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PMR

Posted , 15 users are following.

margaret53690
margaret53690

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!

I'd appreciate any input! 

 

0 likes, 38 replies

38 Replies

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  • Silver49
    Silver49 margaret53690

    Posted

    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

  • charles2523
    charles2523 margaret53690

    Posted

    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.💖

    • EileenH
      EileenH charles2523

      Posted

      Not that rare - not on this and the Healthunlocked forums! wink

      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.

    • philoso4
      philoso4 charles2523

      Posted

      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?

    • lynda62707
      lynda62707 philoso4

      Posted

      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

    • EileenH
      EileenH lynda62707

      Posted

      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.
    • margaret53690
      margaret53690 EileenH

      Posted

      Me as well Eileen.....methyl prednisone was AWFUL for me. My vision got all screwed up and headaches galore!  
    • philoso4
      philoso4 margaret53690

      Posted

      Never having taken simple prednisone I cannot have an opinion as to which is better. I've had no side effects that have different than prednisone's well known ones. I did have a rapid increase in cataracts which I understand happens with corticosteroids in general.

      Charles, if you're still on the forum, I'd appreciate hearing further of your experiences.

  • Michdonn
    Michdonn margaret53690

    Posted

    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. ☺️
  • margaret53690
    margaret53690

    Posted

    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.

    • EileenH
      EileenH margaret53690

      Posted

      Mehtotrexate will NOT get you off pred. It MAY, if you are very lucky, allow you to get to a slightly lower dose - but there are no guarantees of even that.

      The only arthritis that would give an ESR of that level is rheumatoid arthritis - and that needs a rheumatologist pdq. Where on earth do they come from?????

  • margaret53690
    margaret53690

    Posted

    This post was also back to Lynda...sorry, I am new to this! 
    • lynda62707
      lynda62707 margaret53690

      Posted

      Hi Margaret...no worries, I'm kinda new to this as well, (both pmr and this forum!). I'm starting to get a bit concerned as I was almost IMMEDIATELY diagnosed w/pmr. So many of the folks on this site seemed to have taken ages to be diagnosed correctly. God, do I Even Have pmr??? All I can go on are results from my blood work and the exam/questions from my Rheumy! I'm probably sposed to trust this, but I'm quickly becoming a skeptic!! Feeling just a bit alone and lost right now! Any words of enlightenment/encouragement would be greatly appreciated right now! Thanks guys...

    • margaret53690
      margaret53690 lynda62707

      Posted

      Hey lynda....as for words of encouragement needed?  Someone said it above...."It is what it is".  As long as you are pain free, that's what counts. I couldn't even walk for 2 1/2 months living on 14 Advil a day just to get from point A to point B. Now I can garden, I can get into my pool, and most importantly I can get into my Hammock without killing myself getting in or out! LOL

      So, think of all the things you can do now that you couldn't do before....that helps.

      Oh I am not denying that it can be depressing....there are days that I don't even leave the house...no clothes that fit, hair is dry and brittle, patichial (sp) rashes that make me look like I have the creeping crud, and on and on.  I just have to keep saying to myself....It is what it is and I now own it!

      Concentrate on the good things....and remember, not knowing how old you are, that others you have known haven't head the pleasure of living as long as you have....and there are ALWAYS some who are worse off than us!  

    • EileenH
      EileenH lynda62707

      Posted

      Be grateful you had a doctor who recognised the possibility. A lot don't. And frankly - PMR is preferable to some of the options. It doesn't kill or cripple and can be managed pretty well with pred. All positives.

    • margaret53690
      margaret53690 EileenH

      Posted

      I saw an Orthopedist with John's Hopkins back in July. My daughter got so mad that from the first week in April until then, I was getting pushed from one suggestion to another. No one had even done blood work, and honestly I never thought to request it.

      The results of the blood work showed my Sedimentation rate (normally 0-30) was 119!  he did nothing!  Gave me a cortisone shot in each of my knees and my hips (I'd rather have a baby then have those shots ever again!)

      My rheumatologist in November was so angry when he saw that Sed rate and that the Dr didn't do anything. He even took down his name and asked me to spell it.  That's when he explained to me that PMR, when going undetected, can cause GCA (Giant Cell Arteritis) and I could have gone blind.

      There are always doctors that graduate at the bottom of their class!  

    • EileenH
      EileenH margaret53690

      Posted

      True! I'd prefer not to have to meet them though!! 

      PS - petechial wink

    • lynda62707
      lynda62707 margaret53690

      Posted

      Ohhhh yes! Totally agree about cortisone shots!! I had one Years ago (something completely unrelated) and swore I'd NEVER have another one, EVER!! You're right...have had two babies, and would do that again before receiving another shot! THAT'S sayin' Lots!

    • ptolemy
      ptolemy margaret53690

      Posted

      I am not sure orthopaedists are that interested in sed rates, mine wasn’t when I first saw him. After my op when it went up to over 300 he did say stay in hospital a couple of days and increase the pred. An orthopaedist friend of mine does not know the difference between fibromyalgia and polymyalgia. In fact I am not sure he knows the symptoms of either.
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