Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 My first doctor put me on Plaquenil, but a month later I saw Dr. T. in Boston and he told me that he preferred I didn't take it. Prolonged plaquenil use can do permanent damage to the eyesight and has bad side effects. I would get off of it as soon as possible. Stick with the antibiotics. That is the sure bet. You're just toying with danger doing the toxic drugs. good luck and the best to you. Dolores From: Sauve <moniquesauve@...> Subject: rheumatic taking mino with plaquenil? rheumatic Date: Sunday, February 21, 2010, 6:35 PM  does anyone here take minocycline and plaquenil? my mother is being told by rheumy she can't take both. is it ok to take plaquenil until mino kicks in and then wean off plaquenil? thanks monique Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2010 Report Share Posted February 23, 2010 Hi Ros, I am going thru this now. I had to quit mino and 6 months later started Doxy which in 2 months did nothing. I started to get swollen joints ad was really scared.So I am trying Clindamycin which is the first med that stopped the pain for me. The only problem is that my doc won't give me the IV's to take home and in his office it costs sooo much. As soon as the weather gets better (I am in Pittsburgh) I will go to his office for IV's. He is far from where I live so I will wait. How long were you off mino? I wish you all the success you need sooner than 12 months. Hugs cooky From: rheumatic [mailto:rheumatic ] On Behalf Of lind Gittings Sent: Tuesday, February 23, 2010 4:48 PM rheumatic Subject: rheumatic Taking mino with plaquenil? Hi Lynne Thanks for the info re Lyme disease. I'm in Australia and fortunately we don't have Lyme disease here. We do have some mosquito borne diseases but I've tested negative to those. I was feeling good last May and fed up with the candida effects of mino (even with good probiotics and strict diet) so I stopped it for a while. The candida improved and I felt much better in that regard but in two or three months the pain became very bad. I began the mino again in September and it's still not really controlling the pain though I think it's a bit better. I now have some joint deformities (which I didn't have before I stopped the mino). I've been having 1mg prednisone daily for a few weeks and things are better so am down to 0.5mg but I will stop that in two weeks. At one time in desperation I even thought of going on methotrexate because I didn't want more deformities (I want to keep being able to walk for exercise) but have scrapped that idea since I know a few people on it and don't want the fatigue and general unwellness that they seem to have. So I'm persevering with the mino and plaquenil. I think someone on one of the lists said it can take up to twelve months to work once you stop the mino and start again. I don't know why that would be but I'm hoping for good results in the end. Everyone, don't give up the minocycline!!! (unless in special circumstances of course). Ros Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2010 Report Share Posted February 23, 2010 Hi Roz; Want to bet that you don't have Lyme in Australia? Check out Lynnie's posts at www.rbfbb.org.She has it as do several other Aussies. I have the same problems with yeast and must take Sporomax or Diflucan every few months.I am on Fluconazole along with mino and a couple other antibiotics and it seems to be keeping the yeast in check. Lynne > > > Hi Lynne > > Thanks for the info re Lyme disease. I'm in Australia and fortunately > we don't have Lyme disease here. We do have some mosquito borne > diseases but I've tested negative to those. I was feeling good last > May and fed up with the candida effects of mino (even with good > probiotics and strict diet) so I stopped it for a while. The candida > improved and I felt much better in that regard but in two or three > months the pain became very bad. I began the mino again in September > and it's still not really controlling the pain though I think it's a > bit better. > > I now have some joint deformities (which I didn't have before I > stopped the mino). I've been having 1mg prednisone daily for a few > weeks and things are better so am down to 0.5mg but I will stop that > in two weeks. At one time in desperation I even thought of going on > methotrexate because I didn't want more deformities (I want to keep > being able to walk for exercise) but have scrapped that idea since I > know a few people on it and don't want the fatigue and general > unwellness that they seem to have. > > So I'm persevering with the mino and plaquenil. I think someone on > one of the lists said it can take up to twelve months to work once > you stop the mino and start again. I don't know why that would be but > I'm hoping for good results in the end. > > Everyone, don't give up the minocycline!!! (unless in special > circumstances of course). > > Ros > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2010 Report Share Posted March 2, 2010 Hi , The doctor is wrong; you can take both together. In fact, it is apparently a good combination, as a number of people are taking both and doing quite well. Plaquenil (hydroxychloroquine) is not a drug I'd want to be on for a long period of time, but I'd rather be on that than a drug like methotrexate or Arava (leflunomide). Phil > > does anyone here take minocycline and plaquenil? my mother is being told > by rheumy she can't take both. is it ok to take plaquenil until mino > kicks in and then wean off plaquenil? > > thanks > monique > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 Hi . I am one of the other Road Back members who regularly uses both plaquenil and minocycline, and have for several years now. It is a perfectly fine combination of medicine. My plaquenil dose has been cut way back over the years to a maintenance level (only take 200 mg on Sat and Sun) -- and I take one mino on MWF. My symptoms are well under control -- and I am living a completely normal life. My husband is an ophthalmologist, and in his 25 years of practice he has never had a case of eye complications from plaquenil,and he sees a lot of RA patients. Yes, it does happen, but it really is not common, it is pretty rare. I hope your mother is able to stay on both medicines. Good luck. