sulfasalazine

earthspirit

im on week 2 of this drug. ive read all about the side effects and yes i am suffering the severe gut pain & headaches BUT i have other things happening :
it feels like they are working a bit already and i have been t between 6 - 8 weeks for them to really work.

firstly what is it i am going to feel?
at the moment it seems like some of the swelling in my joints is reducing but that the pain is increasing. is that an experience others have had too?

i have highly active rheumatoid arthritis with around 200 joint affected so the drug has some very hard work to do.

they are making me feel ghastly sick & my body feels dirty & itchy inside.

stickywicket

I don't take sulf. I'm on meth but a lot of our meds can affect the stomach. If yours is, are you taking a stomach protector such as Lansoprazole or Omeprazole? If not, ask your GP for one. Stomach problems you don't need.

As for what should you feel - hopefully a bit less of everything but it is early days yet and I don't think it's helpful to analyse everything in detail. (On the contrary, I aim to forget about arthritis as much as I possibly can) Just hope it works. You'll know after a while.

(I really can't relate at all to feeling 'itchy inside'.)

dreamdaisy

Who knows what you will feel? I've been taking sulph for ten years and it controls my psoriasis - when I began taking it the bruising was extensive but that was my only side-effect, I didn't have headaches or nausea. It has never touched the arthritis pain but then I don't have RA: I remember starting it and thinking 'That's it, I'm sorted.' Yeah, right. Everyone is different in what works and how, and when. DD

nikkib007

This is really stange, I am on my second week on sulfasalazine and I am like you, normally I would have to go to bed by 9 o'clock although now I am up at 10 o'clock so I think it is helping with my tirediness! also I feel itchy as well only in the evening though, so I do feel that the drug does seem to work on small parts quickly

Good luck with it!

Nikki
xx

frogmorton

Hi earthspirit

Well I am so glad to hear you can feel the swelling at least easing a bit (and you Nikki too with less tiredness). Agreed the drug has a lot to do, but I understand that you dont want to take anything stronger. 200+ joints is a lot.

The chances are your stomach will get used to the medication with time, but if it doesn't and I am not sure about the other symptoms. A word with whoever is responsible for your care (or rheumy nurse?) would maybe be an idea - just for reassurance.

2 weeks IS still early days - I wish things worked quicker so we'd know.

Take care

and more sufla-taking folk will hopefully be along soon

Love

Toni xx

earthspirit

the sulph feels like bits of broken pottery trundling through my guts lol

ive tried that laproprosole whatever its called along with the other stomach stuff and they all make me feel really awfully sick.

i do use, when i remember, to eat some lettuce leaf before meds or food - old army remedy for stomach ulcers. makes sense, the thin tissue lines the stomach walls and prevents irritation.

doctor also gave me domperidone for the sick feeling which for me is actually worse than the terrible pain and they do work. i dont take the 3 a day prescribed but only one when the feeling becomes overwhelming.

im putting a lot of faith in sulfasalazine as my thinking is: sulphur kills toxins - nothing can live in a sulphur atmosphere, so im hoping it kills the toxic effects of what the RA is producing.

would be good to hear about other peoples experience with this drug as there doesnt seem to much online about it other than the side effects of painful gut

tjt6768

I'm in about month eight of taking sulfa. it has done wonders for my ibs/ibd.. Stomach I is so much better. Joints have eased a bit but I think they'll add another drug soon.
Only side effect I've had from sulfa is loss of appetite.
I'm happy though as I needed to lose some of the chunk around mi trunk lol.

We all react differently, but I do wish you the best..

tillytop

Hello Earthspirit

Sorry you are struggling with the Sulf.

When I first started Sulf I had horrendous headaches and nausea but, after a few weeks on the full dose my body seemed to get used to it and I took it for about 10 years after that with no problems at all. Although it did help the RA to some extent, it was not sufficient on its own and for most of that 10 years I took it in combination with other DMARDS. I only stopped it because other drugs took over and the rheumatologist and I felt it wasn't really adding anything to the management of my RA any more.

