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Discouraged and frustrated

Posted , 7 users are following.

rocketman111
rocketman111

Hi All,

I'm a 65 year old male who was diagnosed with PMR in April of 2016. My rheumatologist started me on 15mg of prednisone and it was very effective. I quickly reduced to 12mg without incidence and then slowly reduced to 10mg over the last year. However, each time I would try to reduce below 10mg the symptoms would return so I have been holding steady at 10mg.

Unfortunately, the beginning of this year I was diagnosed with prostate cancer but was lucky enough to be at a stage where I had the option of choosing between surgery and radiation. I elected to go with radiation and finished up my course about 6 weeks ago.

I got through the treatment OK but over the last 2 weeks have noticed that my PMR symptoms have returned and that 10mg is no longer sufficient to keep me comfortable and functioning well. I have been slowly increasing my dosage by .5mg every 3-5 days in an attempt to find the new dosage I need to be at.

Needless to say, I am very frustrated and depressed over this new set of circumstances since, as I reduced my dosage, I was hoping to lose some of the excess weight I have gained over the last year and get back to looking and feeling somewhat "normal"  again.

Thanks for listening and thanks in advance for your thoughts.

0 likes, 10 replies

10 Replies

  • Silver49
    Silver49 rocketman111

    Posted

    I  am sorry to hear that you have had to contend with Radiotherapy as well as PMR. I don't feel qualified to say much about how it would affect your PMR but I realise that Radiotherapy can be very tiring amongst other side effects. I suspect the treatment will have had a knock on effect and my thinking would be to increase to 12mg to try and get to a level where you are comfortable. I can sympathise with you as regards the weight gain and the increase.doesn't help. Others have followed a low carb eating plans and have managed to lose weight. Someone more knowledgeable than me will be along soon to advise. I hope you feel better soon.

    • iellen32
      iellen32 Silver49

      Posted

      I agree! To find a level of Prednisone which makes you feel comfortable is usually the advice when things go wrong.

      I am exactly there with my Temporal Arteritis because I decided this time to follow the tablet the Rheumy gave to me - from 24 mg I send down to 2mg every other day!!!

      A disaster was the result. Now back to 24mg everyday hoping it wii work!

      Take care,

      iellen

    • iellen32
      iellen32

      Posted

      May be I had to add 5 mg to the 24 mg I was before this set back started-from 24 mg to 29mg a day.

      I will try to add just 1 mg more at a time and wait one day to see what happens!

      Quick tapering uses to be a disaster - my system does not accept.

      A suggestion will be highly welcomed!

      Thank you,

      iellen

    • rocketman111
      rocketman111 iellen32

      Posted

      I understand your need to get some answers to your personal issues but would appreciate if you started your own thread instead of hijacking mine. 

      Thank you.

    • Anhaga
      Anhaga rocketman111

      Posted

      Oh we all hijack each other's posts!  Forgive us.  We are poorly bunnies.

    • EileenH
      EileenH rocketman111

      Posted

      Sorry if you feel hi-jacked but the usual pattern on this forum (and the 2 other PMRGCA forums if it comes to that) is we have a conversation - and like all conversations they develop as people pick up on points in comments. I doubt it will change much.
  • whitefishbay
    whitefishbay rocketman111

    Posted

    Sorry to hear it.  I have no wise words other than it is a condition that makes you patient.  You cannot rush PMR.  If you are stressed (you would be) it agravates the condition.  Just wanted you to know I hear you and I sympathize.  I am larger than a small car these days(well I feel it) and I haven't had the prostate issues (as I am female).  Anyway thinking of you .  The experts will come along with consoling wise words.  Hang in there. 

  • EileenH
    EileenH rocketman111

    Posted

    Sorry to hear your catalogue of ills. Hopefully though the PC is now behind you. As has already been suggested - it may be the stress catching up now. At a guess you are now doing a lot more than you were during the radiotherapy - it makes you tired in itself. 

    You could try cutting carbs drastically - it has helped a lot of us either to lose pred-associated weight (I lost 36lbs)  or to avoid it in the first place. And to be honest - I think I would go back to 15mg and start over - you don't know whether the actual activity of the underlying cause of the PMR has increased so you could spend a long time edging up to find where you should be. It may even be above 15mg although many doctors suggest adding 5mg to where the flare happened - which would be 15mg for you.

    This too shall pass. It is just a blip and most of us have been there. Not, I know, that that is any consolation really.

  • kathy67492
    kathy67492 rocketman111

    Posted

    I have already read everyone else's good advice. I can only add that dealing with any "extra" issues, physically or emotionally can really be very difficult on top of PMR.

    i have had PMR for 3+ years and still struggle to accept the diagnosis...take the medicine!...and do your best. PMR may be with you for a while. Glad the radiation went well😊 Wish you well..

  • rocketman111
    rocketman111

    Posted

    Thank you all for your input.

    I am juggling 3 other issues on top of the PMR and it sometimes feels quite overwhelming trying to deal with it all. The ups and downs, as you all know, is quite a challenge.

    Friends and family members really don't get it so it's really nice to have a support group that can identify with what one is going through.

    Wishing everyone peace and good health !

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