Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Sulfasalazine Reaction - anyone else?

molly,

sorry to hear this. haven't tried sulfasalazine yet but these are the kinds of fears i have as i tried a sulfa antibiotic ages ago and it made me so nauseous, 2-3 days of nothing but crackers and ginger ale and the whole time afraid i'd not even be able to keep those down, but was lucky that could just switch to an antibiotic.

so frustrating that so many of the drugs that might be able to help us affect the gatro system so badly.

and yes, i had the same problem with the cox2 inhibitors (vioxx and celebrex), though milder on the stomach, for those of us susceptible, even those bother the stomach eventually.

Hi Molly- I am so sorry to hear about your bad time on ssz. I've been on it for 2 months, the first few weeks were bad( not as bad as yours!) and I have nausea and sometimes zero appetite but it has really helped with my neck and si pain. Funny thing too since it is suppose to help with other pains not spine. Oh well, as long as it does work.
Good for you for knowing it wasn't working for you and going off it- shame on the doc for not warning you. I know you set him straight on that!

I hope you are able to get to the UK asap and get that tooth fixed- sounds horrible. Hang in there!

This AS program at Bath sounds interesting- can you elaborate?

Keep pushing!
Anna

Hi Molly

Even though you have been through the ringer, I just love your humorous view of things. They really make me chuckle!

I have been on SSZ for 2 weeks now, and I certainly have a diminished appetite. For me, it could be 3 things: The SSZ, or the NSD diet I started about 1.5 months ago, or the nasty flu bug I'm just getting over now. The flu I had was a doozy. Hot/cold chills, fever, waking up in the middle of the night in a miserable sweatbath with soaked pj's and bed. Today is the first day I feel like I'm alive again in 5 days.

Getting back to the SSZ, I read numerous medical websites about "anorexia" or lack of appetite as one of the side effects of SSZ. Funny thing you said about ham and coffee in the morning which I have always craved. At the moment, the smell of both makes me want to purge. Really, no cooking aromas appetize me, and I eat very little anymore.

Caused by the flu or SSZ? I don't know, but let me get stabilized from this bug in another week, and I'll see what happens.

As far as my other ailments from AS, my back, neck, SIJ, and hips have been much improved, and I do not have the constant irritating pain I used to have. NSD and/or SSZ regimine seems to help in that regard.

John

Heigh guys - Thanks for all your input and ***support. HUGELY appreciated.

Well. Had such a hell of a day, but TG for GPS - or I'd have been lost in finding this ere clinic in the backs of beyond of a huge town in Brittany! Found clinic, was a tad late (long story short: trying to pay credit card by phone and dealing with clonkers; making provisional appt for dentist in UK; getting hold of dept at Bath Rheumy Hosp; checking with chums on 'best routes' to and fro UK/Brittany; then get me to pharmacy to pick up antibiotics and more Nexen pain meds. Phew. AND get to MRI appt, 'on time'? HaHa. Then scream back home, feed houndette, and get me to birthday dinner party. Ho-Hum. But did it!!

Got to hospital and no sooner there than abscess burst in mouth. Great start!! (Mega YUCK). Waited forever (seemed like it was a long time, but 25 only mins but that dinner party...yes?) MRI took AGES - machine real OLD and was it noisy. Strewth (and they forgot to turn the music on for me...wwwaaahhhhh.) Sigh. Great consultant in attendance. Amazing. Immediate results, NO waiting around. Took me into the viewing room, went thorugh the plates with me. Sec handed me typed up report, and all the plates. Arthritis in feet. NO broken bones. Huzzah.

Got home, good clear roads. Fed and watered houndette. Then got me to party, only 15 mins late. Phew.

Great party. Managed to EAT - yea! And I had a drinkie. Just a 'little' white wine. On antibiotics, yes? Oh, but it was all so nice. Party terrif. Though started to 'wriggle' in total discomfort at the end. Needed (desperately needed) a pain med. Oh well - but worth it: a 'good crack' as one would say!

Now. As to all your wonderful input.
Rumble : Yes, had headaches. That was at the very start. Only lasted the one week.
Grimm/Anna: breathing/rib expansion, nausea, gut, zero appetite. Taste buds, nil taste! And they are still not too good. As for the SSZ 'working'. Weeeeeel. Helped with all the peripheral stuff including neck pain, whilst the LDN helps with the spine inflammation. What nothing much helped with, is NOT helping with, is the rib pain. That is a b....r. One gets soooo tired of the 'constant' nagging of it. Printed off reaams of info for GP. Ha. He admitted that he did indeed 'know' of the 'possible' side effects. Bah. Anyways, gave him a wigging. (He's VERY patient with me 'smile'.) Got me my tooth appointment for this coming Thursday... Bath Hosp say it will take 2 months to get appt going as they have a back log of patients. Sigh. Two 'expensive' trips necessay. Eeeeeks. Elaborate; will make a separate post. But you can put in a search for further info here on the forum.
Sue: Vioxx I quickly gave up after the USA withdrew it. Celebrex 200mg has been my mainstay for YEARS. Just did not put two and two together, though Mig had mentioned that Celebrex 'could' lead to GERD/Reflux problems in spite of stomach protector. Guess it gradually 'crept' up on me? Now know that I **cannot take Celebrex again. Sigh. Just hope this new cox-2, Nexen will do the trick without throwing me a googly! Yep. Am pretty reactive to ALL meds including antibiotics. But that SSZ. Stuff threw the WHOLE book at me. Funny you shoudl mention sulph antibiotics - have a 'vague' recollection of throwing a wobbly to sulph stuff when I was a kiddo. A 'slight' memory of 'summat' that did not sit happily with me. Oh well!! (NOT going there again, am I? ^LOL^).
Joyce/Possi : You as well? We are alike then. I can't do the standard NSAIDs at all. A few weeks on those and I was in a total mess. Even missed a connecting flight once in the USA as I was ensconsed in the rest room for 9 hours! Vomiting my guts out and ALL the rest...YiYiYi. Now SSZ joins the list - though slightly different in presentation...Yeeeeees!! Hope they can find summat for your Lupus. Check out that stuff I posted somne weeks ago Joyce. Perhaps there may be possibilities there?
Hi Jay: Yep. Still on the LDN. LDN controls the inflammation in my back. Helps and NO side effects! Yea.
Thanks Ronel : Glad SSZ is working for you - I was on 4 x 500mg per diem. Yes. The SSZ worked, just the side effects. Hopeless. My taste buds still askew, but that don't matter much. Still find green tea, lemon and honey the 'most inviting' drink I can think of. 'Smile'. Though did enjoy my black coffee this evening - more so than the glass of wine I had. Odd.
Craig: Can't really answer our question re taste buds. Think we are all soooo different. As for loss of appetite. Well, I could have eaten 'half' what I did eat, but mine hostess had gone to a heap of trouble and so I did the table justice. Eschewed the potatoes. Would say 'sort of LSD', at a A(cheatinga) pinch, that is. ^Smile^.

