Home › Forums › General Discussion › Mixing Mino with Plaquenil?
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June 16, 2012 at 1:54 am #306753EJ KirkseyParticipant
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.
June 16, 2012 at 3:06 am #363626MazKeymaster@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! π 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. π³
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.
June 16, 2012 at 3:51 am #363627EJ KirkseyParticipantThanks 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.
June 17, 2012 at 12:54 am #363628EJ KirkseyParticipantIf 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? Would like to know if others have and how much they took. My new RA Dr. I know would be against mixing the two. He wants me to take Plaquenil twice daily π
June 17, 2012 at 5:37 pm #363629DawnParticipantEJ,
I cannot contribute much, but just to say that I am currently taking Plaquenil at one end of the day and Minocycline at the other; and in my understanding of the many posts I’ve reviewed here – it is not unheard of to continue both and wean off the Plaquenil as the benefits from the AP take hold. My signature line shows the current dosages for my situation.
Wishing you best in your planned recovery!
DawnDawnF
June 18, 2012 at 2:36 pm #363630DianaW13ParticipantHi 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. πAll the best to you!
Diana
June 19, 2012 at 12:44 am #363631bonnielouKeymasterHi EJ. I also take both plaquenil and minocycline — have been for almost 5 years now. I have cut the plaquenil down to a very low dosage (200mg, 2 or 3 days a week) — but the combination seems to work well for me. I don’t think you need to fear using both medications. 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!June 19, 2012 at 1:13 pm #363632PhilCParticipantHi,
@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
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinJune 20, 2012 at 2:39 am #363633EJ KirkseyParticipantThanks. I’m at a very difficult road with my new Dr. He wants me to get off of mino and take plaquenil twice daily. I know he’d not like for me to continue on AP although I want to! I may have to drive the long road back to Texas and see Dr. K in Lufkin. I’ve also noticed the past week that my eyes and mouth are so very dry. I’m thinking I know have Sjogrens and maybe that is why my Chromatin was very high on the one of the lupas tests. Should I go to a Rhuemy with this new problem or go straight to my eye doctor? My eye doctor about 6 months ago have me a over the counter eye drop for dry eyes, telling me it was age and maybe being a diabetic 2. I’m concerned about taking the plaquenil and now having problems with my eyes being so dry π I was so healthy till I got into my late 40’s. Now I feel the bottom is going to fall out from under me.
Polymyositis: Minocycline of 100 mg Daily
Diabetes 2: Metformin 1,000 mg Twice Daily
Osteroarthritis
What is the world will now darken my door? πJune 20, 2012 at 4:57 am #363634MazKeymaster@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.
June 22, 2012 at 2:03 am #363636EJ KirkseyParticipantI’ve been reading comments about Plaquenil on a drug info site and see a few PM patients that have made comments about taking plaquenil for PM. I’m seeing that most couldn’t tell if this drug was helping any. It did seem to help various types of lupus patients very well. Are there any PM patients on the roadback that could tell after 6 months if Plaquenil was a good choice for them? I’m searching on the internet and trying to find if Plaquenil can lower one’s CPK from PM and bring it down to normal levels.
June 22, 2012 at 3:41 pm #363635ParisaParticipantHi 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.
May 26, 2013 at 3:41 am #363637EJ KirkseyParticipantI’ve been reading about cinnamon controlling blood sugar levels in diabetics. Can one also use cinnamon while on antibiotic therapy? I’ve had one doctor, Dr. K to tell me that it could interfer with AP therapy. Is there any other diabetic 2’s on the roadback that are also doing AP Therapy?
June 4, 2013 at 2:32 am #363638EJ KirkseyParticipantWell, now I’m really confused! I’ve been reading on webmd about plaquenil possibly causing myositis in users. This is what my new RA Dr. wants me to take for PM and to go off of my antibiotics, which I refuse to do. I only take doxy once a day and am thinking I might just take it twice daily to see what happens.
PM-Last four years * Doxycycline of 100 mg once daily
Diabetic 2-Metformin 100 mg of twice daily
D-3 10,000 I.U. Daily
B-12 5,000 Daily
ProbioticsJune 4, 2013 at 3:51 am #363639MazKeymaster@EJ Kirksey wrote:
I’ve been reading about cinnamon controlling blood sugar levels in diabetics. Can one also use cinnamon while on antibiotic therapy? I’ve had one doctor, Dr. K to tell me that it could interfer with AP therapy. Is there any other diabetic 2’s on the roadback that are also doing AP Therapy?
Hi EJ,
Sorry – it looks like you didn’t get any replies to your cinnamon question above. Yes, your doc is right about cinnamon. Seems it can interfere with tetracyclines, as per drugs.com in the Interactions section as follows:
http://www.drugs.com/npp/cinnamon.html
“Cinnamon was reported to interfere with tetracycline dissolution rates in a laboratory experiment.”
Another possible side-effect with higher doses of cinnamon is that it may cause skin irritation…maybe something that DMers might want to avoid?
You might find it interesting to read about curcumin, which also has effects in blood sugar regulation. There are lots of studies out there…here’s one:
http://www.ncbi.nlm.nih.gov/pubmed/22773702
I would think, however, that if a diabetic is currently using any medications to control blood sugar that one would have to be careful of any herbal adjunct possibly interfering with these.
EJ, have you had a chance to get back to see Dr. K. lately? Just wondering if it would be a good time to go back to the drawing board on all this and figure out if a combination protocol may suit you better?
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