Sulfalazine saga!: I haven't been on for awhile as I am... - NRAS

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Sulfalazine saga!

Furpaws
Furpaws

I haven't been on for awhile as I am feeling quite exhausted with the journey of RA so far. I was eventually seen at the hospital but did not see my consultant but saw a Speciality Doctor who still didn't think the Sulfalazine was the reason for all my infections. She suggested I try the sulfalazine once again. I agreed to this but by day 5 my mouth had broken out in ulcers/blisters, the roof of my mouth was on fire and my salivia glands under my tongue had all swollen up. I contacted my GP who said it was more than likely the sulfalazine,to stop it and get in touch with Rheumatology. I did this, but she thought it might be thrush so I had a to get a mouth swab done which the result was negative. From this she said I would now have to wait to see my consultant. Tried to contact consultant on many occasions but eventually got to speak to Speciality Nurse. She was so helpful. She got hold of my consultant who is still working on the wards because of COVID and has prescribed for me to start on methotrexate. Just had bloods and chest xray done so hopefully get to start methotrexate in a week's time. Meantime I just feel emotionally exhausted and all my joints are flaring up so not sleeping well either. Fingers crossed methotrexate works!

12 Replies
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😡😡so many have been left in limbo and continue to suffer. I understand the COVID thing but it still seems to be an excuse for so many who need medical care. This disease effects us physically and mentally both disabling but we continue to be left to one side often with the need to have drug changes etc but expected to live and work as normal. I went back to work this week only did 7hrs over 3 days . I’m physically and mentally exhausted and I’m flaring so my weekend will be resting. I’m lucky the speciality nursing staff are back at my clinic and seem to be very proactive but there seems to be a very limited return of registrars and consultants have yet to return. This is just our disease who is effected there are so many others effected and so much to catch up on.

I hope methotrexate works for you but as you know all these drugs take time 🙄take it easy

Furpaws
Furpaws in reply to J1707

I haven't returned to work as yet as my hands and wrists are really bad and being an administrator it is a big problem. Have a good rest over the weekend and be kind to yourself

Hope the methotrexate goes the trick, I can totally sympathise with everything you said i had the same problems too.

Hope you have a gentle weekend where you can recuperate and get ready for MTX

BTW your rhemy nurse sounds amazing 👏

Lets hope they do. Hugs from me. xxx

Sulphasalazine didn’t suit me either. I got three different infections simultaneously whilst on it, then had an allergic reaction to it. I ended up being rushed into hospital with suspected pneumonia and sepsis.

So I am so glad you were listened to and that your consultant is sorting out the MTX for you. 🤞🏻

Hi Furpaws. Your side effects sound horrendous and I know what you mean about feeling quite exhausted. I have the same problem at the moment with the SSZ and feel that I haven't slept in days - I have just finished my tenth week but after about eight weeks, I could feel the exhaustion setting in really badly (I'm also on MTX). I've also had other side effects which have become much worse over the last two weeks, so much so that I rang the rheumy department yesterday morning and was lucky enough to get a call back in the afternoon. The nurse told me to stop taking them and she would have a word with a doctor (unfortunately my lovely rheumy doctor who was so good has left and gone to another hospital) and get back to me on Monday afternoon with a plan. She did say that it may be that I have a bit of a break and then retry them, but to be honest I'm not keen to do that. I feel for you with all that going on in your mouth, it must be really awful for you. Has your GP given you anything to help you in the meantime? I hope you get on with the MTX as it can be really good for some people. All the best. x

Furpaws
Furpaws in reply to springcross

It makes you very wary about trying the same drug again, I now know with what happened to me I wouldn't be keen. You also know your body best. I have been washing my mouth with salty water and that helped calm things down. I am currently on 5mg steroids which isn't doing much and nefopam for pain relief. Look after yourself. X

springcross
springcross in reply to Furpaws

Yes, I am wary I must admit although it's a shame because they had helped a lot in improving the discomfort. I will have to wait and see what is said on Monday afternoon. I hope all works out well for you with the MTX, let us know how you get on and I hope the discomfort and tiredness you are feeling is short lived. All the best. xx

I did drugs other way round now off Sulfa and waiting to speak to consultant on Thursday to see what the 3rd drug will be. Hope you have a better time with MTX it’s hard going when the drugs don’t suit you and the have to restart the process always takes so much time x

Furpaws
Furpaws in reply to Deeb2908

It's the time it takes to get anything done that frustrates me especially when you are in pain and want to be able to do the things you used to do. Here's hoping 3rd time lucky for you. X

'Fingers crossed' is the curse of RA. I wake up each morning with my fingers often well and truly crossed! It takes soaking in warm water to slowly untangle them.

All the best on Mxt . I was on it for nine months and felt great, v little pain and totally mobile. Sadly, blood tests showed that my liver was not so happy and I had to stop it. Now on Leflunomide which seems to be starting to work after six-seven weeks, so I'm hopeful ...

Oh dear! This sounds so familiar- I had them all - Sulfasalazine, Penicillamine, Methotrexate, Hydroxychloroquine , steroid injections - all to no avail over a 20 year period until finally I was allowed to go onto biologics. By this time some of my joints were irreparably damaged . Admittedly when I was first diagnosed in 1990 there were limited options and the future was bleak.

I’ve had several Biologics but have now settled with Rituximab which is like a wonder drug for me. I don’t understand why they keep peddling these useless old treatments when they have got much better options in the new drugs!! Keep pushing until you get something that works! There are side effects with everything and we all have different reactions but my experience is that the Biologics offer the best hope of a return to a more normal life! Wishing you all the best. X

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