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New to PMR, new to forum

Posted , 5 users are following.

FLpanhndlKen
FLpanhndlKen

I am a 66 yr old male with reasonably good general health, except for osteoarthritis, mostly below the waist!  My PMR journey began with a visit to an orthopedist in Sept. to discuss my knees and hips. He wanted to eventually replace both knees and right hip (left hip is a 20 yr old still-viable artificial) but also took note of significant inflammation in his X-rays. He asked some questions, and I described the mysterious pains ( to me) in my arms, shoulders, and stiffness in my hips. He sent me to the lab, which showed high CRP and SED rates, so he said I needed to see a rheumi. Couldn't get an appt. for 4 weeks, but in the meantime my GP, also seeing the labs, and noting no typical visible RA symptoms in my joints, postulated PMR and put me on 20 mgs. PRED. Results as expected. Rheumi confirmed diagnosis, and started on very quick reduction. In 3 wks, at 10 mgs, had my first flare, which was like I'd never taken anything. Rheumi said back to 15; GP back to 20. I went with GP and and a few days later, still with little relief, he cranked me up to 40, with good results. Now also on something for the bones, and working a much more gradual reduction.

I have found many answers on this forum already, for which I am grateful. Have a few questions, too. 1)does caffeine play any rôle in the delivery or efficacy of PRED ?  2) The rheumi also put me on Cymbalta for osteo pain; I'm sure if I can discern any benefit after 30 days (I also take 3000 mg Tylenol daily).. And experience with Cymbalta as a pain med?  Thanks. 

0 likes, 4 replies

4 Replies

  • tina-uk_cwall
    tina-uk_cwall FLpanhndlKen

    Posted

    Hello there, sorry to hear of your diagnosis, but welcome to the site nevertheless. You say that you have already gathered much information already by reading various posts - that's good as by the looks of things once again your clinicians appear to be little informed re the established treatment plans for this condition. Yo yoing up and down on the dosages in quick succession is not the way forward and as many on this site will confirm only hinders recovery. You will hear a lot on this site about the Bristol plan, my rheumatologist is sticking sort of closely to this plan and even I have experienced a flare up when attempting to reduce from 9 mgs to 8 mgs, and it's taken me almost a year yo get yo that level. No doubt soon the more experienced PMR sufferers will join in this thread, take heed of their suggestions and then return to your gp better informed, it sounds as if he has a lot to learn about this condition, as indeed mine did, before I then changed surgeries,. Now I have a very knowledgeable dr. 

    Sorry I can't help you re caffeine or the other drugs issue. But welcome and good luck with your recovery. Christina

    • erika59785
      erika59785 tina-uk_cwall

      Posted

      Something strange happened to me 4 days ago when I had my eye appointment and my eyes needed to be dilated.  The eye doctor used Atropine drops, I needed to do the vision field test etc which was stressfull.  I came home and had coffee -- not decaf. like I often mix with the regular, and 2 hours later I was in extreme pain with my right shoulder.  The left shoulder is being treated for not being able to raise my arm.  l was fairly incapacited --- went up from 15 mg Prednisone to 25 for a day.  The pain lessened --- then taking 20 mg --- and the pain is gione.  Something was the culprit.  Tomorrow I lwill go slowly down from 20 to 19 mg.  I am afraid to go right back to 15 mg where I should be for 6 weeks.

      This is my story......caffeine could have caused the flare. 

  • EileenH
    EileenH FLpanhndlKen

    Posted

    Hi and welcome - am I right in suspecting you are in the US? Florida?

    Many people feel that coffee stresses the adrenal glands - as a thoroughly scientifically based person I feel it depends entirely on your own experiences but I know some people have ditched coffee and feel they are better for it. 

    Cymbalta - yes, I know it is used for pain but I don't think I have come across it being used for osteoarthritis. Did the rheumy warn you about its potential to create dependance which leads to problems stopping taking it? It was developed for use in fibromyalgia and studies suggested it also worked well in diabetic nerve pain and other chronic muscular pain. Myself, I am of the opinion it depends on the source of the pain - if it is somaticism (physical expression of psychological problems) then I imagine it does work in chronic pain. If there is a physical cause for pain, as there is in osteoarthritis and PMR (swelling due to the inflammation causing pressure and shortage of oxygen to the muscles when being used) then I am less convinved of its value. If the Tylenol works - do you need more? I doubt the Cymbalta will help the PMR either.

    No wonder you had problems with that quick reduction. You shouldn't really need 40mg, it will achieve faster results in severe/neglected PMR I have no doubt but you will also meet with worse side effects which is the rational behind the recommended 15-20mg starting dose. A good result is found in most people after a few weeks at that level.

    Have you seen the links you will find by following this link:

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    Your GP may find the paper at the end of the final link in the first post interesting as it is aimed at him to assist him in managing PMR without the added complication of a rheumy who obviously doesn't come across PMR very often (or at least I hope he doesn't since he hasn't much idea). It provides a fairly good reduction plan - I support even slower progression below 15mg although if all you have is PMR then a speedy drop to 20mg would be a good idea.

     

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