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

Discouraged

Posted , 17 users are following.

djwillms
djwillms

I was diagnosed with PMR in December, 2015 and started on 40 mg prednisone which rapidly tapered to 20 over two weeks.  The pain resolved rapidly, miraculously.  My ESR went from >100 to 30 in a week and CRP from 7.5 to 2.3.  In the following months I continued to taper but whenenver I drop below 7 mg of pred I have a flare.  My ESR and CRP have stayed very slightly elevated with minimal increases during flares.  This summer my Rheumatologist recommended trying Methotrexate to which I reluctantly agreed.  After four months, my ESR and CRP have actually increased significantly and for the first time my kidney function is slightly decreased.  (I was at 6 mg pred but increased after the labs to 10 mg.)  I will be going off of Methotrexate--thank God:  It made me sick for a couple of days every week--but I don't know what other concoction will be suggested next.  My labs for RA have been negative, but I do have some joint pain and swelling.

The week before my last labs, I was under a great deal of stress.  Could that have contributed to the bump up in both CRP and ESR?  I had an illogical hope that I would be well in a year but no such luck.  This is my first year of retirement and while I appreciate not having to go to work, being this sick is a bummer.  

And if being sick isn't bad enough, as a citizen of the US, I have to listen to the crazy ^%$#&^ Republican presidential candidates day in and day out

Suggestions?  Words of wisdom?  Hugs?  Emigration strategies?

 

2 likes, 43 replies

43 Replies

Prev
  • judy20492
    judy20492 djwillms

    Posted

    I too have a sensitivity to gluten and or wheat. I actually had a flare after eating too much cake at a party. The next day I was in a flare. My reasoning (may be flawed) is that the gluten and or wheat exacerbates my inflammation and contributes to a flare. I have not had another flare since then, and have been very careful with what I eat. I may be totally wrong about this, but it seems to be working for me.
    • dan38655
      dan38655 judy20492

      Posted

      You were wise to make the conection between the cake and the effect it had later.

      It might be gluten, or it might be the very high sugar and fat load that the cake put into your bloodstream, for your liver and pancreas to have to deal with.

      The body is not like simple plumbing, and is literally not designed to handle much in the way of modern foodstuffs. Things like cake and ice cream can be very taxing to the internal organs that must maintain very tight control of one's blood chemistry, so the quantity of such foods must not exceed the relatively short-term metabolic need for such nutrients as the sugar and fat. Otherwise, regulation is less precise and a heightened inflammatory response is the result.

  • barbara75814
    barbara75814 djwillms

    Posted

    Dear Discouraged,

    In my case, "yes" is the answer as to stress having an effect on PMR.

    Enormous stress I believe is why I got PMR in the first place. I am still under a lot of stress but handling it a bit better. Psychotherapy helps too.

    I have reduced the pred dose from starting at 19 mg. to where I am now, at 3 mg., and have often noticed weird aches or pains and other strange symptoms for two or three days after I first reduce, after which things would return to "normal." I decided not to be surprised when that happened.

    Now that I am on the way down to zero mg, I am doing the "very slow--almost stopped" reductions, and so far so good.  The rheumatologist said oh no, just keep doing 1 mg. a month, but I want to see how I do on the slow method, so that's what I'm doing.

    I completely understand your discouragement, but oh dear, do try your best to realize that things could be far, far worse. And turn the &xx#$% 

    Republican presidential candidates OFF!!

    If you can find anything to laugh hard about, so much the better. Meanwhile, here are a bunch of hugs and all good wishes for your continuing improvement from

    Barbara

     

    • djwillms
      djwillms barbara75814

      Posted

      Thank you.  Thank you.  It feels better hearing your virtual voices.  BTW, I have taken 10 mg for two days now (up from 7) and feel markedly better.

       

  • Mrs.Mac-Canada
    Mrs.Mac-Canada djwillms

    Posted

    Suggestions:  learn acceptance and patience,   

    Words of Wisdom: enjoy all you can because even at a slower pace life is pretty awesome - maybe this is meant to be a lesson to us

    Hugs - my Mum always said at least 8 per day and it has been proven that a good hug will initiate the release of endorphins. 

    Emigration strategies - tough one - I happen to love Merida, Yucatan. If not for my grandkiddies I'd be here full time (here now in the sun till March)

    My husband is a great fan of US politics because he says even great writers couldn't write this stuff although a little embarassing😬

    Hang in there, you will get through this!!

    Big hugs,

    Diana🌸

    • LayneTX
      LayneTX djwillms

      Posted

      So true, the last 8 years of our Administration have been such a total embarrassment!  Ugh. So sad the debt they have put us in, very scary. People here, the young people, just don't want to work anymore either. They just want handouts. Crimes are up, people are so rude these days.  I miss the old days of kindness, respect, honesty, being able to fly without worry, I don't even consider traveling anymore, I miss that. We are becoming a nation divided due to religions and hatred verses the One Nation we used to believe in. My Southern states are losing our traditional generosity, hospitality and kindness too since so many people moving in that don't care about their neighbor.

      I personally believe in middle ground! Too bad we can't have that HUH? 

Back to top
Prev

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.