Triple DMARD's, anyone benefitted?

Boomer13

Hi everyone;

I'm two weeks on triple DMARD's (sulfasalazine, mtx, hydroxychloriquine) and a taper off prednisone. I've come through the flare in my spine, but the side-effects of sulfa are not pleasant. It's rather harsh on the tummy (taking a med for this) and has given me a sore throat and sinuses (not viral), which I've been living with, but this morning, I woke up to a very swollen face, throat, sinuses, eyes; much worse than the swelling prednisone had caused. I upped my mtx dose this week too, as rheum had instructed.

I don't think it can be an allergic reaction as I've already taken it for two weeks.

I'm just wondering if others have done triple DMARDS and if you were able to tolerate it long enough for it to work? Did you have worsening side-effects, liver problems? I know we are all different, but so far I've been a bit of an ox when it comes to meds with pretty good tolerance. This one in the present combo is icky.

Thanks,
Anna

mike26

hi boomer13
Im sorry your suffering with your tripple meds, and do hope it
will work for you soon,dont forget regular blood tests.
I also about to start a tripple whammy MET,LEF, and a TNFs
in few weeks time,im also on high dose pred so im feeling strong but i know this is false feeling and hope to get down soon.
i also suffer side efects good luck to us both ..
mike26 :roll: :?

suzygirl

Have you tried an antihistamine for the swelling? I would be worried that it was an allergic reaction to a med. If it gets any worse I would seek some advice.

Boomer13

Thank you Mike. Good luck with your triple meds too! Hard enough getting used to one or two, let alone three :shock: Hope they work.

Thank you suzy, I've never had an allergic reaction to a med but I'll definitely see my GP if it gets worse.

barbara12

Oh Anna this sounds horrible..a sore throat is bad enough with out the sinuses joining in..sorry I cant offer any help but I really do hope they kick in very soon and the side effects ease up for you..please let us know how you get on..xx

purpleowl

Sorry that you are having such an awful time, those drugs sound so aggressive I hope they do the trick for you and soon.

I am always reading about 'flares' but am lucky enough never to have experienced one, tell me what is a flare exactly?

Thinking of you,

Trish xx

Boomer13

Thanks Trish.

A flare is a worsening of autoimmune disease of any kind. Something is usually a trigger, but it's often difficult to say what it was. People with Lupus can flare from sun exposure. I flare with stress, viruses, exercise, and sometimes I have no idea why. Mine always start with worsening of fatigue or sometimes a migraine too, then over a few days progress to full-on joint, spine pain or my neuropathy will flare.

xxAnna

dibdab

Hi Anna,

I take the triple combination that you do, and find it can be harsh on the tummy-I confess to taking an occasional "day off" from the sulfa which is the one that seems to affect my tummy the most. The methotrexate is a low dose and I have to confess it makes me suffer for 24 hours(hubby calls it melancholy Tuesday ), but on the positive side it does seem to control my symptoms fairly well so for now at least I'm dealing with it. I can't say that I'll hack it long term, but I know that because the RA has damaged my lungs I can't do the next level of meds, so I've no where else to go (tried and failed miserably with gold injections- gave me a sore and bruised seat but little benefit! :? )

I really would encourage you to talk to a doctor about swelling etc before it gets any worse, these meds can have fairly drastic effects on our bodies and aren't to be messed with.

Hope the meds settle and you get some relief soon.

Deb xx

Boomer13

Thanks Deb, it is a very harsh combination, especially on the tum. I'm getting used to the mtx 'hangover' but I'm not sure about the sulf yet.....

You can't do anti-TNF's in case you get a serious lung infection, I assume that's the reason? I am sorry. I'm doing my research on Biologics right now, just in case.

I appreciate your input and I'll check in with my doctor regarding the swelling. I don't want any more problems.

Anna

Toots

The sore throat and nauseawith sulf is the one side affect I had and my doctor said to try to just keep going and push on past it. I did, and it worked. I had an iffy throat again for a couple of days during the last fortnight but am back to normal now. After checking, I believe I may have missed a couple of random doses and I think this is why I had a recurrence. Are you stepping up the sulf gradually? My understanding is that side affects, if they're going to be a factor, can occur at any time within the first 3 months. Don't much like the sound of the swelling though, although a common side affect is swollen mouth.

