Treating PMR with Prednisone and Hydroxychloroquine
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.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
@southtexas, @johnbishop, and all...I'm feeling poorly at the moment, with extreme fatigue...went to bed for the night last night at 5pm... just tested negative for Covid, 2nd time in 7 months. PMR is still acting up but controlled some with 10mg prednisone.
I am convinced, as I was in 2020, that I should have been taking Hydroxychloroquine regularly based on the research at the time, politics and politicians aside!!!!!! I think many of us in the older ages with medical issues would have been helped, kept out of the hospitals and off vents, had the doctors been more proactive with this medicine. I have Sarcoid from age 40, and other autoimmune issues, so I am sold on using this medication for help with PMR, GCA, and Covid...
I'll let you know how it goes...Also, anyone know anything about Rick Simpson Oil? I was told some patients with extreme nerve and other pain are using it, not to ingest, but topically mixed with body lotion like Gold Bond or Jergens or whatever. A small amount mixed in the lotion bottle and applied will help with extreme pain issues when MM is not available, or you need additional help.
I'm researching this oil for my son, Dystonia and extreme uncontrolled nerve pain...and myself. Any comments appreciated.
Blessings, Elizabeth
Hi Elizabeth, There is a discussion on Rick Simpson Oil (RSO) that might have some answers for you - https://connect.mayoclinic.org/discussion/rso/
I was on prednisone (P) and hydrocholoquine (H) 400 mg. I could not sleep and had weird dreams. Reduced H to 200 and can sleep better but not as well as before H. Does anyone else have problems with sleep and H?
@johnbishop, and all...John, I had bloodwork and tests Monday, and very high urine protein, other kidney involvement as I had in 2022 and was diagnosed with vasculitis. This is another diagnosis I'm learning about and don't want to know anything about!!!
Oh, well...such is life as an autoimmune patient...just keeps rolling along.
This does explain a lot of my debilitating symptoms now that seemly came out of nowhere...again, I'm of the belief it's Covid related as I'm coming off a 2nd Covid infection in 7 months.
I'll be interested to know the treatment, as I'm taking 10mg Prednisone now for PMR/GCA and can't reduce it without increased pains, etc. I hope I can still get hydroxychloroquine as we increase the steroids and add autoimmune suppressant drugs.
YUCKY!
I'm spending most of my days in bed on the laptop, cell and phone, resting as the fatigue is extreme at this point. Pain is fairly controlled. It'll be interesting as I continue this journey. I am determined to complete my home improvements, purging, sales to have my surroundings as I want them and leave my son in a tenable situation. Determined! So, autoimmune diseases...get out of the way and let me do my job!
It's beautiful here the rest of the week...in 60s now, today and next several days we'll be in the 70-80s and our sweet plants and flowers will thrive. Azaleas bloom in Feb/March, Crepe myrtle trees break out in bloom in March, we just trimmed the trees back some to encourage blooms and shape them. I hate it when folks butcher these lovely southern gems, so we are prudent with trimming for shape, not butchering down to nubs!
Life goes forward. We deal with each thing that comes our way and we survive!
Blessings, Elizabeth
@johnbishop and all...I neglected to tell you the new diagnosis! microscopic polyangiitis, autoimmune disease! Yucky!!!
Will work with it and survive...Blessings, Elizabeth
You are not alone my friend! Hoping you find something that helps.
--- Anyone Living with MPA (Microscopic Polyangiitis) Vasculitis?: https://connect.mayoclinic.org/discussion/anyone-living-with-mpa-microscopic-polyangiitis-vasculitis/
One week on hydroxy twice a day. Prednisone 11 daily. Pmr for 3 1/2 years. Trying to reduce prednisone again was 5 mg.
@1942marilyne, @johnbishop, and all...Hello, everyone. My PMR and autoimmune friends...I saw my Mayo rheumatologist yesterday...YEA! It was a wonderful visit with a lot of good information exchanged and I learned so much. I left feeling so uplifted that this man understands my issues and struggles in my life. He gave me affirmation that my lifestyle changes are improving my health and helping the autoimmune issues respond better to the treatment.
I'm staying most of the day in bed, sitting with lots of comfy pillows, and drapery opened and enjoying feeling like I'm in my little treehouse, in the huge, beautiful limbs of my old live oak tree with Spanish moss and lots of squirrels and birds, etc. It's a joy to see outside and to have the light and beauty come into my bedroom. This tree is in front of my condo building, in the parking lot, so I'm not on lovely acreage or have a beautiful piece of property... It's a parking lot and a building across the street, with a lovely live oak tree the length of all my windows...
I get activity during the day puttering around, doing small things upstairs to keep my life going smoothly. But, I'm spending most of my days in bed, resting. Against my nature totally! Against my upbringing! Totally! I was never allowed to stay in bed or lounge around. We all had chores and participated in-home care and life...so to live like this is challenging for me. But, the doctor was so kind and told me this is exactly what I must do.
I've taken Prednisone for new PMR and GCA diagnoses since I had COVID-19 last July. I attempted a taper but had to go back to 20mg daily to have the pain relief I needed and any relief from extreme fatigue. He added 7.5mg of methotrexate once weekly to help the Prednisone do its job and to reduce the need for the steroid. I'm thrilled!
I asked him about using hydroxychloroquine in conjunction with Prenisone as some of you are taking. He said yes, that's a consideration, but my autoimmune issues are severe, so methotrexate is preferred.
He also added a prescription for Folate supplementation as Methotrexate can cause anemia and reduce folate in patients. I have a problem with anemia, don't absorb B vitamins, Iron, or other nutrients well, and need regular supplementation. We'll watch these levels closely with regular bloodwork.
Hope this helps all. You surely help me with your info! Appreciated!
Blessings, Elizabeth
On hydroxy 2 weeks. Do not see difference yet. Prednisone 11 mg Qd. Am I rushing things? 3. 1/2 years now on PMR. A little discouraging.
Functional medicine doctors can help with autoimmune issues very well