A month into my diagnosis with PMR

Hello @edinnola, Welcome to Connect. I'm really sorry to hear that you've joined the PMR club. It is definitely the pits, especially if it's your first time around and you don't know what to expect. There are a couple of discussions you might find helpful.

--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
--- Tapering off of Prednisone: https://connect.mayoclinic.org/discussion/prednisone/.

Although I never split my dose of prednisone into morning and afternoon/evening, some members have found that helpful when having issues waking with pain. I started on 20 mg for both occurrences of my PMR and it pretty much kept me pain free until the next morning. My rheumatologist also had me keep a daily log of my level of pain when I got up in the morning and my dose of prednisone for the day. He told me to listen to my body when taper to the next lower level and only taper down if I was comfortable with the level of pain in the morning which was a 1 or 2 for me. One thing I found out is that while my PMR was active I had to be careful with my daily activities. Doing too much, made my pain much worse the next morning.

Do you keep a daily log?

No, I have started a log yet. I'm still kind of in shock I have this. I'll definitely check the articles out.
Thank you for your time and response.

Regards

Hi Ed. Diagnosed about a month ago. I am struggling to find answers and understand all this myself, haha. I am retired and 64 years old retired in Massachusetts. I was working part time but looks like I will have to give that up. I am having trouble sleeping and dealing with the pain in the mornings. I also have low energy and my motivation is a little low too. I was on prednisone for 2 months before being diagnosed while the docs tried to figure out what I had. Have a Rheumatologist now for just over a month or so and we are working to get me figured out. I was on 20mg last month but I didn't do well with the higher dose. Tapered down to 2.5 and stayed there for awhile but now at 5mg.
I am planning to do a log as well. On my list of things to do!
All I can really offer you is my best wishes. I plan to spend a lot of time here on the boards so hopefully we will both learn a lot!

take care!

Hi (Ed?)

I just joined this group- the online group, that is. I joined the PMR group IRL 3+ years ago.

Sorry you are suffering so much, but thank the goddess for your friend who diagnosed you!

I take all my pred in the am and have not had sleeping problems. Maybe that will help you, as Bob suggested?

It *is* crazy. My reaction was fear when it hit me how serious it was (see my other long-winded posts, if you're home, bored and patient).

Lucky for me, pred made me hungry, yes (my doc said, "It's gonna make you want to eat everything in sight," and I secretly thought, "That sounds like fun!" and proceeded -- I actually consciously *decided* -- to do just that. 15 pounds later, I've decided it's OK; mostly I'm just grateful to make it thru as far as I have (down to 3 mg/day after 3 yrs). Guess I am like Santa -- jolly with a bowl full of jelly.

(But getting back to "lucky for me,") pred also made me slightly more assertive (my husband would gently add, "and irritable"), which I have found to be a great way to overcome my female socialization to be nice all the damned time, even when being run over by interrupters, whom I no longer tolerate...). And slightly more cheerful, believe it or not, rather than depressed (which I was for much of my life). It just gave me thicker skin!

How weird is that?

But back to you -- sorry you are depressed! Many people feel that on pred, as you of course know, and those who haven't suffered it may underestimate its impact. You need empathy! Hope it's not too bad. As a nurse (and thank you for doing that life-saving work during these pandemic years, btw) I imagine you know all the methods to combat it. For me, exercise was the most helpful (ah, those endorphins).

Speaking of which, time for me to start jogging again. Those 15 lbs are asking to be burned off. First step: waking up earlier (which I did today, altho I did not go out).

Tomorrow I go out.

Hope tomorrow brings you something good, too.

I was diagnosed with PMR about a month ago. I am a 75 Year old retired nurse. I had never heard of this ! Blood work was the key to the diagnosis . I am still waiting to see a Rheumatologist. I am taking 20 mg of Prednisone a day at this point. Mornings are still painful.
I was wondering if anyone else has been advised de: getting a Covid Booster or flu shot while being on Prednisone?

