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

You are absolutely right, sometimes one is so overwhelmed that one forgets to put others in context. I was diagnosed with PMR in December I started Prednisone 20mg and Methotrexate 15mg. I am now on 5 mg of Prednisone and 15 of Methotexate. When I asked the doctor's office what I could take in case I felt bad, they told me to stop the treatment. With all that I have learned here in these 3 months, it seemed illogical to me that stopping Methotrexate would be reasonable but not Prednisone. Thank you very much for the article. I hope the googel translator did a good job this time.

I am walking into my fourth year. Although my inflammatory indications are very light I still get stiffness and pain, but thank goodness not much. I started getting better when I took my diet seriously. I used to believe I could eat small amounts of the forbidden foods with no problem but as I wasn't progressing I started to take what I ate seriously. My diet is boring and bland but I was able to go down to 2 1/2 prednisone and it looks like I can reduce again soon. PMR isn't something to treat casually. It pays to take notice of everything the medical people tell you about diet and pull up the big persons panties and do it. There doesn't seem to be any easy way out of this.

Hello again, I remember having awful pain early on in my treatment. Had problems getting in and out of bed and even turning over. Most of the pain was in my bicep and pelvic girdle areas. I also developed gout without realizing it and then had a jolly old time limping to the toilet, almost falling in and then in agony trying to stand! I think for most of us the memory of that pain keeps us clinging onto each last mg of that Prednisone even though we hate it. I know I have developed a new understanding of people becoming addicted to pain killers.

Even though I have a happy disposition, there are times when I'm just fed up with it. Before this, I was a volunteer docent at our State Museum but have had to put it on hold because tours start early in the morning when I am not at my best. There are so many things I still want to do, but I'm doing them in moderation now. I'm even taking my grandchildren to Pompeii this summer and ignoring the fact that I may not be able to keep up with them. I'll just look out for a handy uber chariot!

I am a grateful person, for so many things - but this PMR experience is a tough one. I did convince my rheumo to go back to 15 mg (was at 10) and taper slower. While I feel better (3 days in), I still have pain and stiffness in arms and legs. It's manageable but I don't know how much I can, or can't do, without setting this beast on fire. I had a very active life before this hit (about 7 wks ago)/diagnosed 4 wks ago) and I am in a bit of shock at the moment as to my current reality. It's SO helpful to hear from everyone. I can't imagine not having this resource - though the length of time people having been dealing with PMR is a damper. All a new challenge to conquer :).

The places I found a year or so ago don’t seem to be doing much information on diet but this is what I found. The best site right now seems to be the British National Health. I am not a dietician or medical person so I can only go by what I have found online and read elsewhere, but this gives a good start. I tend to favor the National Health Service as I don’t believe Big Pharma has any influence with them.

(This isn’t much help but is an example of the help I am finding now. The Mayo Clinic has good information)

https://www.whatispolymyalgia.com
Partially Hydrogenated Vegetable Oil like transfat and this can be found in fried foods and baked goods like cookies, pie crust, crackers, and pizza dough.

High Fat Meat and Dairy Products which triggers inflammation like bacon, lamb steak, dark meat, poultry skin, whole milk, skin milk, low fat milk, and heavy cream.
Low Fiber Starches worsens the symptoms of polymyalgia rheumatica as they stimulate inflammation. This can be found in white bread, low fiber cereals, and instant potatoes.

British National Health Service.

For Calcium: dairy products, such as milk and cheese, soybeans, okra, kale, spinach, sardines, salmon

Good sources of vitamin D include: cheese, fatty fish, such as mackerel or tuna, egg yolk, mushrooms, products fortified with vitamin D, such as certain cereals or bread (as long s they are gluten free)
Omega-3 fatty acids: fish oils, such as cod liver oil or salmon oil, mackerel, sardines, eggs, flaxseeds, flax milk, chia seeds, walnuts

Many foods have anti-inflammatory properties. Consuming these foods as part of a balanced diet may also help to reduce the symptoms of PMR.: tomatoes, fatty fish, berries, almonds, green leafy vegetables, olive oil

Foods linked to increased inflammation include: refined carbohydrates, such as white bread or white rice, fried foods, such as french fries, sugary drinks, processed meats, such as salami or hotdogs, red meat, margarine, foods with added sugar, alcohol,

Oils where heat is used to extract the oil, (and anything fermented like soy sauce, pickles, vinegar)
(Not listed are nightshade vegetables: Potatoes, tomatoes, egg plant, peppers, ground cherries, tomatillos, anything made with pork)
*Anything in ( ) are my words

My breakfast go-to is frozen spinach, cheese and scrambled egg. Thaw the spinach and mix in with the egg and add grated cheese to taste, cook as for scrambled egg- for me, I add a lot of cheese as I don't like spinach.

Simple chicken soup is a good standby. Chicken thigh meat, onion, mushroom, carrot, dried beans or frozen peas, chicken broth. Play with the recipe with simple spices like cinnamon or nutmeg for a richer flavour, and herbs like parsley, oregano. You can also add other ingredients from the lists above.

I have had PMR since Oct 2020, undiagnosed for 10 months, at which time I started on prednisone, 15 mg, and experienced complete relief within a day or two. (As well as all the pleasure of feeling like a 25 year-old rather than a very old 68 year-old.) Now down to 6mg but feeling slightly stiffer. I want off prednisone because I fear all the negative side-effects, but I also worry about triggering a relapse so reduce by .5 mg a month or less if I become too uncomfortable.
This week, I spent several days observing my grandson’s in hospital treatment for Kawasaki syndrome, a vasculitis autoimmune disorder (not sure of the proper medical term) probably triggered by a virus and treated with IVIG. What I am wondering is if PMR (much research indicates a viral trigger) is a type of vasculitis, why isn’t IVIG one of the first lines of treatment? Is there research on this? (I cannot find any). IVIG seems so much more benign than prednisone.
I am also curious about low-dose naltrexone, which my rheumatologist here in Newfoundland, Canada, will not discuss. I have seen some positive research and several PMR sufferers in the PMR Facebook group swear by it. Opinions on this?

It's not easy to come by low-dose naltrexone. I was lucky to have a trusting doctor who read the PubMed article I sent him. After a month on LDN, I am encouraged. The info is here: https://connect.mayoclinic.org/discussion/ldn-and-prednisone/.