Does anyone else feel isolated and misunderstood?

@cyndiefromnc
I definitely have not gained weight. May have lost a pound or two. My appetite is not optimal as the prednisone is causing excess stomach acid which is uncomfortable and nauseating. Starting on famotidine tonight along with the pantoprozole at lunch. Hoping it helps relieve my stomach issues.
Would love to feel “normal” again. I’m on 10 mg prednisone and have been on it for about 9 weeks. Staring kevzara this week.

@cyndiefromnc
Yes, I only lost a couple of pounds, but I'm very thin anyway. I am pretty sure I lost it because I have almost completely given up sugar, and it's hard to eat enough to make up for that, also Ensure really helps! I drink the max protein type, and it's loaded with micronutrients.

When I was first diagnosed last year, I spent most of the day crying. Everything I read about PMR was so negative. But then I just decided my job was to make sure I did everything possible to minimize those dreaded side effects. I stopped eating sugar almost completely, as well as anything containing white flour, white rice, and things with preservatives. This helps keep my blood sugar at a normal rate. I also greatly increased my protein and calcium intake, and started working with weights to minimize the possibility of osteoporosis. Also, since I am a devout Christian, I prayed that God would get me through this. As a result, I never got moon face (even though I started prednisone at 50 mg), never lost hair, didn't gain weight, or any other things that others seem to be bothered with. I am down to 6 mg per day and just had lab work that was pretty good, according to my doctor. Keep the faith, and believe the best will happen!

@centralflorida
I, too, was devastated with the diagnosis only because I saw what my mother went through with it. But I am trying to stay positive and hope that treatment today is better than what she had in the 80’s and 90’s. Then they only had prednisone.
Love your attitude and it gives me hope. Thank you.
I also try to eat properly and sugar doesn’t even appeal much to me either with my stomach being all disoriented with the meds.
My blood sugar has been 20 points lower than normal so it is concerning because my body isn’t responding appropriately to prednisone.
Of course I couldn’t get an appointment with the endocrinologist until December.

Yes I’ve lost weight but I think doing exercise is part of it. I feel as if I’d go mad if I don’t exercise because when it was really bad, I was doing nothing and it aged me so quickly. I’m convinced that I got it from taking the shingrex vaccine - the first shot and now I’m confused as to if I should take any other vaccines, I wouldn’t mind taking the flu vaccine, but I really feel that my immune system went completely haywire with that first shot. I’m not an anti-VAXer but I just know that my body had this response and it’s been a nightmare as you all know. I’ve also had pretty bad hair loss and I had a lot of hair so it’s pretty obvious. I guess it’s the medicine either that or Covid which I also got a few months after the PMR. People don’t really have any interest in trying to discuss or remember what you’re going through. I think we have to accept that most are somewhat oblivious with what is going on with us. It’s just not important to them because they don’t know what it is or how painful it is - what is important is for us to try to feel better and cope and ultimately recover.

Every body is different! I didn’t have a rapid onset. My rheumatologist diagnosed PMR after an MRI of my painful hand showed no arthritis. I had total pain relief with the first dose of 20mg prednisone, a set back at 12mg, and I’m currently at 9mg tapering down 1mg/month with my rheumatologist pressing for
Kevzara. I’m 69. I have weight gain, hair loss, gait changes, fatigue, skin issues, moonface, and my depression has resurfaced. Some things I do that help are riding a recumbent stationary bike 5 miles/day, cutting way back on sugar, morning meditation, seated tai chi, and I don’t assume I can do what I’d like to each day. I aim to have the best day possible. Some days are better than others for sure. Isolation is a beast. I find that even going for a short drive helps, or having a friend visit. If you have any advice about starting Kevzara, I’d love to hear it.

@kathleenclaire
I resisted taking Kevzara until I finally learned from my Dr that “it would help me get off prednisone “
(A major point that was never explained)
AND IT DID.
Look into it

I am 64 and was diagnosed with PMR in August having been miss diagnosed with frozen shoulder for 6 weeks. Was put on Pred 25mg tapering down to 15mg over 6 weeks but was still in lots of pain . When l saw the Rhuem was told bloods showed inflammation still high so was put on 40mg which worked same day no pain now down to 20mg. and still tapering. Your dose may be to low recheck in with them.

@tweetypie13

My rheumatologist described Actemra in the same way. No guarantee was ever made but it was said that Actemra represented my "best chance" of ever getting off prednisone. That comment was made when I fully expected to need prednisone for the rest of my life.

When someone strongly discouraged me from trying Actemra, I almost refused. My rheumatologist noticed my reluctance. His response was that I wouldn't know whether Actemra would work unless I tried it to see.

I was still a skeptic and fully expected that I would fail once again to taper off prednisone. I purposely tapered from 7 mg to 3 mg at a rate of 1 mg per week. I wanted to get "inevitable flare" over with

I had some issues when I reached 3 mg but my issues were mostly from a low cortisol level and not a PMR flare. Now I have been prednisone free for more than 5 years.

I'm still doing a monthly infusion of Actemra. If I need Actemra for the rest of my life my rheumatologist thinks that Actemra has fewer side effects than Prednisone.

Having pmr right now is not what is depressing me. I've had it for 7 years. Am now at 2.5 mg. It's all the other conditions on top of pmr. Vestibular migraine/ Meniere's
is awful. Episodes of vertigo and nausea. Hearing loss, deaf in left ear, hearing aids not the best solution. Macular dystrophy causing vision problems. Every day I just try to do the best I can and stay positive. One day at a time. Things could be worse.