I'm horrified to hear that you are still afflicted after 4 years of treatment.
I started with 15mgs for one month which finished three days ago - I'm now on 10mgs and have some pain
I do Feldenkrais exercises most days but am rather lazy about walking at this moment because the weather in Europe has been so cold.
I can thoroughly recommend Feldenkrais floor exercises on CD's which are particularly gentle exercises for people who have any sort of pain. Cheers
Hi Tony,
I laughed at your dollar signs. Over 4 years I have tried so many alternate treatments, along with the regular rheumatologist. My husband is still working and has never complained, as I looked for a quick cure. But also I needed to feel that I was involved in looking for help and i wanted to be rid of the pain, and reduce drugs asap.
Did it all help???? It helped me get through this bloody PMR. Ater 4 yrs, down to 3 / 2 1/2mgm pred alternate days and methotrexate weekly.
Just be sure to tell your rheumy all the alternates you are taking. Usually OK, but much better to keep them in loop. Not sure about the calcium. Think you could have a bone scan first, and see if it is really nesessary.
Your wife is obviously trying to help you as you may not be as easy to live with as previously.
Hi Tony and Zali!
I am going to sound a bit stilted because this box does not want to accept apostrophes for some reason! I would still go for the calcium since cortisone can cause brittle bones and even full-blown osteoporosis. My German docs prescribe it for me and I take it faithfully although of all the stuff I take it tastes the most horrible! Gritty lemon, gritty peppermint or gritty, sticky artificial-banana-bubblegum flavour. Yuk!
Having said that I will swallow anything that makes me feel better. I am "only" 52 and have a full-time job and feeling ill is something I cannot afford. If it starts hurting again, I up the pred until it stops.
Keep smiling!
Best,
C.
Hi! Sydneypeaches - Seeing as how we are all in this together, ONE of us with PMR will be able to help others at some time. There's no end to the resourcefulness of human beings so I shall continue to search along with everyone else. I am wondering if those that feel as though they are cured do not bother to frequent this blog. They probably feel that they do not need any reminders of what once was an awful time for them.
I think you are fantastic working full time as well as coping with this disease. You do sound as though you are on fairly low doses, so perhaps you are pretty close to good health again. I hope that your work is pleasant enough to keep your mind on something other than your pains. Cheers
Dear Tony,
Oh it was not me that continued full-time work. I do not know how those with PMR do it, unless they just keep up a higher dose of prednisone. They are amazing.
I was just 55 on diagnosis, and working as a casual community nurse in Sydney. I could not keep it up, but then on the other hand, I think i was so shocked to get this damn PMR , that I kept trying to reduce the dose and try alternate treatments. Basically I found I was hibernating(as I call it), not wanting to go out, cried if someone spoke to me, and many days could not get off the floor, when I would try to do some exercises. Basically I was not telling my rheumy how bad I was, thinking I was just imagining it, and just depressed. Oh those first few years were awful.
But smiling now.
Thankyou for the welcome, candle in the wind. I tried to reduce the prednezone too fast and have been somewhat up and down on the dosage looking for that balance if there is one.Should i be taking calcium everyone says I should but the Doctor did not mention it soI have not?Dadddy ...your own cortizone does not start kicking in teill you get to about 5mg. (that;s what out bodies produce)
Sydneypeches my dogs also kept me sane during my PMR. I am off pred and feeling pretty good. Be careful to take plenty calcium, 5000iu D3, K2 and Magnesium though.
I now have osteoperosis (I am 58)
Hi William,
Dr's are not real big on supplements and/or vitamins. They'd rather have us come in for an appointment - pay them - and get a prescription
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