Treating PMR with Prednisone and Hydroxychloroquine

Posted by joeblo746 @joeblo746, Aug 17, 2022

My doctor just added Hydroxychloroquine to my PMR treatment. He said it helps Prednisone do it's job. Seems like there are more side effects associated with it then there are with the Prednisone. Does anyone know if the Hydroxychloroquine helps. Also heard Hydroxychloroquine can take up to three months to build up enough in your system to be therapeutic.

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@montek

as mentioned earlier I have been on methylprednisolone(MP) for quite some time a few years back and never had any problems weaning off. What strength were you on ?? I am only on 2 mg per day and someday I even skip that dose. Was your dose much higher? That would inform me as to why you might have had such effects when you went off. I am on this very low dose if I think it is a low dose. What is your take on this if you would reply?
The only thing I will add - is that I am only on it for 3 days so far and I feel incredibly better. No more tightness or aches and I feel so fluid. Even when I stretch I feel so much better than I did before I started taking this.

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Most of the problems people have with prednisone and methylprednisolone are because of higher doses taken for long periods of time. In my humble opinion, taking 2 mg of methylprednisolone for a few days shouldn't cause too many problems.

It sounds like you have relatively low levels of inflammation which can result in significant amounts of pain and discomfort. Doctors frequently prescribe corticosteroids for this type of situation because the "cumulative dose" is relatively small since you only take it for a short while.

Methylprednisolone is a prescription medication and not as safe as some over-the-counter medications used for inflammation. It should only be used with medical supervision.

I was guilty of "self medicating" with doctor supervision which creates problems too. My doctor was a participating accomplice. In retrospect, I'm not sure how I feel about that situation. I listened to my doctor rather than unqualified people over the internet. I consider myself unqualified even though I took high doses of prednisone daily for 12 years for PMR. I'm not giving you medical advice.

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I have read all of your replies and thank you. But at this point in my life, I am pretty healthy. I am an avid exerciser and hiker with my wife. I have NO real ailments except for this tightness. As mentioned my rheumatologist has said I have Rh factor in my blood from blood tests which he does many many of them when I see him about 2-3 times per year. That is why he put me on Plaquenil and Medrol for my tightness. he is a really nice guy and the practice he works for and is a part of is a real well known and praised practice. I feel he cares for me chats with me and asks me all the pertinent questions. And again when I mentioned that another doctor (not a rheumatologist said to not go on medrol long term he said that the body makes a certain amount anyway and the amount I would be taking would NOT turn off my body from continuing to make its own or to halt my immunity. I am old school and as a kid, I played in all the dirt and played with bugs and I guess that set my body up to fight today's problems. I had COVID-19 but a light case. I have had all the boosters. Other than than regular bumps along the way I am pretty healthy. The only time I was sick was 7 years ago when I hurt my back doing heavy weight lifting(never again) and I had a cortisone shot in my back that caused an infection and sepsis. This caused something called abdominal Compartment Syndrome where my body filled up with toxic fluid and I gained 45 pounds of this fluid and it started to crush my organs from the pressure. At the age of 59 I was rushed to the hospital for emergency surgery- drained of all the toxic fluids for 18 days in a medically induced coma yes 18 days. I came out and went to occupational therapy to learn how to walk again amongst other things and physical therapy. This all happened in February of 2016 and I went back to work in July of 2016. all my doctors from my surgeon on down said after what happened to me I should stay out for 1 year with no questions asked. But when I came back from the hospital after 6 weeks. I started exercising with resistance bands and started to walk with weights in my hands and I am now as strong or stronger than before the operation. The surgeon told my lovely fantastic wife that if not for my diligence in exercising and the shape I was in then- I might not have made it through the 7-hour surgery. So I have been to hell and back. I just do not want to have this ailment of tightness in my hands especially when I exercise. That is why I am taking this wonder drug of medrol and again ONLY 2 mg. So there you have it. My life history. I always see my Rheumatologist and he recommended I take calcium and vitamin D which I do daily. So that's it- I do not want to change meds- because I have had such good results with medrol. So I refuse to look a gift horse in the mouth so to speak.

