New Group Member

[Summertimegolf]

Hi everyone. I live in Arizona, USA. I found this group while searching for as much information as I can get. Diagnosed with PMR in March 2019. My Primary diagnosed it immediately and started me on Prednisone 20 mgm. within 48 hrs all of this excruciating pain in shoulders, upper arms and hips completely gone. Now on 15 mgm. Looking forward to getting more information on this site.

[JohnnyQ50]

Hi,

Welcome to the club, PMR Pro and others more knowledgeable than I will be along soon. In the meantime the following link will provide some answers on PMR, follow the links on this site to other publications.

Cheers

JohnnyQ

practicalpainmanagement.com...

[Marilyn1959]

Hi Summertime golf. Welcome. This very active forum will provide a wealth information and support night and day.

At present you are in the euphoria stage. Long may it last! However a word of caution at this stage; be careful to try not to over do things. Pred is not a cure unfortunately. The temptation is to pack as much in as you can on the good days (understandably), but it does and will catch up with you. So learning to 'pace' yourself asap will be a positive start on your PMR journey.

[Yellowbluebell]

Welcome to the forum. Hopefull you will find the answers to what I am sure is a long list of questions about pmr.

[PMRpro Ambassador]

Yes - as Marilyn says, just because you feel well, don't go mad catching up on what you missed! The pred is just managing the inflammation - it does nothing to the underlying autoimmune disorder that causes it and that continues in the background, attacking your body tissues and leaving them delicate. Muscles in particular are intolerant of acute exercise and you are likely to develop delayed onset muscle soreness more easily if you do too much - and it will probably take longer to resolve than you are used to. In the intital stages at the higher doses the pred will give you wings - and may lead you to overdo things without noticing it! And then you will think the PMR is getting too much for the dose you are on which may not be the case at all.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Have a read of attached, hopefully give you more info.

healthunlocked.com/pmrgcauk...

[PMRCanada]

Warm welcome Summertimegolf. Glad you found the forum! These folks have a wealth of knowledge given their lived experience with PMR/GCA. We will “get it” more than most others do.

Acceptance and adjustments are key to living with this condition, and symptoms are key (along with pred), to managing it. Be sure to taper your pred dose down slowly (never more than 10%).

As already mentioned, take it easy during this “honeymoon” stage of initial pred, balancing activity and rest. Try and avoid stress.

My timeline is similar to yours (diagnosed May 1/18), and I started in 20mg, now down to 8.5mg. I will say I feel much better one year in than I did at the beginning as I was very fearful of pred side effects and was shocked to have an AI condition.

Wishing you a smooth journey ahead. I’m hoping to get back to golf this season if I can get my shoulder pain resolved. Glad you’re in a warm location, I find heat really helps my PMR. Of note, my cousin is currently a prof at University in Phoenix (he formerly worked out of the University if Arizona in Tucson). All the best.

Leslie

[Purplecrow]

Hi Summertimegolf. I"m heading to Az on my annual roadtrip. I live in Pacific Northwest, Bellingham Wa.

Welcome to this forum. You will find answers to most of your questions here. I believe the collective wisdom on this forum is greater than you would find in any other arena.

Kind Regards, jerri

PMR diagnosed Sept. 2013

[OutdoorsyGal]

I’m also American (Montana), and my internist put me on a 15,10,9,8,7,6,5,4,3,2,1 taper that seems to have knocked back most of the inflammation in 11 months, without prednisone side effects.

I’m not entirely pain free, but Aleve now handles it, and an afternoon nap.

I hope you also have success with your treatment.

[Navion in reply to OutdoorsyGal]

I live in Montana too.