Living with Poly for 5 1/2 years now

I came down with poly almost 6 years ago. It took the doctors in my rural area almost a year to diagnose me. Finally, an older rheumatologist told me that I was not too young for this which at the time I was only 55. Other doctors told me I was too young. He prescribed a higher dose of prednisone. I started coming off of it and each drop was painful. I decided if I ever got off I would not go back on it or continue even a small dose. The doctor was furious and told me he did not need to see me again then. I researched different vitamins and tried to get healthy again. I find the B vitamins help. I am currently only taking B12 and B6 but I have added cbd oil twice a day. Currently, I am experiencing pain in my knee and swelling again. Use a cane in the morning to get around but then it gets better with movement. Not sure what to think. Cramps sent me to the magnesium bottle last night. It helped and I slept wonderfully. Still not sure about the cbd being helpful. Anyone else try this. I've read it's suppose to be wonderful for inflammation.

[DorsetLady PMRGCAuk volunteer]

Lots of people have asked about CBD / just type it in search box and you’ll pull up loads of posts.

Think the jury’s still out on the effectiveness of it though - but I guess if you don’t try, you won’t know whether it’s good for you.

You’re not too young, but as you’ve had such a difficult time one does wonder whether you do actually have it - and/or maybe you haven’t adjusted your lifestyle to accommodate it.

[Soraya_PMR]

“ I started coming off of it and each drop was painful.”

Out of interest what was your taper. How long were you on pred?

[Hidden in reply to Soraya_PMR]

I was on prednisone for a couple of years counting the time I came down from it. I came down 5 mg at a time. Hated the readjustment period.

[Soraya_PMR in reply to Hidden]

No wonder each drop was painful! Your body would have literally been screaming with steroid withdrawal pain.

So.... one year with symptoms, two years on pred and three years since you stopped pred?

[PMRpro Ambassador in reply to Hidden]

Thought so - no wonder you felt awful at each drop! 5mg at a time may be fine above 20mg/day, although a lot of people struggle, but below 20mg it is far too much. In tapering no reduction should be more than 10% of the current dose so the steps should get significantly smaller as you get to lower doses.

[teesher]

Hi there, sorry to hear you are having such a tough time. I also have knee pain and swelling but through this forum heard about Flexiseq. It has been great and really helped with my knee pain/stiffness. It is applied externally and is ok with steroids. I order it online. Hope this little snippet helps.

[Hidden in reply to teesher]

Thanks. I will give it a try.

[stellafmdm]

I take my dose of CBD in the morning before I get up and find it helps the 'watery' muscle syndrome, not a cure but the said muscles are usually much better after the CBD