Seeking alternative answers

[remission]

I am weening off of prednisone and have been using CBD/THC to help cope with pain and inflammation, thus far down to 3mg and holding as for as inflammation readings go,s o that's good. Has anyone else tried CBD/THC and what doesage or what are they using, is there anythingelse out there that has been working? I am willing to deal with some pain to eliminate prendisone frm my body.

[PMRpro Ambassador]

If you use the search box at the top right you can type in CBD and see a list of previous posts.

I think it is fair to say that the opinions are mixed, some find it does nothing at all, others find it helps with sleep or other problems but as yet, in over 10 years on forums I have heard no-one say they got off pred altogether.

[DorsetLady PMRGCAuk volunteer]

Hi,

There have been a few posts about CBD - and you can probably find them if you type CBD into search facility. Not sure it can be used instead of Pred, but some have found it helps some symptoms.

I would say your inflammation markers are good because the Pred is doing what it’s supposed to - controlling the inflammation - if you come off it they may well increase again.

To be honest there is nothing proven to control the pain/inflammation other than Pred, and much as nobody likes taking it, the alternative can be a pretty miserable life. Plus if the resultant inflammation is not controlled it could be doing your body a lot more harm than you realise.

I wish you well with your search for an alternative, but don’t disregard Pred completely, you may find it turns out to be a friends not an enemy.

[remission in reply to DorsetLady]

thankyou, could be just my vanity, I hate that my hair is becoming thinner and thinner and apart from that, I know the prednsione does get rid of the sumptoms but nothing to aid in curing the disease....I am hoping the cbd/thc which from everything I've read is meant to work with our body and inflammation, I am hoping I just need to find the right dosage.

[DorsetLady PMRGCAuk volunteer in reply to remission]

No, it’s not vanity... we all hate being on Pred at times....and I know, I was on it for GCA so at very big doses.

But after 18months of being undiagnosed and therefore untreated, it gave me my life back, saved the sight in one eye (other already lost through being untreated) - and yes there were some unpleasant side effects, but I had no choice.

I appreciate you are not in the same situation - but all I am saying is, it’s not all bad!

But do let us know how you get on, others will be interested.

[remission in reply to DorsetLady]

I will keep you posted, as we're all on a similar journey and hope we all make it ...I know the pred did give me my life back and all I hope is that I can find another way to maintain my mobility without it.....even if it involves some pain/discomfort.....shall be in touch

[Hidden in reply to remission]

I presume you mean you at taking cannabis rather than the cbd that is usually discussed here if it still has thc present. There is some evidence it may help inflammation but as I have followed things online it's important to go towards the medical versions. I certainly wouldn't give up pred to try it but might add it to pred. I think pmr Canada has mentioned a few times that it has helped (legal there)

Pred isn't a cure but it does ensure that inflammation that may damage the vascular system is controlled on a day to day basis. In that sense it manages the symptoms of pain and stiffness.

[remission in reply to Hidden]

I am taking CBD oil, but also THC, low dosage will helps with the pain and discomfort.....expensive alternative, but if it works, it's worth it

[Hidden in reply to remission]

Most of my hair started to fall out prior to diagnosis and pred. It was like it showed how bad I was feeling during the 1 to 2 years I was before diagnosed. If I have a flare I have a bit of fallout despite being at low dose pred. I tried to blame the dog for all the hair everywhere, but when I dyed mine purple it became obvious it was mine. 🤣🤣🤣

[katiemills in reply to remission]

Where do you live ? THC isn’t legally available in the UK - wish it was ! I use CBD oil and it definitely helps with my PMR fatigue but I wouldn’t give up my prednisone .

[PMRpro Ambassador in reply to remission]

You might be surprised but some of the so-called pred effects can be due to PMR. I had PMR for 5 years before pred and my hair thinned some and changed in texture - very probably due to inflammation affecting the blood supply to the scalp for some time, though I didn't realise it was a sign of GCA in those days. It wasn't the only thing I had that is usually claimed to be due to pred - mood changes, bad temper, weight gain ...

[Meggsy]

Wow! Diagnosed in August and already down to 3mg pred. That is a super fast taper. I do wish you all the best in your quest to get off prednisone. Let us know how you get on. 🌻