Monday, December 15, 2008 Leonie asks

Q: Is anyone else sensitive to RA drugs?

Help, I feel like a freak ! I've taken methotrexate and sulphasalazine, both of which made me feel ghastly, and i just couldn't bear to stay on them. The MTX upset me for a whole week, with a huge "hangover like" feeling that never went away, and also gave me an attack of pluerisy or something similar, which i can't get rid of now. The sulpha made me feel like killing myself, however the rheumy said it was "all in my head". I wish there was a drug i could take without drastic side effects. I'm not a wimp, but i can't bear to feel so dreadful for so long on some of these things. Especially the MTX which i feel is only weakening me and making my overall health worse. I gave up on those drugs about 5 years ago, and I've been trying the natural approach, with strict diet and supps, however it's a tough road doing this and requires so much focus and discipline which i don't have. I'm feeling very hopeless that there isn't any help for me and i'll end up in agony and totally crippled. I'm so worried the rheumy will insist i take the horrible MTX and Arava before i can go on the biologics. My knee joints have already totally deteriorated and i need surgery. My shoulders are going bung too along with most of my joints. Any suggestions would be great. What about Plaquenil ? I know everyone's different and responds differently to any given drug. Thanks so much...

Leonie (Australia)

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Answers (5)

Lene Andersen, Health Guide

12/16/08 12:41pm

Medications come with a recommended dosage from the manufacturer and it can be difficult persuading your doctor that this dose is too much. I am very sensitive to medications and for a long time, my rheumatologist thought I was nuts when I insisted on getting the dose cut in half e.g., when I started Enbrel. Later, she has acknowledged that as the drug became more widely used, it became clear that people are different and dosage levels need to be adjusted based on the individual requirements and tolerance. I also have fibromyalgia and studies have recently concluded that people with fibromyalgia are much more sensitive to medication than people who don't have the condition. I have to admit, it was very satisfying to hear my rheumatologist tell me about that (I just smiled and nodded, while on the inside I smirked and muttered "told you so").

It is completely normal to react more strongly to a medication when you first start taking it - over time, your body will adjust and the side effects will most likely simmer down. I've learned to start at a very low dose and once I've adjusted to that level, increase the dose a tiny bit, until I've adjusted to that, then increasing again and so on. It requires a bit more tinkering, thinking outside the box and patience, but it is absolutely possible to get to a point that balances the benefits of the medication you need while having tolerable side effects (for tips on how to manage some of these side effects, check out a post I wrote a few months ago). It's very possible that you rheumatologist will ask you to try the meds at the lower level of the treatment hierarchy before you try Biologics. The Biologics or at the very top of this hierarchy and therefore come with more serious side effects and where it's absolutely a risk that's worth taking if you have no other options, it's a good idea to make sure you don't have other options. Give the meds some time to slowly build up to a level you may be able to tolerate, but if you can't, then you go to the next one up the line. Doing it this way, I managed on methotrexate (at about half the usual recommended dose) for a couple of years before I had to move onto something else. I tried Arava, but couldn't tolerate the side effects, so that was very quickly eliminated and then I went onto the Biologics. So it is possible that they may be some medications you just can't handle, but is worth giving it some time on the lower dose to find out if there's a less severe drug that can help you.

I am a big fan of supplementing traditional Western medicine with alternative therapies, but I am pretty sure that you can't achieve any level of suppression of RA with alternative medications or by going the natural route. In order to protect your joints and your ability level, you need a DMARD medication, such as methotrexate, Arava, Plaquinil, Enbrel, etc. Although there's such a thing as spontaneously going into remission for mysterious reasons, you can't count on it. If you don't do something to treat your RA, your pain levels are only going to get higher and your mobility is going to get more limited. I understand your hesitation, but please, do get treatment. You don't have to live like this. There are ways around it.

mscocoa

12/15/08 3:08pm

I took Plaquenil for about 2-1/2 years several years ago with hardly any side effects other than it quit working after a while. I seem to have a 2-3 year time limit on the effectiveness of any med for arthritis control. Then I went on and off Minocin for two different rounds with a year between rounds and did well on that until it quit working the second time around and then my dr. put me on MTX tabs. I've been on the methotrexate since mid October now and I hate, hate, hate it! I'm exhausted all the time, spend three days after taking it each week feeling nauseated and just blah and then I get to feeling ok for maybe a day or two and have to start the cycle all over again. I've had one horrible sinus infection since being on it also. My dr. just seems to want to keep me on it even tho I feel that it's not done much for the pain. It feels like I've given up my quality of life for nothing.

Carol

12/16/08 9:49am

How long did you try? My first week on MTX I felt a little yucky, not to bad but i didn't want to eat and I was very tired. I was much better on my next dose. Just tried the next day. Now I have lots of energy even the next day. I am now on 8 weeks and feel 100% normal now. I wanted to be on MTX because it can be combined with so many other drugs if need be. I would take it in a heart beat over the biologics and all the biologics work better with MTX.

I am so glad I did not read all the negitive things people say about MTX. I to feel sick if someone says a food does not taste good or that they have the flu. It is all in my head.

lcplonski

12/16/08 5:55pm

I felt like I needed to send a response to your question, not really to help solve your medicine problem but for moral support. You sound like the way I often feel. getting the right medication is frustrating. What they don't always tell you about plaquenil, is that it takes at least 6 months to get into your system and for you to even notice if it is working or not. And to my understanding, plaquenil is one you would take before moving on to Methotrexate. I am on Methotrexate now, and have been on for at least 1 year now, but sometimes I have to stop it when I get sick. Any immuno-suppressant therapy you take is going to lower your immune system, which makes you sick easy, especially if your family gets it from other people and they bring it home. That is the problem I have. My husband is a carrier of the common cold and flu. He rarely gets sick, but he brings it home to me. Not only should you be getting a flu shot but also your family. Especially if you are around small children. I carry alcohol swabs in the car. Try to wash my hands as often as I can. I don't drink off other people's drinks, and I don't let them drink off mine, etc...

The MTX made me a little ill at first but after awhile, I adjusted to it and it was affective for the most part. It was controlling the pain in my shoulders so the Rheumatologist added Infusion tx. I started off with Remicade, and I couldn't adjust. It made me extremely fatigued. And a myriad of other symptoms that would not go away. She recently switched me to Orencia, and the first two infusions were fine. When you start it, you have to have 3 infusions 2 weeks apart and then once monthly. On the 3rd one, I reactive with some hives, swelling of lower extremities, and blood pressure has been shooting up, as well as pulse. I may stop this infusion business and just stay on the Methotrexate, because although it wasn't completely controlling the RA, the medication reaction was tolerable. Now my body feels over-medicated. I take a lot of other meds for Chronic pain syndrome following failed neck surgery and Fibromyalgia. I don't know if my experience helps you any, but I can honestly tell you, I know how you feel!

I did take plaquenil for about 1 1/2 years when they thought that I had sjogren's syndrome, while all along I had RA (same treatment, thank God) but to be honest, I don't think it helped for very long. It's hard to say. It took 6 months to get into my system and maybe worked for about 6 months and then didn't work the last 6 months of taking it.

Luana Plonski from Albuquerque, NM

lcplonski

12/16/08 6:03pm

That was supposed to be a sad face not a laughing face. The keyboard and fingers don't always do what you want them to do.