CBD: Hi, Wonder if any of you can help. I have... - PMRGCAuk

PMRGCAuk

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CBD

Jenda13 profile image
Jenda13

Hi, Wonder if any of you can help. I have PMR now for nearly 2 years. Started on 30mg of Prednisolone and eventually managed to get down to 6 but really feel that the steroids are having not so much effect now as in a lot of pain, with everything hurting. Also have neuropathic pain in my leg following nerve damage so am on Gabapentin which again is not having that great effect. Has anyone tried the legal form of cannabis and has it helped. Has anyone with my problem benefitted from CBD?

31 Replies

Hi Jenda13, see the posts in a column to the right of your screen, they are all discussing the use of CBD. I think it’s mixed, you can only try.

Hi Jane, That was a very quick reply. Thanks. Just spent the last 20 minutes reading all the comments. As you say, mixed comments. It seems mad taking all these meds and not feeling any benefit. Read one comment from someone who called Pred "poison". Surely CBD cannot be any worse. Seeing GP for usual check up this week and will see what he thinks about trying CBD. Will let all know.

JoanJo profile image
JoanJo in reply to Jenda13

Hi Jenda13- my experience back at PMR diagnosis time (March 2017) was that I jumped down from 20mg Pred to 15 after 2 weeks, I was fine, but then when my rheumatologist moved me to 10, I was miserably achy all over my body. So after putting up with weeks of pain, I told her my situation, and she moved me back up to 15 mg and had me taper by 1/2 mg Pred every 2-3 weeks , which worked much better.

During that flare-up (while on 10 mg), I had asked her about medical cannibus, but she wouldn’t even talk to me about it, and It seemed to be a taboo subject for her. However, she’s been quick to Prescribe Methotrexate chemo drug and Hydro- something (anti -malaria drug) “to taper Pred more quickly”. I’m refusing those drugs due to the many possible side effects. I know others on this forum have had good results from such meds, but I chose not to take them. I do not see why cannibus is so taboo when it has helped so many curb seizures and pain. I do understand that the PMR inflammation itself needs to be addressed, and perhaps cannibus will “mask the pain” so that you may not know you’re in a flare(?) I’m just speculating as to why it’s not prescribed more— other than legality issues, depending on where one resides. Right now, a year and 4 months after my PMR diagnosis, without taking those “helping-the-taper” drugs, (methotrexate and hydro-whatever), I’m at 6 mg and feeling GREAT. I’m feeling as good as I was when I was on 15mg a year ago. Last fall/early winter (2017-2018) I had a couple flares around the stressful time of my Mom’s hospice and death. So had to jump up to 9 once and 10 another time to knock out the inflammation, but resumed the slower taper each time (1/2 mg every 2 weeks). During another stressful/busy April into May 2018, I listened to my body and just stayed at 7 mgs Pred for 6-7 weeks because I felt like a reduction of even 1/2 mg would cause me to flare. Glad to be at 6 now and feeling fine!

So I am thinking HeronNS is right about your having too quick of a taper. (Just took me longer to say it😊)

I am wondering how to access CBE info which Jane said is “on the right side of screen” using my phone format (I don’t use a computer so have a different format on my Apple phone). I’d like to peruse the comments by others. I just need a navigation hint, if anyone could offer that.( I was told once, but it’s been so long since I visited this site. )

It’s good to be back at this forum and I really appreciated the more recent yogabonnie/Rimmy/scats

Holly/Heron/PMRpro/Rose dialogue and totally agree with all of your assessments. Thank you so much for that input.

JoanJo

PMRpro profile image
PMRproAmbassador in reply to JoanJo

"I’m feeling as good as I was when I was on 15mg a year ago"

Which is the idea! You got there by tapering is a sensible way - which is what we keep saying on the forums. Slowly does it - and it has no potential side effects.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to JoanJo

Hi,

On iPhone - there should be 5 boxes across screen under main PMRGCA header - Home, Posts, Polls, Members, More.

Tap More - drop down box gives you choice of About & Search.

Tap Search - then you type in CBD oil, or whatever - brings up all posts.

JoanJo profile image
JoanJo in reply to DorsetLady

Thank you for the site navigation help, DorsetLady.

It worked and I’m reading up on CBD, which I incorrectly called CBE, not familiar with the cannibus acronym. I am being educated now!

