NEW to PMR diagnosis

Sorry you've joined the club.

Prednisone is the magic elixir for me - unfortunately. I've been taking it for 3 months and am pain free. I still have a few aches, but no real pain.

I have begun tapering, my goal is to be off of it as soon as safely possible.

The BEAST - PMR - is a cruel disease and not easily navigated. This group has been very helpful.

I haven't felt the need for alternate medication as long as Prednisone is keeping the pain at bay.

Good luck!

Hello @deborah57, I would like to add my welcome to Connect along with @nancy53 and others. You have asked some really good questions and there are many members with experience here on Connect. I'm 80 and had my first bout with PMR back in 2007. I started at 20 mg prednisone and it was my magic pill to get me pretty much pain free. I was able to taper off of prednisone in 3 and half years later in 2010. I stayed in remission for 6 years and PMR raised it's ugly head again in late 2016 and I was back on 20 mg prednisone. This time I was able to taper off of prednisone in 1 and half years in 2018 which I attribute to making some lifestyle changes from my last bout with PMR - eating healthier, a lot less sugar and eliminating processed foods and fast foods along with more exercise. It sounds like you already have the eating healthy and exercise in your daily routine and that is a plus for us folks with PMR.

One thing I would suggest is to keep a daily log with your level of pain (1 to 10) when you wake up and your dose of prednisone for that day. This was recommended by my Mayo rheumatologist and helped immensely when I was tapering. If my pain level was higher than 2, I delayed my taper and sometimes went up 1/2 of my previous taper down to see if that changed my level of pain. If my level of pain was less than 2 I normally tapered to see how I felt the next day.

There are a lot of discussions that you might find helpful to answer your questions on other treatments. Here are a few search results links you might want to browse through.
--- Methylprednisolone - https://connect.mayoclinic.org/search/discussions/?search=methylprednisolone
--- KevZara - https://connect.mayoclinic.org/search/?search=KevZara

Have you done any research on lifestyle changes that can help PMR?

PMR has been a real pain to manage for me. I started at 20 mg pred. about 5 years ago. I have tried 4 times to taper and got down to 1 mg per day each time. I had 3 surgeries (orthopedic) during this period and each time I relapsed. My Mayo rheumatologist finally convinced me to try methotrexate in addition to the pred. and I think it has really helped. He also pointed out that I had a history of gout, was chronically under-hydrated, and this was leading to high uric acid levels. So allopurinol was added. And I greatly increased my fluid intake. I am now down to .5 mg of prednisone and hopeful that I can get off entirely in the next month.

I recommend trying to catch a relapse early. If I wake up and feel that extra joint pain with no other explanation (such as a trying a new exercise) I "bump" my prednisone dosage up to 5 mg and then reduce it 1 mg each day until I am back to my base dosage and see if that resolves the issue. So far, it has worked. I checked this idea with my Mayo provider and he said that it was OK.

I have not tried injections. I am 75 years old. I eat healthy and I have worked out 5 days a week since I was 30 years old. Good luck to you.

Welcome! Glad to meet you, though so sorry you're now joining the PMR club as well...

It's tough; any autoimmune condition is challenging. I'm a caregiver for my father who was diagnosed with PMR in May 2022. Similar to many here, he had a very bumpy ride. His starting dose was 20 mg prednisone, after two weeks he had a stroke that may or may not have been related to undiagnosed GCA (Giant Cell Arteritis--so my family is now a walking billboard for how seriously to take a PMR diagnosis). During his time in the regular hospital and rehab hospital, he experienced two flares with his ESR going up over 80, so his prednisone dose was increased to 30 mg, and that got it under control.

I can't remember exactly, but I believe he started tapering by the beginning of August, and now he's down to 6 mg. One thing to know about the tapering process is that it's different for everyone, it's definitely not fast (at least I've yet to meet someone here who described the process as "fast"), and it's a path of peaks and valleys, meaning you can keep lowering and lowering and lowering your dose, but sometimes you may have a flare or a serious life event or stressor that causes you to either have to pause the taper or increase the dose for a while to get the symptoms under control. It sounds corny, but we've found we really do need to listen to our bodies. As my dad's rheumatologist said: "We need to follow what his body wants to do."

You asked "When and why would you want to taper?" Prednisone isn't something you'd want to take forever because of the side effects, but you also can't stop a steroid cold turkey because you would have discontinuation symptoms, rebound pain, the inflammation from the PMR could come back, and if you've been on it for a long time you could have adrenal problems. Usually, you would decide with your doctor/rheumatologist about when to taper--ideally when your symptoms and inflammatory markers (if applicable) are stable, which could be in a few months, maybe less, but it depends on the person, unless the steroid is not working or intolerable.

As far as I know, prednisone is the first-line treatment, though there are other medications like those you mentioned... But usually the other options would be turned to for those who can't tolerate or don't respond to prednisone. Or it comes up to assist people with transitioning off the prednisone.

It is really intimidating, especially all the risks and side effects, and we're so conditioned to think "steroids = short term-use" and "steroids = bad!" that it sounds crazy to propose these relatively high doses and for long-term use. But I always try to remember that PMR also isn't without its own long-term risks if it goes unchecked.

If it helps at all, my father is also extremely sensitive to medication. (This is to the point that if he takes half a tablet of Tylenol, it makes him groggy for up to 2 days!) After adjusting to the prednisone and figuring out the best time for him to take it, and best way to dose it, he's done okay. He is taking Fosomax to help prevent potential bone loss and his care team is monitoring his blood sugar, but it's still in normal range.