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@dadcue

Most of the problems people have with prednisone and methylprednisolone are because of higher doses taken for long periods of time. In my humble opinion, taking 2 mg of methylprednisolone for a few days shouldn't cause too many problems.

It sounds like you have relatively low levels of inflammation which can result in significant amounts of pain and discomfort. Doctors frequently prescribe corticosteroids for this type of situation because the "cumulative dose" is relatively small since you only take it for a short while.

Methylprednisolone is a prescription medication and not as safe as some over-the-counter medications used for inflammation. It should only be used with medical supervision.

I was guilty of "self medicating" with doctor supervision which creates problems too. My doctor was a participating accomplice. In retrospect, I'm not sure how I feel about that situation. I listened to my doctor rather than unqualified people over the internet. I consider myself unqualified even though I took high doses of prednisone daily for 12 years for PMR. I'm not giving you medical advice.

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I appreciate your reply. But yes I am listening to my doctor. I do like to see what others have experienced BUT My doc had MY blood tests and that is what counts. And again I am not on if for the short term yes I just started the medrol BUT I will probably stay on it for some time - not sure how long but we shall see. If you read my long history you can see what I mean. I listen to my body and my small amount of inflammation is NOT causing me lots of pain- it is more like tightness in the hands like when I make a fist etc. it is really helpful when I take the medrol. I feel brand new again with zero tightness and NO pain and feel vibrant at the young age of 66 1/2. So who knows? We only go around once in life and I want to live it pain-free and if medrol is going to do this for me- then let's do it.

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@nancy334

I started 3 1/2 yrs ago on prednisone…after several years of no success reducing pain and getting off it Sulfasalazine and hydroxychloroquine were added …after 18 months of no consistent improvement..Actemra has been added …I think now thing are actually getting better …I’ve only been on the Actemra for a month and I’m able to sleep much better as I have less pain in joints and can almost walk normally …also feel much less like I have flu all the time …hope to drop prednisone very soon as down to 1 mg daily now…

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Sulfasalazine and other DMARDS. My rheumy recently switched me to my third DMARD. First, I was on methotrexate for two years which I self-injected and it seemed to help the tapering process to get off prednisone. Then I experienced negative liver lab tests which apparently isn’t that unusual. So, my rheumy then prescribed hydroxychloroquine to replace the methotrexate. I immediately felt better and had more energy for exercise but I also developed diarrhea which wouldn’t go away and I finally had to stop it. By this time, I was down to 1 mg of Prednisone and was feeling that the end was close. I started back in the gym and was feeling the best I had felt in over two years. Then, whammy, I suffered the first flare I have ever had. I increased my prednisone but apparently not enough because I then suffered two additional flares each worse than the previous ones. Now, my rheumy has prescribed Sulfasalazine and I am back on a slow taper from 7 mg of Prednisone. Two weeks in I am feeling good but am cautious about repeating my earlier failure of trying to go without any DMARD.
I think I never fully understood the function of DMARDs. First, they allow us to taper off of Prednisone far faster than without. Second, because a DMARD also reduces inflammation on its own, many of us will continue with a DMARD even after we have finished with Prednisone. So, rather than an afterthought or a secondary supplement we need to see a DIMARD as a co-equal to Prednisone.
I would like to hear from others about their experience with both Hydroxychloroquine and Sulfasalazine. Tell me about any side-effects and whether you feel better after taking them.

