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Can we do a little research of our own on PMR.

Posted , 5 users are following.

Judygirl
Judygirl

We who use the forum share info about our own responses to PMR, recently someone wrote in about a fall and consequent PMR, she was told to go elsewhere.  We may be missing something here for when there is a

wound and the immune system is not doing its job, we need to know why -

not say it's feeding on itself which is absolutely incorrect.  See Science

January, 2015 - "Inflammation's Stop Signals", we need to keep our minds

open to enable us to figure this out!!!!!!!

 

5 likes, 8 replies

8 Replies

  • pat38625
    pat38625 Judygirl

    Posted

    Hi Judy, I remember someone on the site saying they had a fall but nothing about PMR.  I agree with what you are saying.  The first thing I did before joining this site was when a locum dr said it might be PMR although I had ME for 14 years and that was the route I was thinking.  To cut a long story short, I researched and tried to take so much information in.  Even when I found this website I couldn't get the hang of it.  The information and support and advice I have got here is second to none.  I know I would never get this info from gp or Rheumy (even though I haven't seen one yet)   So sorry about that other person being told to go somewhere else. 
    • Judygirl
      Judygirl pat38625

      Posted

      Dear Pat:  I agree this forum is invaluable and my comment was not meant as a criticism but rather to find food for thought in what is offered.  There is so much misinformation coming at us (as per comments on some doctors who just aren't worth their salt), we (the sufferers) are probably far more able to connect the dots than they.   You are right

      about the message not referring to PMR, I naturally assumed it was 

      because it was addressed to this forum, sorry.  The last paper I refer

      to in Science Mag. sort  of ties in with my experience when I fell and

      opened a wound in my knee, shortly thereafter I was diagnosed with

      PMR after being a normal healthy woman.   I have asked if anyone

      suffers from blood blisters on the lower legs (or anywhere else) was told

      the connective tissues between the derma is destroyed by prednisone and on reduction would be rectified.  I have been

      on 4 mgs for several months and the blisters are getting worse, been to

      a vascular doc and pointed it out to my reumy, both of whom said not

      to worry - my legs are not damaged from the outside, something is going on inside - how can I not worry.  Thanks for listening.

    • pat38625
      pat38625 Judygirl

      Posted

      Don't worry Judy I did not take your comments personally.  I honestly put more faith in the people on this forum before gp or rheumy.  Eileen knows her onions and she has a medical background.  

      I understand what you are saying, vas doc and reumy telling you not to worry and yet not being able to tell you why you are getting the blisters.  

      I have only just turned 60 and more than 10 years ago I put on approx 5 stone, loss of appetite, no libido also Endocrinology Prof noticed the skin on my arms was very thin.  Did loads of blood tests, 24 and 48hr urine collection to measure cortisol levels, thyroid tested and everything came back normal.  Like yourself I know there is something going on in my body before PMR.  The skin on my legs is like paper, if there is an itch and I scratch it then I would draw blood.  It's just so frustrating.  So I do understand but I don't worry, I am Blessed that I can just switch off or maybe I am not even switched on lol   Hope you get sorted Judy and please stay in touch. 

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Judygirl

      Posted

      Judy, I had a similar problem to you on my lower legs which was diagnosed as varicose eczema caused by the introduction of a new pill for high blood pressure.  I wondered whether you might be taking such pills that could be the culprit?

      The steroids can cause very dry and thinning skin, and the best treatment for this is Double Base which is available in either a gel or a cream, over-the-counter and on prescription.  Frequent use can help to stop any tearing.  Some patients on steroids also find they bruise very easily, in fact sometimes at the slightest knock - I got through copious amounts of arnica for this.

    • Judygirl
      Judygirl MrsO-UK_Surrey

      Posted

      Thank for your suggestion, the only pills I take are prednisone and

      a daily antibiotic for a bladder problem.   I have never had varicose

      veins.  I shall purchase Double Base and hope it helps. The frustration lies in seeking doctors diagnoses and using  recommended cream from a wound centre - you'd think someone could make an educated guess!!!!  Thank you soo much for your imput, I appreciatre it.

  • barbara75814
    barbara75814 Judygirl

    Posted

    Yes, there is always a lot to learn--sometimes from the most mysterious collection

    of facts or happenings. Nothing ventured, nothing gained!

    Thanks for pointing it out--

  • noninoni
    noninoni Judygirl

    Posted

    I love the idea of our own research.  I sent that article to my daughter who is a molecular biologist and could understand for better than I. 

    I just found another article which I think will be of much interest:  I have had hypersensitivity pneumonitis (HP), another autoimmune disease, for 10 years now due to pet chickens and horses, and it is a rather nasty disease, though very rare.  My PMR is new. I have never had methotrexate, but this article certainly has my brain whirring in mad little circles:

    "Methotrexate induced Hypersensitivity pneumonitis: Review of Literature with Case report" In the case report you will see it was initially thought to be pneumonia, not HP.  People on this forum often complain about methotrexate. If it can induce HP,  can other pharmaceuticals induce PMR?

    • barbara75814
      barbara75814 noninoni

      Posted

      Ah, interesting question! Yes, indeed, we have to do plenty of research. My first dip into that sea of information did indeed lead me to suspect the safety of methotrexate!

      Let's hear more from you, I hope!

      Best, Barbara 

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