I started Plaquenil n 2023 and took it about a year, first 300 then down to 200 after 3 months. I don't think it helped. I also took low dose naltrexone for about a year and couldnt tell any difference. No side effects, no effects. So I don't take anything but a little thyroid and 5mg prednisone. Im 2 1/2 years into PMR. I had dropped to 3.5 prednisone a year ago then was struck with diverticulitis. Prednisone helped that a lot so I yoyoed up and down the last year. Had surgery last month to remove sigmoid and I thought maybe PMR had burned out. It's back now though so I'll stay at 5mg for a few more months.
You are blessed that 1mg works. Stay with it.
I have several autoimmune diseases..many specialists..at one time I had 40 mg shot...then 20mg then stop down.
I am blessed by God to be as active as I am.
Prayers to you.
Hi - did they ever say what the pain in the right side was? E.g. for example, did the drugs effect the organs or was it muscular or nerve pain unrelated to the organs. Curious because I also get some pain in my right side and I know that methotrexate toxicity caused inflammation in pancreas and also possibly the spleen. The liver however seemed to have been unaffected. Now off the methotrexate and it looks like the right side pain has gone or at least calmed right down.
Actually, the doctor did not explain nor test further. It was just assumed the pain was from an organ reacting to these drugs. Who knows? Pred was working and this was to possible hasten the tapering of pred.
Thanks for this info, I tried both of these drugs at the beginning of my PMR journey and both caused pain in my right side. So, we stayed with Pred. I am currently on 1 mg of pred every other day. Best I have been in 3 years. Should I expect very adverse effects from this low dose? Highest dose I ever took was 10 mgs about a week, with some small infections occurring ( eye and nose). Went to 5 mgs for a long time and then started the descent. Been on 1 mg for a while now. 1/2 appears inadequate after a few days. Appears 1 mg every other day is the lowest dose with the least pain. Thoughts?
I have had right side abdomen pain for many years. I have Chron's and had endometriosis which is also now considered an autoimmune disease. I think Dr call it stacked autoimmune. Point is I always have abdominal pain so I would not know.
After being stricken with PMR (due to taking statins), I took Prednisone (15mg) for several months, slowly reducing the dosage down to 7.3mg after 7 months. However, because I was developing Macular Degeneration (due to Prednisone) my Ophthalmologist suggested I switch to HCL (Hydroxychloroquine). Over a months time, I gradually switched from Pred to HCL (200mg). Eventually reduced the HCL over a years time. The treatment was very successful and my CRP is now normal and I haven’t had any PMR symptoms in two years. I should also mentions that I quit taking Statins, which I believe caused the PMR in the first place.
I been taking HCQ for 2 years after tapering of prednisone. No side effects at all. Also I only had the flu once and only for 24 hours. I would like to know if statins drugs are related to PMR. I started statins also before PMR. Thanks
No he did not. He claims (like almost every doctor has been trained to do) that “Everyone over the age of 60 should be taking statins”.
He wanted to change to another brand (from Simvastatin). I said no way. He then said there are other meds he can prescribe that are not statins. He suggested Ezetimibe. Here are the serious side effects:
“Myopathy and rhabdomyolysis: A severe muscle problem involving muscle breakdown, which can lead to kidney damage. The risk is higher when ezetimibe is combined with a statin.”
Obviously I said no.
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Hi, be sure and read about HCL on Mayo's drug/supplement page. This drug is also hard on your vision.....don't stay on it too long.
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3 ReactionsThank you. That is very encouraging!
I started Plaquenil n 2023 and took it about a year, first 300 then down to 200 after 3 months. I don't think it helped. I also took low dose naltrexone for about a year and couldnt tell any difference. No side effects, no effects. So I don't take anything but a little thyroid and 5mg prednisone. Im 2 1/2 years into PMR. I had dropped to 3.5 prednisone a year ago then was struck with diverticulitis. Prednisone helped that a lot so I yoyoed up and down the last year. Had surgery last month to remove sigmoid and I thought maybe PMR had burned out. It's back now though so I'll stay at 5mg for a few more months.
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3 ReactionsThank you so much! We are both thankful for the degree of health and mobility we have currently.
Actually, the doctor did not explain nor test further. It was just assumed the pain was from an organ reacting to these drugs. Who knows? Pred was working and this was to possible hasten the tapering of pred.
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1 ReactionI have had right side abdomen pain for many years. I have Chron's and had endometriosis which is also now considered an autoimmune disease. I think Dr call it stacked autoimmune. Point is I always have abdominal pain so I would not know.
I just had this conversation with my Dr. Stating make me sick..no way I can take them. Did your Dr say what caused issues with Statins
Hate spell check !
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1 ReactionI been taking HCQ for 2 years after tapering of prednisone. No side effects at all. Also I only had the flu once and only for 24 hours. I would like to know if statins drugs are related to PMR. I started statins also before PMR. Thanks
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1 ReactionNo he did not. He claims (like almost every doctor has been trained to do) that “Everyone over the age of 60 should be taking statins”.
He wanted to change to another brand (from Simvastatin). I said no way. He then said there are other meds he can prescribe that are not statins. He suggested Ezetimibe. Here are the serious side effects:
“Myopathy and rhabdomyolysis: A severe muscle problem involving muscle breakdown, which can lead to kidney damage. The risk is higher when ezetimibe is combined with a statin.”
Obviously I said no.