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[Updated] anyone have experience with sulfasalazine for joint pain?

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Posted 4/18/2019 3:18 PM (GMT 0)
My joint pain has gotten worse in the past several months, and -- because I was nervous about the possibility of permanent joint damage in my hands or feet -- I saw my rheumatologist. She is aware that I'm being treated for Lyme and bartonella. She does not agree with the continued antibiotic treatment (because she believes that antibiotics would have long ago eliminated Lyme), but she is very kind about it.

Anyway, I told her that I am very reluctant to take any immunosuppressive medication, but told her that I'm concerned about the worsening pain in my joints. (It is mostly in my fingers, which are slightly swollen and have formed some bone spurs. But I also have some pain in my feet, elbows, ankles, and left knee.) She suggested sulfasalazine. She said that is very mild, not an immunosuppressant, and can be very helpful for some people.

I've left a message with my LLMD practice (I see Dr. SP's nurse practitioner in Wilton) asking whether she thinks I should start the sulfasalazine. But I was wondering if anyone here had any experience with it. I did a search here but didn't find a lot. Thank you, as always, for any information!

Post Edited (LilyPanda) : 4/18/2019 1:34:24 PM (GMT-6)

Posted 4/18/2019 7:33 PM (GMT 0)
Updating ... I just spoke to the LLMD, and he says that (contrary to what my rheumatologist said) sulfasalazine is a known immunosuppressant. He said he would not recommend it. I feel like I'm back at square one.

He said the logical next step for me is probably Rifampin. He said that, given that I've had a positive bartonella test and that I'm having joint issues, it's strange that we haven't done anything specifically bartonella-centric. (I'm treated by his nurse practitioner, and their approach has been to try protocols with better side-effect and safety profiles first whenever possible. So she wanted to try other antibiotics that can sometimes work on bartonella, instead of jumping straight to Rifampin.)

I've heard such horror stories about how people feel when they're on Rifampin that I'm a little nervous. The LLMD even mentioned his own first experience with Rifampin, when he was ill, as being pretty terrible. I hear stories of people having such bad herxes (or such bad side effects) that they're bedridden, or have to go out on disability, etc. So I'm honestly a little scared of trying it.
Posted 4/18/2019 9:06 PM (GMT 0)
Yes, from what I've read - it's an immunosuppressant and is contraindicating when we have an active lyme and co's infection.

Sorry you're suffering with the joint pain...does movement make it worse or better?
Posted 4/18/2019 11:19 PM (GMT 0)
Girlie, it’s kind of hard to say. Based on the imaging I’ve had done on my hands, it seems there’s both inflammatory (autoimmune) arthritis and also some osteoarthritis (apparently caused by the inflammation). When movement makes the joint pain worse, I sort of assume that’s from the osteoarthritis. And when it hurts without movement, I assume it’s the inflammatory arthritis. But I have no idea if that actually makes sense.

If I remember correctly, you’ve done Rifampin and didn’t think it was so bad, right? I’m wondering how common it is for people to have bad experiences with Rifampin.

Thank you!!
Posted 4/19/2019 12:22 AM (GMT 0)
LilyPanda,

Do you take Japanese knotweed or houttuynia? Both of those have done a lot for my joint stiffness, especially in the fingers.
Posted 4/19/2019 12:26 AM (GMT 0)

LilyPanda said...
Girlie, it’s kind of hard to say. Based on the imaging I’ve had done on my hands, it seems there’s both inflammatory (autoimmune) arthritis and also some osteoarthritis (apparently caused by the inflammation). When movement makes the joint pain worse, I sort of assume that’s from the osteoarthritis. And when it hurts without movement, I assume it’s the inflammatory arthritis. But I have no idea if that actually makes sense.

If I remember correctly, you’ve done Rifampin and didn’t think it was so bad, right? I’m wondering how common it is for people to have bad experiences with Rifampin.

Thank you!!

i

I was fine on Rifampin - most of the time on it I paired it with minocycline. For a couple months I paired it with Biaxin.

I “lost “ a lot of symptoms with that treatment.
Posted 4/20/2019 1:14 AM (GMT 0)
Thanks for the suggestion, Walkingbyfaith. I don’t take those, but I just dug through the herbs I bought last year when I wanted to try the Buchner, and I have both. So I will start taking them.

Girlie, I’m glad to hear the Rifampin wasn’t bad for you. Sounds like I shouldn’t assume it’s necessarily going to be terrible.
Posted 4/20/2019 1:54 AM (GMT 0)

LilyPanda said...
Thanks for the suggestion, Walkingbyfaith. I don’t take those, but I just dug through the herbs I bought last year when I wanted to try the Buchner, and I have both. So I will start taking them.

Start low and work up slowly. With herbs, consistency is the key. You may notice improvement right away, but it may take a while and improvements may come gradually.
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