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Hey fellow PMR folks! I’m 51 and after lengthy misdiagnosed visits, was given PMR.

Posted , 9 users are following.

megan42504
megan42504

Started with what I thought was a knee in need of repair.   Then everything went to hell in the next few days.   Unbelievable pain and frustration... then had horrible chest pains.   Now seeing gasternteroglist.

0 likes, 23 replies

23 Replies

  • EileenH
    EileenH megan42504

    Posted

    HI - I was wondering why you have posted? If you want some advice and replies a bit more detail would be helpful.
    • megan42504
      megan42504 EileenH

      Posted

      Hi Eileen

      Yes, I’m sure you are.  Never joined a chat room before.... and ran into a few that weren’t available anymore.   And I’ve had the worst pain in my fingers and wrists the last few days.  Not typing very well.

      Soo, in addition to PMR, I’ve developed a very painful situation in my esophagus.  Not knowing if it might be related to prednisone.

      And have had bad pain in my mouth, specifically my tongue and corners.  Dr gave me a topical medication.  Then I read about Sjogren disease.  

      Really appreciate this forum, as not many people I know suffer from this.   EXCEPT my 80 yr old mother in law.  Go figure 

    • EileenH
      EileenH megan42504

      Posted

      There are 2 English language PMRGCA forums/chatrooms - this one which has been around for many years and one from the PMRGCAUK charity which is several years old. In the past there were a couple in North America but one just faded away and the other was hacked and became unusable. 

      What other medication are you on besides pred? Pred can cause gastric irritation and reflux and often doctors prescribe stomach protection medication. But there are other drugs with similar problems that are often used when patients are on pred.Pred can also lead to you developing thrush - and that often affects the mouth so that may be your problem.

      Here is a link to the forum Homepage and the third pinned post is our Resources post with loads of links to useful reading and sites:

      https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

       

    • megan42504
      megan42504 EileenH

      Posted

      Thank you very much 

      Just looking for a supporting group.  Maybe should look elsewhere.  You seem a bit agressive.

    • Anhaga
      Anhaga megan42504

      Posted

      Hi Megan.  We members offer all kinds of support.  We commiserate, especially if we've happened to experience the same kinds of symptoms as you have.  You probably need this kind of support just now.  Here's a virtual hug.  💕 We are all different so you'll find people on here whose journey is similar to yours and others who've had a very different experience.  And we all come with our own bits of knowledge.  EileenH happens to be the forum member who really and truly does know the most about this difficult condition and is always unfailingly generous with sharing her knowledge and helping the rest of us find out way through along this path.  

    • megan42504
      megan42504 Anhaga

      Posted

      Wow... just seeing this today.  Thank you for the hug.  Means a lot.  As I’m sure you know that however loving and supportive family and friends can be, dealing with someone in constant pain can be tough.  

      And I’m super sensitive and behaving like a toddler 😜.  

      Waking up to new pain is so frustrating.   My feet , and horrible cramps in the night in the arches.   Can’t get up to stretch them out.  Ugh 

      Have an appointment this week with rheumatologist.  And others.  

      Thank you 🙏 

    • Anhaga
      Anhaga megan42504

      Posted

      Hope your appointment goes well - take a little crib sheet so you don't forget any of your questions, so easy to do in appointments.   

  • Bethune
    Bethune megan42504

    Posted

    So sorry you are suffering. Which specific symptoms lead them to PMR?  Sometimes being 51 years young will make them not consider PMR at the outset.  Most  PMR people experience sudden Severe pain in the hip, upper thigh and groin, pelvic girdle area, and /or shoulder,  upper arm  areas.  A good trial of prednisone usually alleviates symptoms within 24-48 hrs.

    Good Luck I. Your diagnostic. Search.

    • megan42504
      megan42504 Bethune

      Posted

      Thanks 

      I’m sure that’s why it was at the bottom of the list.  Arthritis in both knees, however, since prednisone they seem fine🤗.  Tapering down from 40 ... and had bad pain.   

      My mother in law was diagnosed 6 years ago( never told us) and is doing great on 5 mg.  My inspiration:  and she knows how it takes over ones life.

      Thanks

    • megan42504
      megan42504

      Posted

      Yes it was definitely shoulders and butt joints.... and recently my hands and FEET.  Never had toe knuckles pain before.  

      🤗

    • megan42504
      megan42504 Bethune

      Posted

      Thank you..

