I think I have PMR and I’m terrified

Hello @martyn, Welcome to Connect. It can be terrifying at first but the good news is that here on Connect you have a lot of folks that have experience with it and can be a great help to you for navigating what I like to call Mr. Ugly (PMR). There are alternative treatments but not sure I would want to manage it without steroids or an alternative medication. I've had 2 occurrences, six years apart and both treated with prednisone successfully but everyone is different when it comes to PMR, especially if you have multiple autoimmune conditions.

@dadcue posted a video in the following discussion that I found helpful if you want to learn more about the condition.
-- Comprehensive Overview Of PMR: https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/

I did have the weight gain side effects during my first PMR flareup taking prednisone but the second time around I was more aware of it and made a few lifestyle changes to help with that side effect - https://www.healthline.com/health/polymyalgia-rheumatica-diet. You mentioned a four day steroid test. Can you expand on that? What dosage of prednisone is used?

I was 52 when I was diagnosed with PMR. I had worse things that were wrong with me prior to being diagnosed with PMR. I have called PMR a "blessing" because I was able to legitimately take prednisone for PMR pain.

When I confessed to a doctor about all the prednisone I was taking leading up to being diagnosed with PMR --- I was immediately referred to a rheumatologist. I'm eternally grateful to the rheumatologists who have taken care of me for 20 years. I'm still alive at the age of 72 and I have been prednisone free for the last 5 years.

There are worse things than PMR that can happen. GCA is scary too. Don't be afraid of prednisone but sometimes prednisone can also be scary. My recommendation is to take prednisone for fast relief from the pain.

Don't expect to be pain free because of your back problem. I have severe spinal stenosis with a spinal fusion surgery still pending. I'm personally more afraid of back surgery than PMR.

I don't know how comforting this is but PMR will go into remission with enough prednisone. Then you need to figure out how to taper off prednisone. I have been there ... I did that ... it wasn't as bad as it may seem.

Hopefully your PMR will go into remission soon and you can taper off prednisone. There are mild and uncomplicated cases of PMR so hopefully that will be the experience you will have.

Martyn……we are all here for you. Read this daily nd ask ANYTHING you want. Search the blog on the smallest thing too.
I am a 80 yo female, pain free off prednisone for over a year. I am still on Kevzara biologic at 3 wk intervals. No other supplements. I don’t take meds, and resisted the biologic Kevzara as just another drug. The dr. neglected to explain that Kevzara would help me GET OFF Prednisone.

Things that helped me……
A daily journal of pain level, all meds, exercise and therapy, weather
Rheumatologist you can talk too, PCP too.
Get pain free as fast as you can, prednisone is your savior and don’t run away. Your body needs the relief. It’s a journey. There will come a time when you can taper.
Look into any kind of pt/therapy you can get. I was lucky and put into Aqua PT, (in a jet pool). I have shared the pool exercise with several others in my circle of friends.
I have a trainer who is a Functional Movement Specialist.
A support circle you can scream, yell cry and get just a hug from.

I am sad to say, welcome to this group, we are a great support.

It is a big shock finding out you have a strange disease you had never heard of before. I was 70 when I was diagnosed with GCA and PMR. Like you, I have always been very fit, mainly from running for almost 50 years. I have been receiving treatment for a little over 2 years, and I'm feeling great. I'm running better than I have for several years, and I'm still doing the weights and stretching routine that I've been doing for decades. I took prednisone for about 14 months, but I've been off of it for a year. I'm still taking an injection of Actemra every other week, but I don't have any symptoms of GCA or PMR, and also no side effects from medications.

I found that I could maintain a decent level of fitness during treatment, but I had to be careful to figure out what I could handle. I had a few minor injuries and setbacks, but no lasting problems. I also had to learn to manage my energy, because it takes a lot of rest to recover.

Because of the GCA, I had to take high doses of prednisone. I had a lot of side effects from the prednisone, but there were ways to minimize most of the side effects, and the side effects faded as I tapered.

Depending on your case, your doctor might recommend a biologic drug like Kevzara so that you can taper off of prednisone faster.

PMR is difficult, but things definitely improve with time. I'm really pleased now and surprised at how much I have recovered.

@johnbishop thank you John ..I just woke up in London, which is where I’m from, to an amazing bunch of replies to my post. Have to say it watered my eyes a little. It such a relief to hear from good caring people who have coped with PMR and have such positivity. I feel crazy like maybe I’ve overreacted but this all just feels so weird. The rheumatologist has prescribed me a dose of 20mg for the next five days so that he can then see if the symptoms improve drastically so that he can then conclude I have it . Strangely my blood tests were negative but he said 10% of PMR sufferers return negative blood tests. I will watch the link you provided. Thanks very much for your concern and support
😌
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@dadcue thank you so much for your reply and your support. The back problem I mentioned is now ok. That was 20 years ago and it left me with some nerve damage in my right calf but I’ve recovered to a full sporting life minus football (soccer .. I’m English) .. I think I’m as scared of the prednisone as much as the PMR as never been good with meds and rarely even take a paracetamol. I guess in my head I keep thinking ‘if I can hang in and wait this out I may tackle it without drugs’ but maybe that is fantasy land? Anyway, have a good day and thanks again

@tweetypie13 thank you so much for your kind words . It’s very much appreciated. Can you explain the biologic meds? Are they an alternative to steroids or something that you can move to later on?

@jeff97 thank you Jeff. Your account is very inspiring, especially your betting to running. I’ve been surrounded by sport all my life and have all sorts of plans for long cycling tours once I finish work. Weirdly even when I have the horrible morning pain I’ve got on my bike and ridden relatively pain free for 30 miles or so (although no climbing!) .. I’m determined to listen to good advice and beat this thing. I read also about GCA and hope that I avoid that. But even reading your reply under you also had GCA and overcame that too.. you are a great example. Thanks

@dadcue

Mike, you may want to investigate the "MILD" surgery for spinal stenosis. It can be life changing and without the serious recovery time of conventional back surgery. Mayo and Cleveland Clinic websites describe it. I found it remarkably helpful and was driving again within 24 hours.

Martyn,

You can make it. You will make it. Yes it's alarming to discover you have an auto immune condition you have never heard about it and yes it takes time to educate yourself about the condition but you will do all that and you will prevail. Glad you discovered this group so quickly--it will continue to make a difference to you.

Do ask about the new biologics, Kevzara in particular. Not sure about your coverage on National Health but if you can get on a biologic sooner not later you may be able to avoid the longish journey on and off steroids. Keep us posted on how you do.