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Feeling defeated
I guess I'm posting in an effort to reach out seeking some hope and optimism, because PMR is really getting me down. I'm only two months post diagnosis, (although I've had unexplained pain for a couple of years). I was started on 65mg of prednisone, which obliterated the pain, but I believe gave me a false sense of security. I have now tapered down to 20, which is not controlling the pain and I find myself pretty much debilitated. I am waiting for a referral appointment with a rheumatologist, and hope I can find some answers. I NEED to get better! Please forgive me for sounding like I'm complaining, but I absolutely need my mobility back. I also need a place to vent to those who are not directly involved in m life. My husband and I are caregivers for our grandson, who has autism. I am grieving for my father, who recently passed, and am responsible for his estate. I am also responsible for and have enduring power of attorney for my brother in law who has dementia. I have retained so much weight from the prednisone, I feel like a walking waterbed.
Add to that, some serious concerns about my husband's health, little things like breaking the glass on my stove top, my puppy chewing my glasses, and a flat tire are nothing. I also hold an elected office, with the election coming up this fall, I need to assess whether I will be able to fulfill my responsibilities should I be the successful candidate. So much on my shoulders, no wonder they hurt. Thanks for listening. I'd love to hear your success stories, and that there's life after PMR. I truly am feeling defeated, and need some hope right about now.
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I can relate to your feelings of defeat. Fatigue, brain fog and pain from pmr added to prednisone ‘s brutal side effects (which include depression) are brutal. I am 3 months post diagnosis but it feels like a lifetime. I was able to taper from 20 mg to 10 mg of prednisone but relapsed. Fortunately, after the relapse, my rheumatologist prescribed Kevzara and, after 2 weeks on the drug, my energy has returned (I am even taking exercise classes again!) and I am tapering the prednisone 1 mg per week. And, more important perhaps, the drug has helped me see the light at the end of the tunnel. Hang in there and keep pushing to see a rheumatologist as soon as possible, even if it means traveling to another city.
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1 Reactionwow -thanks so much for sharing that ! I think someone else mentioned the distinction between Medicare coverage for infusion vs injection - go figure! And in another conversation someone mentioned that their manufacturer co-pays ended* -so Kezvara ended up being costly.
for the year 2024 I upped my Part D coverage to tier 5 in case I would need to go on a biological , now in 2025 my Part D plan has gone up 4-fold ! Good luck @ropnrose !
*see this conversation : https://connect.mayoclinic.org/comment/1203356/
I like doing a monthly infusion of Actemra compared to doing the injections. From start to finish an infusion takes about 2 hours and then I'm good to go for another month. Sometimes I go 5-6 weeks between infusions but 7 weeks gets to be too long. My inflammation markers start increasing again after 6 weeks.
Actemra is off patent so there are already biosimilars that cost less.
https://www.pharmacytimes.com/view/fda-approves-tocilizumab-aazg-as-biosimilar-to-actemra-for-multiple-indications
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1 ReactionThis is good to know about the Actemra biosimilar. I just injected my last dose of the Kevzara (can't afford $16,000 a year since I was kicked off the patient assistance program with the drug company). At my last MD visit he agreed that I should try going off the Kevzara and see what happens. It did take away my PMR symptoms, but they returned when I dropped below 5 mg prednisone. If symptoms come back he said he "might" be able to get me on Actemra. For anyone wondering what a drug will cost, and they are on Medicare Part D, go to "Medicare.gov", then "health and drug plans", then "find and compare". It wouldn't have helped me to go on a higher tier in my plan since no plan offered in my county will cover Kevzara.
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1 ReactionMy doctor is starting me with every 4 weeks for my infusion. How long have you been taking the infusions? Are you still taking prednisone?
HI @dadcue =- I was wondering why Dr Sattui mentioned that costs should go down with the generic anti-IL6R biologicals !! Has there ever been a TV commercial I wonder ? so many drugs advertised during football playoffs !
I have never seen any commercials for Actemra or Kevzara. I don’t really care if they promote their medication. I think it is great when they highlight all the different autoimmune conditions that are treatable. At least I know those conditions are on someone’s radar and research is being done.
I started with Actemra injections at first. I got off prednisone temporarily a year later.
I had a flare of another autoimmune condition within weeks of stopping prednisone while still doing Actemra injections.. A different biological (Humira) was started to treat this other autoimmune condition along with 60 mg of prednisone. I was unable to taper off prednisone again while on Humira because PMR symptoms returned.
I was given a choice between Actemra or Humira but not both. It was my choice to restart Actemra. Eventually Actemra infusions were tried and all my autoimmune conditions have been well controlled. I have been off prednisone as long as I do a monthly Actemra infusion. No prednisone and no flares of anything for almost 4 years.
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1 ReactionBe careful below 5 mg of prednisone. I had problems when I got below 5 mg. It felt like PMR was returning until a cortisol level was checked. Most of my problems with lower doses of prednisone were likely caused by adrenal insufficiency although part of it could have been PMR.
I am aware of that and it could be adrenal insufficiency but I can't get my cortisol checked until I get the prednisone lower. There was no way I could go lower. The pain was too intense and I have a high pain tolerance. I tried it for 9 days it continued to ramp up. If I keep needing a biologic I will use that to try to get lower. If not I will keep trying to go lower with other strategies. Your personal experience with Actemra does not translate to everyone. Plus women have a more complex immune system due to having 2 x chromosomes and the x has the genes for the immune system.