stomach problems & fever started last Thursday night. The fever's gone now but diarrhoea and washed-outness still bad. Am hoping Rheumy nurse might get back to me tomorrow, she didn't on Friday when I phoned. GP thought I had gastro-enteritis but not very convincing.
I've not had any Naproxen since this started as I assume that's the least important drug (??) and I only took 2 Sulfa tabs on Friday (instead of usual 4) and just one yesterday evening. Diarrhoea does seem to have worsened after the Sulfa but cannot be sure that's to blame.
Anyway, today is my mtx day. I'm feeling pretty gung-ho - really fed up with every week being blighted by something or other. So I'm going to take my 25mg of Mtx plus maybe 3 Sulfa tablets ........
This is just a plea for any more ideas or experiences relating to possible similar reactions to Sulfa or taking meds during an attack of gastro-enteritis. GP does not seem clued up & Rheumy nurse obviously very busy ...... I've never been in this situation before.
PS - I feel completely toxic, that's the only way I can describe it.
ask . its a difficult call x
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Well glad you agree about that - not just me being a muddle-head! Must remember not to get ill just before the weekend next time! x
i kNow i..m v bad , and had massive row with my chap as in so much pain!!,
see Gp or ring rheum dept and get advice. im half dead im afraid.. useless consultant APPOINTMENT!!
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Was at my wit's end yesterday - looking back & thinking that there have been maybe 3 months when I could have held down a normal job, living in hope all the time but never getting up from under. Today thinking I'm going to reign in my expectations & try to get used to people seeing me at my worst instead of hiding things so we've semi-planned a holiday .....
What has happened to you is dreadful. Have you and your chap patched it up yet?..... I'm sure he understands though know it's tough on partners. I keep thinking about your appointment - I just don't get it. Try to rest & don't bottle stuff up, that's not fair on you. x
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made up with my chap yoday been v poorly x
I've just shouted at my family - OH and one son because I'm feeling crapy too - just very tired and achy. If you don't spell it out others don't get it and if you do you appear to be a health bore?
Not sure anyone can advise really Luce. I'm taking Naproxen round the clock and paracetamol too and I saw a GP to check this was okay on Friday what with weekend coming. You only have to wait until tomorrow and can hopefully speak to the rheumy nurse then. Its not right to feel toxic but its exactly the way I was feeling right up to the drug break. What I learnt is that most of my strange symptoms such as vile taste weren't down to drugs at all as I had supposed. I think having a disease that is rampaging around or even sneaking quietly can cause depression, anxiety, toxicity, weird tingles and deep heat because RA is systemic. The arthritis doesn't seem to cover half of it for me - perhaps its same for you? Or it could be the Sulpha - I felt like death on that drug. Hope things improve very soon for you. Tilda Xxx
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Yes, systemic stuff or drug toxicity messes me up more although I know my joints are at risk. Things were so level last year though & I got a lot done (I'm sort of self-employed too) but this year's a mess health-wise. Have just cleaned my bedroom, came down to collapse on sofa but husband playing Patti Smith full blast "OH GOD I'M SO GODDAM YOUNG!" having resurrected his deck. Tripped & hit knee on a big speaker & completely crumpled. Must be one of those days!
Next week will be so much better.
Hope Rheumy nurse is feeling inspired!
Ps I am working still but only to 50% of my capacity due to low energy, painful wrist and not having enough focus. Even for self employed RA is a nightmare.
Its the kind of thing that can well happen with sulfasalazine, and the only way to find out would be to stop it completely. Naproxyn can give acidy, painful stomach, and indigestion-type pains, but wouldn't be quite like gastroenteritis.
From my experience, even rheumatologists and rheum. nurses don't seem to take the hypersensitivity side effects of SSZ very seriously, even though there is a lot of documentation about them. The SSZ hypersensitivity can come into play many weeks after you have started taking them, or after dose increases., not just at the beginning.
FWIW, I had a pretty bad reaction to SSZ, but within a couple of days of stopping I felt a huge amount better. I did take over the counter antihistamines for a couple of weeks though, as it takes that long for the SSZ to get fully out of your system, and I seemed to need the antihistamine to minimise the side effects and help me get through it.
After your reply to my last question I looked up Sulfa side effects more determinedly & plenty of credible sites confirmed what you said.
Rheumy nurse did tell me to phone immediately if I had any side effects, shame she didn't return my bloomin' call!
My ESR was up in 60s but just starting to fall in 4th week of Sulfa, swellings down too so I'm motivated to keep going if possible. I've only had one tab today about 6 hours ago & still feel lousy but no diarrhoea so the Sulfa may be in the clear in terms of worst digestive issues ...... however Sulfa has definitely made me considerably more unhappy & uncomfortable than mtx ever has including permanent queasiness.
