trouble w/minocin…thinking of adding plaquenil

[mary77]

Hello…
I have been taking antibiotics (Lyme/multiple infections) for quite awhile. Minocin has been very useful in keeping arthritic symptoms under control. During the past year, I developed red, painful “lesions” on my lower legs. I hesitate to use the term lesions, as they never “surfaced”. After time, these red areas turned to a purplish color looking like bruising. Twice I have stopped taking minocin, as I suspected it as causing this problem. Each time, withing weeks of stopping the minocin, the troubled areas would clear up. Minocin has a listed side effect sounding similar to this. Has anyone on this board had this happen? Wondering if it is just me!!

Since switching to doxycycline, the areas remain clear but I am having more difficulty with arthritis. Am thinking it could be a Herx, as testing is showing Cpn to be the main infection in my system right now. My LLMD tells me that Cpn is more susceptible to doxy…

With more arthritic pain, I am considering adding plaquenil. I am very sensitive to meds and often have side effects. Am wondering how others on this forum tolerate plaquenil and if it helps them. Any info would be appreciated as I try to make a good decision regarding the use of plaquenil.

Thanks for any help or suggestions!

Mary

[BG]

I have been taking Plaquenil for two years now without any negative side effects. I started taking it before I knew about AP as it is the first DMARD prescribed for autoimmune connective tissue disease. It helped me a great deal within the first six months then my symptoms plateaued. Doxy picked up where Plaquenil left off with regard to improvement in symptoms but then the doxy effects plateaued as well.

Hope this helps.

Barb

[mary77]

Thanks for responding, Barb. I appreciate info regarding anyone’s experience. It is encouraging to hear you have no side effects from plaquenil.

Mary

[bonnielou]

Hi Mary. I have been on minocycline and plaquenil for over 3 1/2 years now. It was kind of a ‘deal’ I struck with my rhuematologist — she would agree to prescribe the minocycline (something she wasn’t keen on) if I would also agree to start the plaquenil (which she thought might really help me). I did have some stomach side effects — but since I started everything at pretty much the same time (including celebrex) it was hard to tell what was the true culprit — and all three medicines are hard on your stomach.

Eventually that subsided as I got used to the medicines — and my plaquenil dose was also cut way back over time. I started at 2 200mg pills/day; this was cut back very slowly and now I am on just 1 200mg pill/week! The combination is working for me, and it is a pretty benign medication, relative to many other choices. I feel great — you would never know I have RA now.

My husband is an ophthalmologist and he sees a lot of RA patients, and patients on plaquenil. There can be eye complications, but it is pretty rare. He has never seen anyone in his 20+ years of practice with complications. But he still keeps a close watch on me. Be sure to keep up your eye appointments if you start taking the plaquenil.

Good luck …
Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[mary77]

Bonnie,
Thanks for your help! I am worried about the eye complications, but it sounds as if it might be rare. I usually need small doses of meds…maybe the plaquenil would help with a small dose. Many years ago I took plaquenil though I can’t remember the dose. I did have a lot of stomach/gut issues so stopped it quickly. Think I’ll give it a try with a low dose to begin with…you only take it once a week! Amazing!

Thanks again…glad to hear you are doing so well.

Mary

[Maz]

@mary77 wrote:

I have been taking antibiotics (Lyme/multiple infections) for quite awhile. Minocin has been very useful in keeping arthritic symptoms under control. During the past year, I developed red, painful “lesions” on my lower legs. I hesitate to use the term lesions, as they never “surfaced”. After time, these red areas turned to a purplish color looking like bruising.

Since switching to doxycycline, the areas remain clear but I am having more difficulty with arthritis. Am thinking it could be a Herx, as testing is showing Cpn to be the main infection in my system right now. My LLMD tells me that Cpn is more susceptible to doxy…

With more arthritic pain, I am considering adding plaquenil.

Hi Mary,

Very sorry to hear about the painful, red lesions on your legs. I haven’t heard of this as a side-effect on mino since volunteering for RBF, though I have heard of people breaking out in hives and developing allergic rashes or getting hyperpigmentation (this latter one isn’t painful, though). There are some pretty peculiar rashes that can come out when one has Lyme and these can come in rounds, too. I have sometimes had itchy, mosquito-like bumps, like hives, and circular mini bulls-eyes.

Here are some pics of the kinds of rashes people sometimes get with Lyme and coinfections. Actually, the scleroderma folk might find the ACA “rashes” kind of interesting, as some of these very definitely look like the darkened, leathery skin patches of SD.

https://sites.google.com/site/marylandlyme/photos/rashes

Question is, is it the mino or is it rounds of Lyme rashes? Usually, with an allergic reaction to a tetracycline, esoinophils will be elevated by about 30%. Did you notice any fluctuations in these with your regular CBC labs? Trouble is, if one is allergic to one tetracycline, then they’re usually allergic to all – doesn’t sound like an allergy in your case, though, as you’re tolerating doxy okay. Of course, this could also be something you’re experiencing that is also a unique drug reaction to mino – anything is possible. 😉

Mino is such a great abx for rheumatic disease and I was really down when I could no longer take it, as I developed drug-induced lupus and was having drug hypersensitivity issues….it’s just the way my body metabolized the drug. I know many folk do very well on doxy, but I didn’t do as well on the same low dose as mino. So, for me, the higher dose tetra and biaxin combo with plaquenil has worked very well and got me back on track.

