PMR - What do you wish you had known . . .

@wendybfrompgbc ask your dr abt biologics….Kevzara got me off prednisone and I have no side effects from kevzara 🙏

@wendybfrompgbc I hit 6 years this Spring and I'm not seeing an end. I went to a major teaching hospital out of state and they Dx GCA. I am totally asymptomatic.
You might want to talk with your doctor about PMR taking so long to blow over. PMR is suppose to burn out in less than 5 years. They did a PET scan to find my GCA since I had no temporal symptoms.

@tweetypie13

IL-6 inhibitors do offer a ray of hope for people who have used prednisone for a long time to treat PMR and GCA. Actemra (tocilizumab) allowed me to taper off after 12 years of prednisone. I have to admit that 12 years of prednisone with all of my PMR relapses while taking prednisone were making me depressed. It wasn't very helpful when I was told that prednisone was the best and only option for PMR and that it was okay for me to take prednisone for the rest of my life. My rheumatologist believed otherwise.

I have now been on Actemra for 7 years and I feel much better without any relapses and all of the agonizing pain every time I relapsed. I still have some "tolerable" pain but I don't expect to have no pain. My side effects from Actemra are minimal if any. I have osteoarthritis so that explains much of my lingering pain.

@dadcue
I've had difficulty parsing my symptoms by condition after stopping 10 months of prednisone overlapping with Kevzara. Now on rheumatologist prescribed Kevzara weekly. For the past week I've been in a flare. My right hip is shot and I didn't know how bad the osteoarthritis was until I stopped prednisone on March 1st. Now I'm having it replaced in 2 weeks. I'm concerned that surgery will cause another flare or just worsen this one. I avoid oral NSAIDS; instead I use a generic Voltaren gel on my hip. I'll be 80 in 2 months. And that has reduced my belief in my strength to manage surgery and PMR at the same time. I also have heterozygous hyperlipidemia controlled by Repatha, but have a high calcium score (> 1 K) in both L and R coronary arteries. My cardiologist will (or might not) clear me for surgery this Wednesday after an echocardiogram.
I hope I don't seem disorganized in my thinking, but it is a lot! I can't ask for any response, but has anyone had surgery with PMR?

@mlz I am a male. 69 years old when I had laparoscopic surgery to repair hernias. I did have any other issues at time of surgery other than PMR so my experience may be different than yours but I did want to reach out. As you may already know, part of the pre-surgery protocol will be to give you a “booster” to raise the prednisone dosage that day to help with level. I learned that due to my fear of not taking any day of surgery and what may happen with PMR. My rheumatologist and my doctor both assured me that a flare up because of surgery was not a given and that it probably wouldn’t happen. It didn’t but that still did not alleviate all my concerns, as I assume this won’t for you, But I would like to give you even a slight bit of peace of mind that at least someone had surgery (surely less invasive than a hip replacement) and did not have a flare-up. God Bless and good luck.

@mlz

Hi .... you don't seem disorganized at all. You are right to be concerned about having surgery when on Prednisone and Kevzara. I had both of my knees replaced during my peak days of taking Prednisone for PMR. There were some surgical precautions taken but Prednisone and PMR didn't prevent surgery.

After surgery I had post-op pain but that didn't make PMR worse. A few months later after I fully recovered from surgery, I was able to decrease my Prednisone dose somewhat. I was confusing some of the arthritic knee pain for PMR. My knee replacements made my knee pain better so I didn't need as much Prednisone.

I'm currently 71 years old. The older I get ... the more concerned I am about doing more surgery. I listen to my medical doctors and the surgeon. The best advice that I ever received was to "let pain be the deciding factor." There is such a thing as "too much pain" when I need to do whatever I can to relieve the pain. Surgery would not be my first choice but I would do surgery if the pain was too much.

@boo3
Thanks. That helps a lot. I will talk to a teaching team preop this Thursday. My cardiologist conference tomorrow will be the deciding factor.

@dadcue
Thanks very much. You sure have had a great deal of experience of every sort it seems. So the advice you give is welcome. In addition to pain, or probably because of it, I'm very limited in being active. Yesterday, I went out for two appointments (nice ones for self care) and I'm wiped out today. I have been athletic my whole life and most recently did long walks and weight training. But that was more than a few years ago. Between now and then I've been my husband's support and caretaker. While he got better I got worse! Love is about caring for others which is easy for me.
I'll write back at each step. Many thanks!

@mlz I had a robotic hysterectomy 2 years into my PMR diagnosis. I actually had recently started prednisone, I mean like 2 weeks into it since my symptoms were returning. They recommended I stop the prednisone, which I was able to do since I had 30 days to stop before the surgery and at two weeks the adrenals are just going to sleep. Looking back I'm not sure it was the right choice for my pain management, but it was the right choice to simplify surgical healing.
I was fortunate that all the biopsies were negative and the only scary things they found were considered "pre-cancerous". Since the surgery was robotic I had 5 one-inch incisions that healed quickly with no complications. I was allowed to restart the prednisone 2 weeks after surgery.
Take care of yourself and try to let others do the worry part. Please keep us posted.

I wish I had known so many things, and I am only 3 months in to this 'journey'! I wish I had know more specifically about some of the immediate potential side effects of prednisone. When I began having increasingly blurry vision I was very alarmed until talking with an ophthalmologist friend who immediately said "Likely cataracts" which it turned out to be, not the brain tumor i first panicked about! The intensity of the prednisone induced insomnia was a bit of a shocker (wide awake at 3 am for the night often).

I wish i could have known somehow the intensity of the fatigue above and beyond the insomnia.

I am glad I knew that it is good and wonderful to continue to be as active as possible. Continuing to play pickleball several times a week, my beautiful early morning two mile daily dog walks, and adding weight lifting and yoga to that has been great physically and emotionally. Having ongoing PT to guide my physical activities and weight lifting has been also really useful. I feel myself getting stronger even now.