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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

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  • ptolemy
    ptolemy djwillms

    Posted

    Getting down to 7mg in less than ten months sounds pretty good to me. I think I may have refused Methotrexate if I had achieved that. A group of doctors in Bristol suggest staying on 10mg for a year. Obviously your ideal dose is currently 7mg and you should stay there until you feel you can try a reduction again. I don't reduce by more than .5mg below 10mg. By the way do you take vit D and calcium supplements? 

    CRP and ESR can go up for various reasons. Mine shot up when I had a cold at the beginning of the year. If I remember my ESR was 62 much to my doctor's concernation.

    I think your real worry is if Donald Trump becomes the next President, that will definitely send my blood markers up not to mention my stress levels! 

  • julian.
    julian. djwillms

    Posted

    I'm absolutely no use at all in resolving your dilemma. Apart from my limited understanding that the pred has to follow the course of the PMR as it hopefully reduces. Reducing the pred and expecting the PMR to magically follow and go away seems to be contrary to the laws of nature. The pred treats the symptoms not the disease.

    If 7 is the point at which the symptoms are manageable then nothing you or I can do can change it. Just time.

    But I do marvel at American technology that seems to continue its onward surge despite the whacko political excesses.

    I think adding time travel to the mix is exciting. Here are the rest of us stuck in October 2015 and you have already received your future diagnosis. I can't imagine why travel backwards, unless to a previous symptom free time. Maybe you haven't traveled far enough back.

    Wouldn't that be nice, how did you do it, where can I get one?

    Though on thinking about it maybe I prefer to only live through PMR once in my lifetime.

    On a serious note being discouraged at times seems to go with PMR. Its unpredictable and uncertain. I think an emigration strategy would be a bit extreme given the current unwelcoming state of the rest of the world so am reduced to suggesting humour. At least it seems to help me remain mostly positive and when I remember drag myself out of my occasional depths of despair.

    Viewed from the correct perspective Donald can only help speed your recovery.

    • djwillms
      djwillms julian.

      Posted

      Time travel is a specialty of mine--as is mis-typing.  Thanks for the words of encouragement.  Donald WILL NOT speed anyone's recovery.

       

  • Flutterbie57
    Flutterbie57 djwillms

    Posted

    LOL (lots of laughs) - turn the tele and the news off. The rest of the world is watching and waiting to see who will be the new leader in your part of the world

    cry.We only get to hear the best, the worst and the most outrageous bits tho. 

    Hugs - plenty of those.PMR hit me this year almost on my retirement birthday - not impressed either !

    Words of Wisdom - patience ! - we will get through this - so I keep telling myself.

    Emigration strategies - I fancy resting and realxing in a hammock, under the palm trees, in the perfect climate somewhere. 

    Now back to reality - I broke my ankle two weeks ago - I've had 2 weeks enforced rest. I have still had good days and bad days tho, so I will stop beating myself up, as I thought I was just overdoing on the good days, which then bought on the bad days.

    Suggestions - enjoy a couple years of well earned rest ???? (I am trying to convince myself !) I also like good old Oprah's gratitude book idea - I think I will put in there today - I am grateful that I am not running for President of the good old US of Aconfused

     

    • lucy82013
      lucy82013 Flutterbie57

      Posted

      Hi everyone in this discussion. I was wondering if anyone had an intolerance or allergy to anything. I am thinking of anything from everything.

      . Lucy.

    • Anhaga
      Anhaga lucy82013

      Posted

      The only food sensitivity I think I have is to some of the chemical additives, so I avoid processed foods as much as possible.  I don't think that my food has any connection to my PMR, more likely stress both physical and emotional.  
    • julian.
      julian. lucy82013

      Posted

      I have no allergies.

      Just a dislike of ice cream that contains corn syrup when there's some perfectly good sugar cane plantations just a tad north of us.

    • dan38655
      dan38655 lucy82013

      Posted

      I do think that there is a strong connection between allergic symptoms and the occurrence and severity of pmr, but I don't think that it is direct.

      Rather, the same sort of elevated cytokine levels that would increase inflammatory (as in pmr) symptoms will also increase allergic sensitivity, and both kinds of symptoms respond to systemic imbalances such as can be affected by one's "diet to exercise" ratio as well as to dietary carbohydrate and related blood sugar levels and blood sugar uptake into both muscle and liver tissues.

      I recommend as much DAILY exercise as one can manage without bringing on any localised trauma, as in particular joint regions, as well as to keep sugar and starch (as in flour and potatoes) intake down to well-moderated minimums.

      Daily cycling is one exercise which I was able to maintain throughout my pmr ordeal, and has tended not to over-work the affected joints. By comparison, using a vacuum cleaner was worse for my shoulder joints!

    • djwillms
      djwillms dan38655

      Posted

      Cleaning horse stalls(when I am up to it) is surprisingly therapeutic.

       

    • dan38655
      dan38655 djwillms

      Posted

      It is a good discovery, whatever sort of activity one is able to do comfortably, and even to enjoy, that such activity be done every day if possible, preferably early, pmr allowing.

      Staying active by whatever means, in other words. Very therapeutic.

    • constance.de
      constance.de Flutterbie57

      Posted

      I like it - "resting in a hammock, under palm trees" etc etc.  Does it have to be a hammock?  Never found one comfortable yet!
    • lucy82013
      lucy82013 dan38655

      Posted

      I agree. I haven't tried the cycling yet though but will consider it. What do you eat for breakfast? I find that the most difficut meal to even think about.
    • dan38655
      dan38655 lucy82013

      Posted

      For breakfast, the emphasis is on the glycemic load of the meal, i.e. how the blood sugar will respond.

      If I were to eat cereal with milk, my day is nearly ruined from the start, I'd be "yo-yo" hungry all day, with not much energy.

      I eat one of those ~230-calorie meal bars, the ones with a 40-30-30 nutrient profile, washed down with coffee. Good brands are "Zone" and "Balance", with many flavors and ingredients offered.

      The 40-30-30 refers to the calorie breakdown, 40% is carb, 30% is protein and 30% is fat. I can ride 50 miles or so after this breakfast, with perhaps one snack of one or two hundred calories or so along the way.

      When I return, my muscles and liver have expended most of their stores of carbohydrate, and I can take in a good-sized meal without much of an appetite spike a couple of hours later, so my pancreas hasn't had to work so hard with the liver and muscles ready to soak up the carbs.

      I think the insulin and inflammatory responses become problematic when there is no other way for the body to assimilate the carbs other than to be dispatched as fat deposition in response to insulin activity that is brought on by an increases blood sugar.

      All this regulation of blood sugar is important to god health, and I should mention that caffeine by itself tends to stimulate insulin production, for better and for worse depending on one's "saturation level" of carbohydrate.

      The other half of this metabolism talk is the stimulus for the body to use fat stores as a nearly inexhaustable source of energy, but this is blocked completely when the insulin level rises above a certain point, so smaller meals with a balanced nutrient profile are the way to go!

      As we age, we need to do more to assist with maintaining this chemistry balancing act, as glands and organs become slower and less effective at maintaining a healthy level of regulation. Exercise every morning plays a big part of this balancing of one's metabolism and of maintaining a healthy weight and musculature, improving sleep and digestion, etc.

    • lucy82013
      lucy82013 LayneTX

      Posted

      Hi

      I am not in the US but I agree with LayneTX.

      .

      Lucy

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