      It was the blood work.  Yep, because of my age it was overlooked..  but the huge amount of protein something... the rheumatologist diagnosed it in a minute and put me on high dose of prednisone.  Immediately helped.  But then had many issues with organs...   

      my primary had a fit with the levels of my panels.  I didn’t care... felt so much better.

      Still working it out.  

      💜💕

  • amkoffee
    amkoffee megan42504

    Posted

    Of dear Megan. I can assure you that Eileen is really a very intelligent and caring person. And she is a wealth of information on PMR. I would love to have you as part of our community.

    Both of those symptoms in your mouth could be caused by iron deficiency anemia. If you haven't had your iron checked recently it would be worth asking your doctor to run some blood work to check your iron levels, hemoglobin and ferritin.

  • r.d.s26296
    r.d.s26296 megan42504

    Posted

    Hi. Megan

    Having pmr would make anyone grumpy.  🤗

    At the age of 75 years, I am now a faithful member of this "well of information and support group". Great members, especially Eileen, whom, believe me, can teach some of those rheumatologist a thingie or two. 

    I'm still at 25mg of Prednisone and hoping to taper down next week. 

    I have developed very puffy eyes, and I am perspiring like a builders labourer on a hot day. Funnily enough it's just my hair that gets soaked, like I've just exited the shower. My body is not perspiring ( lady's perspire, men sweat 😀wink just my head and hair are wet all the time. Has anyone else hade this problem. 

    This morning, at 08:30 after taking Prednisone at 3am ,( after eating a banana ) I have a strange dull throbbing in my arms. Hasn't happened for ten days but still again it's kicking in. 

    I'm also " blessed with Lichen Sclerosis " another auto immune disease...that's been on the agenda for about 15 years.  

    Anyway would be grateful if anyone can answer regarding the 'perspiring'...

    Have a painless day everyone. 

    Di

    • EileenH
      EileenH r.d.s26296

      Posted

      Lots of people complain of head and neck sweats. Some have adopted head bands a la John McEnroe and wrist bands to catch the sweat. Some use ice towels around their necks like tennis players too! It comes in various levels - the back of my neck feels damp, others drip wildly! 

      There is a regional nerve supply that covers the head, neck and decolletage area - I often wonder if it is anything to do with that?

    • r.d.s26296
      r.d.s26296 EileenH

      Posted

      Thanks Eileen

      You always give such helpful advise. Bless

      Di

    • megan42504
      megan42504 r.d.s26296

      Posted

      Oh my goodness..: was sure that my night sweats were over... I now sweat like a ho in church all day.  Oops, sorry if that’s inappropriate.  I’m so fat and swollen.  But thankful that I can pee without having to use a solo cup.  Yes, had weeks that I couldn’t use my knees or butt .  And peed into a cup like a fraternity pledge 😆.    

      I’ll definitely look up lichen schlerosis.  I didn’t know what Sjoderns was..:  seems I have that as well...

      Good luck and god bless 

    • megan42504
      megan42504

      Posted

      Wondering if anyone has found this to be genetic?  

      Was surprised to find out that it’s not related to arthritis, but an autoimmune disease.  Hmm

      🤔

    • r.d.s26296
      r.d.s26296 megan42504

      Posted

      According to papers I have researched. Lichen Sclerosis is genetic. Plus an autoimmune disease. 

      Hope you will feel better soon Megan. 

      Di

    • EileenH
      EileenH megan42504

      Posted

      If you mean PMR/GCA then it isn't a genetic disorder, there is no associated gene as there is with some inflammatory arthritides - but having a Scandinavian heritage makes it a bit more likely you might develop it. However -  there are many factors that must come together as wekk, and they aren't the same for everybody.

    • EileenH
      EileenH

      Posted

      Pfft - well!!!!

      Ps - forgot to say that many forms of arthritis are autoimmune. PMR and GCA are autoimmune - but forms of vasculitis, blood vessels are involved as opposed to joints in arthritis.

    • r.d.s26296
      r.d.s26296 EileenH

      Posted

      Hi Eileen

      I seem to recall a couple of weeks ago , someone mentioning that they had developed something like channels in their head. 

      I have just noticed that I have the same thing

      Not painful, but it is now reaching my hair line. 

      I'll mention it next week to my rheumatologist...very strange. 

      Is this common with pmr ?

      Di

    • EileenH
      EileenH r.d.s26296

      Posted

      I think it was a very old thread that had been resurrected. Don't think we ever worked out what it was!!!

    • r.d.s26296
      r.d.s26296 EileenH

      Posted

      Thanks Eileen

      I'll be at my rheumatologist next week and I'll mention it to her. 

      Di

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