Welcome @salmountain, My PMR has been in remission for 5+ years so I don't have any experience to share re: Covid booster or flu shot while being on prednisone. While we wait for members with experience, I thought I would share this information on the topic that might be helpful:

"Can I have the vaccine if I am taking steroids?
It’s fine for you to have the vaccine while you’re taking steroids. There’s no reason to delay the vaccine if you’re taking steroids, or have recently had a steroid injection or finished a course of steroid treatment.

Taking steroids as tablets, liquids, injections or drips might mean that your immune system doesn’t respond as well to the vaccine as someone who isn’t taking these drugs. This means that you may be advised to follow advice on shielding and social distancing guidance after you have had it and if you may need a third dose of the vaccine as part of your initial course. Steroid creams or eye drops should not affect your immune system or response to the vaccine.

Your healthcare team might want to discuss delaying a dose of steroids or a steroid injection with you, especially if there is a high risk of getting COVID-19. It’s important that you don’t stop taking your steroid medication without speaking to a healthcare professional, as this can leave you at risk of having a flare-up, which can increase your risk of COVID-19."
--- Vaccines for COVID-19 – your questions answered: https://versusarthritis.org/covid-19-updates/vaccines-for-covid-19-your-questions-answered/.

There is another discussion you might find helpful:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

One of the things that I found helpful that was recommended by my rheumatologist was to keep a daily log of my level of pain when waking up in the morning along with that days dose of prednisone. Even on good days I normally had a 1 or 2 level of aches/pain when waking up.
Do you keep a daily log?

Everyone situation is different. After 2 weeks of near total incapacitation I saw a rheumatologist who diagnosed me quickly. I started on 15 mg of prednisone that afternoon and within 4 hours my pain level was manageable and my muscles were working again.
It’s been 9 months. I’m currently at 8 mg which I split (5 mg with breakfast and 3 mg no later than 4 pm).
Still have pain every day. Some days are worse than others. But most days are pretty good.
I’ve come to the conclusion that I most likely won’t ever be totally pain free or find hiking or dancing as much fun as they were pre-PMR. I can live with that.
I’m a yoga and meditation teacher. As part of my training I learned therapeutic yoga for a year. I’m finding it very helpful.
I’ve cut carbs (I try to stay under 30 grams a day), sugar, and gluten from my diet. It seems to have helped with my pain levels and also keeping my weight in check. I gained 10 lbs during the first six months and haven’t been able to take it off yet but am happy to have stopped gaining.

Hello salountain,
I am 79, Stil a practicing massage therapist. Been on prednisone for about 7 months. I have had both the flu shot, and the latest covid vaccine. due to the far number ov f cases

For anyone considering vaccines, I will share my story in case anyone finds it helpful...I have had PMR for 5.5 years (started at age 57, starting well before covid existed). I have been on prednisone at various doses and have had multiple flares. I have never gotten below 2.5 mg without a flare. I probably have a genetic predisposition as my grandmother had PMR/GCA and my mother has PMR. I am currently on prednisone 5 mg daily and am trying Methotrexate 10 mg weekly to see if it helps reduce PMR flares and possibly wean off prednisone. I recently decided to get the latest COVID vaccine, flu vaccine, and RSV vaccines all at once. Some research has shown higher antibody titers after covid vax among patients who skipped 10 days to 2 weeks of methotrexate, so I skipped one dose (although my rheumatologist did not think skipping a dose was necessary.) I experienced vaccine side effects for 24-48 hours: fever/chills, soreness, and fatigue. This was very similar to all my prior flu or covid vaccine responses. While I know that some may have experienced PMR symptoms following covid vaccines, this has not happened to me. PMR may be triggered by any virus or challenge to the body and has existed long before vaccines, covid or otherwise. I am feeling just fine now. Hopefully this will reduce my risk of RSV/flu/covid. Best to all!

I was diagnosed in January of this year. After being off prednisone for 5 weeks yesterday. The 5 day flare-up that I had was so painful that I saw Doc yesterday. I am now back on prednisone for a 14 week taper to Kezvara starting with 20mg for 2 weeks, but first he gave my wife and I Covid booster and flu. Went home and started back on prednisone. Today, after a dose yesterday and this morning I am at 95% no pain or stiffness. You love and hate prednisone at the same time. If you are now on prednisone check with Doc before you get the vaccine.
Good luck