Starting another journey in my healthcare.

[Gatorchief]

14 years ago i had a congenital heart defect corrected with aortic valve replacement. I opted for a mechanical valve replacement that required anti-coagulation therapy for life vs another surgery 10-15 yrs down the line. I've done well with the management of the anti-coagulation therapy and all was going good in my life. Now, and quite suddenly my life is upside down again with a diagnosis of PMR. I'm reading, searching online , and asking every question i can think of to get a grasp on the journey I now have ahead of me. please forgive me in advance if I ask what seems to be elementary questions. so far there seems to be very few options when it comes to dealing with this condition. Hopefully, if I can manage to hang on long enough for advancements in medicine and treatments. Surgeons now perform the open heart surgery I had by catheter! My immediate goal is to tapper off the prednisone as soon as possible, and look into the Tocilizumab as an alternative. Thank you.

[PMRpro Ambassador]

Hi and welcome. I'm assuming you are in the USA so I suppose tocilizumab (TCZ) may be an option even though it is not approved for PMR. However, Kevzara is the newest kid on the bloock and approved by the FDA specifically for PMR. However, they aren't always 100% successful in getting you off pred since biologics are very selective and only deal with one cause of the inflammation that causes the symptoms - and there are probably at least 3. If your PMR involves the other 2 which don't create the inflammation via the IL-6 cytokine, you will need some pred. I know, I still need 7mg pred despite TCZ.

If you want lots of info about PMR and living with it, go to the FAQs and read there. We collected together a lot of posts dealing with the problems - all based on science and personal experience, no woo, no wacky ideas.

It is unlikely you will find significant advancements in the world of PMR in the next few years, it isn't Covid with unlimited resources. and in the current situation - you may intend to taper of pred asap but the PMR is likely to have other ideas. Even if you DO start TCZ it takes some time to work enough to just ditch the pred - you'll have pred in your life for a while yet.

The 1-3 day response does happen - I had a miracle in 6 hours with 15mg - and there are a few others for whom it was the same. But it isn't the rule and sometimes it takes longer. Much of the online info is of a simple, benign, self-limiting disorder. The reality is different and there are several versions of PMR and GCA which are at different points on a spectrum. It remains to see where you lie on it. There are at least doctors who are aware of this now - but they are few and far between.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Have a look this -written from a patient’s point of view [mine]..

healthunlocked.com/pmrgcauk...

As PMRpro has said, don’t hold your breath over a new super duper treatment any time soon. Pred, although not the most pleasant of drugs, has served many very well to date, and I don’t imagine that will change much in the near future.

[Grammy80]

I wanted to add my welcome and let you know you are in the right place. I was diagnosed with GCA in 2019, and this forum blanketed me in knowledge and support. I never felt alone and found so much information here from the folks who are experiencing it. There were many times when I shared the info with my rheumatologist, and he acknowledged the value.

I wanted to add that getting off pred too fast is not the prize; quality of life is, in my humble opinion. Sometimes, if your journey downward is not slow enough, you will have an unnecessary flare-up. I wish you the best.

Just sharing that 15mg 'isn't cutting it' and getting feedback is such a help. I'm so glad you are here...for you and for us!!💞

[Paulagcl in reply to Grammy80]

Ditto with what others have said. I am on Kevzara and knock on wood, doing well with it. Tapered off prednisone about three months ago now.

[Grammy80 in reply to Paulagcl]

That is great~! I have a GCA friend in Maine who is on just Actemra. It was weekly, then every two weeks. When her PMR pain increases, she will go back to weekly for a bit. She is 88 and very upset that her car is in the shop~!!! You go💞

[Paulagcl]

"Car is in the shop! '' I love that one!