Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Hi! Please elaborate on your treatment for intestinal parasites. I assume you were giver an herbal remedy as well? My mom is 80 and won't do massage but she might be open to this. I am very familiar with alternative medicine/treatment but struggling to find a successful treatment for her. She's giving up...

I am taking 12 mg methylprednisolone daily and 1cc methotresate weekly. I was troubled by insomnia so my Integrated Medicine doctor recommended taking PharmaGABA - 250 by THORNE. My rheumatologist agreed. It has helped me with sleep. I take 1 at bedtime and 1 more if I wake up and cannot go back to sleep. She has told me I can take up to 3 a day. It somehow calms down the brain activity caused by the methylprednisolone. I hope you find some help.

I have also been put on Hydroxychloroquine to help with petering down the Prednisone. It did help in getting me down to 4 mgs. Prednisone, but I noticed that the swelling in my legs increased. Long story short, after seeing numerous doctors about the swelling it was discovered that if I cut back on the hydroxychloroquine the swelling went down considerably. I guess each person reacts differently and you have to judge what is best for you. Good luck.

@maryannhaller. By "GCS" do you mean GCA, Giant Cell Arteritis? Surely, with your symptoms, your rheumatologist should have tested you for that. The "golden" test for GCA is biopsy of your optic artery. Painless, with just local anesthetic, and virtually no visible scar at your hairline just in front of your ear. Perhaps your second opinion doc will perform that test. It's the only sure diagnosis for GCA. I have had weekly Actemra injections, a medication specifically developed for GCA, for over a year. A year before that, I was hospitalized for 3 days of I.V. Prednisone injections because the GCA had caused blindness in my right eye and this was to stop the blindness going to my left eye. That saved the vision in my left eye! I was on high doses of Prednisone for the following year and then my rheumatologist put me on Actemra. Much easier to take than Prednisone!
I hope you get some answers from your second opinion doctor.
Warmest wishes, Laurie

Hi @maryannhaller I had PMR for 9 -10 months, untreated, then got a horrible stiff neck, so bad I couldn't turn my head, my neck was so stiff, it would get stuck. I had to turn my whole body to look sideways. I also had severe pain on both sides of the back of my head, down the neck and short stabbing pains on the side of my head, ear to nose, that came and went. Twice I had difficulty seeing out of my right eye, but those incidents were short lived. Also, a dry non-productive cough, tender scalp, severe itchiness on my torso, loss of appetite and anemia. A couple of days before I had a temporal artery biopsy, the rheumatologist upped prednisone to 40 mg. The neck pain totally disappeared. The biopsy was positive, In six months, I've tapered to 7.5 mg prednisone with no flare ups. I hope my experience helps you. My mother-in-law had GCA and her symptoms were textbook, entirely different from mine. The consequences of untreated GCA can be severe so I hope you get some answers soon. All the best.

Hi warriorsue333 I'm wondering if your mom actually experienced negative health effects on the prednisone or her doctor was worried about negative health effects and discontinued it. Did he taper her dosage? If your mom doesn't want to live anymore due to the pain, do the negative effects of the prednisone outweigh the positives, i.e., pain free and wanting to live? My mother-in-law was diagnosed with GCA in her late 80s, prescribed the appropriate dose of prednisone and lived two months short of her 100th birthday. She did have osteoporosis. I had PMR and GCA and now I am on a low dose of prednisone, 7.5 mg after tapering. I have osteoporosis, as well, but it started before I began prednisone. I use an infrared heating pad - the Thermotex Platinum - for osteoarthritis in my shoulder. It relieves pain while I'm using it and is comforting. Combined with PT exercises, my shoulder is getting better slowly. I also used the heating pad when I had severe pain in my legs from PMR. It was pricey, but I thought it was worth it if I was going to spend the rest of my days in terrible pain. My rheumatologist told me that acetaiminophen is the preferred analgesic for osteoarthritis. My mother in law took it daily. I take it occasionally
Recently, I read about a study in which 100 mg of saffron a day reduced inflammation in those with rheumatoid arthritis who were on prednisone. You can check it out by googling http://www.examine.com and saffron.
In my experience, there is nothing like the pain of PMR - it is 10 on a scale of 10. I wish you and your mom the best in trying to find a solution to this.

I am grateful for your input. I'm sorry you struggle with it to. Sending you prayers, love, and healing. The prednisone has caused moon face, severe bruising, an insatiable appetite, weight gain, bloating, and is destroying her bones to name a few. Bone density was really bad which is why he's discontinued it, plus she doesn't want to take it anymore. And yes, tapered.
I will ask her rheumatologist if he's tested for GCA. The only symptom she has is newer eye issues. Her shoulders are really bad as well as hips and lower back, which they've told her is from compression fractures.
I've been researching infrared treatment/infrared sauna blankets. Glad you mentioned the heating pad and that it's helping. Have you tried accupuncture?
She practically lives on acetaminophen as she cannot take n-saids. It doesn't help.I've also started her on high quality turmeric which, sadly, doesn't seem to be helping yet. She's also never taken care of herself physically or mentally and has led a very unfulfilling life. Her diet is atrocious. So I feel this has a lot to do with it.
I will dive into researchibg saffron. Thank you for sharing. Blessings to you!

Hi, reading your post gives me deja vu. I was terrified as to what happened to the fitness guru (me) who does triatheletics for fun. After going in & out of drs & self medicating in lieu of being laid up 4 days after my tri-adventures prednisone was a food group. I knew what my CRP & Sed rates were cuz I just knew. Not so much the 1st time in 2014 but it was 245. Yes that’s right.
(In a nutshell I’m prone to mosquitoes black flies, any blood sucker out there. Here’s the scoop on that. In order for you to go into remit ion you must be symptom free for 2weeks to a month w/o tapering. Once you stabilize, slowly knock down a1/2 at a time. If not, you symptoms will bounce back at you & you start all over. My PMR attacked almost ever joint I have. It has since morphed into a neglected tropical systemic. disease. Get with the Rheumatologist and get a set plan. Prednisone is your only defense. I went into remission for 18 months but it came back wi vengeance. It’s a bitch but yoga, mindfulness, anything you can do to get out of your own head works. Good Luck

Hi @warriorsue333 so sorry to hear about all your mom's suffering. I experienced the bad effects of prdenisone on the high dosage, 40 mg. Around 10 mg, they started to go away. Eye problems can indicate Giant Cell Arteritis, which can lead to blindness or stroke. 30% of people with PMR develop GCA. You should let the doctor know about those symptoms if you haven't, but you seem to have everything covered. I did read a summary of a paper in the Lancet Rheumatologist about a drug called tocilizumab possibly replacing prednisone for GCA, but it is in the early stages of being studied. I never did try accupuncture. I ate a plant based diet, took supplements, exercised, but still wound up with PMR and GCA. There are genetic markers. A new study (Dr. Andrew Weill summarized) found that omega 3 fatty acids

Sorry@warriorsue333, just going to finish the comment - omega 3 fatty acids and Vitamin D can help prevent autoimmune disorders. Maybe supplementation can help alleviate? Your mom is lucky to have you as an advocate. All the best.