Sulfasalazine

Sharon2960

Hello everyone, I don't log in very often, been spending time with daughter, as 1st grand child's birth is rapidly approaching, so helping with plans & prep - all very exciting! Been to see consultant this week, from now on will be looked after by specialist rheumy nurse practitioner apparently! Having more blood tests and X-rays, and the suggestion us that I start on sulfasalazine, overlapping with prednisolone, and coming off he pred by next summer. How gas anyone else got on with this please?

lululu

I have been on Sulfa for @ two years, helps with pain and stifness, I stopped it for a short time and found I could hardly move, I felt the difference within one week when I started it again. I have Psa, Fibro and Osteo. I also have other meds for different pain.

dreamdaisy

Sulph was my first DMARD (I began it seven years after my troubles began) and I am still taking it. It controls my skin pretty well (I have PsA) but has never touched the arthritis. My friend Nigel (who has the same condition) finds that his is pretty well-controlled by sulph alone. Isn't he a lucky boy? Mind you it is only in his hands (it has been for a number of years now) whereas mine is more widespread. DD

beckie89

Hi All

I'm nearly 24 and have today have been diagnosed with Psoriatic Arthritis

The consultant suggested starting me on Sulfasalazine at my next app after Christmas.

Just wanted to know how people got on with this and if there any nasty side effects.

Thanks,

Bex

Toots

Hi Bex and welcome to the forum. Sorry you had to find us. You'll find a lot of helpful information here and the folks are truly lovely.

Might I suggest that you hit the 'Search' button just above (in between Members and FAQ) and type in Sulfasalzine. This will bring up past posts on the subject. Quite a few folks here have had experience of it and there are a few here with PsA.

I've been on the sulf myself for 5 months. In the first little while I personally had to battle sore throat, sore head and a touch of nausea, but these generally go away once the med starts to build up in your system. You'll likely start on a low dose and build up as the weeks go by. And you'll have to attend the doc's regularly for blood tests (probably every 4 weeks or so) to ensure that the medication isn't messing with your kidney function.

Hopefully the sulf helps you! Fingers crossed! x

barbara12

Hello Sharon..
Sorry I cant offer any advice, but I do wish you well with the treatment..and what an exciting time your first GC..I have 3 now so I know what wonderful times are ahead.... hope it all goes smoothly for your daughter.... :rudolph: x

Boomer13

Hi;

I've been on sulfasalazine for two months with some side-effects. I do take methotrexate and hydroxychloroquine DMARDS too, plus other drugs. I'm not sure my description of side-effects would be a fair comparison to others because I take so many other meds. I have become more sensitive to every new one I take, it seems (I have PsA). Anyway, I had some GI trouble initially; pain and disrupted digestion. This went away after second week. Then, headaches and sore throat/sinuses which still surface weekly, but have improved. I have some tinnitus, but really only notice it at night. Overall the side-effects are tolerable and I have a friend who takes triple the amount I do and has no side-effects at all. My point is, try not to worry, the meds affect all of us differently.

Best wishes,
xxAnna

firestar

Hi I have been taking it for about 4-5 months and had side effects at the start and then with each increase but they all seem to improve with time. I have moaned and whined about the tablets on very frequent occasions and was really ready to give up on them and arranged to see my rheumatologist to discuss this. And I surprised both of us when he said ok lets stop them and I said no lets just give them another week or so as I suddenly felt something was changing.
Well I am please to say the last few weeks things have started to turn and it has helped me feel less stiff and my peripheral joints have improved and it has taken over 4 months for the benefit and I was told 3-6 months so pleased I did not stop them and carried on. They have not helped my back but apparently they are expected too but I definitely have started to feel a bit more human again.
So good luck and hope it goes well for you too.
:rudolph:

Toots

Just borrowing Sharon's thread on Sulf since it was handy! (hope you don't mind Sharon!)

Does anyone know how long it takes for Sulf to leave the system? I stopped taking it on Rheumy orders last week and almost immediately have been feeling awful - now full of the cold and a hacking cough. I have a GP appointment this afternoon so I'll get him to check my chest to be on the safe side but I wondered if my immune system will still be compromised or if it will be back to normal? (or what passes for normal in this bod!). I turned to my friend google, but for once he let me down .....

Boomer13

So sorry to hear you are suffering, Toots. I believe Sulf is eliminated fairly quickly (the reason we take it so frequently) so perhaps you are flaring, or about to flare? If your immune system is back attacking your joints, etc, perhaps this has allowed a nasty respiratory virus to get going (just offering a theory).