With chronic Lyme, it’s really important to be on a combination oral therapy, anyway, because it is just such a pleomorphic organism, shape-shifting from cell-walled form to cell-wall-less L-forms and cystic forms. Each one of these needs to be targeted simultaneously, as well as doing what one can to hit the bio-films. Monotherapy just isn’t enough. 🙁 Plaquenil is used often by LLMDs, though, as it not only has some effect on babesiosis, the protozoan coinfection of Lyme, but also thought to have some effect on cystic forms of borreliosis (there is, however, conflicting research out there about this).

http://www.ncbi.nlm.nih.gov/pubmed/12102233

If CPn is a concern, the protocols would be fairly similar to the Wheldon Protocol, using a tetra, a macrolide and a cyst-buster (like flagyl or tinidazole), so you could be hitting a few birds with a few stones at once with this.

http://cpnhelp.org/treatment_protocols

I know some folk don’t tolerate plaquenil very well, but this second time around I’ve found it to be okay for me. First time I used it, it worked just fine for about 4.5 months, until I started getting ocular migraines (blind spots with zig-zagging arc-like lights flashing in both eyes for about 15 mins). I got nervous, so stopped the plaquenil cold turkey and fortunately didn’t have any rebound effects. The ocular migraines resolved. I never thought I’d try it again, but my doc encouraged me to give it a chance again and I’ve been on it since Feb (now 4 months) with no issues, apart from the early gastro effects Bonnie mentioned above, which resolved after the second month of use. It has some very nice anti-inflammatory props in addition to the anti-microbial ones, so if it can be tolerated, it’s worth moving through the early gastro issues (for me, namely gas), as it takes a few months to kick in fully anyway. Because of its anti-microbial effects, it’s also worth noting that some herxing can occur, too. 😉

Hope these experiences, added to the others above help a bit, as well, Mary. Have you also thought of pulsing in a macrolide to boost your doxy?

[mary77]

Maz,
I should let you know that I am currently taking zithromax (250) 1/week. Also, clindamycin (150) 3/week along with the doxy.
My LLMD and I have discussed the skin lesions. Lyme can be so confusing…though I must say the pictures of the EM rashes on the lower legs closely resembles the lesions I develop. Minocin has been shown to cause erythema nodosum. Here is a link to this problem:

http://dermatology.cdlib.org/DOJvol8num1/reviews/enodosum/requena.html

I think several of the pictures resemble the EM of Lyme!

It is encouraging to me to hear that you handle the plaquenil well. I have often thought it might affect the various forms of Lyme bacteria, especially since it is an anti-malarial. Many years ago (before Lyme diagnosis) I took a very low dose of methotrexate which caused the arthritis to worsen horribly. I was also given enbrel but due to feeling terrible on it, I stopped it quickly. So I will not go that route again. I am certain those drugs allowed the Lyme to flare.

So…I continue to hope I figure this out!! I may try to up the dosing of my current antibiotics, but do so slowly. I may give the plaquenil a try…thanks again for your help.

Mary

[Maz]

@mary77 wrote:

Maz,
I should let you know that I am currently taking zithromax (250) 1/week. Also, clindamycin (150) 3/week along with the doxy.
My LLMD and I have discussed the skin lesions. Lyme can be so confusing…though I must say the pictures of the EM rashes on the lower legs closely resembles the lesions I develop. Minocin has been shown to cause erythema nodosum. Here is a link to this problem:

http://dermatology.cdlib.org/DOJvol8num1/reviews/enodosum/requena.html

I think several of the pictures resemble the EM of Lyme!

It is encouraging to me to hear that you handle the plaquenil well. I have often thought it might affect the various forms of Lyme bacteria, especially since it is an anti-malarial. Many years ago (before Lyme diagnosis) I took a very low dose of methotrexate which caused the arthritis to worsen horribly. I was also given enbrel but due to feeling terrible on it, I stopped it quickly. So I will not go that route again. I am certain those drugs allowed the Lyme to flare.

So…I continue to hope I figure this out!! I may try to up the dosing of my current antibiotics, but do so slowly. I may give the plaquenil a try…thanks again for your help.

Mary

Hi Mary,

Yes, very definitely the TNF blockers would re-activate Lyme. Check out these studies on the Columbia Lyme website, particularly the commentary near the end:

http://columbia-lyme.org/research/keyarticles.html

Also, the following case study on Remicade revealing underlying borreliosis:

https://www.roadback.org/emailblasts/ebulletin_spring10.html#Remicade

Remicade May Reveal Underlying Borreliosis by Mimicking Lupus

Reports of adverse events that,

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