as much as possible. Enough sleep is critical. Obviously, joint pain can prevent sleep. It's an ongoing problem.

We're all given the same choice - do we treat RA aggressively, risking bone damage, blindness, cancer, liver damage, etc. - or do we end up totally crippled at an early age. At this point, if your dad wants to stop the progression of RA, he really will need something stronger than MTX (methotrexate), or gold pills, or any of those drugs. He'll probably need a cocktail of one of the biologics (Remicade, Humira, Enbrel, or Orencia) and something else. He should be on prednisone to control swelling.

These drugs are prohibitively expensive. If he has good insurance, it's a struggle to get them covered, but they will eventually be covered. Otherwise, you're looking at bills of $2,000 - $4,000 per month. Some of the drug companies provide the drugs for free to people who cannot afford them.

RA does affect your heart and your lungs. It can affect your skin. It is, generally, inflammation. Usually, it manifests itself as joint inflammation, but it can also be organ inflammation. Pneumonia and heart problems are common. It can affect your eyes. It can strike any joint at any time, usually works in pairs i.e. both hips, both knees, both wrists.

Your life expectancy is decreased by several years. It's a miserable disease. It is much better to have now than it was a decade ago, when treatments were few.

Urge your father to get treatment now and to stay on it. Random bouts of medication do nothing for his overall joint health. My mother went his route, and she died in agony. They cannot undo the damage he has done to himself, but they might make life a little easier for the future. Otherwise, it is going to get much, much worse, and he will be a total invalid soon.

Wish I had a more hopeful prognosis.
posted by clarkstonian at 10:42 AM on January 31, 2008 [1 favorite]

Funny you should ask. I just got back from meeting with my Rheumatoloigist. I'm in my third year of R.A., I've been taking Methotrexate for that time, and I'm about to start my fourth "Biologic" treatment in hopes of finding the magic bullet.

What your father really needs to understand is that R.A. treatment is NOTHING like it was 24 years ago. Great strides are being made, and we're hoping for better ones. But he will miss out if he isn't in regular contact with a Rheumatologist.

Yes, Methotrexate is known to cause liver damage, but all I need to do is to get a blood test every two months to monitor Bilirubin levels. If they're elevated, then I can stop the MTX and there won't be any permanent damage. So he shouldn't fear that as a treatment. (not to discount other possible side effects, but it's a regularly prescribed drug that does more good than harm)

Second, the biologics are doing wonderful things. One of the newest, Orencia, can actually reverse some of the damage. I don't know the ins and outs of the Provinces medical care, but he'll probably have to try regular treatment with Methotrexate and maybe one or two of the less expensive drugs before he'd be approved for Enbrel, Humira, Rituximab. etc. But I seriously urge him to try now. I can't imagine how hard life will be for him if he lets his hands become permanently damaged the way his knees are now. That's my biggest fear, and the reason I'm continuing a search for a treatment that will let me start every day without any stiffness or pain. Humira is next for me.

The Arthritis foundation has an active forum, divided between the newly diagnosed and those who have chronic problems from missed or old diagnosis.

This Johns Hopkins site has a lot of good info. I bought their book when diagnosed, but it's already outdated just two years later.

I was very freaked out when first diagnosed, only 35 with two young children. And to hear that it's incurable. If it'd been twenty-five years ago I may have given up hope of treatment too. But a lot of research money is being poured into this disease, so if he can stave off damage a little longer, there are hopefully even better drugs on the horizon.
posted by saffry at 3:13 PM on January 31, 2008

The most important thing is for him to get a rheumatologist that he trusts and gets along well with. Younger doctors seem more aware of the latest treatments. That's a broad generalization, but this is a field that is changing so fast. You do have to make a commitment. As Saffry says, there are blood tests every month. You have to be willing to have injections/infusions. Staying on top of RA is very time consuming. Letting it slide is easy.

I had a severe reaction to the MTX, by the way, and not a standard one. It's a very good drug and helped me for a while. These drugs really are all dangerous. They have to be monitored.

Since he was diagnosed years ago and has sustained severe joint damage, I doubt your dad would have to wait long to get one of the biologics.


If you really want to help him, go with him to one of his appointments. Ask the questions he won't ask. If the doctor can't answer, or you aren't happy with him/her, please encourage your dad to find someone else.
posted by clarkstonian at 3:35 PM on January 31, 2008

Listen to what the people above have said.

It sounds to me like your dad is in desperate need of an advocate and someone who can push him to do go ahead and make good on what's best for him. It's true that any drug may potentially have side effects, some severe. But without at least understanding the statistical risks of complications from therapy, your dad has probably forgone treatment that could have prevented all the mangling in his joints that you can now see. At this point as others have noted, there isn't a magic pill that can reverse the damage anymore, but there are plenty of options to limit progression. And I can assure you, his disease will progress and get much worse if he does nothing about it.

Putting it in simple terms, you are faced with a choice between treating an active problem and taking a small risk of treatment complications (which can be easily monitored for with regularly blood tests and follow-up), versus doing nothing and the extreme likelihood of his RA progressing. To me, that's a no-brainer, but the only way to overcome the fear of the unknown (treatment/medications), is to educate yourself and find a rheumatologist he trusts. If he's going to go to a doctor and ignore the advice he's given or half-heartedly take medications whenever he feels like it, that just ain't gonna fly.
posted by drpynchon at 4:13 PM on January 31, 2008

Just to add my husband takes Enbrel for his psoriasis (it's also prescribed for RA, as mentioned above). It is horrendously expensive, but his was covered by health insurance-thank god, as it's about $2000 a month. Just posting this to mention that we just learned from our pharmacy, after three years of a thousand dollar a year copay, that Enbrel offers assistance paying copays in certain situations-needs a referral from a doctor, apparently, but good to know.
posted by purenitrous at 9:50 PM on January 31, 2008

I've been thinking more about your dad and Oriole's comments about antibiotic therapy. I love the biologics, but if you think your dad would fight the idea of side effects, then antibiotics may be a better choice. He may also find some kindred spirits if he's anti-doctor and anti-medication. It's might be easier to get him to take anitbiotic pills than to take injections of anti-tumor necrosis factor drugs.

There is a lot of debate about whether the antbiotics work as fast or for all levels of arthritis, but he could be someone who is helped. It's certainly something to look into if he refuses other levels of medications. The Roadback website is the best resource for more info on this.
posted by saffry at 2:25 PM on February 1, 2008 [1 favorite]