This group is a wonderful resource and is a great support, I think I can speak for everyone here that you can always feel free to come back here if you ever need to vent or have questions!

Prednisone therapy is often needed for months with a gradual wean.
It can be well managed and you can educate yourself to avoid most side effects.
I had a baseline eye exam. I also requested a Dexascan at the start.
You can buy an automatic home blood pressure monitor and inexpensive
glucose meter if you have risk factors in your history. A1c can be part of
metabolic and lipid checks.
You have the option of trying an anti inflammatory eating plan which may also lessen the chance of weight gain. Keep moving as tolerated since
exercising helps in most situations.
I made it a point to take calcium based antacids and vitamin D3.
Have your cardiovascular risk’s assessment with your internist.
I was not aware of mine until I had recovered. My biggest side effect
after all was the thinning of the skin and bruising. Use your SPF screen and
moisturize. Good luck with eventual weaning and stay in charge of your
care.

Here is what I wished I had known before I started Prednisone for PMR. These points come from my Neurologist.
- The downside of Prednisone is that it can weaken the bone density especially in your hips. This is if you take it long term at 20 mgs like for 4 months. Then the Doctor has to put you on Alendronate to keep you from breaking bones in falls.
- 2 mgs of Prednisone does NOT harm your bones, so that is what I am on now.
-Good to take calcium to help build bones.
-Good luck with this and keep searching for answers.
This site is wonderful.

Sorry to hear about your diagnosis! I was also scared of going on prednisone when I was diagnosed with PMR last summer (I am 62), but like others have said, it's a godsend at dramatically reducing the pain and stiffness. I was put on 15 mg and it has taken me seven months to taper down to 12 mg. My two previous taper attempts were done too quickly, and resulted in relapses. I am now tapering by 1 mg per month. I don't like the thought of what the pred is doing to my body, but it seems there is no other choice for me. As others have mentioned, there are ways to help mitigate the side effects of pred. Here's what I have found works for me:

1. Diet -- I cut sugar, red meat, processed foods, and am working at reducing my salt intake, to hopefully help prevent the risk of high blood pressure and diabetes. I found that cutting sugar has also made a difference to my inflammation levels, which makes sense since sugar is one of the most highly inflammatory foods. I also take supplements: AOR Bone Basics, vitamin D, Omega-3 fatty acids, and MSM. Because I already have osteoporosis, I also eat a lot of calcium-rich foods (cheese, yogurt, broccoli, almond milk, etc.), and take a bisphosphonate medication.
2. I exercise every day -- walking, gardening, hill climbing, and/or Tai chi.
3. I make sure I get enough sleep. Because I am semi-retired, I have the ability to sleep all morning if I feel like it, which is most of the time. Then again, I am an extreme night owl, which means I'm usually awake until 3 or 4 in the morning anyhow. But getting 8-9 hours of sleep at night is imperative for me.
4. Minimize stress - this isn't easy in today's world, but stress has a huge impact on pain levels for me so I do whatever I can to keep my stress levels low, which includes turning off the news.

Good luck with your PMR journey. I hope you find this forum as helpful as I have!

Finding you have a chronic autoimmune disease is the worst. I am 12 years into a diagnosis of Rheumatoid Arthritis. I’ve had to take prednisone a couple of times for flares. I was started at 20mg and tapered down and off over 16 days. But my question is .. Is 2mg therapeutic?

Deborah57- I’m new to this “condition” too, going on 2 months. PMR hit me overnite, I had no idea what it was. I was diagnosed in 2 days, I had never heard of PMR before and had an old Prednisone dose pack laying around so I started it with 7 tablets. Felt great until I-got Dow to 5 mg, but then I saw my rheumatologist who started me on 10 mg. That didn’t work, jumped to 15 and was holding my own. Now down to 12.5 with some pain. I read up on PMR and thought sure, 1 to 2 years on Prednisone and it’s over. No Problem!
What a shock when I got on this forum and saw that some people have been taking meds for 9, 10, even 15 years!I haven’t tried anything else, yet. I’m concerned that many people seem to be changing dosage without direction from a rheumatologist. The first thing my doc did was schedule monthly appointments for the next 12 months. And I have a contact at his office to call with any questions or changes of my condition. I’m early in this situation but time will tell. It’s scary, depressing and can be all consuming with the pain. Each day is different and I’m told I’ll never be totally pain free.
I just lost my primary care doc and as suggested by my rheumatologist, I’m getting a concierge doc. There’s so many side effects to this condition and the prednisone you need to stay on top of it. Next week will be my2 month anniversary, I’ll be 76 in May.
Stay positive and good luck!

thank all of you so much for your welcoming replies....I'm bit overwhelmed atm so I probably won't respond to everyone, but I am reading your replies and feel so grateful for them.

One thing I have not read anything about so far is whether or not people have experienced any personality changes from the prednisone. I was recently on (discontinued now) some other medication (for something unrelated and totally different, not auto-immune) and that medication changed my personality: I was anxious, irritable, gained weight, and had fatigue and muscle weakness. After a year of that I said no more. In only two weeks after discontinuing I felt like myself again. I changed my diet instead, stopped alcohol, and brought the condition into better control without the medication

I am terrified Predinose will take away the pain but change my sense of self and how I am in the world. Or create worse physical problems. Everyone seems to hate being on it. I really, really like myself. I don't want a medication to take that away.

Thank you again for so much kindness.