Author Topic: Your experience with Sulfasalazine  (Read 4197 times)

Carebear

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Your experience with Sulfasalazine
« on: June 07, 2011, 07:42:51 PM »
Hi everyone,

My rheumy sees inflammation in my joints now and has prescribed Sulfasalazine to use in conjunction with Plaquenil.  I have a lengthy family history of RA so I think this is a prudent move.  I start with 500 mg twice daily,  then increase the dosage to 1000 mg twice daily if I tolerate it.

I'll be receiving bloodwork every two weeks, then monthly, then every three months...for blood counts and liver tests.

Anyone out there with experience to share with me? 
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

donnadyer

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Re: Your experience with Sulfasalazine
« Reply #1 on: June 07, 2011, 08:04:20 PM »
I was wondering how long you have been diagnosed with SJS?  I have a family history of RA and joint pain has been my major complaint since this all started, but my RF test was negative and I was positive for Sjogren's.  I am just afraid that this SJS will end up leading to RA.  I was diagnosed with SJS about a month ago but have been having joint pain and stiffness (no swelling) since probably Nov of last year.  Thanks!

Carebear

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Re: Your experience with Sulfasalazine
« Reply #2 on: June 07, 2011, 08:18:44 PM »
Hi Donna,

My SJS diagnosis was last November, so I've been taking Plaquenil since then.  My rheumotologist physically checks me for joint inflammation during each visit, and this time he observed it in my fingers, elbows and knees.

We did discuss the cause of the inflammation...it could be SJS or it could be RA.  Either way, he said the treatment was the same. I know I've always tested negative for RF, so I think it's reasonable to assume it's Sjogren's.

Are you taking Plaquenil by chance?
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

donnadyer

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Re: Your experience with Sulfasalazine
« Reply #3 on: June 07, 2011, 08:26:59 PM »
Yes. I began taking Plaquenil in April when my rheummy assumed I had early RA (since I have a family history, had joint pain, and didnt have blood test results).  She had me taking 200 mg 2x a day.   In May, test results were back that showed SJS.  So she reduced my Plaquenil to 200mg 1x a day and mentioned trying to get me off of it in a year or two (why, I dont know).  My joint pain was better when I was taking it 2x day and I'll tell her that when I go back in Sept.  Maybe she's worried about my eyes, especially since I'm oly 37 and eye problems can develop if it's taken long term.  She seems very worried about eye problems with Plaquenil.  She's mentioned it at both visits and encouraged me to go ahead and get my eye check up (which I am doing in July).

Carebear

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Re: Your experience with Sulfasalazine
« Reply #4 on: June 07, 2011, 08:45:48 PM »
Hi Donna,

It's wise of you to ask your rheumy to increase your dosage of Plaquenil because I understand that the average daily dose is 400 mg.   Especially because you had experienced some relief at 400 mg already.  Would you be able to speak with your rheumy before September?  I ask because I hate to think of you suffering unnecessarily all summer.

As for stopping the use of Plaquenil after a year, I think if it is helping you and it has not caused damage to your retina, then it would be wise to continue.  My rheumotologist explained that this is a very rare side effect, and that with annual checks by an opthamologist, your eye health should be fine.

Plaquenil has the potential to modify or slow down the progress of this nasty autoimmune disease, and I see your youth as an advantage.  ;D

As my rheumy always explains...you have to measure the benefits versus the risks.  Good luck! ;)
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

Carebear

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Re: Your experience with Sulfasalazine
« Reply #5 on: June 08, 2011, 08:35:45 AM »
I thought I also mention that the brand name of this drug is Azulfidine.  Thanks for any feedback you can supply.  ;)
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

irish

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Re: Your experience with Sulfasalazine
« Reply #6 on: June 08, 2011, 11:55:12 AM »
Just a little input on the eyes with plaquenil. I am not on the plaquenil, but there are many on this forum who are. There has been a lot of discussion about the drug and eye issues. The one thing to remember is that the plaquenil is given at a much lower dose than when given to people for malaria ( I hope I got that right cause I just had a brain ****)

At the lower dosages the eye involvement is much, much less. THere have been many people on here who state that their eye docs have never seen anyones eyes be affected by the plaquenil. There have been a couple of people who did have to stop the drug.

The bottom line is that usually a base line eye exam is given prior to starting the drug and then every 6 months or 1 years thereafter. You just need to keep track of things. Irish ;D

HL in NY

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Re: Your experience with Sulfasalazine
« Reply #7 on: June 09, 2011, 06:00:20 PM »
Sorry Carebear,

I didn't see this before. I've been on Sulfasalazine for over a year. At one point, I got a weird muscle reading (myopathy) and my Rhemy thought Plaquenil might be causing it, so she switched me from Plaq to Salfasalazine. This drug is sometimes used to treat IBS. I've found that it's helpful for joint pain and swelling.

For what it's worth, I went back on Plaquenil (because, Man! I missed it) and now I take both. They both help in slightly different ways, and frankly, I need all the help I can get. :D

Did you have any specific questions?

Heather

Carebear

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Re: Your experience with Sulfasalazine
« Reply #8 on: June 09, 2011, 09:04:58 PM »
Thanks for the information, Heather.

I guess I was looking for the benefits received from the drug, and it sounds like you've experience some positive results.  I'm somewhat nervous about side effects I suppose, but my rheumy is a very conservative doc, and he thinks the risks are minimal.  Did you have any yourself?

Thanks again for your reply.  It looks like this is not a very common drug for those on this board. ;)
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

HL in NY

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Re: Your experience with Sulfasalazine
« Reply #9 on: June 10, 2011, 03:35:17 AM »
Actually, I didn' have any side effects on that one. I feel it's one of the more benign drugs we get to deal with. Of course, if it goes wrong, it goes really wrong- but that's why you have blood work. (I think something to do with kidneys) But there you go. Be aware that it's one of those 'not-prescripted super often' drugs, so the pharmacy may need a couple days to order it.