Thanks to you ALL - and HOPE I aint left anyone out...eyes going on me and tis v. late... You have ALL helped enormously during this wretched **horrible time. Bless

Molly C (France)
Keeping on Keeping on (you bettcha!)

It made me wretch/dry heave... yuck


me no likey!

Hi Molly

Sorry to hear you had an adverse reaction. My rhumey told me most of his patients on sulfa-medications tolerate it well.



I had a very bad reaction to sulfasazalene. I only was able to ramp up to 2 weeks before the blade dropped. My minor symptoms were only made worse. I ended up coming home from work and going to bed. I felt like I had the flu. I couldn't eat because I could hardly open my mouth. I was a terrible sight. I called my doctor after 2 or 3 days of feeling like I was hit in the head with a wooden mallet. Doc said to get off of it right away. The severe symptoms went away right away. Just vanished.

It took awhile to feel like my old crappy self again.

I hope you are feeling better.

Catching up again.

John: Reckon it is the SSZ causing the appetite loss and the 'feeling' of pleeeeeese, don't even 'mention' food to me? Anorexia type syndrome. Yep. That's SSZ reaction. I did eat a little today. But NOT madly keen about it though. had a coffee as well as, hmmmmm. Could just as well have left it. Green tea, honey and lemon STILL my fave choice, with sliced ginget root for good measure. Very refreshing. Otherwise, food is a bit of a turn-off. OK with me, I'd prefer to *keep the lost lbs 'lost' ^LOL^. Greast to learn that yr pain levels are under ocntrol. Mine are a tad better today. And back is good. (Just the ribs and feet. Sigh.)

Jewelz: looks like we are in total agreement on the SSZ. Yuck, heave, run... Na. Me NO likey either!

Jeffrey: Coo I did hold out longer than you then! Went about two months. But mind you those last 4/5 weeks were...ho-hum chum. Curled into a ball of...?? Do tell yr doctor that 'others' are **just as reactive as you were. Docs need ALL the education WE can give em...hahaha Yep. Feeling 'almost' back to crappy ole self and firing on all me cracked up cylinders. ^LOL^

---------------

Looked at my MRI scans, 4 plates and ALSO a CD: terrifically helpful that last. Report says: Morton's Neuromas, osteoarthritis, inflammation (Erythromelagalia, just as suspected and posted about before), deformed bones, and ancient (3 yrs old) Jone's fracture that knitted mal-aligned - as Brit hospital refused to do owt about it.

ALL there in all their glory.

Suggestion that I have PT, manipulation to realign bones, and massage. Ha. PT here in town is *useless. So nowt much that I can do. WHEN I get to UK will go get me a pr of those MBTs that y'all spk so highly of. Meantime, stay OFF feet. Poor ole houndette - who is presently tearing up the garden. Oh well.

KA Party Time: Plan to be over Dorset way in about a weeks time. Anyone Dorset way? Want to meet up?

Molly C (France)
Keeping on Keeping on (you bet chum)

Hey Molly... sorry to hear of your problems with ssz! Surprisingly, I have NO side effects from it and have been on it for 4 weeks now. Wish it took my pain away more, but a little is better than nothing.

Only gut effect I've noticed is that I am more regular now than before. Not sure if that is a symptom of things headed in the wrong direction but being backed up chronically is no fun!

I've also been religious about taking specific supplements this past month too, so it could be a cumulative effect. I found MSM works great too and it is a sulfur-based supplement. I asked my doc if they were related and she said no. SSZ is like an aspirin component from sulfur.

who knows anymore why one person responds to a med while that med can damage another. Funny thing about LDN... it made me nausious and I had no appetite! Not a good thing for me because I gain weight when I don't eat enough!

aloha molly

wish you were better...sorry to read of your plight

sulfasalazine has 'antibiotic' properties...probably held off the tooth.

about one third of all the folks who try sulfa are ALLERGIC to it...it's
well know and you should have been warned; my doctor didn't warn me either.

hope you find something sooner, better, hopefully yours