I do hope you get used to the Sulf soon Earthspirit and that it does begin to help you.

Tillyxxx

dibdab

Hi,
I take sulfasalazine in conjunction with hydroxychloroquine sulphate, they help to some extent, but my RA is still not well controlled so I'm about to start weekly gold injections. Like you the sulfasalazine play games with my guts- often get an upset tummy :? and have to miss doses. The gp says the stomach protectors wouldn't help so haven't tried them.

As everyone else has said we all resond differently to each drug and it's a bit of trial and error till we find the combination that works for us- hope that you find a winniing combination soon!

Deb x

earthspirit

thanks again for replies from users of sulf!

im not taking for any ibs etc only for the RA as i was so reluctant to have the methotrexate injections. i have a big problem that cant be fixed with a long time broken rib, untreated that healed resting on my lung. i already have pleural issues with the RA as well as having multitudes of big scars in my lungs due to pneumonia (also never treated)
there are other reasons for declining treatment with meth but its the coughing chest infections etc that freak me out the most. this broken rib on my lung feels like a golf ball being bounced off a drum when i cough so anything that could cause chest infections etc i fear to go.

sad to say that i am smoker although vastly reduced but i do not have smokers cough nor any lung related issues

i got RA instead :roll:

earthspirit

oh & ps to the smoking...i did give up for about 3 months during which time i did not feel a single bit better and picked up a **** again. i reduced from over 30 a day which probably played a contributory factor in the full blown RA i now have and have reduced to 10 - 15

pps i did not smoke when i had this disease as a child and nobody around me smoked at all...im not in denial that smoking "Might" make the pain and the disease itself worse

diamond

I have been taking sulpha since January,it is helping me but i feel i possibly need something else added to keep on top of inflammation.I at first got headaches and some nausea stomach is protected with Omeprazole as i have had gastric probs.Like Tony i had lack of appetite for a while.I am now on 6 tabs a day.Type in sulpha into search engine at top of page there is a good few posts on it.It is early days yet for you Earthspirit time will tell if this drug will help you.Good Luck.xx

dreamdaisy

Hmmm. Of course giving up smoking didn't make you feel better - I was never a committed smoker, I loved my Gitanes (and still love the theory!) and the habit petered out last September as I no longer enjoyed it (yet another 'joy' of life lost :roll: ) but did the arthritis 'feel' better? Of course not, the two have no correlation whatsoever. The RA is to do with your immune system, no more, no less. DD

ELAINE55555

Interested to read some views on smoking. I was diagnosed with RA 9 months ago. I went from 15/20 a day down to 5/6 a day, mainly because I feel unwell a lot of the time and dont enjoy cigs so much. However at my last ruemmy appointment,I was given a lot of grief for the small amount that I do smoke, and now have given up all together. This has caused me no end of displeasure. I miss it. Do I continue with my small pleasure or deny myself?? I know the sensible answer is, of course, to not smoke, but to feel miserable?

dreamdaisy

I never smoked that much on a daily basis - I think my record was eight Gitanes in one evening - and I never had trouble in stopping when the circumstances did not permit. I have to say that I am somewhat saddened that I no longer indulge - I have a fresh pack of twenty white beauties downstairs, I took then with me last week-end when we had a grand time with friends (who smoke) and it never crossed my mind once to light up. I know that I have BP problems thanks to humira, I now take meds for that and it is controlled, so whether that has summat to do with ot or not I don't know. Do I miss it? Yes. Do I want to re-start? No. Damn. DD

dreamdaisy

Hello earthspirit, how are the grumbling guts today? Sulph is one of those 'crossover' meds, i.e. it can be used to treat a range of conditions at varying doses. If you are on your second week of it I guess that means you are on one tablet night and morning, I remember that sulph has to be gradually increased to give the body time to adjust. I didn't have the headaches or nausea but the bruising was amazing! My legs were smothered with 'em, but the bloods always came back OK. How often are you having yours done? Mine were fortnightly back then. DD

earthspirit

i dont seem to have any of the brusing yet but wow do i have some head cold lol - seems like they gone to work rapidly on my immune system.
guts still feel like they got bits of broken clay trundling though them but i can live with that. i think im most hoping that it reduces the swelling of joints in my neck as these trapped brachial nerves in my neck and arm are just so incredibly painful.

