1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

So many question's???

Posted , 8 users are following.

marie_loui19398
marie_loui19398

Hi All,  I have not been able to talk or listen alot lately~  Too many doctors appointments! lol  Unfourtunetly its true!

 I went  to new Rhuemy here in Florida, He dosen't think I have Pmr, and has cut me down from 4mg  2x a day of Medrol, to slowly come down 1mg....about 8 months till off.  He also sent me to Physical therapy 3x a week. Too help my VERY weak upper arms.  He thinks that my sed rate was not ever that high?  It was 32 at its highest.  I don't know the difference you use in Britain~   

 Then I went to allergist, who told me a plan to come off this medrol in 8 weeks!  so He can do allergy tests?

 Now I have to have the full Hystroctomy next tuesday. Done by the new Davinci robot.

Then I went to My gp/regular Doctor, who said you have to come off the steriods now, in order to have this surgery, they don't want me to have an infection/low immune system. He said just do 8,7,6,5 etc in a few weeks you'll be off them.

Do you beleive all this!  Anyway, does anyone know if its ok to have this surgery/ or any, while on steriods?  I am in last stage before cancer sets in, and need this done now.  Today I go see Gp again, will get New blood results fro Lupus, Lyme diseae, etc, they are testing me for everything.   I also Had x-rays of both shoulders, and will learn about them today too.

 also I have been on this new diet plan who promises to beat this auto immune disease.  Its called Auto immune Paleo Diet.  Has anyone ever heard of this?  They say PMR is all caused from eating incorrectly and I have a leaky gut!

  I am so confused about everything!  Worried too about surgery this tuesday the 28th.

 Im hoping Eileen and you all, can please try to answer all these questions.  I really do appricate it, Thank u all, and Bless your hearts~  Marie

 

 

3 likes, 20 replies

20 Replies

Next
  • constance.de
    constance.de marie_loui19398

    Posted

    The experts will be along shortly to answer your questions.  Only one thing struck me 'PMR is caused by eating incorrectly' !!?!!  Wow, if that were true surely we could all cure ourselves in a few weeks?
    • kay97415
      kay97415 constance.de

      Posted

      Hello Constance, I am new to this forum so can't help with your questions but sending warm thoughts your way. X

       

  • audrey25251
    audrey25251 marie_loui19398

    Posted

    Valter Longo has done research on the effects of fasting in mice and the results are considered encouraging, but no long-term tests on humans yet. Google him - it's interesting.
    • EileenH
      EileenH audrey25251

      Posted

      Have you read any of the 5:2 diet books by Michael Mosely? He visited Valter Longo to discuss the fasting theories and developed the intermittent fasting theories on the basis of what they discussed. I combine the occasional foray into the 5:2 regimen with the "eating everything in an 8-hour window" which gives you daily 16 hour fast periods. It's the first time in my life I have lost weight without feeling as if I am trying! Never was a breakfast person - and it fits in perfectly!
    • audrey25251
      audrey25251 EileenH

      Posted

      Yes, thank you Eileen. I did see the tv programme and have his books. My husband and I have had a couple of gos at it but success has been limited!

      Hadn't realised he'd developed his diet from Longo's work. Am going to try again using your method. Thanks.

    • EileenH
      EileenH audrey25251

      Posted

      Is the lack of success the discipline or does it just not work for you? My husband's cousin has got back to his university days weight and figure! He retired a few years ago and despite spending a fair bit of time at the gym had become quite cuddly for him! The 5:2 worked brilliantly and now he does 6:1 and adds another day any time he feels he's put on a pound or two.

