Pmr and no drugs

Hello Teresag1. Sorry to hear you have PMR too.
If your pain isn't bad and is manageable so far you're lucky. I hope it stays that way for you. My pain has been severe for almost 5 months since it started in Mid March. I didn't know what it was, thought it was my rotator cuff injury on one side and that I'd torn the other side too. I'm still too new to PMR to know re other meds or options. If it's manageable right now, but has potential to worsen, I'd start researching online for all possible treatments you can take with glaucoma. I hope you can find something that'll help you when/if you need it. Everyone's experience seems to be different. Mine is pain that's so severe it wakes me up in bed and I have to get upright and go sit on couch to try to sleep anymore. The pain is still there sitting up, but it doesn't keep getting worse like it does when I'm lying down. I do have a lot of musculoskeletal problems from my spine and years of chronic pain, so that may have some impact on how the pain levels are for me, I don't know. It has been brutal pain that is incessant from the time it starts during the night/early am, and continues into the morning at least 4-5 hours from time I get up. I've hardly had sleep since Mid-March. Just got diagnosed 7/31 and started 15mg Prednisone which has helped some, but had to up it to 20mg a few days ago because it's still not complete relief. This support group has a lot of people with different experiences and I hope someone here has some ideas for you. I pray you never get the severe pain, stiffness or any other PMR symptoms that so disable us. I pray you find a medication that works with glaucoma. Blessings.

I'd try a good dose of fish oil or flaxseed oil every day. It's anti-inflammatory and good for your eyes too

I have had a good experience with Kevzara. Note : it takes “up to” 3 months to kick in.
The Kevzara website is good, lists side effects etc.
There’s another drug, I Am unfamiliar with….. Actemra (spelling?) and I’ve seen it mentioned on this blog.

I am a fan of Tylenol FOR ARTHRITIS has been good help…..take at bedtime and follow bottle

I resisted prednisone for a couple of years. My Rheumy would give me joint injections for local pain relief. I finally started prednisone and have been on a real journey ever since.
You mentioned you are afraid of Kevzara. Have you done any research to try to resolve your fear?
Knowledge and facts normally resolve my fears. I would suggest you try and understand the drug, what it does as well as understand the common and even rare side effects. Every drug comes with risks. Many times it is the compounding ingredients and not the drug itself.
You can also talk with your rheumatologist about pre-biologic treatments with older drugs.
You also need to understand PMR and the inflammation cycle that these drugs work to interrupt.

I was diagnosed with PMR in March. I was prescribed Prednisone which I started, but tapered off after about two months after research and some side effects. My rheumatologist prescribed Methotrexate (weekly eight tablet dose) and folate (daily). Although I experience some pain and stiffness, it is manageable.

Since the medication can be tough on the kidneys, frequent blood test are necessary (monthly).

In addition to medication, I go for Accupuncture and medical massages. Not sure if they are helping, but they aren’t hurting.

I agree that research and diet are key factors in managing PMR. I wish you all the best.

@jabrown0407
Thank you for all the good advice! Right now I don’t know what I’m going to do. I’m 80 with severe glaucoma. My biggest fear is going blind. Iv always been afraid of all drugs. My pain is bearable now. But I know I will probably have to take something.!
Thanks again.

I have been on Kevzara since last November and have to say that I appreciated getting off prednisone within 6 months as it caused severe digestive issues for me. I am just getting over the devastating effects of the acid reducers and ant acids that caused secondary problems from overuse. I had no idea that I was doing damage all the while I was on them, and wondering why I wasn’t feeling better or getting relief.
As long as you make sure you are cleared of any gut side effects of kevzara you should be fine. That is most serious consideration.
Best wishes in your journey.

@n1234
Thank you for the good wishes!!! Same to you!!
I will ask my doctor about methotrexate.
My pain is only bad in the morning and it tapers off. I’m just taking Tylenol arthritis now. Helps some.
This is a horrible thing I would not wish on my worst enemy.
Good luck on your journey.

I was diagnosed with PMR in March and SMM in May. I have been doing a fast taper off prednisone because of the SMM and using 3mg LDN as a bridge to kevzara, which I started 3 weeks ago. I'm only on 4.5mg prednisone now. My sister had PMR a few years ago and because of her fear of prednisone she would only take ibuprofen. It did very little for her but she stubbornly refused to take anything else. It took over a year for her pain to go away.

@boomermeg where is your pain? I would absolutely go talk to your doctor about upping the dose even more. I started out with 60 mg, which knocked out the pain let me tell you. The PMR pain is mostly in between my shoulder blades. But when it reaches the buttocks, and I have trouble sleeping, eating or resting upright, then it’s a problem. I’ve been back and forth on what to take and what to do for fear of side effects. It seems to come on seasonally too. Right now being quite high in the discomfort zone. Mineral epsom salt baths really help. I hope you find relief! Tell your dr about your pain levels!