Sulfazine: Hi all. Diagnosed with seropositive ra in... - NRAS

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Sulfazine

sensibleshoes profile image
15 Replies

Hi all. Diagnosed with seropositive ra in April this year and been taking oral methotrexate but just switched to injections. Rheumatologist also mentioned sulfalzine. Just wanted to know how others had responded to it as feel I’m going backwards at the moment. Had to miss a weeks mtx when changing to injections as clinic on a Thursday and I used to take my tablets on a Friday so hoping that this flare is as a result of that and once I get a few weeks of injections under my belt I’ll start to see an improvement again. Have to say I’m not looking forward to Christmas as this moment in time at least I can do all my shopping on line. Any help or tips very welcome. Thanks. 😁😁

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sensibleshoes
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mrdiggs profile image
mrdiggs

I too have just switched over to injections from oral methotrexate after being on the oral for about 7/8 yrs. Can't say I'm doing or feeling any better.I don't think it's lasting as long as the oral did . I take my shot on Sunday night and by about Friday I definitely start getting swelling in hands and fingers and sometimes it just jumps all around.Right shoulder has been acting up too.It definitely is worse on my hair.Told the nurse that called to see how I was making out that I would give it another month and then decide whether to stay on it or how to move forward.I hear a lot of people do very well on the shots so decided to try it but it might not be the one for me, everyone is different.I can't tell if it's making my sinuses worse since our weather has been insane, one day 5o's and the next low 30's,but they have been so bad it's like having morning sickness 24/7. Very tired of never feeling good.Really over did it for Thanksgiving and totally wiped out so taking it easy and trying to get back to my new normal--lol. With this crazy disease it's hard to tell when it's the disease and when it's just normal aches and pains or something else or the infamous swollen joints.I'm with you , I can't tell if this is working for me better than the orals, I tend to think NOT, but time will tell. Wish I could help you more and hoping it's your answer to feeling better once it has time to work its magic. Best of luck !!Let me know how you make out.

Pembrokeshiregirl profile image
Pembrokeshiregirl in reply to mrdiggs

Thanks for your reply. Sorry your having a rough time. Interested in what you said about your ra jumping around. I find the same - your feet get better then your hands swell up, your shoulder improved but the your knees start to hurt ☹️. I will persevere with the injections but just considering whether to ask for some steroids to keep me going. What dose are you on with your injections? I’ve had to go down to 20mg from 22.5 as that was all the pharmacy had. Will be back up to 22.5 next week which again I hope will help. Do you take anything else with the mtx? Thanks.

mrdiggs profile image
mrdiggs in reply to Pembrokeshiregirl

I have been taking prednisone along with the Methotrexate since first diagnosed about 8 yrs. ago. I put up with probably more pain or discomfort than I should because I try my best to keep the dosages of meds as low as I can tolerate without going into a full blown flare. Sometimes it works and sometimes it doesn't. I have myself down to 2 mgs. a day of prenisone and 7.5 mgs. of Methotrexate once a week. When times have been good I have tried twice to come off the meds, but both times I had really bad flares so guess I'm stuck with the meds for life. Now if I have a flare up the Dr. has never increased the Methotrexate but does push the Prednisone up to 20 mgs for 5 days and then tapers me off every five days dropping 5 mgs. each time till I'm back to what I normally take. I'm beginning to think I'm always in a bit of a flare as I've never to my way of thinking been back to the way I used to feel.So I guess this is my new normal and make the best of it . The Prednisone does work as far as helping with inflammation but for me at a cost. My skin is very , very thin, I have a tear in the tendon in my right ankle, bone on bone in right knee and of course the lovely moon face all compliments of the prednisone, but without it I'm in serious trouble.The Methotrexate hasn't been much kinder to me as it has caused serious hair problems with an ever increasing bald spot and overall serious thinning of my hair. This is not to scare you as many and even most people don't have this problem with their hair.I must just be one of the weird one---------lol. As it now approaches 4:15 in the A.M. I think I'll shall stumble back to bed for a few winks before the dog needs to go out and the cat decides it's time for breakfast. Have a good one and keep a good , stiff upper lip as they say.As long as we're above ground we should all smile and enjoy the day !!

