PMRGC

[northwesterner]

Started at 80mg Prednisone @ 57 yrs of age and now down to 4mg four years later. Can’t seem to get below that without experiencing pain all over and headaches. I would like to get off Prednisone all together and have thought about trying CBD oil. It is legal here in Washington state but I don’t know if it will help or make things worse?

[PMRpro Ambassador]

There are a few threads started recently about CBD oil. If you look at the top right corner of the page you will see the search box. Type CBD oil into it and you will get a list of all the posts with that in the title.

[SheffieldJane]

Hello northwesterner, I see PMRPro has pointed you towards discussions on CBD oil. You have done so well to reduce from 80 mgs to just 4 mgs. Are you very symptomatic? The latest thinking seems to be that these small doses of Prednisone are relatively harmless and without significant side effects. I would count myself a success if I got down to 4 mgs and would be fairly happy to stay there, if I had to. Do you get a return of GCA symptoms when you try to get below 4 mgs?

[northwesterner in reply to SheffieldJane]

Yes, I get headaches, lethargy and achy muscles all over if I go below 4 mg. I had to taper once every month first 80 to 60, then 60 to 40, then 40 to 20, after that each month was a decrease by 1 mg

[SheffieldJane in reply to northwesterner]

I feel like that attempting to go from 7 mgs to 6 mgs. The headaches are constant and sometimes severe. I worry that it is the start of GCA. I really hope you obtain relief from CBD oil. Prejudice against anything cannabis related probably makes science miss potentially, massive benefits.

[wolfgang237 in reply to SheffieldJane]

I have researched CBD Oil and Holland and Barrett now sell it at 2.75% strength in dropper bottles (240 drops recommended at 1 to 3 drops under the tongue per day / less than £10 per bottle so cheap relief ! ). I have just received my first 2 bottles and watching a recent TV programme on cannabis cures for fybromyalgia using CBD this may greatly help us poor people with PMR ?? Fortunately for me I was diagnosed with PMR August 2017 put on only 15mg per day reducing to 12.5 then 10mg over 3 months then reducing at 1mg per month so will be down to 6mg from March 1st and still have NO pain in upper arms ! Hope to come off completely once down to the 1mg and hopefully my adrenal glands will be producing my own corticosteroids successfully also so maybe CBD oil will be to good effect with no side effects . This stuff I believe is non addictive ( and not psychotic inducing tetrahydro cannabinoid part ) so all sufferers may well benefit trying some. Good luck everybody and I aim to try some very soon ! Wolfgang237

[northwesterner in reply to wolfgang237]

In the state of Washington it is legal and my daughter in-law just started working at a cannabis store and recommend “Rick Simmons” CBD oil. I am going to get some and will post more about it.

[PMRpro Ambassador in reply to wolfgang237]

Just remember that fibromyalgia and polymyalgia rheumatica are two totally different disorders with very different mechanisms.

[wolfgang237 in reply to PMRpro]

Yes thanks I realise that albeit fibromyalgia causes muscular pain problems too. I am just hoping I can come off steroids ASAP and maybe the CBD would be a helpful substitute for this drug. Time will tell. Kind regards. Wolfgang237

[ipsidipsy]

I too have had GCA for over 4 years and am now down to 1mg prednisolone. Since reducing from 4mg I, like you ache all over and have headaches (although not GCA ones, those are quite distinctive for me). I went to have my adrenal glands tested, thank goodness they are working ok. I explained the aches/headaches to the Endocrinologist who did the test and he was sure that it was prednisolone withdrawal as he had experience of many patients who suffered the same and who had taken prednisolone for a number of years. He also stated that the symptoms will pass.

He said to increase the prednisolone to see if the symptoms went although he left it to me to decide. I am of course reluctant to do so and at present am just bearing with it.

I hope this explanation helps and perhaps solves why you experience pain/headaches when reducing to low levels.

[PMRpro Ambassador in reply to ipsidipsy]

Which is why we emphasise on all the forums the importance of reducing very very slowly below 10mg or so. Too many people see it as the end-spurt and the end is in sight. Far from it.

[ipsidipsy in reply to PMRpro]

Totally agree with the slowly, slowly method. It took me 1 1/2 years to get from 10mg to where I am now. If it wasn't for this forum and people like you I wouldn't have had a clue about reducing slowly.

[northwesterner in reply to ipsidipsy]

I’m so glad I found this forum. Finding out that I have PMRGCA at 57 was a curiosity to many doctors and myself... but here I am! Four years of adjusting to yet another medical issue. At 37 I found out I had Raynauds disease, at 47 I had a pacemaker installed due to being found to have Neurocardiogenic Syncope... so approaching 67 I’m hoping to be healthier and not another medical issue