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2010 Report Share Posted March 13, 2010 Hi Bonnie I was glad to see your email and that you are able to thrive on a maintenance dose of plaquenil. In February I doubled my plaquenil dose to 400 mg daily for one month to try to alleviate the pain and gradual deformities of joints that happened when I stopped the minocycline (which I restarted last September). Unfortunately I seem to have had a reaction to this dose in the form of severe eczema all over my front from my neck to my navel. On Friday my dr said to stop taking plaq and I'm to see a specialist next week to try to find out whether it's the plaq or something else I'm reacting to. I've never had eczema in my life, though I am asthmatic. I'm dreading the thought that I will have to stop it permanently and possibly substitute with methotrexate which has side effects I don't want. So the idea that I may be able to take it only twice a week with safety gives me hope. I just hope I haven't set up a permanent " allergy " to it that happens with foods and drugs sometimes. the combination of mino and plaq worked so well for the years I've used it and I hope it will again. Ros Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hi Ros, It is possible that 400 mg of Plaquenil per day was too much for your body to deal with, in which case you may be able to resume taking it at the dose you were originally on after a short break from it. Eczema is not an allergic reaction. Are you sure it's eczema? Has a doctor told you it's eczema? Phil > > Hi Bonnie > > I was glad to see your email and that you are able to thrive on a > maintenance dose of plaquenil. In February I doubled my plaquenil > dose to 400 mg daily for one month to try to alleviate the pain and > gradual deformities of joints that happened when I stopped the > minocycline (which I restarted last September). Unfortunately I seem > to have had a reaction to this dose in the form of severe eczema all > over my front from my neck to my navel. On Friday my dr said to stop > taking plaq and I'm to see a specialist next week to try to find out > whether it's the plaq or something else I'm reacting to. I've never > had eczema in my life, though I am asthmatic. > > I'm dreading the thought that I will have to stop it permanently and > possibly substitute with methotrexate which has side effects I don't > want. So the idea that I may be able to take it only twice a week > with safety gives me hope. I just hope I haven't set up a permanent > " allergy " to it that happens with foods and drugs sometimes. > > the combination of mino and plaq worked so well for the years I've > used it and I hope it will again. > > Ros > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hi , Yes, based on what I've read I'd say that Plaquenil is safer. Especially since your son has Lyme Disease. Enbrel is a strong immunosuppressant, and giving that type of drug to a person with Lyme is not a very good idea. Quote: " Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. " See: http://www.lymenet.org/BurrGuide200810.pdf Phil > > Will plaquenil help deformed joints? Our Dr. wants to put our son on enbrel > for that but isn't plaquenil safer? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hi Sue, You're welcome. I meant to ask you a question and forgot. Besides minocycline and azithromycin, what other medications is taking? Phil > > Thank Phil, > > > > I will be speaking with Dr. on Tuesday as well as ask him about it. We > just need to try and get his joints back they are really bad right now. > > > > Sue - 's Mom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hi Sue, Is there some reason why your son is not taking an NSAID such as Motrin (ibuprofen) or Aleve (naproxen sodium)? The anti-inflammatory action of an NSAID enhances the effectiveness of the antibiotics, and might have prevented some or all of the joint damage. Phil > > Hi Phil, > > > > He also takes prilosec for his stomach and probiotics. Sometimes he takes > MSM, serrapeptasse, vit e and omega 6 but it is hard to get him take them > all the time. He also is deficient in Vitamin D so he takes that as well. He > was first diagnosed with JRA, then scleroderma, then morphea/mctd and most > recently chronic lyme. We are just so very confused. He only had one band > that was positive (31) and 2 indeterminate (41 & 58) so I don't know if I am > on the right path or not. > > > > sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hi Sue, Yes, NSAIDs are taken every day. If he has stomach problems, some of the drugs are available as suppositories. I am specifically thinking of diclofenac, though there may be others. Even though the suppositories may help, taking a medication to protect his stomach would probably still be a good idea. Another consideration is that not all of the NSAIDs are equally hard on the stomach, and not all people react the same. For example, I cannot take uncoated aspirin or naproxen sodium because they really bother my stomach. On the other hand, I can tolerate ibuprofen and enteric-coated aspirin quite well. As for Tylenol, no, it won't do the same thing. Although it can help with pain and fever, Tylenol (acetaminophen or paracetamol) is not an effective anti-inflammatory agent. Phil > > He only takes it once in a while - should he take them all the time and > because he has so many problems with his stomach, we were worried and the > Dr. said to have him take Tylenol instead - will that do the same thing? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Hi Sue, Are you familiar with The Road Back Foundation? If not, I recommend that you visit their web site: http://www.roadback.org/ In the menu on the upper left, there is a link to the bulletin board. Click on it and sign up for the bulletin board. I think you'll be able to get some additional help on there because that board is very active and there are quite a few people on there who have Lyme Disease. Phil > > He has had terrible problems with pain and diarrhea. He had a colonoscopy > and endoscopy a few weeks ago and it showed reflux and quite a bit of > eosyphilliac (spelling??) in the lining which the Dr. attributed to a milk > allergy but it can also be from an autoimmune disease so we are not sure at > this point. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Hi Sue, Where did they find the eosinophilic inflammation? Phil > > He has had terrible problems with pain and diarrhea. He had a colonoscopy > and endoscopy a few weeks ago and it showed reflux and quite a bit of > eosyphilliac (spelling??) in the lining which the Dr. attributed to a milk > allergy but it can also be from an autoimmune disease so we are not sure at > this point. > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.