Some drugs have a rebound effect. For example, prednisone which makes psoriasis worse when it's stopped. I'm not sure if this could happen with other immunosuppressants :?:

Awful for you...((((()))) Feel better soon. Hoping your lovely doctor has a solid explanation.

xxAnna

Toots

Thanks Anna! Hugs! I've updated on my 'Pocket Duties - First Rheumy Appt' thread, so as to not take up this one, it's worth a read if even for the giggle. Hmm or maybe it's a rolling of eyes. Possibly both with the right mindset! x

Sharon2960

Well, been taking sulph for 4 weeks now, along with pred. Feet and hands seem to be getting worse, not better! So flippin painful - pain in feet is akin to how they would feel if they got really cold, but they are warm to the touch! Hands are nearly always cold, so wearing gloves most of the time! My wrists have started to ache badly when I'm doing prolonged jeyboard stuff at work too! Hey ho, I'll keep taking meds and cross my fingers that it all improves in time! Sorry folks, just needed a bit if a whinge!

dreamdaisy

What type of keyboard do you have? I used to use a wrist support and found that helpful. There are gloves recommended for arthritics, they may help to keep your hands much warmer and less achey. I can't remember the name but I think it starts with 'iso', isotherm, isotonic? DD

Sharon2960

Thanks - bought some gloves, DD, they're IMAK, came today so maybe too soon to say if they will help!

beckie89

So I've been taking Sulfa for 3 weeks now, doubled my dose from 500mg to 1g on Tuesday, and I can safely say the nausea and heartburn I've being suffering from is horrendous

Does this get better, or is it my body's way of saying it doesn't like this drug?



Bex x

dibdab

Sorry to hear you're getting problems. I'd say talk to your rheumy nurse and ask for advice. I have to admit I get tummy problems but not that bad- sometimes I miss a day just to give the tummy a break-but I've been taking sulf for 6 years in combination with plaquinel and methotrexate so it's hard to know which drug creates which side effect :? Oh the joys of living with RA!!!!

Deb x

mike26

hi sharon2960
didnt work for me sulfasalazine on it for 4 weeks and doctor
phoned me told me to stop taking it(droped my white blood cell count)
down to danger level.
good luck with yours and dont forget regular blood tests.
mike26..

Sharon2960

Been taking it for about 7 weeks, now take 2 tablets twice a day, so far have remembered my blood tests! Felt brilliant at beginning of week, for couple of days, but gone but downhill since! Don't have any nausea or heartburn tho, so let's keep positive!

beckie89

What sort of symptoms you having Sharon, if you don't mind me asking

& and dibdab, I've got an appointment with someone on the 3rd March, don't know if that's with a nurse or the consultant though, the letter isn't very forthcoming with information lol!

Bex x

dreamdaisy

I have found over the years that when something 'works' initially one feels the difference but then things plateau, it may still be helping but you may not feel it so keenly. It's an odd concept, usually people fall ill, go to the docs, get meds and get better. We're 'poorly', we go the docs, we get meds and don't. DD

Sharon2960

Of course I don't mind, Bex! For years I've had 'clicky' feet, and thought nothing of it, then some time ago, started having problems with painful, throbbing hands and fingers, followed quickly with same symptoms in toes and feet. Often, the wrists and knees join in! I'm lucky to gave private healthcare thru work, so saw a consultant privately, tho I've now transferred to him under the NHS. I started with prednisolone, now taking sulph, with the aim of coming off the pred. I've not had too many problems with nausea, apart from when I was going from 2 to 3 tablets a day - I just dropped back to 2 for a few days, then tried again, with no ill effects! I now have some good days, some not so good - really hoping that when the sulph gets into the system, there will be more good days. I've also reduced my hours at work, so now only do 3 days, and I'm sure that's a big help.

lynnemarie1123

Hi -

I have been on sulfa for years now - initially it was awful the building up of the tablets - feeling sick etc. I wasnt informed that i could take anti inflams and pain killers at the same time- so i suffered in silence for a long time

again I was told it would take approx 3 months for it to take effect, however it was closer to 6 by the time i noticed any difference - it has changed my life!!, I still have flares and have found i am needing my anti inflammatories and pain killers daily ( i didnt need these for a long time once the sulfa had kicked in) but hey ho x I am still here xx
so KEEP GOING!! xxx