@EJ Kirksey wrote:

I’ve been on minocycline for 2 1/2 years now for PM/DM. CPK down from the 3,000’s to 1,361. My Anti-Jo-1 is up to 0.2 in the low normal range. That seems good. I’m happy on my treatments with AP but my new Rheumy wants me to go on plaquenil and get off the antibiotics. He says that plaquenil is the choice since I’m diabetic. Should I consider this? He wants my CPK down. I’m currently taking minocycline of 100 mg once a day and am thinking that maybe I should start taking it two times daily. I really want my CPK down also. I also had a series of tests for lupus (What does this mean again???….. Antinuclear Antibioties, IFA-Positive and FANA Staining Patterns-Speckled??? Chromatin (288) High. He is puzzled by this result so in comes the plaquenil. My liver enzymes are also elevated but I’m also taking Metformin 2,000 daily for 3 years now for Diabetes 2 and also have gallstones which are not giving me much problems as of yet. I’m thinking that my gallbladder could be working against my liver. I would love to hear just comments especially from ones that are, if you can take AP with plaquenil. I just don’t want to mess up the good works of the AP that I’ve been on. My former AP Dr. was not a Rheumy but does support AP since she is also on it for RA. I like the RA Dr. in the way all of the proper tests are being done but not happy that he doesn’t believe in AP. Wish I could have the best of two made into just 1 doctor….. Appreciate any comments.

Hi EJ,

Welcome to the RBF discussion forum! 🙂 Very glad you found us, but sorry you had to, if you get my meaning.

Plaquenil makes a very nice complement to minocycline. However, before starting it, be sure to check drugs.com for side-effects and other drug-interactions with anything else you may be taking. I’ve used plaquenil twice and both times had to stop it after five months…first time for optical migraines and second time for really severe gastrointestinal gas. 😳

A speckled pattern on ANA testing is defined as follows:

http://labtestsonline.org/understanding/analytes/ana/tab/test

“Speckled – associated with SLE, Sjogren syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease”

While chromatin levels can be increased in SLE (systemic lupus erythematosis), they can also be indicative of drug-induced lupus erythematosis (DILE) and minocycline can be a cause of this. One way to rule this out is to ask your doctor to run a Single-stranded anti-DNA test (fake lupus marker for DILE) as well as an anti-histone AB test. If both are positive, then it is likely a DILE reaction to minocycline. Real lupus is differentiated by a positive double-stranded anti-DNA test. It’s quite important to know if this is going on, because a simple switch to doxycycline could resolve these issues for you.

http://www.aruplab.com/Testing-Information/resources/TechnicalBulletins/Chromatin%20ELISA.pdf

DILE is pretty rare, but it can occur and is very different from real lupus, because when the offending drug is stopped, the DILE goes away. I was one of those rare cases, which you can read about in my progress thread, if you click the link in my signature line.

Gall bladders can be a foci of infection in rheumatic disease, just as teeth, bladder, stomach, gut, etc., can also be triggers. I was having GB issues long before I started abx therapy, but have managed to keep my GB by doing regular liver and GB flushing, as well as paying heed to parasite cleansing and a diet consisting of good fats.

Type 2 diabetes is, fortunately, something that can be controlled with diet and exercise…the diet part being the easy part, but the exercise part being really hard when in a lot of pain. There are some naturopathic things that can help diabetes. Have you tried any of them? A dear friend of mine has been controlled his with high doses of garlic, though cinnamon is also said to be helpful for stabilizing blood sugar levels. There may be other helpful adjuncts that you can find or another forum member may be able to suggest for your further researches, but these are just two that come to mind.

I hope something above may help you in your own researches, EJ. Again, welcome to the RBF discussion forum!

PS If you’re looking for a very experienced AP Physician who is also a rheumy and you can travel for a thorough work-up, there is always Dr. F. in CA.

Hi EJ,
I too am on Plaquenil and Mino for my RA. I take 200mg bid of the Plaquenil. I tried weaning off by dropping down to 200mg daily, however, after 10 days or so noticed increased swelling so………back up to 200mg bid. At the very least I now know that the Plaquenil is benefiting me so I don’t mind taking it as much. 😐

All the best to you!

