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I have read the boards in detail about drug induced lupus from minocycline, and I am wondering about anyone who has experienced this. About six weeks ago, I posted great success with AP (since Feb. 2010), it has been wonderful for me, my Dr. felt that I was in remission, and I agreed. I felt great, my labs were normal 3 sets in a row. My Dr and I decided to continue my current meds at the same dose for 3 more months, so nothing has changed in my meds. I even began my testimonial for Roadback. Around Christmas, I began to experience my RA symptoms again and chalked it up to the horrible winter as I live in the midatlantic and it has been constant snow. There has been a return of joint swelling, days of aching, occasional low grade fever, extreme fatigue, ( I could sleep all the time) etc. I have read the syptoms about a butterfly rash, and have noticed a slight redness on my nose and cheeks on occasion. Tonight, after coming in from the cold, two of my fingers were white an numb, but returned to pink qucikly one inside. No other syptoms to mention at this time. I am calling the Dr. tomorrow, just wondering if anyone has experienced something similar? Thanks, Joanne
@Joanne NJ wrote:
No other syptoms to mention at this time. I am calling the Dr. tomorrow, just wondering if anyone has experienced something similar? Thanks, Joanne
Hi Joanne,
So sorry to hear about your return of symptoms. Yes, I had a confirmed case (by labs and symptoms) of drug-induced lupus erythematosis (DILE for short). Is there anything you wanted to know in particular that I might be able to answer from my personal experience of it ❓
Maz, I guess I just want to know whats going on with my body, so a call/visit to my Dr. is in order to find out and I know there is a test for this. Everything has been fabulous for me and this treatment this past year 😀 , and I am disappointed with this set back, but no matter what, I will continue this avenue of treatment whatever it may be. I am a big internet user, and my symtoms make sense with DILE, but I have not experienced certain symtoms such as any chest pain, or anything to do with the heart and breathing. And I am aware that the fix for this is stopping the minocylcine. I just have the slight facial rash, EXTREME fatigue, 🙁 low grade fever, joint pain and swelling, and painful muscle aches. What got me worried was my two fingers turning white after I was out in the cold for a few minutes, then returning to pink (or normal). Did you experience any of these things or more? I also take Doxycycline on alternate days, ( I like mino days better, the doxy days can give me an upset stomach) can Doxy cause this, or just the mino? I am calling the doc tomorrow, as I want to feel better and get answers. Joanne
yah i live in eastern ontario and on cold days ive had fingers go white and numb. but it goes away when i get inside. the worst is my legs in the cold they get sore and feel like there burning if im out in temps under -10C but i think thats expected with our conditions. a hot shower usually fixes me right up if im out working in the cold. or a soak in the hottub if you have one. i had a small comeback of symtpoms after christmas as well for about 3 weeks now its dieing back off again every day now i feel better again. but anywho the cold white fingers thing is normal i would say considering we both got it 😆 no need to worry i say as stress and worry makes our deal worse. best just to remind yourself better days are gunna come 😀
@Joanne NJ wrote:
I just have the slight facial rash, EXTREME fatigue, 🙁 low grade fever, joint pain and swelling, and painful muscle aches. What got me worried was my two fingers turning white after I was out in the cold for a few minutes, then returning to pink (or normal). Did you experience any of these things or more? I also take Doxycycline on alternate days, ( I like mino days better, the doxy days can give me an upset stomach) can Doxy cause this, or just the mino? I am calling the doc tomorrow, as I want to feel better and get answers. Joanne
Hi Joanne,
My DILE came on after 16 months of mino use (low dose 100mg BID MWF) and I had just reached remission with all my labs (anti-CCP and RF, though my CRP lingered around 5 to 10). I think the jury is out on how this occurs in rare instances with some people, but one theory is that it is a drug acetylation problem. In other words, in some folk, they are unable to break down the drug in the liver and it builds up to toxic levels. This can also occur with some thyroid and heart/BP meds and I see you had your thyroid removed and on thyroid hormone replacement therapy. Interestingly, the biologic drugs can also cause DILE, so this isn’t just an abx prob…it’s just to do with a person’s unique make up and how they metabolize certain drugs.
Minocycline inhibits apoptosis, which is one of the immune-modulating props of this abx. So, if the body is unable to get rid of the drug fast enough, the toxicity increases and this increases the number of zombie-like cells running around in the body and up to no good. Once the mino is stopped, the problem resolves and symptoms abate within a week or so. Labs can take longer to revert to normal, particularly ANA if previously neg.
Sounds like you’ve already done a good deal of research, but if this helps, the labs I had run by the immunologist my LLMD sent me to were:
ANA (mine was previously neg but elevated with the DILE)
Anti SS-DNA (anti single-stranded DNA) which is the test for the ‘fake’ Lupus caused by DILE
Anti DS-DNA (anti double-stranded DNA) which is a test for real lupus and should be negative
Anti-histone ABs – this will be positive in pretty much all cases of DILE and is the lab used to confirm this drug-induced state
There will also be some inflammation due to the symptoms mimicking real lupus and, strangely, my esoinophils were suppressed and below ref ranges. So, would seem this was not an allergy in my case.
I didn’t actually get the facial rash or breathing probs and costochondritis with the DILE….just the extreme fatigue, fevers, swelling and migrating aches and pains in joints and muscles. This was what confused me at first, because the symptoms crept up slowly over a period of several months and I really questioned whether I had some type of unaddressed coinfection going on or building hypersensitivity. I also don’t recall any Raynaud’s like symptoms – white fingers/hands or toes/feet and it was during the winter months into springtime when it’s cold here in CT. The other thing is that when I stopped the mino for about a month and switched to only doxy, the symptoms resolved. However, when I re-tried the mino, I was getting serum-sickness like reactions within 6 hours of the dose…so bad, I was bedridden with all over pain, fevers and racing heart. It didn’t matter which dose I tried…I even emptied the 100mg cap into a 25mg dose…and I still got the serum-sickness reaction. So, unfortunately, no more mino for me, but I’ve continued to improve by using combination abx therapy and have been on other abx other than tetras since and have done very well…which speaks to infectious theory in a big way. In fact, after the DILE, my anti-CCP which had been normal, rose steadily for about 6 months until I was put on Moxatag (extended release amoxicillin) and diflucan. Every month, it came down on this combo by about 40 points and I probably improved the fastest on this protocol.
The good thing is that other tetras don’t seem to cause DILE and they can be boosted with other abx, like a macrolide (azithromycin or biaxin, for instance). I did find, however, that my usual dose of mino was not enough in terms of equivalency with doxy (higher dose needed for same effect). Hopefully, this can reassure you that you can find an alternative abx protocol that will be just as effective, if not better for you. Here is a link to a study done on the three main tetras (mino, doxy and tetra) and DILE and the potential for it with these various abx within the same class.
Joanne, please let us know how you get on and if you manage to get labs run to check this.
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