Hey folks...I should say Hey "Ladies" as apparently PMR effects women more then men! They say it is rare, whites more than any other race, and of course, older people. So when people ask my what it wrong with me, I merely respond that "I am an old uncommon white woman!
Not funny tho....it took 8 months last year before someone diagnosed me with PMR...nobody else knew what was wrong! So I have been on steroids since last November. Every time I attempt to wean myself down, it flares back up. I am soooo over this!
Despite the "fat pad", the thin skin, the patechial rashes are bad enough, but oh my word, my hair is a mess! Dry, brittle, frizzy, breaking off at the ends. Saddens me greatly! I have been wearing my hair up for the past year so the bald spots don't show. Thank heavens I started with a thick head of hair or I'd be bald!
Any suggestions folks? I have gained 35 pounds and between that and the hair it gets rather depressing!
I did try Kerotine...but when it came in the mail the label said that if you are losing hair due to a prescription, this product will not help!
Ohhhhh....Margaret,(Maggie??), I FEEL YOUR PAIN!!! Absolutely everything you mentioned, (with the exception of the balding hair...so far...it's only been 2 months!), I can completely relate to!! Add in an emotional wreck who cryes at the drop of a pin, and someone who's becoming less and less patient with EVERYTHING ( and I'm normally a Very patient person!) and you've got the makings of....ME!!! Also, I've gained 13lbs in the past TWO weeks!! I'm Sooooo Bummed and can't deal with these overwhelming changes taking over my body. Ughhh I'm so sorry, but reading your post actually made me laugh....SO familiar to my life right now! I guess misery loves company. So aside from all the insanity of all this, how are you (physically) doin'? What's your prednisone dosage? Please keep me posted as it's so nice to "talk" w/someone relatable!
Oh Man.....more than I can say!!! We had SUCH a good time. The thing is, we didn't do anything particularly special. Went to Costco (had a Blast!), went shopping, had mani/pedies....just normal, everyday mom/daughter "stuff"....but soooo much fun! Also, she just bought a new home so we spent alot of time over there figuring out where furniture would go, etc,etc. And lastly, my wonderful dog was an absolute CHAMP on the plane....his 1st flight. A great trip indeed! Only problem now, I miss her and the boys More than Ever! But alas, back to reality. As good as everything went, I think it pretty much did me in for awhile. Haven't been feeling too well past couple of days. Constant headache, an almost nonstop stomach ache and fatigued to the Max! I guess it's all par for the course...better days ahead?? You didn't mention what your dosage of pred. is? Don't mean to be nosey, just curious. I'm on 16.5mg for the nect 3 weeks. Ughhh. I sure don't want to gain anymore weight or have any other side effects. I'm already having trouble w/double vision which I see an optham. for next wk.
PMR is actually the most common cause of rheumatic symptoms in over 65s - so it can't be that rare!
Weight gain with steroids can be limited/avoided by cutting carbs drastically - I'm not saying no carbs, I'm saying very few carbs and no processed or white carbs.
" Every time I attempt to wean myself down, it flares back up."
It would be helpful if you told us your pred history - what dose did you start at, how did you try to reduce (speed, reduction step size) and at what dose did you flare?
Eileen and others will answer your questions. I can say the weight gain is not a side effect for all and I know someone who continued to eat as normal and lost weight but, alas, that wasn't me. I'm a gainer and not pounds but stones. It's coming off now but as Eileen has said low carb will help reduce the weight. I also lost a lot of hair but it has grown back well and I am now on 3mgs. It was of more concern to me than the weight gain. There are many of us in the same situation but it's better than the pain. You are not alone and this site is active at all hours because it is world wide and when many are sleeping many others will be awake and on this foru
Well, here I am, the rarest of rare, a man with pmr. I also have many of the side affects from prednisone, weight gain, moon face, etc. but you know what, I'm happy to be alive and pain free. I was blessed to have a Primary Care Physician who diagnosed the disease right away. I hope that everyone can find peace and comfort that we do care. Keep sharing.💖
Not that rare - not on this and the Healthunlocked forums!
Nick, Dan, Michdonn and a few others here, Mark, Albert, Pastit (his name, not mine), Pepperdoggie and a few more on HU. They are just current members - been a lot more in the past.
Hi Lynda, thanks for your post! I feel for you, you have my sympathy.
