I was wondering if anyone else has been on this combination and if it caused them to constantly get sick?
I was on Methotrexate for the first year I had the PsA, and it worked quite well in the beginning, but I'd have the occasional flare up still. The rheumatologist gradually upped the does til I was on 9 per week, and then when I had a particularly bad episode with my wrists she decided I needed something stronger so started me on Sulphasalazine as well (4 per day).
Ever since I started that combination in January, I have been sick basically twice a month. I have had flus, colds, you name it, and before and after every one I get a flare up. I feel like I'm on a ridiculous merry-go-round.
My illness symptoms tend to be mild - i often just feel exhausted and dizzy and get a fever. My GP said she's worried I'm going to get pneumonia and not know it because she thinks the drugs suppress my immune response so much. I complained to my rheumatologist who said we can look at taking out the MTX, because apparently only that is responsible for making people get infections. But if that's the case, why was I fine on it before I added the sulphasalazine?
So for a month now I've only been on sulphasalazine, but an increased dose, up to 6 per day, and im sick yet again. The rheummy says it might take same time before the MTX is out of my system, so that may be why, but I'm having trouble believing her - when i first started the sulphasalazine I got extreme anxiety from it, so i don't really trust it.
As a side note, i generally have a pretty healthy diet, get enough sleep, etc, exercise when the pain isnt too bad, and take loads of vitamin supplements, but nothing seems to help much.
Sorry for the long post - thanks for any advice anyone might have!
Hi there, Jesssha
Welcome here. It’s nice to see you posting, but not so nice to hear that you aren’t feeling well. These things are so complicated, hard to know what’s going on. But what your rheum said about the MTX hanging around for a long time is true. Apparently, traces can be found many many months after you stop. Leflunomide is the same. And as for sulfasalazine, who knows. What I do know, though, is that there is a synergistic action between the two – these two drugs together make both drugs more effective. That’s one of the reasons MTX is often kept when someone goes on a biologic.
You seem to be on a DMARD progression. (Two down, two to go … ) Is your rheumatologist talking about a biologic if the DMARDs don’t help you enough?
I’m glad you found us here, even if it’s too bad that you needed to! Stay strong!
Hello and welcome! Okay let me start by saying things are much different in South Africa, and they have a rather unique perspective on everything...... SSZ is very much an immunosuppresent drug. I had to dig for a source and the closest I could come up with was UK I'm sorry. I know sometimes they like UK stuff down there, sometimes not....
That aside the Use of 2 DMARDs seems to be pretty much a UK/Commonwealth thing. In the US, its rarely done because the risk of "infection" just as we won't let two biologics overlap for the same reason. Different types of immunosuppresents don't seem to make a difference (much) Yes it will take a while to get out of your system. But a month should be plenty.
I don't mean to be harsh because I know nothing else about your doc. But this makes her sound like an idiot I mean your taking MTX with moderate results, no infections. You add SSZ, you get infections, you quit the MTX still are getting infections. You increase the SSZ and get infections. She may well be following siome kind of a protocol though - as I said things are different down there.
SSZ is actually considered a crap drug for PsA by most. I haven't heard of many it has helped although when it does, it REALLY does, so your gut feelings may be right.
Aside from the infection issue your statement " but nothing seems to help much" concerns me. It would seem that you have given the DMARDs a fair shake and its time to try the biologics and get more aggressive with treatments. I know that with parallel private and public systems in South Africa, that health care is a mess. I'm not sure where you fall into all of that or if you are being covered by some kind of ex-pat insurance, so it may be difficult. Best of luck............
Thanks so much for the really helpful replies! I don't know if you saw on my profile but I am originally from California, and even though I've been here in South Africa four years, I am always uncertain about the medical care here, or at least trying to figure out how my care here might be different than in the US.
My rheumatologist hasn't mentioned biologics, though I wonder if they are actually used here... That said, a lot of things here are modelled on the UK. I see a private doctor here and have good insurance that so far has covered everything for my arthritis. She came recommended as one of the best here, though that may not be saying much as there is a shortage of specialists in the country.
I meant nothing helps much more in relation to diets and supplements, just because i have been told so many times by people that those could fix things. The methotrexate definitely helped a lot, just not completely.
I guess I'll give the sulphasalazine a little longer to see how it goes but start looking at what other options I have here. Really interesting to hear that the m/s combo is usually not used in the US and thats maybe why i'm so ill, so i definitely wont be doing that combo again! Thanks so much for the truly helpful advice, I really appreciate it!
I’m always surprised at how widely protocols differ from country to country. The first drug is almost always MTX. After that, practices vary. I’m Canadian, and I started on it too. After MTX didn’t help, my rheumy added sulfasalazine AND hydroxychloroquine. (Lamb is shaking his head.) That was no help, so I kept MTX, and dropped the other two. Then, she gave me leflunomide on top of the MTX. (Lamb is cringing, I just know it.) That helped minimally, but eventually I ended up switching docs and was put on a biologic. THAT helped a lot, in fact that was (in the words of my orthopedic surgeon) a life-changing treatment. And he was right. (Lamb’s going “Told you so …” LOL)
I regret the time wasted on trying every DMARD, but now that I have to change my drug coverage insurance to the government plan, I’m told that it’s a good thing that I tried them all, because they’d probably expect me to have tried every DMARD before they’d be willing to cover my Enbrel from the public purse.
Different protocols, different practices, and different insurance requirements everywhere. All part of PsA’s rich tapestry! Welcome to our world.
It is always interesting to get an international perspective, definitely a big plus of this forum! One thing my rheumatologist told me that certainly seems to be true is that figuring out the right drugs for each case is very much a guessing game, as different people react differently to each treatment. I guess that's part of what makes it such a frustrating condition... but it's good to hear i'm not alone in the confusion (though sorry to hear other people have to go through it too!)
Are you using Ex-Pat type insurance from the US ?? If so you may (when the time comes) be able to avail yourself of the Drug Company assistance programs. I know a couple of profs here have had meds expressed to them while doing overseas stuff for an extended period.