Diana

Hi,
@EJ Kirksey wrote:

If one was to keep up the AP Therapy with Plaquenil added, should one keep the same dosage of once a day of 100 mg of Minocycline or twice a day of 100 mg of Minocycline?

As far as I know, there is no need to adjust the dose of minocycline if one is going to add Plaquenil, and I have never heard of anyone doing so.

Another thing… You may want to talk to your doctor about IVIg as something else you can use to lower your CPK (maybe even instead of Plaquenil). It is very expensive, though, so whether that’s a viable option may depend on whether you have good health insurance.

Phil

@EJ Kirksey wrote:

Thanks for the very informative info. Dr. wants me to get off of minocycline and on to plaquenil and in six weeks retest to see if it’s the minocycline causing my liver enzymes to be slightly elevated. Would it be wise to consider doing this? I’ve just been reading about minocyline triggering autoimmune hepatitis and am wondering if I’m in the beginning stages of this. I’m not feeling bad, just stiff in the mornings and still have a little muscle weakness from PM. Just confused on what to do.

Hi EJ,

Did your rheumy run a test for anti-SMA (smooth muscle antibodies)? Elevated liver enzymes can sometimes happen with GB disease, but a positive anti-SMA in addition to a positive ANA would be reason to consider drug-induced hepatitis along with the elevated LFTs. There are also some clinical signs and symptoms for AIH (autoimmune or drug-induced hepatitis), including nausea, dark urine, clay-colored stools, skin itching, loss of appetite, general malaise… You can look these up be running a google search.

I have read some studies on drug-induced hepatitis from minocycline (here’s one: http://ajcp.ascpjournals.org/content/114/4/591.full.pdf) and its unclear to physician-researchers if the mino is unmasking a relapsing/remitting AIH or whether its strictly a drug-induced condition. Nevertheless, if it is diagnosed, it’s probably best not to be on minocycline and a washout period as your doc has suggested may not be a bad idea. If this doesn’t seem to be the problem, then the abx could be switched out to a different one as a re-trial, but it would be best to be working with an experienced AP doc, such as Dr. F. (AP rheumy) in CA. With the labs you’ve had run and the mix of symptoms, it sounds like a “mixed connective tissue” presentation, but I am just a fellow patient and would suggest you ask your rheumy if this might be the case. It can be very challenging for MCTD patients, as there can be so much overlap in symptoms, which can lead to a lot of confusion over diagnosis as it seems to “contain” a lot of elements of several different rheumatic diseases. I’ve heard it being called a “garbage diagnosis” for this reason and, interestingly, a lot of Lyme patients get given this diagnosis, as Lyme can look like and mimic so many different things all at once, as well as take down the immune system and leave these patients scratching their heads when their bodies have trouble producing enough antibody to test.

If travel is an option and you’re keen to pursue infectious causes and abx therapy for your rheumatic disease, it might not be a bad idea to get a thorough work-up from a really experienced AP rheumy, like Dr. F., as it can be tricky working with a doctor who isn’t supportive of this treatment choice and would be unwilling to look at other abx options other than mino, if indeed it is causing you some liver issues. It’s just a possibility to consider, but if you’d like this doc’s contact info, I’d be happy to send it to you.

Hi EJ,

My husband had DM which has now been basically in remission for a couple of years now. We credit his recovery to treating for Lyme and Babesiosis with heavy hitting antibiotics and IVIg. IVIg is definitely within the arsenal of drugs that traditional rheumatologists prescribe. Not all rheumies do prescribe it though. Most rheumatologists want to prescribe it with methotrexate or Cytoxan. The best way to avoid those drugs is to express concerns regarding their use with perhaps with your diabetes or some other reason you can think of. My husband had pulmonary fibrosis so we used the excuse that methotrexate was known to increase the infections in the lungs.

Something else you should look into is LDN (low dose naltrexone). Eva Holloway another APer on this site has done very well with LDN and AP. I believe she also sees the doctor in Lufkin, Texas. Dr. F while a wonderful resource for scleroderma patients was a total miss for my husband and very expensive. Instead I would start with the doctor in Lufkin, Texas and possibly look into finding an LLMD.

My husband did take plaquenil at for about a year and a half. We noticed no major improvements on it. His LLMD though like using it in combination with some other antibiotics as it has a mild effect on Babesia.