i have some wicked dreams with the dihydrocodeine - last night it was having tiny pustules of filthy yellow sludge all over my legs - better make sure i use a clean razor when i get round to shaving them haha

thanks for your concern

dreamdaisy

We do look out for one another on here as we are familiar with the trials and tribulations of the drugs etc. The cocos gave me odd dreams, so I cut down and won't take any after 2am, which has helped on that front. DD

earthspirit

reaching the end of week 3 and how i feel is much worse than i did with an untreated condition.
i feel like im boing slowly poisoned and getting out of bed is much harder than ever.
they do strange things in your head - i never really suffered headaches even with all my neck damage but am now very lightheaded and dizzy and feel like im going to pass out.

the swelling is slowly going down but i seem to have even less mobility as the "dry" joints are now more painful.

the blood tests show zero improvement in my platelet count so still high risk for dvt.
i find it easier to cope with the pain than the wiped out in the head feeling. sick / dizzy is really the worst part of it for me.

does anyone know how to eliminate that side effect? should i eat more before taking pill or drink more water? i feel all shaky and that wasnt a symptom before either.

i am really struggling to get to grips with feeling much worse is better!!!
at least my head was able to cope with the untreated condition and the aspirin i was taking for the high platelets was working. i am definately in a more depressed condition than i was pre sulph.

my previous state of mind was all positive but i have now totally changed and my 2 arms and legs are as unfunctional as they were before.

tillytop

Hello earthspirit and I am so sorry you are struggling with the sulf so much.

My only advice here is to persevere with it if you can to see if your body does get used to it. Presumably, at the end of week three you are still building up to the full dose? I know that when I first started it, every time I upped the dose the vile headaches and nausea got worse again and it wasn't until I had been on the full dose for a few weeks that the side effects eased - and after that they were no problem at all. I remember phoning my GP for advice and him (not very helpfully) saying "well if you can't cope with it just stop taking them" and I so nearly did give up. But I have learned over the years that many of these meds take some getting used to so now, I tend to do my best to grit my teeth and give them a really good try before deciding whether a) to continue and b) they are helping. The other thing I have found is that it is harder to cope with med side effects when they are not doing anything to help the RA. If you get to the point where they start to help, sometimes (but not always) that puts the side effects into perspective.

When I took Sulf (and got up onto more than one tablet) I used to take some in the morning and some in the evening, rather than all at once and I used to make sure I ate something as substantial as I could manage before taking the pills. Not easy I know when you are feeling so sick but I don't think taking them on an empty stomach, or with just a small amount of food is necessarily helpful.

Final thing to say is that if, apart from being very unpleasant, the side effects (like the shaking and itching you mentioned before I think) are worrying you, I would mention it to the rheumatology dept, just for reassurance that this is "par for the course" rather than an indication of an allergy to the drug.

Thinking of you.

Tillyxxx

earthspirit

thanks tilly top
i phoned nhs 24 which i rarely do
lots of people spoke to me and then a apparently very clued up doctor spoke to me.the build up in week 3 had got really bad - i was totally lightheaded, couldnt drive as it didnt seem safe to do so and the headache was like severe migraine (i rarely suffer headaches) and everything was spinning in front of me and getting worse.

i did appear to notice a very slight decline in the swelling i have all over but overall was feeling much much worse than i have during my 18month flare.

the doctor said that although liver and kidney function tests were normal since starting drug, my liver count was elevated.

he told me basically to stop taking them on the grounds that building up to taking 4 on monday was not going to alleviate the symptoms and he said the side effects appeared to be worse than the benefit. i did stress to him that i would continue the drug if this was a normal reaction and he reckoned the severity of the sight disfunction was enough to stop taking them.

like you said above tilly you felt better as the dose was increased, suffering side effects when you upped them where in my case a week on 3 a day has put me at my lowest ebb.

he also said that the upped depression was not a good sign and basically not take any more

he also said that my elevated platelet count was more important to treat on its own with aspirin.

back to my own doctor on monday it seems

tillytop

Hello again earthspirit.

