update on my switch from mino to azythromyacin

[Fran]

Hi all!  Just figuring out the new board and wanted to update you on my switch from mino to azythromyacin.  If you recall, I was on mino for 10 months when I became increasingly sensitive to mino.  I was hardly taking any (25 mg 1 or 2 times per week) and I would get fevers, chills, increased pain all over, hardly able to function.  It would take me about 3 days to recover after each dose.  Well Dr. S has switched me to azythromyacin….250 mg 2x per week. 

Was I herxing while on Mino?  I have no idea….all I know is that it became harder and harder to tolerate each mino dose.  It was crazy since I used to take 100 mg 2x per day every day until I was down to 25 mg per day 1 or 2 times per week.  Since stopping mino, I have pretty much been symptom free from RA.  Haven't had anymore fever/chills.  Does that mean that I'm no longer killing mycoplasms?  I don't know that either.  Does this mean that azythromyacin is doing nothing for the RA?  Don't know that either. 

I'm just hoping that azythromyacin is doing something here.  Has anyone else not herxed from zithro and still had a positive outcome?

 

[Lynne G.SD]

Hi Fran,That seems like a high dose of Zith to me since the stuff stays in the body for 14 days.I take250mg once every second week and it gives me a herx at times that could bring down an elephant.Other times it is very mild.Still can't figure it out.  Lynne

[DianeWI]

Hi Fran,

Well you just answered my questions too.  Since I have also seen Dr. S. in the past and like you, I'm not tolerating Minocin anymore, I'm going to do the same thing with the Azithromyacin.  I”m going to hop on to 2 x a week like Dr. S. suggested for you.  I have been on AP since 1992 and maybe something  happens after a time where our bodies don't want it anymore. 

Do you have any other information that Dr. S. told you about regarding this?  If so, please advise!

Thanks,

Diane

[Fran]

Diane-  Dr. S told me that rarely he comes across people who develop a sensitivity to mino.  We tried for months to keep me on the mino.  We tried dropping my dose lower and lower but I still would react.  He then decided it was time for a switch.  He said azithromyacin was a newer drug and that is why it wasn't used as often as mino.  He said it stays in your system longer and people seem to be able to tolerate it pretty good.  He really didn't have any other info to offer other than that.  I think he doesn't always know why something works but through his years of experience just knows what to try and what combos to try.  I'm going with this for now and trusting his experience.   I just wish I understood this disease process more and the herxing vs. sensitivity.

 

What sort of sensitivity did you develop?  What has been his suggestion for you?  I tolerated clindy IVs well.  Have you done that?

 

 

[Fran]

Lynne-  I have talked to some people who do azythromyacin 250 every day and some every other day and some 2x per week and others like you 250 every other week.  I'm not sure about the dose.  I'm hoping that after a couple months, I can drop down to 1 per week.  When he initially dosed me, he told me that I was starting out on a low dose.

[Michele]

Hi Fran,

As you know, I'm hyper-sensitive to mino, too. It's intriguing that we have the same doctor and he switched you off mino, but moved me down to 2 mg with the plan to keep increasing it. I guess I wonder why he didn't have you try a really super low dose like he is me. Probably because you tolerated it for a while?

I'm glad you logged back onto the board. It is good to hear from people that can say they are not experiencing pain.

I just met the third person I work with today that also has RA. He's not being treated. Just putting up with the pain and letting his fingers swell and drift. He's seen his relatives have lots of problems with the Rheumy meds and just would rather put up with the arthritis. It amazes me. The pain is so horrible for me. He was so anti-doctors or treatment he didn't even want information about RBF or alternative treatments.

Hope Iowa gets to have spring soon. Enough snow already for “you guys!” (They say ya'll where I live now…so I love being able to say you guys!) 😉

Take care,
Michele

[Fran]

Michele-  HI!  Yes he switched me but he did try lowering the dose first. I mean initially I was on 100 mg 2x per day and then 100 mg every day and then 100 mg MWF and then 100 mg MF and then 50 mg MWF then 50 mg MF to finally 25 mg whenever I could tolerate it.  So I think the difference is that initally I tolerated it and then finally I couldn't do it anymore and he saw that it wasn't getting any better.  This dosage “messing around” started in August after the IV clindy.  That was when I just slowly started not being able to do it anymore.  So from August until February (6 long months) we messed with the mino.  Maybe the IV clindy made me more sensitive.  Maybe I was sensitive before but I was such a mess physically that I didn't know what was going on prior to the IV clindy.  Who knows!

Have you talked with Dr. S lately?  Can't remember if he's back from Florida yet.  Just wondering whether he would be up for considering another antibiotic with you.  He was hesitant to move me off and wanted to try lowering it with the hopes of slowly moving the dose up too, so I don' think that is unusal with him.  He must have some success with that because he tried it with both of us and seemed to think it could potentially work.  Who knows.

Yes, I'm so glad to be moving closer to spring!  Every other day it snows here!  Take care- Fran

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