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Thanks

Posted , 5 users are following.

julian.
julian.

just a thankyou to all who share their experiences.

I'm a fairly fit 65 years. Its my first anniversary for PMR! I was in Nepal when symptoms appeared. Just driven through Tibet. Part way through driving from UK to Aus. Excruciating pain, limited arm movement, limited walking. Struggled to climb into and out of cab. Involuntary screams - that isn't me. Vehicle maintenance took a hit. I couldn't even change a fan belt. The pain from contortions while stopping a near electrical fire still haunts me. No real opportunity to shorten the drive so carried on through India and Myanmar to Malaysia. A couple of weeks on a Thai beach, swimming every day, didn't help. No potential for reliable diagnosis. The local doctors were more used to typhoid and malaria. A bit scary really as independent travel can be quite demanding without additional obstacles.

April in Australia before diagnosis and relief. The day after landing. I've been lucky with doctors. Now down to 5mg/day pred. Under control as long as I don't do too much in the garden - three years of growth to tame. The change from 3 years continuous travel to a sedentary stationary life is interesting and not without stress. We needed a rest.

I'm also extremely independent. Not used to needing help.

I've fortunately avoided lengthy depression from the pred. Just a few short lows, and I've enjoyed the longer highs. Been surprised by sudden mood swings. Wondered at short term memory loss. And so on. I was offered some work which has kept my mind occupied, but at times its been a struggle to concentrate.

Reduction in pred has been appropriately slow. The pattern of reduce a bit followed by flare up for a few days could become an impediment. Lots of excuses for not reducing. But I think I'm lucky to keep finding a balance between pred dose and stable condition. Just enough stiffness, pain and numbness to remind me but not enough pain to inhibit me. Flare up in a different place each time. Last one I was unable to grasp anything due to pain in fingers.

I've always had chronic headache and in the last 25 years back and leg pain (leftover from op). The pred is masking other problems nicely. Another excuse for not reducing.

So I write up the line in the diary the night before and simply take less as planned, even though everything I know says don't. A bit of resolve needed.

I've had Hashimoto's Syndrome for a few years. But basically I'm relatively stable, steadily reducing the pred dose, living with the pred side effects. Still a long way to go, but getting there. My cup is more than half full.

Probably all "text book". But most of the understanding I have of my condition and management of the pred has come from this group.

So thankyou again for all the help. Happy Christmas to all.

4 likes, 6 replies

6 Replies

  • Oregonjohn-UK
    Oregonjohn-UK julian.

    Posted

    Well done Julian and congrats on the first anniversary. Have a great Christmas down under and a pain free New Year,
    • pat38625
      pat38625 Oregonjohn-UK

      Posted

      Yes well done, I am a newbie and am learning so much from people on this site like yourself.  Happy holidays.
  • Mrs.Mac-Canada
    Mrs.Mac-Canada julian.

    Posted

    Congrats on your anniversary!  It sounds like you've had an extraordinary adventure.

    Have a very Merry Christmas and a Happy and Healthy New Year.

    Hugs, Diana

  • caz22
    caz22 julian.

    Posted

    Hi Julian, interesting to read the above.  My husband and I were in Vietnam when he got the same symptoms.  Getting in and out of vans was hell, walking difficult and sitting even more so  I am wondering if you had any injections before your trip.  My husband had a bad reaction to the injections we had to have to go to Vietnam and also the doctor insisted on haviing a flu shot, which he had never had.  He had always been fit up until that time and its been a downward spiral since.  He was diagnosed with PMR in August 2012, then prostate cancer in June and then lung cancer in Sepember.  What a fun yea it has been.  My doctor wondering whether the medication for the PMR has hastened these things on because of the immune system.  Not a nice thought.  Anyway the lung isnt secondary so he has just been through chemo and radio and we are hoping that we will have a good result.  The care has been fanntastic.  However, I would be interested if anyone else on this forum has had a similar experience.

    Happy Christmas to all.

    • julian.
      julian. caz22

      Posted

      to be honest, in the scheme of things the PMR was just something else to contend with while traveling. Extremely painful but no real option but to carry on. Just concern about whether it would get worse. And relatively cruisy once medication arrived. There are so many so much worse than I.

      We (wife and I) were both like pin cushions - polio, whooping cough, diptheria, tetanus, hep A, hep B, typhoid, rabies, and probably some more the doc popped in. No side effects - we were very active clearing a big garden after a big flood before we left. All in Jan 2011. Set off in Feb 2011. We didn't take malaria prohylactics.

      PMR symptoms arrived in November 2013 (after about 2 1/2 years and 30 countries). Really difficult to find a cause. However, Nepal we stopped for a rest, instead of driving and sight seeing we set about cleaning the truck - first symptoms were as if I'd just done too much cleaning with right arm and hand. Masked by bus ride from hell - bent over standing and I suspect early symptoms of trapped nerve in neck which subsided.

      There was also an element of stress relief. We were on safe ground, not having to worry about where to camp every night. My history is of becoming ill when stress is released, never during. I just didn't expect PMR.

      And yup, the adventure really was quite something.

  • EileenH
    EileenH julian.

    Posted

    Don't rush to reduce - to be down to 5mg in a year is pretty good and 5mg is a low dose that won't cause a great deal of trouble.

    You're obviously an "autoimmune person" with Hashimoto's too - but you aren't doing badly to be down to 5mg in a year!!! It took me 5 years - and I'd had PMR for 5 years before the pred was started!

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