I am glad you phoned NHS24 and got some advice. Defiitely better to be safe than sorry I think.

The question of benefits/vs side effects is never an easy one. I never had the dizziness or vision loss you are experiencing when taking sulf and that must be very frightening. I did, however, spend much of the first few weeks on Sulf in bed thanks to some of the worst headaches I have ever had and accompanying nausea and, of course, during that time I had yet to see any benefits either so I do understand, at least in part, where you are coming from. But as I think I said before, I took Sulf for about 10 years after that with no problems at all.

I think this is one of the hardest things about the RA drugs - the fact that they can take many weeks before you know if they are going to help and, in the meantime, you can find yourself battling with side effects which leave you wondering which is worse - the drug or the RA. I have to say though that, of the many, RA DMARDS I have taken over the years there have only been three whose side effects defeated me and most of the others have either had side effects only early on until I got used to them, or no side effects at all.

The depression you mention is completely understandable given your current health situation earthspirit, and you are definitely not alone in feeling depressed. I am just emerging from months and months in a very deep, dark pit and am beginning to cope better again, even though, if anything, my health situation is worse not better.

Hopefully your GP will be of some help next week but usually, because these are more specialist drugs, the rheumatologist would be the person to advise you and hopefully suggest an alternative for you to try if he feels that the Sulf really isn't right for you.

Meantime, please do keep sharing here - I have had fantastic support from the forum members and knowing I can share with people who really do understand has made a huge difference to my ability to cope.

Thinking of you.

Tillyxxx

earthspirit

thanks for your kindness tilly.
i didnt take the second dose today and already i feel better.

i know what you mean about being laid up in bed and right now, while packing to move myself back home to london from scotland is just not the time to be messing around with my body and drugs.

i think im pinning my hopes on physio being able to help me with my knee so that i can at least walk and have some form of mobility is the route which i feel is best for me right now.

my mega flare isnt getting any worse even though its not getting any better but i am concerned about the high risk of deep vein thrombosis DVT

i know i will feel better when i am back in the warm south and among my own comforts and at least able to take a bath to relieve the symptoms, rather than this very awkward shower. the bed here is nasty and lumpy so not a great help for my sleep either.

i think it might be wishful thinking but it also feels intuitive that my overall health will improve when the actual living conditions improve

feeling drunk giddy lightheaded on tablets is not the way i can suffer right now.

i will phone rheumatologist but getting an answer on the phone is like one of the 7 wonders of the world lol

earthspirit

i decided that i need to try to stick it out with this stuff even tho i feel really the worst ever. i have to accept the realilty that im not just doing this to save my joints from damage but actually to save my own life possibly.

its ok if you just have a few damaged joints, but sadly my RA was left untreated for so long i have also the internal damage and the messed up blood.

looks like im going to be in bed a lot

stickywicket

earthspirit wrote:

its ok if you just have a few damaged joints, but sadly my RA was left untreated for so long i have also the internal damage and the messed up blood.

Could you explain that, please, earthspirit?

Mine is officially Stills Disease, the juvenile form of RA (I know, it sounds ridiculous when you're in your 60s :roll: ) and I know there is more stuff can go wrong than with the adult form, although it hasn't done with me.

Also there were no DMARDS around when I was diagnosed. I was told to 'take aspirin until you get a buzzing in your ears'.

However, I have no 'internal damage' other than the stomach problems caused by years of anti-inflammatories before the stomach protecting meds came along, and I don't even know what 'blood problems' are possible.

dreamdaisy

'It's OK if you have just a few damaged joints . . . ' Ye gods. Speaking as a mere amateur at this arthritis business I would like to state that, in my opinion, even just one damaged joint is a complete outrage. DD