I was diagnosed about 10 years ago, after taking diclofenac for about 18 months, until it affected my liver function, I was then monitored by rheumatologist for a further couple of years, as the flare seemed to have luckily gone he discharged me.
I was diagnosed 2 yrs ago with liperdermasclorosis (an inflammatory leg problem) I have been taking Naproxin for 2 years, even on that I had a flare in April, my crp being over 60(while on naproxin!), my gp sent me back to see the rheumatologist, I went last week and he said that the PsA was back and wants me to go onto Sulfasalazine+ the Naproxen(for my leg), I have to ring the nurse practitioner to start me on it
I have put off calling her as I am so so scared of the side affects of Sulfasalozine after researching it and reading forums about how bad the side affects are... my hands hurt so much on a moring that I know that I have to take something, but just how to I actually make myself able to take it?...I work with numbers so am scared of the violent head aches and being sick all the time...I also don't sleep well now so really worry about getting insomnia... I feel that I am repulsive enough (major weight problem) without adding to it
Those of you who have been on it... is it as bad as I have read?...
thanks for listening, sorry to sound a whimp but it scares me so much
I know, Maggie, fear is such a horrible thing, and most of us here are only too familiar with it. You are not sounding like a wimp.
Some people report terrible side effects from methotrexate. I had none. People tell miserable things about life with sulfasalazine. Others (like me) have absolutely no problems with it – and in my case, no benefit either.
The only way to find out is to give it a try. If the side effects are intolerable, then you have to reassess the situation and work something out with your doctors. Maybe something to counteract the side effects, or maybe discontinue. One step at a time, and whatever happens is another piece of the puzzle called “feeling better”.
Again, welcome to the board. I hope that you find this a good place to be.
I know exactly how you feel but for me it seems to be working! I felt MTX was so bad for me that I worried Sulfa may have the same effects but other than stomach distress and headaches first 2 weeks. I feel great I am even going to the gym every day and doing so much more than a month ago! Im not going to lie I thought the headaches were going to kill me but I had read someone on this blog also had SE first 2 weeks so I stuck it out. I’m glad I did! Everyone is different so goodluck on whatever med you decide to take. I for one feel less stiffness and well with more activity comes more mobility:)
Hi Maggie! I can't help but get all wimpy when a new person like you comes on here and tells their story. It's so sad!!!! We are all in the same boat and please keep coming back because these people can help you so much!!!
I was diagnosed with PsA a few years ago, but like many others probably had symptoms and flares for many years before....just didn't want to doctor much.
My rheumy suggested biologics right away, but I refused. I tried to avoid him, but usually saw him once a year, following the appointments I always felt stupid for going in because I wouldn't cooperate anyway. Last year he thought he had me talked into Sulfasalazine-except he made the mistake of telling me it wouldn't help my psoriasis. Wasn't worth the possible SEs for me :-/
I was getting desperate when I stumbled across this website a few months ago--I think it was March. If you're also afraid of biologics, take it from me, I was petrified of them. I started many discussions on here trying to get assurance that biologics were the right choice. These people gave me courage.
Long story short (okay, so Idk how to make a long story short!) I started Enbrel a week and a half ago and I have absolutely ZERO SEs and it is already working to make me feel incredibly better!
I wanted to tell you that if you have psoriasis also, a dermatologist could get you on a larger dose of a biologic (I take 2 shots/week for starters instead of 1 shot/week if I had PsA without psoriasis.
I'm not saying to not take the Sulfa....--listen to all the people. They have many years of experience with the disease and the meds and they want the best for you.
You can and will get better-something will work-if I had only believed that a long time ago I could have avoided a lot of suffering! I should have probably taken the Sulfa..., but it's all okay now. My best advice is try to not be afraid! :-(
Hi Maggie! I can't help but get all wimpy when a new person like you comes on here and tells their story. It's so sad!!!! We are all in the same boat and please keep coming back because these people can help you so much!!!
I was diagnosed with PsA a few years ago, but like many others probably had symptoms and flares for many years before....just didn't want to doctor much.
My rheumy suggested biologics right away, but I refused. I tried to avoid him, but usually saw him once a year, following the appointments I always felt stupid for going in because I wouldn't cooperate anyway. Last year he thought he had me talked into Sulfasalazine-except he made the mistake of telling me it wouldn't help my psoriasis. Wasn't worth the possible SEs for me :-/
I was getting desperate when I stumbled across this website a few months ago--I think it was March. If you're also afraid of biologics, take it from me, I was petrified of them. I started many discussions on here trying to get assurance that biologics were the right choice. These people gave me courage.
Long story short (okay, so Idk how to make a long story short!) I started Enbrel a week and a half ago and I have absolutely ZERO SEs and it is already working to make me feel incredibly better!
I wanted to tell you that if you have psoriasis also, a dermatologist could get you on a larger dose of a biologic (I take 2 shots/week for starters instead of 1 shot/week if I had PsA without psoriasis.
I'm not saying to not take the Sulfa....--listen to all the people. They have many years of experience with the disease and the meds and they want the best for you.
You can and will get better-something will work-if I had only believed that a long time ago I could have avoided a lot of suffering! I should have probably taken the Sulfa..., but it's all okay now. My best advice is try to not be afraid! :-(
We are not given biologics here in the UK untillall else has not worked, luckily the psoriasis is only slight, it is my hands that are the problem
I called the nurse to make appointment... I could have gone today, but have put it off for 2 weeks as I have my son and his family visiting next week...
I am still scared stiff about taking sulfa and still don't know what to do when I go to see the nurse
Well, Maggie, unless you go see the nurse and try the sulfa and see what it does, you are going to limp along as you are. “As you are” isn’t much of an alternative either, is it?
Worst case scenario, sulfasalazine makes you feel poorly. You deal with it when that happens. Best case scenario, it helps make your pain go away. There is no certainty at all that you will suffer SEs from it – many people don’t. There’s only one way of finding out.
I know that’s a bit of a hard way of looking at it, but there’s nothing easy about this disease. And if you feel poorly on the SSZ, at least you will have us to listen to you whine! That’s one of the things that we do best. LOL
I kept hoping and hoping and telling myself I would get better miraculously without taking meds, but the flares came more often and less and less times of feeling anywhere close to OK! Then the psoriasis started flaring up worse and I now have it really bad all over my legs-usually once a day for about 15 minutes it itches so bad I nearly go out of my mind--I could tear my skin off scratching it! Along with the PsA I couldn't take it anymore and I was darn lucky my insurance approved Enbrel. And, I agree most of us probably do feel that we look disgusting for one reason or another, but if the Sulfasalazine works you will have more interest in working on losing weight. And, if it doesn't work so well, you will be one step closer to getting on a biologic! I am so happy I did. I have energy and enthusiasm again that I didn't have for a long time. Good luck-everything will be fine!!! :-)
Many years ago I read that on a flight between two airports the aeroplane is on a straight line course for only twenty percent of the whole journey, the rest of the time it is slightly off course and making constant adjustments towards its destination.
We all know life is like this too.
I've found this to be especially true for me since my PsA diagnosis. I know my treatment destination is good control, and hopefully I'm about there now on my second biologic, but en-route I've been all sorts of places with different medications! Each time one wasn't very nice to me and kicked my butt or simply didn't do anything then it was stopped and there was another one to move on to.
You have to start your treatment journey somewhere and, if necessary, make course adjustments along the way.
A tip I've read several times on here to help with avoid or deal with side effects (and one I wish I'd known about when I was suffering on methotrexate) is to drink lots and lots of water. Simple but effective.
Good luck, get started, and we're all here to give support encouragement and hang out the bunting when you tell us you're feeling better.