HeronNS profile image
HeronNS in reply to JoanJo

CBD is short for cannabidiol, one of a large number of substances in the cannabis sativa plant. The Wikipedia article is quite interesting.

en.wikipedia.org/wiki/Canna...

Stella3 profile image
Stella3 in reply to JoanJo

Yes, you must lower your prednisone very gradually. I have gone down to 6mg. However, when i went from 7mg to 6mg for a week I was on 6mg one day and 7mg the next. After that for a month I am on 6mg, before doing the same with 5mg and 6mg. Good luck and be patient.

Of course you must try what you think will help you. But I do have a comment. You say you are taking 6 mg and feel the steroids are not having much of an effect now as you have a lot of pain. Other pain meds aren't helping. May I respectfully suggest that the reason your dose is not working may very possibly be because it is not enough to manage the level of inflammation your body is producing. How have you tapered over the past couple of years? Were you ever free or nearly free of pain? When you tapered did you do so relentlessly, even if you felt some slight return of PMR niggles, or did you wait until your symptoms resolved before tapering further? And how big were the steps down - 2 mg? 1 mg? .5 mg? These and other factors all play a part in how effective a dose of prednisone is.

Nevertheless I'm sure we'll all be interested to find out if CBD does help you.

By the way, I do not think pred is poison if used wisely. We do have to do what we can to improve our health, however. Can't rely only on the little pill.

All the best.

Hidden profile image
Hidden

I started taking CBD oil two weeks ago on the recommendation of a friend and I think it is helping. I haven’t told the GP or the rheumatologist as I feel sure it will just be dismissed out of hand. I have had PMR now for nearly 4 years have been down to 2mg and back up to 10mg still now on 8mg. Have never been pain free and have osteoarthritis in both knees and waiting for replacements. I am sick to death of pain and being given stronger and stronger painkillers so as far as I’m concerned a bit of natural plant extract is not going to do any harm!!! I have been told by the surgeon that I must try and reduce my steroid dose down to 5befor the operation but there is absolutely no chance!!!

PMRCanada profile image
PMRCanada in reply to Hidden

I’m in the same boat as you Pattinso. I have PMR and knees that require likely surgery. I meet my Ortho surgeon end of August to discuss options and I hope he will agree to do treatment, whatever it is, while I’m on pred.

PMRpro profile image
PMRproAmbassador in reply to PMRCanada

It is worth asking around if your first surgeon insists on a low dose of pred before surgery. Some are happy to operate at higher doses - after all, they do like you to mobilise post-op and if PMR flares that isn't going to be easy!

Hidden profile image
Hidden in reply to PMRCanada

Hi PMR Canada. An update for you. I have now been given a date of 10th August for my knee replacement. Am on 8 mg pred and originally surgeon said reduce as much as possible. However I have now had all my pre op assessments and no one has questioned the fact that I have PMRor that I am on 8 mg of pred. The anethatist in fact told me not to even try to reduce any further before the op as he said he would rather have me stable and well. He said that if I had gca and was on 40 mg he would be asking me to try to reduce but had no problem with me being on8 mg. can’t wait to have the op over and done with now. One less bit of pain to cope with. Other knee needs to be done a few months later!!! There is light at the end of the tunnel!

PMRCanada profile image
PMRCanada in reply to Hidden

Thanks for the update Pattinso. Hope all goes well on the 10th and wishing you speedy healing from the knee surgery.

Sure hope I'm as fortunate with my future knee treatments/surgery.

A couple of people suggested that CBD oil may be beneficial to reduce my pain pre diagnosis. However if it was legal here in NZ & if I had taken it, it may have eliminated the GCA pain with the possible terrible consequences.

PMRpro profile image
PMRproAmbassador

You are hurting because you have reduced to too low a level - you were looking for the lowest dose that gave the same result as the starting dose, you were not reducing relentlessly to zero come what may. You need to go back to the last dose where you felt good - or you risk having a proper full-blown flare as the inflammation builds up again to where it was originally and you may need to go back to a much higher dose to manage it.

Pred doesn't cure anything - it is a management medication, controlling the worst of the effects of an underlying autoimmune disorder until that autoimmune problem burns out and goes into remission. Less than a fifth of patients get there in under 2 years and the average duration of PMR is 5.9 years with some 75% of patients having got off pred in up to 4 to 6 years. This isn't a short lived problem - it is a long haul flight I'm afraid.