      What I liked was the way it re-set my appestat - I stopped feeling hungry quite quickly.  Generally I also don't eat processed carbs of any sort - but on the other hand I never feel guilty for eating something I fancy. Like the icecreams on Tuesday and today - we rarely go into town and the ice-cream shop is back for the summer. Have to check out the flavours again ;-)

    • audrey25251
      audrey25251 EileenH

      Posted

      Definitely our lack of sufficient discipline! We are now going to try harder, cutting out carbs 100% if we can. Like you will allow ourselves treats occasionally!
  • EileenH
    EileenH marie_loui19398

    Posted

    It is not up to your GP to decide whether you should be on or off pred for surgery - plenty of people have had surgery while on pred and it is the surgeon and the anaesthetist you should discuss that with. Many prefer the patient to be stable on a given dose of pred rather than at risk of an adrenal crisis because they have reduced the pred dose quickly purely for the case of being off it. Your rheumy's approach is correct - the GPs is NOT. Call the surgeon's secretary and ask for their direct advice.

    As for the ESR - mine has never been above 7 - I have PMR, one fifth of patients never have an elevated level and there isn't necessarily a link between severity and level of ESR (it's measured the same way all over the world).

    I'm afraid there is no evidence that diet influences PMR either as a cause or as a cure. If it is caused by not eating properly then surely even more of us would have it and develop it earlier????  I use something similar-ish to the paleo diet as I omit almost all carbs, eating meat, fish and vegetables but still drink alcohol (leaving it out didn't make any difference!) and eat some things paleo doesn't allow. I've done it to lose weight and have done so very successfully despite still being on pred (about 40 lbs to date over 2 years). Otherwise - allergy testing and dietary recommendations by what I'm afraid I'd classify as quacks is to fill their pocket and empty yours in sales of books and supplements and tests. I wouldn't stop my steroids for any allergy testing unless it was by a qualified medical doctor. 

    • Oregonjohn-UK
      Oregonjohn-UK EileenH

      Posted

      Concur with Eileen - I had day surgery back in December.  There only concern was that I was stable, in fact I stayed at the same dose for nearly 3 months roughl the same amount of time each side of the surgery..  I had no problems with the PMR or the steriods.

      Best of luck and hope all goes well

  • Nefret
    Nefret marie_loui19398

    Posted

    I have recently had a total hip replacement while on 5mg Pred, no problems at all.

    Eating incorrectly?  How I wish that were true.  As a T2 diabetic I have a limited diet anyway and for at least 10 years now, so I think I would have been cured long before this!

    • constance.de
      constance.de Nefret

      Posted

      Hallo Nefret!  Eileen once mentioned you were on Pred  "for life" (hope I remember that correctly!).  Is that so?  You are on 5mgs of Pred, you say. I have PMR and have just reduced to 6 mgs and still get pains after 4 years.  I'm always worried about Pred (like most of us, I know!).  My question - does it worry you, or do you just accept it?  I presume you have GCA as I have never heard of PMR lasting so long.
    • EileenH
      EileenH constance.de

      Posted

      I've had PMR for over 10 years Constance - still at 4mgs and can't get lower. My GP is happy and thinks life is a possibility.
    • Nefret
      Nefret constance.de

      Posted

      No.it doesn't worry me at all, it's just one of those things. I was diagnosed with GCA some years ago, but it isn't the whole reason for the necessity for lifelong Pred - I am very atypical and have managed to pick up other medical conditions along the way which also require Pred, so really for me it's a no-brainer!
    • constance.de
      constance.de Nefret

      Posted

      Thanks  Nefret, and Eileen.  I've just got to stop being paranoid about Pred!!
    • EileenH
      EileenH constance.de

      Posted

      You are at a low dose now at 6mg - millions of people all over the world take that sort of dose and will do for the rest of their lives for various illnesses.

      Taking aspirin, paracetamol, ibuprofen - and a whole load of other OTC medications also have risks but you don't refuse to take them do you? There are car accidents every day - you don't stay at home and refuse to use your car. It is all about balancing the risks. 

      The side effects of low dose pred are not significantly worse than the risks of being immobile due to the pain of PMR - that also increases the risk of weight gain, osteoporosis, falls, depression and a host of other things. So yes - stop being paranoid about pred winklol

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.