Help - my sorry sulfa saga continues....

Rainbow77

Hi everyone

I feeling very desperate today. I am fed up, frustrated and feel really unwell.

4 weeks ago my Rheumy upped my sulfa from 4 tablets to 6 a day. I went through the process of slowly in increasing them. When on the full dose the side efects really kicked in, headache, nausea, tiredness, headache etc. I had that for a few days and then after feeling slightly better, I turn a big turn for the worse last weekend. I felt absolutely exhausted, deathly white colour and my gums started really bleeding. I phoned my GP on monday and he said to stop the sulfa immediately and go for a full blood test and he prescribed painkillers for any joint pain I may have due to no sulfa.

I just still feel absolutely wiped out, sleeping all the time, exhausted on any exertion, to the point of having to ask people to come in everyday and do the washing up, cooking, cleaning and any little chores I cannot do. I just don't feel any better yet.

I am not sure of my next move? How long do I leave it to get the blood results? Do I start back on the original amount of sulpha and try and increase it more slowly again? Shall I call my Gp again? I am just so tired, the thought of anything that requires effort is wearing me out already!!

Thanks for listening to my rant, I feel really desperate today. I feel like I am back to square 1 and have hit a brick wall!! Not sure if I am going to get over it.

I am really enjoying my summer holiday!! (I am a teacher!)

Fayann xxx

janie68

Hello,

Contact rheumy nurse or clinic immediately and they will advise on what to do.

Hope things get better soon

Janie

lindalegs

So sorry Fayann that you're feeling so grim

I would leave it about three days before you ring for your blood test results - I know they come through quicker these computer-driven days.

I wouldn't have thought they'd put you back on Sulphasalazine as your reaction was quite back and it sounds as though you're still not over it to me. Your Rheumy will probably try you on something else now. I was once told there is a whole mountain of drugs out there for arthritis sufferers - there's bound to be one that suits you.

You take care and hope you start to feel better very soon.

Luv Legs

jaspercat

Hi Fayann, sorry to hear that things are getting worse, the bleeding gums problem was one that I had on Sulpha, I personally would get in touch with the Rheumy nurse and ask for an appt with your Rheumy asap, my guess is that they are waiting for blood test results before deciding what to do next, I sincerly hope that things improve for you soon love Jaspercatxx

bubbsie

Hi Fayann,

I am sending my(((( cyber hugs ))))))

I went through exactly the same thing in may this year.. Like you I was not feeling the good effects of sulpha then rheumy upped me to 6 daily and like you I took a very bad turn for the worse I really thought I was dying never felt so ill in my life everything flared, I refused to take anymore and had to wait 6 weeks to see my rheumy mean while my doc put me on oral steriods to tied me over... Went to see rheumy and he put me forward for anti TNFs , The good news is I passed both assesements and due to start them end of August, And though I am stiff and in pain at the moment My body has recovered from sulpha and I feel better inside,

So good luck hope you feel better soon

Bubbsie x

Rainbow77

Hi

Thanks for all your replies.

I have just spoken to by GP. He said - I am a medical mystery!! (ha ha ha) My bloods are back and they are all ok. He said that he thinks I had an adverse reaction to the medication and that the symptoms were early signs, but did not have them long enough to show up in my bloods.

I am going to go back and take the original dose of sulpha that I have done without problem for nearly 2 years and then when I feel really well again, I can increase them again but much more slowly and only if I feel well and see what happens?????

I felt rotten all last week - spent most of it - totally out of it asleep. But I do feel much better today and I feel really hungry and eating everything in sight - so that is a good sign. I have lost so much weight in 2 weeks - hate being bony! It is not normal for me.

Going to try and take it easy though for a couple more days and then start to try and enjoy my school holiday!

Thanks for all your help and I do feel ressured now. We know our bodies well and I have not felt ill like that.

Fayann xxx

woodbon

Hello,
Just to say I'm glad you'r feeling a lot better. Getting your appitite back is a sure sign you'r on the right road!
Love Sue