Cannabis Oil and Post Shingles

[Louisa1840]

I am really not sure where to start? I hope this won't be too long? Apologies if so..

I have had PMR for 8 years next May. I tapered down to less than five mgs of Pred reasonably easily though not without flares along the way.

Then around four months ago, I had a dose of shingles. It wasn't too unbearable as I caught it early and went on antiviral meds. Soon after the worst of the shingles was over I became unbearably stiff which quickly seemed to affect my left leg making it almost impossible to walk.

I tried acupuncture which made it worse and Physio with little effect.

About this time friends were recommending cannabis oil. It had helped someone with fibromyalgia and someone with MS. I had to apply to the doctor who practices a half hour's drive from here and , after a 2 week wait, was accepted as his patient. He is very caring and is also a GP.

It was very expensive to buy the vaporizer and the first lot of oil and dried flowers which I vape twice a day. I administer the oil sub-lingually also twice a day.

I've been using the cannabis products for around 3 months now and, apart from making me sleep like a baby which is wonderful, I have noticed no improvement in the stiffness in my body or the left leg. The doctor says it could take up to nine months!!

The left leg is no better and when I first get up in the morning I almost have to crawl. I had dropped my pred to half a MG. which is the lowest I have ever been.

The doctor claims that cannabinoid is 9 times more anti-inflammatory than prednisone. He has sent me for an X-ray and a scan to see what is going on with the left leg but I can't get into radiography until just before Christmas (yes, it's as bad here in Australia as in UK!)

I have hardly been able to walk for the past month and it has really got me down as I am an active person. I operate an AirBnB and have a large garden.

I was SO down today I decided to up the pred back to 5 mgs and see what happens. So far nothing but it's only been a few hours.

I am not experiencing any classic PMR symptoms except this extreme stiffness but not in the classic PMR places.

Fairly soon after I was diagnosed with PMR I saw a rheumy who said that PMR always layers itself over an existing condition and that in my case it was inflammatory arthritis. I simply don't know what I am dealing with: post shingles syndrome, PMR or inflammatory arthritis?

I realise this is complex but any thoughts you good and knowledgeable people please?

[PMRpro Ambassador]

"I saw a rheumy who said that PMR always layers itself over an existing condition"

Rubbish - it may be the presentation for a few forms of inflammatory arthritis but it is a perfectly reasonable disorder in its own right and he wants to read some of the uptodate work done by his colleagues - some of whom are in Australia. I've had PMR a very long time - and there is absolutely no sign of any inflammatory arthritis, not even signficant OA which one rheumy in the UK claimed some 18 years ago about pain that turned out to be PMR.

As for your THC supporter - he's making money from it isn't he? I'm really not up on its use and what is what, I only know that my doctor at the pain clinic here says it isn't anything like as good as it is made out to be for pain! And one lot of research looking at the antiinflammatory effect of marijuana concluded

"Though marijuana and lower CRP levels were initially associated, the effect of marijuana use on CRP was later explained by gender, BMI, and anti-inflammatory medication use. This suggests that marijuana use does not confer an anti-inflammatory effect and recency of use is not relevant."

Though to be fair - PMR is rarely as unilaterally localised as you describe so I would suspect there is something going on and I am not impressed that an x-ray wasn't done months ago.

Which side/where was your shingles?

[Louisa1840 in reply to PMRpro]

The Shingles were on the right side of my lower spine curling round to the front.

[PMRpro Ambassador in reply to Louisa1840]

I'd wondered if the shingles was in a nerve supplying the left side, so that doesn't really fit does it. How very strange.

[Louisa1840 in reply to PMRpro]

Yes, I'd wondered the same, Pro but, as you say, it's on the other side! I've now upped the pred and I'm treating it like a flare. There is much relief from the general stiffness though the knee is problematic. All shall be revealed in the XRay next week - maybe?

[PMRpro Ambassador in reply to Louisa1840]

Maybe, or maybe not ...

[Hugh_Marc]

so sorry to hear of your recent troubles Louisa.

A chap I know swears by cannabis oil, he has chrohn’s & claims he’s pretty much free of it now thanks to the oil.

However when I looked up the contact he gave me, the guy runs a vaping lounge which is definitely not my thing.

A couple of days ago a former work colleague gave me the name of a nutritionist who specialises in herbal stuff.

I’ve read lots about herbal alternatives to pred but they’re only available in America & they won’t post to Ireland.

If I have any success or advice from the herbal person I’ll post it.

[DorsetLady PMRGCAuk volunteer in reply to Hugh_Marc]

You just want to be a bit careful about herbal alternatives -for anything - they arent strictly regulated nor trialled like medicines - and you don’t always know what is in them…

[Louisa1840 in reply to DorsetLady]

These cannabinoid products are strictly regulated by our Therapeutic Goods Act. These are not buy online but very carefully monitored by doctors.

[Hugh_Marc]

definitely.

I’d want to see a full ingredient list before touching them. There are a few cranks about (maybe more than a few)

[Louisa1840 in reply to Hugh_Marc]

See above....

[Twopies]

this may not be relevant but the top marijuana seller in my city says he will not sell you any if you are on prednisone.

[Louisa1840 in reply to Twopies]

Yes, I've heard that. I think because I am on a very low dose of pred it's OK.

[allofaquandry]

there was something written here 5 years ago by Linny3 about this that you may find helpful:

'Taking Prednisone with cbd oil?'

[Louisa1840 in reply to allofaquandry]

Thank you. I'll follow it up