Feel really quite ill - sulfasalazine

sulkycat

Hi
I started sulfasalazine a few weeks ago and because I struggled with meths was told to take it slowly. The first two weeks on one a day - felt very tired and a bit spaced out and headache every day but bearable.
Doubled the dose on Tuesday and have felt increasingly iffy.

Yesterday was spent postly in the bathroom (sorry!) with a very upset tum, today I look about to explode. My poor tum is swollen, I feel sick, exhausted and generally unwell.

I live alone so can just go to bed when I need to etc, and usually grit my teeth, have a mutter then get on with it but at the moment I am struggling.

Is this normal with these tablets? I feel I am 'failing' with every medication they try me on. Oh - I also went up to maximum dose of Tramadol nearly 3 weeks ago.

tjt6768

hi. I've been on sulfa for almost three months now, like you started very slow, one a day etc then slowly built up to two on a morning and two at night. I've been fine on them, bloods done every two weeks and everything is going well.
I assume you'll be having regular bloods done? It could possibly be the tramadol.. Could you ring your rheumy nurse for advise or your GP? I know that the sulfa if anything has really helped my IBS/IBD and is used to treat them.. I'm no GP though..
Are you on any stomach protectors for the Tramadol? Lanzoprazole etc?

Hope things settle for you soon. Let us know how you go on.

barbara12

Gosh I wish I could help you, but I havent been on any of those meds, I just want to add my support and at least our Tony has given you some advice
Please let us know how you get on...here's some hugs to be going on with ((((())))

skezier

Hi Sulks,

I was on sulfa for quite a while.... over a year and by the end was on 7 tablets 2x a day..... I reacted to it the whole time. It was rough getting to the dose that was right for me... harder still to go over that dose. The rumo decided to hit it hard for a min.... I seriously did react to it and thankfully was allowed off it and went on the mtx.... might have reacted to that a bit but .....

It might be that you get used to the dose and it all settled but I think it might be a good idea to ask your doc, rumo nurse or rumo about it. It might be that they can give yu something to counter act this or it might be something unrelated that they can help with as well.

Its best to run it past someone though.

Leaving you a cyber ((( ))) and a hope you soon feel a lot better. Cris x

tillytop

Hello Sulkycat and sorry you are feeling so rough.

Sulfa was the first DMARD I had, many years ago now, and until I got used to it it made me feel truly dreadful with shocking headaches and nausea. I had been told to increase the dose by one tablet each week and I found that towards the end of each week I started to feel a bit better, but then I would increase the dose and feel as if I was back to square one.

But after a few weeks at the full dose (which, for me, was 4 tabs daily) my body seemed to get used to it and I took it for many years after that with no problems at all.

If you are concerned, might be worth speaking to someone in the rheumatology dept for advice but hopefully, if you can stick with it, things will get easier.

Thinking of you.

Tillyxxx

Star2001

Hi, this is the start of my 6th week on Sulfasalazine and I have been struggling too though I may have picked up a virus of some sort along the way - nothing confirmed but that's what it feels like! Problems seemed to get worse once I hit the top dose of 4 500 mg tablets a day. The tiredness, sickliness, rash and general "out of sorts" feeling has been getting me down and my usual RA aches and pains are there still. I know it can take up to 12 weeks for improvement to show itself so I'm trying to persevere. I really am going to keep on with it to give myself a good chance but I know it's not easy and I really feel for you. I hope things improve soon!

Star x

frogmorton

Oh Poor you Sulkycat

l am so sorry....can you takes some advice....maybe it will be possible to do your increase even slower????maybe one one day two the next and so on until your tolerance is up.

I am glad you can rest when you need to.

Lots of people struggle on sulfa, but lots of them do get there in the end.

A big slice of encouragement for you (and Star too) l hope things do improve for you and if not maybe it does have to be back to teh drawing board.

Oh some get anti-sickness meds from their docs...worth asking??

love

Toni xx

valval

hi been on it about 4 weeks first few felt sick and out of sorts. had awfull cold since before christmas but it just clearing up at last and do feel much better now i do hope it settles soon if not contact rhummy to find out what going on val

Star2001

Thank you Toni x

sulkycat

Thank you all.

Have been to the Dr this morning - she said it is out of her realm of expertise, but as I have all the side effects except the rash and a temperature she told me to stop the sulfa until I can speak to the hospital (they don't have anyone in the unit on Fridays).

She also said if my temperature shoots up to go straight to hospital.

She has put me back on the lower dose of Tramadol, again until I speak to the hospital. She was good, double checked everything with another Dr to be on the safe side. I feel sick as a dog today and am going back to bed!

I don't like stopping medication as I feel a bit of a failure or a wuss, even though I know this is silly. But as the Dr said, better to err on the side of caution.

Thank you all again.

valval

sorry to hear this it the time we have to wait for meds to kick in that causes us to feel let down when they do not work as we wish it meens another wait while next ones kick in take care rest up val

stickywicket

You are not a failure or a wuss, sulkycat. These are powerful meds and we have to respect them. There are times when ploughing on regardless is the right thing to do and times when it is definitely not the right thing to do. Most of us have done the on/off thing at some stage. Your GP sounds good and on the ball. I hope you soon feel better in yourself and the meds question can be sorted.

ruby2

Took me a long time to get onto full dosage, but did keep trying and so after a couple of years I finally got to tolerate the full dose.
I have felt the benefit of it, and wish I had persevered sooner, but other conditions flared when I did.
Stick with it! it really has helped me.
Roo

amboritic

I struggled with sulpha for the best part of a year.

Celebrated when rheumy decided to tey MTX.

I also had more problems with being bunged up rather than loose in the bowel departmwnt.

If your abdo is swollen then you may need to get this checked.

There is such a thing as proximal constipation which is sometimes sufferers think is loose bowels as your motions can appear loose.

Not wishing to lower the tone but there is actually a chart to define your bowel motion.

There is nothing wrong with going to a Walk in Centre or even A/E if you are concerned about your symptoms.

sulkycat

Thank you all.

The hospital have rung while I was asleep and left a message - I am to stop taking the sulfa immediately and they will ring again asap.

Will post more when I know more - I really feel ill today, slept for four hours after the Drs this morning and still have a belting headache and hurt all over (bit like the flu but without the snot!).

tiggernut

Hi Sulkycat,

I tried sulfasalazine a few years back. Big no no for me too.
On one tablet I was fine no problems at all as far as I recall. When I increased to two I spent most of my time in the loo!
I had to stop taking it in the end.
I do have IBS and I do have problems with new drugs some are worse than others.
I had the same problem the day after my MTX until I went onto injections.
Hope you get something that suits you soon and makes you feel better.
Take care,
Anita.