It's such a dilemma. If Sulfa doesn't work out for me I'm meant to be going for Biologics (will believe it when I see it) but to my surprise would prefer DMARDs to work, at least for a while longer.
For some unknown reason I can easily imagine that Sulfa side effects wear off quickly .... so actually that might make a decision to persevere if possible a little easier to bear.
There is a defined protocol for desensitising to sulfasalazine that I discovered and talked to my GP (who was supplying me with them) about. Its generally used for inflammatory bowel disease where SSZ can be an important med to have on board, so they don't like to give up on it too quickly. The proper protocols do it incredibly slowly, using the liquid form of SSZ to get much smaller measured doses than the tablets could do. My GP suggested I first cleared the SSZ out of my system by waiting 2 weeks, then restarted at much lower dose (half a 500 mg tablet a day), and increased much slower than usual. Of course it didn't work for me! I still couldn't get above 1 tablet a day, and that just wasn't going to be enough. It might be something you could talk to your GP or rheumatologist about.
Are there any other DMARDs you could try? SSZ is a particularly bad one for allergic reactions.
What is perhaps a little hard to understand is why my arthritis symptoms have worsened as well as digestive problems. A week ago I was walking almost normally & was quite limber but now I'm stiff, slow and in a bit of pain which is unusual. Fatigue is pretty bad too. So I'm inclined to keep trying with Sulfa for that reason. (Perhaps I did have a virus & it knocked me back?)
It's interesting what you say about desensitisation. But as you also touch on it's a question of whether it would be worth all that. I'm all over the place with this - so I really appreciate your input, thank you. I haven't even given it a week yet & perhaps I should but I must admit that waking up this morning with more stomach pain & feeling exhausted inclines me to throw in the towel if things don't improve rapidly.
I have considered myself lucky in that my Rheumy dept. have shown no signs of putting me on one dmard after another just for the hell of it (or to save money!). And increasingly I've got the impression that they don't believe dmards will work on me. Maybe I'm wrong & perhaps I should ask them straight. Ironic though that I'm now thinking of asking for another dmard!
The spectre of rattling through the drugs and being left with no options other than steroids does worry me. I'm frightened of biologics - that sounds childish but it's the truth. Thing is I had a relatively long period of being pain free, energetic & fairly supple! Re-orientating myself will take time if it turns out that I can't get back there easily.
I've gone on a bit - you've got me thinking & that's needed.
All I can offer is my experience with Sulpha, which did take a while to get used to (previously mentioned embarrassing incidents aside, I did have general sick feeling, blinding headaches etc etc). I did get to the point where it was a daily battle of wills between me and the huge orange monsters on the table, and when Doc put me up to 5 a day I nearly threw in the towel. But I didn't and they're now fine. But how you tell the difference between a side effect that will pass given time, and an unsupportable side effect does sort of baffle me. Think it has to be down to gut instinct - no pun intended. And also general drug sensitivity I guess as I do seem to be pretty robust in terms of my ability to down chemicals, or at least get used to them. But hope today is turning out fine, stomach and energy wise at least. Px
Hey Polly - is that you? You look lovely, I've got so used to thinking I was talking to a little frog!
Rheumy nurse phoned today hugely apologetic that she could not get back to me last Friday & very understanding. And she doesn't know any more than I do or you do but endorses my approach which is to stick on 2 Sulfa tabs per day for now & work my way back up to 4 if I can.
If it doesn't work out then she said they will act swiftly & it's my call.
My stomach is now loads better so I will try to persevere which is the only way to evaluate the side effects I suppose. My gut feeling is that the lesser side effects I have will pass too, as they did for you. Some remind me of pregnancy - last time I was pregnant back in Victorian times I took against our brand new living room carpet. The colour made me feel so ill that I made my partner promise to take it out and burn it. Fortunately the feeling went before it came to that but I'm now getting a very similar thing with colours. Also dirt makes me queasy which is pretty rich given my standard of housekeeping.
Energy levels are low ..... it's scary how little I can do before nodding off. But I think I'll be okay.
Thanks for following this up - nice to have an opportunity to report that things are looking up! x
yes I thought I should finally come out from behind my alter-ego, although I do feel fairly frog like quite often. (As well as being preoccupied by them at times in our rural backwater - long story but involves a local frog rustler, our pond, and an inspector Clouseau like frog policeman).
Don't persevere beyond reason tho', if it doesn't start improving soon'ish. I do feel a bit nervous gaily saying it ended up ok for me as we are all v different and some people do seem not to get on with sulpha in a fairly major way. But RA does seem to turn you into a different person in the strangest ways. My RA plus is becoming a laid back and tranquil creature rather than a hyper fruitcake, perhaps yours will be to turn into a domestic goddess of cleanliness? Px
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