Posted , 12 users are following.
I am 53 . I was diagnosed PMR 5 years ago.
I stopped the PRED. because of the weight gain. I have never been able to lose that weight. Naproxen and Alieve work for me. But long term use destroys kidney and liver. I am really bad now. So much pain. I bought CBD oil.
I need to know how much to take. Any recommendations?
0 likes, 4 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
nick67069 linda21770
Posted
HI Linda! I understand concern about steroids and weight, but there is a way to avoid weight gain. You have probably read about low carb diet that many patient with PMR adopt to. If you stick to it you can, perhaps consider to go back to prednisone. There is really no alternative and long term non-steroid pain killers would do more damage then prednisone.
I have not heard anyone using CBD only for PMR. People may use it in addition to steroids to reduce anxiety and relax, not as a substitute.
EileenH linda21770
Edited
Did anyone suggest cutting carbs drastically to manage the pred-associated weight gain? It also works to lose weight - even while still on pred.
EileenH
Edited
And PS - I have met no-one who find CBD oil does anything for the PMR although they have had benefit for other associated things. There is also no fix-all dose - everyone is different.
patricia63834 linda21770
Posted
Hi Linda
I would say explore more. I have just reconnected with an old friend who has had PMR for 5 years. She had a really difficult time in the beginning, much weight gain, much pain and fatigue. She found it virtually impossible to reduce the dose. At a desperate point a new GP recommended a private appointment with a rheumatologist who was great. He changed her meds to combination of methatrexate and pred... put her on his NHS list, monitored her regularly and she is now down to 2mgs pred, has lost a considerable amount of weight and uses CBD to help the pain. She went to a reputable supplier of CBD who helped her find the best dose. There is no one dose suits all .... does depend on individual and the strength of the oil. It may work or may not but it has to be worth a try.
I have been so encouraged by her story. She isn't on this forum.
Recognised its up to us to pursue answers and try different things.
Press forward - and give things a go.
I have made a private appointment with a rheumatologist - we are self funding at great sacrifice. But I need to see the bigger picture. We will go back into NHS. My referral from GP was in Nov and my NHS appointment came through for June. I couldn't wait 8 months to see a consultant.
Pred is not working for me - horrid side effects are really getting me down. Diagnosed in April last year. Had reduced to 9mgs then had big flair up - Dr recommended going up to 20mg for a month. Reducing now - down to 18mgs.
Stress is a big factor for me but life does not get easier and so its really hard to reduce stress.
But I am going to try whatever I can to ease this pesky condition.