I am feeling so much of what you are feeling, your post is actually a comfort, I've just got back from a day with family and was very much impatient with everyone, trying so so hard to be patient and hiding feelings.
I don't know how to deal with people who expect you to be lovely when you very much don't feel it.
I love your line "misery loves company" its so nice to come home and be with people who are feeling the same as me. Although saying that feels wrong because it would be much nicer for you all to feel good.
As you say so nice to talk with someone who is relatable
Hi again margot...loved hearing from you. In fact, I'm starting to look for your name when I get an "alert" on my phone as strange as it sounds, I'm feeling a fast friendship w/you! I know that sounds silly, but I tend to always say what I feel! Anyway, today's been unusually "down" for me. Maybe I'm going through Makenzie (my daughter) withdrawal! Not sure, but I've just been unusually depressed and teary. However, I did have a sorta "come to Jesus moment". I looked at my arms and hands which look incredibly FAT to me at the moment, and just said to myself, "it IS what it IS"! Then I stopped dwelling on it! This too shall pass...Right??? And at the moment my pmr symptoms seem to be under control, so who am I to complain?! I'm sorry to hear you had a difficult day. Been there, done that! And yes, it's SO annoying to have to "act" pleasant when you sure as hec aren't feeling it! Yeah...good times!
I'm also male, 84. Diagnosed about three years ago. Almost a year of symptoms before diagnosis.
Initial relief of symptoms with dosage of 20mg medrol (equivalent of 25mg regular pred). Actually more than just relief. I felt great.
I've now been at 6mg medrol for a couple of months. Up and down for several months prior.
Wish I could say "pain free", but I can't. I have tolerated various kinds of pain over my 8 decades. And the best I can say is that my pain from PMR is tolerable.
Would you mind saying what dosage of steroids you are currently taking? And for how long?
Hi philoso...would you mind explaining the difference btw medrol and prednisone? Is one safer/better than the other? My doc's never even mentioned medrol! Does it tend to have the same side effects as prednisone? If you could enlighten me I'd be much appreciative! Thx, Lynda
It is simply another medium-acting corticosteroid, methyl prednisolone. I found it had far worse side effects - I have next to none with prednisolone and prednisone, for me methyl prednisolone was awful. The methyl part of the molecule is supposed to give it a more effective antiinflammatory effect - but that also means the side effects can be more. Everyone is differnt - some people use it with no problems. But corticosteroids are corticosteroids.
Margaret, I am a 81 year young man over couple years on my PMR journey. PMR required a lifestyle change. Gained 20-25 lbs at first, no sugar, cut carbs and exercise back to normal weight. I use the DSNS method to taper, and will not reduce if I have any PMR pain. I stay very active, positive and try to smile. Doing just fine. Give it a try. ☺️
Hey to another Maggie. I have been on steroids since the 1st week of November. I started out at 20 mgs. I was told that this THING could last a year, maybe two, or perhaps forever. So I continue to wean myself down, but then I relapse at 7.5. I went back up to 10 again but that didn't help after a week, so screw it, I went back up to 16 as I had a business trip planned that required a great deal of driving. I intend to drop to 12.5 this week.
The Dr also prescribed methotrexate so that I could get off of steroids. He thought I could stay at 7.5 for 3 weeks then start to go down again, but obviously that didn't work. I am seeing him next week.
What really aggravated me was that two years ago I LOST 35 pounds...and did what I was supposed to do, and gave away all of my "fat" clothes. Now that I FOUND those 35 pounds, nothing fits anymore! Arghhhh.
But....I can walk, and I have to continue to remind myself that at age 69, many of my friends and acquaintances over the years never got the luxury of living this long.
I got hit hard in the beginning....it came on in about a week before it hit both of my knees and the hips. I went to every dang doctor trying to find out what was wrong with me, and didn't, as I said, find out until November. I had doctors sending me every which way but lose up to then. Even in July I had blood work done, and my sedimentation rate that should be between 0 and 30 was 119! I was a cripple! But...that doctor said "Oh, you just have arthritis"! Another arghhhh!
Thanks for your response and will see you on here again.
Started at 20, got down to 5 and relapsed. So on and off, every few months, I can't get down to 7.5 without relapsing, He put me on Methatrexate so i could stay there...but it didn't work. Went back up to 10, then pain persisted, so went back up to 15 as I had a business trip planned that required a great deal of walking and driving. I am dropping to 12.5 this week and I see the Dr next week.