Not sure if its relevant, during my 20's I managed to consume several times my own body weight in cannabis, I can honestly say I never suffered any PMR pain at all! Mind you for some strange reason my memory of my 20's is rather patchy to say the least :-)

PMRpro profile image
PMRproAmbassador in reply to Mike1964

I can't imagine why... :-)

HeronNS profile image
HeronNS in reply to Mike1964

Well you know the old saying, if you remember the 60s you really weren't there ....

Mike1964 profile image
Mike1964 in reply to HeronNS

Blimey Heron, remember the 60's, I'm feeling a bit peckish and can't remember if I had lunch or not! (Hope that's nothing to do with my 20's! :-)

PMRCanada profile image
PMRCanada in reply to Mike1964

😉

Thank you for all your comments and advice. I have to say that I in no way reduced quickly as from at least 15mg I was reducing 1/2 mg a month following the slow method. I even took a print out to my GP to show him what I was doing. Unfortunately I have felt since the beginning when I was first diagnosed that I queried PMR as the steroids really did not touch the pain in my limbs so reducing from 30mg to 15mg there was no change in my symptoms. I then started to reduce slowly by 1/2 a month and reached 4mg but then feel that the pain became much worse so GP told me to go up to 6mg. Still feel the same amount of pain so I feel what is the point in taking Predisolone and other awful chemicals over taking something natural like CBD oil. GP prescribed Alendronic Acid in the very beginning and after reading the information sheet returned it to the surgery. As JoanJo also said, taking Methotrexate can hardly compare to a natural product. If that is not bad for you, what is. I agree with Pattinso that I also have to take extra pain killers to help with the pain. As I say, I will speak to my GP on Thursday and report my findings.

PMRpro profile image
PMRproAmbassador in reply to Jenda13

Do those extra pain-killers have an effect on the pain? If they do - that does add to any suspicion that this isn't or isn't just PMR.

Sometimes there is some benefit but not altogether pain free. Something stronger might be of more help but I am so reluctant to take too much. I think PMR is such a hard thing to diagnose and have never felt totally happy so the thought of going on taking or increasing the dosage of Pred is so alien to me. Roll on Thursday and I can have a good old chat with my GP. I think this talk of CBD has really made me rethink my diagnosis.

Forgive me if I am thick, but when I read of members who are using CBD oil, I am puzzled. On UKTV, a British Mother was arrested, I think, at an airport for smuggling in CBD oil/plant from USA, for her epileptic son. She won the right to bring it in, but she is appealing/demanding that it is available for all sufferers. How then are people already using/buying this product? Sorry, I don't get it. Can blame Pred, back up to 20mg, for breathlessness, and this week's heat isn't helping.

Rugger profile image
Rugger in reply to karools16

CBD oil has had the psychoactive part of the cannabis (THC) removed, so it is on sale in the UK quite legally - online and at 'Health' shops.

karools16 profile image
karools16 in reply to Rugger

Oh, I see, thanks very much. Just couldn't figure it.

PMRpro profile image
PMRproAmbassador in reply to karools16

But hers had the TNC component still in it - without it apparently it doesn't work for the epilepsy. Hence the reason it was confiscated. She had announced she was bringing it in and Border Control took it. She had got it by the boy being enrolled in a clinical trial in Canada. She brought 6 months worth - and has been issued with 20 days worth...

karools16 profile image
karools16 in reply to PMRpro

Thank you. I thought I had only half the story.

PMRpro profile image
PMRproAmbassador in reply to karools16

I have only gathered the majority by watching several days of Sky News including an interview with the mother!!!!

Good Morning

I have been using cbd oil for about 6 months. I use the liquid, gel tablets and a rub on.

One important thing to know is it must be taken with a good oil and separate from all other meds. 1-2 hours. I take about 1/2 tsp of coconut oil and then take my cbd.

At first I didn't have much luck. Then I found out about the oil and it works so much better. I am taking 2- 500 gel tabs twice a day also rubbing the cbd rub on my very sore neck. Helps a lot.

My Dr. won't prescribe it, said it is too much of a hassle to become a prescriber for the actual cannabis and in Ohio it is mostly prescribed by oncologists for their cancer patients.

Good Luck

Lin

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