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I can’t say what side effects I’ve experienced from the sulfasalazine /hydroxychloroquine(H+S) or the Methotrexate as they were started together…do get bouts of diarrhea and abdominal pain on days of metho injection…and also when I take the weekly alendronate ….I am super tired on metho injection day too…I haven’t increased my prednisone from 1 mg even though I’m experiencing lots of pain …trying to stay at same rate of all my meds for 3 months and go from there …since the Actemra injections started liver is def being effected but staying the course there too in hopes things will level out …but still no get pain free times …I’m all over the place with very bad days and then not so bad …I don’t get to see Rhuematologist for another 6 weeks so just trying to hang on until then …also don’t feel very hungry and can’t taste foods very well which doesn’t help …have big sneezing and yawning bouts …really hope for a breakthrough soon !

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@jcaffrey47

Sulfasalazine and other DMARDS. My rheumy recently switched me to my third DMARD. First, I was on methotrexate for two years which I self-injected and it seemed to help the tapering process to get off prednisone. Then I experienced negative liver lab tests which apparently isn’t that unusual. So, my rheumy then prescribed hydroxychloroquine to replace the methotrexate. I immediately felt better and had more energy for exercise but I also developed diarrhea which wouldn’t go away and I finally had to stop it. By this time, I was down to 1 mg of Prednisone and was feeling that the end was close. I started back in the gym and was feeling the best I had felt in over two years. Then, whammy, I suffered the first flare I have ever had. I increased my prednisone but apparently not enough because I then suffered two additional flares each worse than the previous ones. Now, my rheumy has prescribed Sulfasalazine and I am back on a slow taper from 7 mg of Prednisone. Two weeks in I am feeling good but am cautious about repeating my earlier failure of trying to go without any DMARD.
I think I never fully understood the function of DMARDs. First, they allow us to taper off of Prednisone far faster than without. Second, because a DMARD also reduces inflammation on its own, many of us will continue with a DMARD even after we have finished with Prednisone. So, rather than an afterthought or a secondary supplement we need to see a DIMARD as a co-equal to Prednisone.
I would like to hear from others about their experience with both Hydroxychloroquine and Sulfasalazine. Tell me about any side-effects and whether you feel better after taking them.

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I'm on Hydroxychloroquine and still tapering down on the Prednisone. This past week I went down from 7.5 mg to 5 mg and had severe pain for several days; it was excruciating. I was in so much pain I took 2 Advil Gels, not knowing that I wasn't suppose to take that type of med. Felt better within the hour and the pain went away and has been gone ever since. Lesson learned: I will now try Tylenol the next time I have pain. I still feel okay enough to get some things done in a day which I couldn't do before. I'm not a 100% but anything is better than I use to feel; incapacitated by the pain and stiffness. I am able to do some of my daily chores, and cook and bake once in a while. Food shopping for 4 has been a bit challenging, especially bringing the bags into the house and putting the things away. I'm tired, but I'm sure the weight gain from the Prednisone does not help; addressing that as we speak. Thank God my daughter and son have been able to help me.

I also found that depending what I was eating in a day, would definitely affect how I would feel within the next 48 hours. My blood sugars and liver enzymes are up. I just started a healthy diet and will continue to stay away from sugar, caffeine, and excessive amount of carbs (Ex. breakfast this morning consisted of 1 egg, 1 egg white, peppers, onions, and mushrooms. Had decaf ice coffee with Almond milk). I made this decision after deciding "it just isn't worth it". I will still have a cheat day once in a while, but I'm now very aware of what and how much I eat.

As far as sleep, I have been on a lot better schedule getting at least 7 hours a night during the week and 6 on the weekend. I have two dogs, one of which receives different meds around the clock for seizures and weakness in his hind legs. The other has Pannus (early onset blindness--diagnosed at 5 years old). I believe these things happen for a reason. My daughter also has special needs and is doing well in spite of all her challenges she has faced since after her birth. They are my life. Like the saying goes, "who saves who"? I don't know what I would do without them.

P.S. I want to thank everyone who has given me input regarding my PMR journey. I've been receiving wonderful feedback from many members of the support group and greatly appreciate their helping me to navigate this mess. God bless all of you with many hugs for all your help
!

