Kickas.org Forums Treatments, Drugs and Alternatives AS Pharmacy Sulfasalazine is working but making me miserable

I started on a very low dose because UC experience taught me that it makes my migraines ( i get 15 a month normally) just terrible. So over the past few months I would build my dose in1/2 tablet increments which would trigger a daily increase but then go back to normal after about a month. I got up to 2 1/2 tablets a day fine but then rushed because I had a drs visit in NYC (2hrs away) and didn't want to annoy my dr who was impatient with me going so slowly. well that was a mistake. I have been suffering with unbearable migraines for 1 and a half months now and mouth sores just started popping up one after the other:(. So this weekend I pulled the dose back to 2 tablets a day (i told the drs) and some of the AS pain is back although my headaches are back to normal levels. my Rheumatologist put me on folic acid which I started today but I have no idea how long it would take for my body to be ok again. I'm just so sad. I was so happy the pills were working. The dr wanted me to up the dose to therapeutic levels so now I'm a darn mess and I don't know what to expect. Sigh, this stinks

Ok, thanks for letting me vent a little

Welcome to kickas.
Sorry you are having it rough, I remember trying sulfasalizine and I thought it helped a tiny bit , but I did not like the headaches, that came as a side effect.Have you tried eating just green veggies and some chicken for a couple days to see if diet helps your migranes and pain? Eating raw greens and some tuna or chicken helps my pain on bad days, but that's just me.

Hope you get to feeling better. Take care.

i am a newby...my first post here !

i am experiences horrible headaches and I am currently on Sulfasalizine...! I attributed it to sinus, allergies and infection!

I started sulfa two mos ago and am still waiting for any relief from my AS....none to be found, but a week and a half ago a headache started and has not gone away! I have gone thru a Z pak, and now I am augmentum (875 x 2 a day)

Where your headaches mimicking of a sinus headache..?..and now just today I started with a dry little tickle cough.....

never ending

Hi valsmum,I haven't tried the diet but the dr said the folic acid issue is what was causing the mouth sores, I may try diet in the future but since it's just a vitamin I'm ok with tablets. I just wish I knew when they might help. Dr said it could help with the migraines but I don't know.

Debi63, I have always had headaches and this stuff has been making them worse as long back as I can remember. I have been on it countless times for ulcerative colitis so I knew what I was getting myself into as soon as they mentioned it to me. Sigh, on the one hand it's magical in the sense it worked immediately for me, on the other it makes 2 other things awfu:(
It may totally be what is giving you headaches. I found that slowly introducing it to my body makes it a million times more tolerable. I got myself into this pickle because I ignored myself in favor of pleasing my dr. I know he has my well being in mind it's just that specialists seem to focus do much on their one thing that they forget there is a whole person attached lol.

What I did was talk to both the gp and rheumatologist and Iwe agreed i need to go back to my old gameplan. I cut the dose in 1/2 and the daily 24/7 migraines stopped immediately so yau but the joint pain flared a bit so i have migraine meds to help tolerate the pain as my body gets used to it slowly. It usually takes a month at each new dose to get used to it. For the first 2 weeks of every increase I suffer but then I get used to it and go back to normal for 2-4 weeks then up it again and so on. I am staying put for a month because I really want this medicine to work for me.

@ LUVINLIFE

Thanks for feedback! I spoke with my Miracle Rheumy ( she is the only one who got to the bottom of my pain) this morning , and she said yes they most likely are causing my severe headache that has lasted now for over a week!

She had advised me to cut the dose in half and now only take it once a day....

So, starting today, I will only take it at bed time....

hopefully my head will be pain free this weekend!

Thank you, Thank you!

you are welcome I hope your headaches improve quickly. Mine did but everyone is different so if it takes time try to give your body a chance. You are lucky your dr listened right away. For years my gastro kept insisting the medicine couldn't possibly bother my headaches because of where it breaks down, same with the Lialda. Good for you

I have been on the folic acid and along with the reduced dose the sores totally stopped in addition to the headaches. also, the minor uptick in pain i felt when I first cut the dose seems to have settled back down. I will give myself a few weeks before I start to increase the dose again. I am taking 1 in the am and 1 at dinner so If I do get a headache I have time to get it under control before bedtime. When I increase it again I will probably start with another 1/2 in the am, then in a month add it in the pm and keep it going until I am where my dr wants me to be. Of course, this is with both my drs knowledge and approval. We' re all on the same team

I wanted to come back and say things seems to be ok so other people who read this don't get scared off trying it if their dr says its a good idea.