I hope you get some answers from your doc Anna. Hugs in the meantime xxx

Boomer13

Thanks Toots (()), I went straight on to the max dose, ugh. Good to know about the swollen mouth; I hadn't read that one. I don't think my rheum likes sulf very much; the triple-therapy seemed to be a last resort. Or, he's going for a "kill or cure" (just kidding )

I found methotrexate much more pleasant to deal with

Hope your experience with sulf. is improving.....

xxAnna

mike26

yerr this was my first
DAMARD (SULF) only on it 4weeks .
doctor phoned me and told me to stop taking it,
lowerd my (white blood cell count) to danger level.
must admit it wasnt great start for me :!:
mike26 :?

dibdab

Hello again,

You're right- the reason I can't do biologics is because I now have a lung condition called Bronchiectasis (part of the COPD group) which means my lungs are permanently scarred- I take daily antibiotics to try and keep a chest infection at bay. I developed the lung scarring after having 8 chest infections in 12 weeks whilst on a higher dose of meth- sadly my previous rheumy wasn't careful in monitoring the random affects of the drug- I requested a change in consultant and have been cared for so much better since, but have to live with the consequences. The new rheumy won't prescribe biologics because they damage the immune system even more than the triple therapy- though he does say that my disease level warrants the meatier approach! Having said that I've been reading research later that strongly suggests the triple therapy is at least as effective as biologics- s- hopefully it will work for both of us for as long as we can tolerate it!

Hope it settles for you soon

Deb xx

Boomer13

Deb, I am sorry about your lungs, that sounds awful. Glad you have a careful rheum now-- I thought they were all supposed to careful, that's scary....

I read that too about triple DMARDS being as effective as biologics. Is the damage from biologics you speak of what leads to lymphoma? In my quest to learn about them, I've read about the risk of lymphoma and the unknowns about other long-term effects, but I haven't read about specific, known damages. Can you let me know more?

Thanks, Anna

Boomer13

That does sound like a rough start, Mike. I hope the new combo works. Do let us know how it goes for you.

I really hope my white cells don't plummet. They've just come up on methotrexate. I don't know why because I thought mtx was supposed to lower them. The rheum says I'm a mystery; I'd rather have something easy, simple, fixable

stickywicket

I think triple therapy is fairly common, Anna, but I'm lucky enough not to need it. I'm pretty sure a former forum member whom I'm in touch with is on it. I know DD takes meth, sulph and humira. I hope you'll get more replies after the weekend.

Mat48

Hi Anna - sorry you are having a ikky time of it on these three DMARDs. I know quite a few others who take this combination with great success - I think they all had teething difficulties with the three together at first but for at least one friend has taken her RA into drug induced remission so she's got through the bad times so far re side effects now.

I'm afraid my body is just too intolerant for this to be an option for me. I did do very well on the dual therapy of Hydroxy and Methotrexate injections for about six months - but then the side effects came roaring back. I tried Sulfasalazine too when I was first diagnosed - lasted three weeks and then I got weird, painful swellings on my neck and round my ears and an all body purple rash - I think it was a sunlight reaction to start with but it was incredibly itchy and my GP took me off it and told me he would never prescribe it again. It was my most extreme reaction to date.

Not sure what's next for me but I'd be okay to try Hydroxicholoraquine again if they would let me - apart from a bit of low level nausea after taking it and a one off facial rash following the first MTX day - I didn't have much trouble with this drug at all but they felt it didn't make enough of a difference to my RA. I can only dream of triple therapy (a good dream and a bad dream all rolled into one!). I really hope you make it out the other side of the nasty ikky stage and that this combination works wonders for you as it has for the friend I mentioned. X

Boomer13

Thank you for the replies. I guess I should feel lucky if I can tolerate triple DMARDS :? .

The swelling has gone down a bit for now. So I'll persevere through with the other sulf side-effects. Hopefully, it will be miraculous for me like for the others you mentioned, Mat. That's encouraging