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@jcaffrey47

Sulfasalazine and other DMARDS. My rheumy recently switched me to my third DMARD. First, I was on methotrexate for two years which I self-injected and it seemed to help the tapering process to get off prednisone. Then I experienced negative liver lab tests which apparently isn’t that unusual. So, my rheumy then prescribed hydroxychloroquine to replace the methotrexate. I immediately felt better and had more energy for exercise but I also developed diarrhea which wouldn’t go away and I finally had to stop it. By this time, I was down to 1 mg of Prednisone and was feeling that the end was close. I started back in the gym and was feeling the best I had felt in over two years. Then, whammy, I suffered the first flare I have ever had. I increased my prednisone but apparently not enough because I then suffered two additional flares each worse than the previous ones. Now, my rheumy has prescribed Sulfasalazine and I am back on a slow taper from 7 mg of Prednisone. Two weeks in I am feeling good but am cautious about repeating my earlier failure of trying to go without any DMARD.
I think I never fully understood the function of DMARDs. First, they allow us to taper off of Prednisone far faster than without. Second, because a DMARD also reduces inflammation on its own, many of us will continue with a DMARD even after we have finished with Prednisone. So, rather than an afterthought or a secondary supplement we need to see a DIMARD as a co-equal to Prednisone.
I would like to hear from others about their experience with both Hydroxychloroquine and Sulfasalazine. Tell me about any side-effects and whether you feel better after taking them.

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I quit hydroxchloroquine was not effective for me. Still on prednisone 11 mg Qd. Now trying gabapentin 300 mg Qd some improvement muscle aches pains in middle of night

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@jcaffrey47

Sulfasalazine and other DMARDS. My rheumy recently switched me to my third DMARD. First, I was on methotrexate for two years which I self-injected and it seemed to help the tapering process to get off prednisone. Then I experienced negative liver lab tests which apparently isn’t that unusual. So, my rheumy then prescribed hydroxychloroquine to replace the methotrexate. I immediately felt better and had more energy for exercise but I also developed diarrhea which wouldn’t go away and I finally had to stop it. By this time, I was down to 1 mg of Prednisone and was feeling that the end was close. I started back in the gym and was feeling the best I had felt in over two years. Then, whammy, I suffered the first flare I have ever had. I increased my prednisone but apparently not enough because I then suffered two additional flares each worse than the previous ones. Now, my rheumy has prescribed Sulfasalazine and I am back on a slow taper from 7 mg of Prednisone. Two weeks in I am feeling good but am cautious about repeating my earlier failure of trying to go without any DMARD.
I think I never fully understood the function of DMARDs. First, they allow us to taper off of Prednisone far faster than without. Second, because a DMARD also reduces inflammation on its own, many of us will continue with a DMARD even after we have finished with Prednisone. So, rather than an afterthought or a secondary supplement we need to see a DIMARD as a co-equal to Prednisone.
I would like to hear from others about their experience with both Hydroxychloroquine and Sulfasalazine. Tell me about any side-effects and whether you feel better after taking them.

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What does dmard stand for? Thanks Ellen

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@1942marilyne

I quit hydroxchloroquine was not effective for me. Still on prednisone 11 mg Qd. Now trying gabapentin 300 mg Qd some improvement muscle aches pains in middle of night

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I too take gabapentin at night. Really has helped with tendon arm pain and relaxes me so I can sleep. Prednisone 15 mg is being tapered from 15 mg to 12.5 mg for 1 week (my request instead of going straight to 10 mg) and then I will go to 10 mg for a number of weeks. Dr is also increasing my methotrexate to 6 tabs and then further increasing to 9 tabs 2.5 mg once a week. He also prescribes 1mg of folic acid daily to prevent side effects of methotrexate. I’ve been very nervous about these changes but so far so good. I think my strict low sodium and sugar diet, drinking lots of water and walking 2 miles a day has helped tremendously.

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@elleninz

What does dmard stand for? Thanks Ellen

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Disease modifying anti rheumatic drugs.

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