Does PMR go away permanently?

@tweetypie13 and all... I met my deductible months ago!!! Sadly...

It takes 3 months to kick in? OK, so I need to stay steady as possible with Prednisone and Tramadol, If I can get it, until it helps... I will pray for the 3 months of help.She increased Prednisone until the Kevzara works, but didn't mention the 3 months wait...

I'm checking the website and my wonderful go-to for all questions on earth, Perplexity, as soon as I log off here. Will be interesting to see results of info and of Kevzara. I am really hopeful and more excited than have been recently for anything!

Thank, Tweety! Love your address name... Elizabeth

@ess77 it can take UP TO 3 months, not necessarily all 3 months……have faith, you are due for a little positives, maybe sooner.
Hint, take Kevzara pen out of refrigerator when you get up in the morning, takes an hour to warm up. Then inject after breakfast.
I used the abdomen around the belly button. Clean with alcohol swab , fan dry, then pinch skin before inserting/injecting. The pinch is for people who are sensitive. I just jab, hold pen down til I hear click and voila….done. 🤞🙏❤️‍🩹

@tweetypie13 and all... you are great! Just like using the insulin pens, or mounjara i use for diabetes leveling. Easy peasy! Im so used to little, and big, sticks. No issues there! No problem with site infection?

Have you had any side effects?
Infections?
That's my major concern since I had sepsis 4x last years with UTIs...
It feels so good to have hope for improvement!
Elizabeth

@ess77 no side effects until abt 10 months and the WBC and a few other numbers went off. Common. I tapered off all prednisone by 3 months. I started at abt 8 or 9. So at 10 months the dr chged my dosage from biweekly to every 3 weeks and the blood work returned to normal, along with no repercussions. As I said previously, I did and do not have any other health issues to interfere.

@ess77

The first dose of Kevzara is working but you may not feel the full effects of Kevzara for 3 months. It isn't like Kevzara has no effect for 3 months. Some people feel the difference in a couple of weeks.
https://rheumatology.org/patients/sarilumab-kevzara
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It is more accurate to say that it takes 3 months for Kevzara to reach a steady state. This might be Kevzara's maximum effect. In order to feel the full effects of Kevzara it takes approximately 3 months. In any case it doesn't work like Prednisone when you feel better in a few hours.

Just remember that you need to give Kevzara a chance to work. My rheumatologist said I needed to give any biologic at least 3 months to see if it will work or not. You may not be able to taper Prednisone any faster for 3 months. After 3 months, it should be easier to decrease your Prednisone dose.

I wish you luck. You should always stay hopeful that you won't experience a flare and you can taper off Prednisone. I hope and pray Kevzara will work for you. I'm excited for you. My first dose of a biologic was on January 1st. 2019. It was a New Year and a fresh start for me. Everything has been much better ever since.

@dadcue and all... You are a dear man! Thank you for your great insights and reaching out to help me understand this new treatment for me. I have few times these days with all the junk going on in this crazy body all the time, and new goodies popping up to surprise the docs and myself... Few times of real joy and honest hope, honest key... this is one of those times. I am having a very tough time this go round with PMR. This flare is a bugger. So, the fact she has a treatment possibility is exciting for me. You and Tweety are giving me good insights into what to expect, how to best handle the medication itself, and move forward with a good attitude.

I am no longer an expectation girl. That ended years ago. I have limited trust in the medical world, a lot of anticipation for better things to come, but not truly for my lifetime. I call it my acceptance phase of dealing with what is my reality.

It's a fine place to be. Just no while having a stupid PMR flare that makes my days lousy and painful and limited even more. Get behind me, PMR!!!!

Blessings to you all...Eliabeth

@ess77 love your attitude, and that’s 90% of the cure.
Just keep throwing everything at it and keep trying.
So glad to be on your team, and know we are always here for you.

Your thoughts are my exact thoughts

I also was under the misunderstanding that if I just "hang on" PMR will go away. I got down to 5 mg of prednisone aided by Tylenol and still had a lot of pain. One day I could hardly lift my coffee mug to my lips. I decided to try Kevara and have not looked back. I was able to get off prednisone quickly and now have no PMR pain. None. I give myself a shot twice a month. Easy peasy. I am on Blue Cross Medicare Advantage and had to pay a $2000 copay in January when I started on the Kevzara. Unfortunately I will have to pay that copay annually as long as I am on Kevzara. In a few more months I think the plan is to slowly lengthen the time between the shots to ascertain if the PMR has gone into remission or not. Good luck to all with this miserable disease.

@linnead ditto….YEA for you. Know your story

I'm very happy when I read stories that people are having good results with IL-6 inhibitors ... not just Kevzara.

Don't forget about Actemra. Now there are at least three biosimilars of Actemra that are being used to help people reduce their reliance on Prednison to treat PMR and GCA. I was getting tired of the narrative that prednisone was the "only option" and people needed to wait for PMR to "burn itself out."

That "burn itself out" phrase reminded me of the fire department showing up and saying the fire is too big and out of control so they let the house burn down.

It will make me happier when the cost comes down so more people will have access to IL-6 inhibitors. Prednisone is still a good bridge for fast pain relief but it is never a good long term solution. Prednisone causes too many side effects when it is used long term.

Even the UK is seeing the light! In 2019, I was told that my experience with refractory PMR being treated with Actemra wasn't pertinent and doctors in the USA were "breaking the rules."
https://thelimbic.com/rheumatology/eular-backs-biologics-for-refractory-gca-and-pmr/