sensibleshoes profile image
sensibleshoes in reply to mrdiggs

Oh dear sorry you have had such a hard time. I’m trying to avoid the steroids but think I may have no choice if things don’t improve. Keep strong and look after yourself. 😁😁

mrdiggs profile image
mrdiggs in reply to sensibleshoes

Thanks. I consider myself lucky as I'm a lot better off than some of the people in here. They are truly suffering much more than I am. Everyone has a flare every now and then and you just have to wage your own war against it. There's always light at the end of the tunnel and sooner or later you're going to get through it.The old me may be gone but the new one is still here and loving every day. Keep smiling -------And yes the prednisone may be a bit of a buggar but it really does help with the inflammation, at least for me it's a life saver.

windsor1944 profile image
windsor1944 in reply to mrdiggs

Have you ever taken biologics? I see you are in England, I'm in Florida USA That is such a long time to be on Prednisone with all the problems it causes. My brother lives in the I.O. M. and has RA, he is on methotrexate I rarely take Prednisone only when I have a bad attack It's sure a wonder drug for reducing pain

helixhelix profile image
helixhelix

I ended up adding to the methotrexate a few month after diagnosis. First by adding in hydroxy and then adding the sulphasalazine too, so was on all three drugs for about 8 years. They worked for me and I was in remission for most of that time.

sensibleshoes profile image
sensibleshoes in reply to helixhelix

Thanks that’s good to know. Are you still in remission?

stbernhard profile image
stbernhard

Hi sensibleshoes, I was on MTX injections and Sulfasalazine for years before the Sulfa was gradually reduced to zero. We're all very different and I hope you'll do as well as I did on that combo. Christmas is a good time to let others do something for you. Their chance to give kindness. Enjoy.

sensibleshoes profile image
sensibleshoes in reply to stbernhard

Glad that worked for you. Seems like a journey of trial and error to get this under control it can be hard to stay positive. Are you still in remission?

stbernhard profile image
stbernhard in reply to sensibleshoes

It is a bit of trial and error and I was lucky. It's important that you are the boss and not RA. There is so much you can do to help yourself and make things a little easier. Yes, still in remission and long may it last.

sensibleshoes profile image
sensibleshoes in reply to stbernhard

Thanks that is really good to know.

Thingybob profile image
Thingybob

I was diagnosed 2 years ago , just before Christmas , and one of the nicest times of the year turned into one of the worst!

I was started on sulpha initially then a month later, once my body was used to that, mtx by tablet. I was also on prednisolone.

I moved to the mtx injections due to the extreme nausea caused by tablet form. It takes at least 8 weeks for a new dosage to take effect, sometimes longer.

Gradually over time i have increased my dose of mtx but remained on the same dose of sulpha. My prednisolone dose has varied with flares, level of disease activity etc, and i am only now starting to reduce the prednisolone gradually with the aim of coming off that completely.

My understanding from what the rheumy says is that more of the mtx gets onto.your system from the injections as none is lost through the gut. And that a combo of a couple of drugs is usual and more effective. Its a matter of finding the right combo. And the right dosage for you . So hopefully the only way is up for you and things will improve. It takes a while but patience, which I don't do easily lol, is a virtue . Kind wishes x

sensibleshoes profile image
sensibleshoes

Thanks for your reply. Finding the right mix of medicine seems to be the key. Hope you feeling ok and are in remission. Learning to take care of yourself can be the biggest challenge. Take care of yourself.

Jamarruk profile image
Jamarruk

Hiya. I’ve posted a few things about experience with SSZ which I find positive.

Have a look and good luck

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