Came back to say that last weekend the joint pain became agonizing seemingly out of the blue. everything hurt, my hips, my shoulders, my kness and my Achilles tendons. So bad that I wasn't moving if i could help it and limped when I did have to get up to use the bathroom.

This was ahead of the full month at 2 tabs a day the drs and I had agreed upon but I couldn't stop crying so I called and they ok'd me picking up the dose again.

so now I am at 1 & 1/2 tablet and 1 mg folic acid in the morning with my coffee plus 1 tablet at dinner.

It's been a week and I am still in agony with my right Achilles tendon, nothing helps that but everything else is cooling down so its an improvement. The folic acid seems to be keeping the mouth sores away so that's a plus too.

I am babying my foot, keeping it on a soft pillow so I don't cry.

Oh, and it is increasing my migraines a bit but they aren't unbearable, and my Fioricet is helping so fingers crossed that slow and stead will win the race.

I'll keep reporting back as I move along for the people behind me, nothing worse than flying blind with so much pain so if I can give a peek around the curve ahead I will do my best to do so.

Im going back on Sulfasalazine today. I was off it for the last year because I was trying for a baby. My wife had the baby there 3 weeks ago and my inflamation has arrived back too, so I think its time to go back on the Sulfasalazine.
I remember that I got pains and swelling in my mouth for the first few months then that died down. Also I used to eat a lowish /medium starch diet to maximize the effect of the Sulfasalazine. (I used to eat a hugely starchy diet before)
Im going back on the sulfsalazine on a full dose from the start, so I will see if i get any side effects!

Hi Luvinlife,

Welcome to the board. Sulphasalazine can be tolerated by some people and not others. Some are taking it's cousin Azulphadine that is coated I think. You have to be on folic acid to be on this because it will deplete your levels of folic acid. Alone this drug put me in remission when I was 32 after having it for only 4 years after being dx'd with U.C. as well. I was able to finish raising my kids and now that I am in my 50's it came back about just a few years back.

I am worried now that you are having what sounds like enthesitis in the foot with your achilles tendon problem. It will hurt like nothing else. Check into enthesitis with this disease. Might be time for a TNF blocker. I am on Remicade infusions and it helps with all the peripheral problems of A.S. like enthesitis and Uveitis of the eyes. Sorry you are suffering. Have you tried the diet? On pain med's? Routing for ya'! Keep us updated.

I came back to say that my migraines came back as expected. since the end of August that has been been making me miserable but they stopped being 24/7 yesterday and I am hoping I am finally getting used to this dose so I can bump it up in another month.. All the pain in my body stopped so the Sulfalazine is working, well all of it except my right Achilles tendon but even that has improved. It still hurts pretty bad and has been doing so steadily for a few years now BUT I am not getting the searing pain that feels like someone is putting a cigar out in my foot all the time so that's a plus. well it's a cross between that and a hot nail but it's abrupt, seems to come out of nowhere and takes my breath away so any relief from that is welcome.I sort of miss the more significant improvement from the full dose but am hoping to get there again soon.

Pea, I didn't have a name for that pain. well, I'm sure my dr used it but when I go I tend to get overwhelmed and a bit upset so I probably don't listen as well as I should. I think my drs are waiting for me to be up on the full dose before they make any determinations about moving me onto stronger medicines. In my case i think they are hoping this medicine will prevent any UC issues, I was diagnosed with UC in my early 20's and am now enjoying a remission from that. For me wi my foot the loss of mobility is worse than the pain. I can point my foot but can't flex it and sometimes that's an issue. They didn't see any deposits in the last X-ray but I think it's only a matter of time for me. I havent tried anything with my diet but it can't hurt to look into it. Thanks for rooting for me, I'm going to bomarang those good wishes right back at you

JohnIreland, how are you doing on the full dose? I hope it is helping you without side effects. also, congratulations on the new baby! How are things with that, Are you getting on ok with the physical demands of parenthood?