Whacky baccy!

[dahlia68]

My children, concerned that I am getting the best help for my PMR, have talked about trying CBD or cannabis-based products. I have an appt with my GP and will ask his opinion, but would like to know if any other sufferers have tried this alternative therapy. I was diagnosed in March this year, and I am finding it really difficult to return to "normal" activities such as walking and gardening, so I am willing to try some different treatments.

[piglette]

Currently it is unlikely you would be prescribed with cannabis based medication for PMR in UK. There has been discussions about CBD, cannabis oil, on this board but no one seems to be particularly enthusiastic about it for PMR although it does seem to help with sleep.

[dahlia68 in reply to piglette]

Thank you, piglette, for your helpful words. All the very best to you.

[DorsetLady PMRGCAuk volunteer]

As piglette says there has been much discussion about CBD on here over the years, and honestly there doesn’t seem to be much to say it helps with PMR as such.

I may help with some of the add-ons of PMR but there is some concern it may affect the how the Pred actually works, so it certainly needs to be discussed with your doctor.

..and you have an systemic illness, so it’s unlikely you can return to ‘normal” activities whilst the PMR is still active. You may need to adjust your (and your childrens) expectations a little, life does go on, but necessarily exactly as before

Have a look at this -and in particular the link to pacing -

healthunlocked.com/pmrgcauk...

When you read it, you may be able to explain it better to your children….it’s not a quick fix, and they need to understand that. Sometimes it’s difficult for them to appreciate that fact.

This book might help - read.bookcreator.com/B0azEx...

[dahlia68 in reply to DorsetLady]

Thank you, Dorset Lady, for your very helpful reply. Yes, I didn't understand quite how long-lasting PMR can be, and I am thankful for the support of my husband and my GP. We have worked out a daily routine which, though a little humdrum, suits us well as long as I don't have a "good day" and then overdo things (very tempting!). I will talk to my GP about my medication and CBD, but from all your replies it doesn't sound hopeful. At least I can tell my children (who are now in their 50's!). I know they mean well, but it is difficult sometimes to realise that there is very little I can do to help myself, other than follow the wonderful advice on the website. Thank you again.

[PMRpro Ambassador in reply to dahlia68]

"there is very little I can do to help myself"

I disagree - there is an awful lot we can do to help ourselves. Diet, moderate exercise and appropriate pacing and resting often means life isn't that different. You learn to abandon the fluff of life - a bit of dust isn't the end of the world but my cleaning woman for just 1 hour a week makes such a difference. She gets to do the things I struggle with like the vacuuming and changing bedding.

[PMRpro Ambassador]

As has been said - it has been discussed quite a bit in the past and I don't think anyone has found it to help with PMR itself. Some people have found it has helped them what might be called "add-ons" - PMRCanada is one and she may reply to you. But it won't be available for you as medical use in the UK - so where you live is quite significant.

Read DL's recommendations and you will maybe understand why you aren't back to "normal". It is a chronic systemic autoimmune (a/i) disorder with no cure - just as lupus or rheumatoid arthritis have no cure. You learn to adjust and live with it. Unlike most a/i disorders PMR does burn out and go into remission for the majority of patients - but it takes years not weeks or months and there is no shortcut.

There is another book: PMRGCA - A survival guide by Kate Gilbert, a founder member of the charity and this forum. It is an honest account of her life with PMR and worth getting, available on Amazon and as an e-book. Your family might be peruaded to read it. There is also a DVD called "You are not alone" and there is a link in the FAQs I think to it on YouTube.

[seamaid in reply to PMRpro]

I also bought this book for my children and at last they " get it " which has made us all happier, I still dip into it on occasion and it helps being written in such an easy reading manner . so second what PMRpro has said .

[Shiv14]

Hi, I take it late afternoon and find it helps get me to the end of the day. It’s definitely not a replacement but just gives me additional assistance and has helped me continue tapering without too many bumps. I think no two of us are the same, so what helps one person may not work for you.

[Iamfedup]

The day I was diagnosed my daughter came round with flowers and my son with CBD oil recommended by the Health Shop! Unfortunately on researching it it clashed with the Lansoprosal I was advised to take

[agingfeminist]

there is absolutely no evidence that cannabis will help. It has only demonstrated medical efficacy for very few conditions...and nothing that even remotely relates to an autoimmune disease. On the the other hand using it does have associated risks. I do share your frustration at not being able return to normal...whatever that was. It is almost 3 years since my PMR began. There has not been one day that I have not felt ill...from general malaise to deathly fatigue. I have managed to work every day (online) and only then do I forget about how crap I feel. BUT I am alive and looking after myself and my home and my garden. If this is the best life offers me, I'll say "thank you" and trudge on.

It feels like an endless journey but for the vast majority of us there is an end to it...sending you every good wish for your journey.

[dahlia68 in reply to agingfeminist]

Thank you for your very helpful reply, which meant a lot to me. I can remember feeling a little bit impatient with my own Mum when she couldn't do the things she used to, I think our children (who are now in their fifties!) don't like to see Mum or Dad getting older and perhaps a little frail. My husband and I have sorted out a routine between us, and as long as I don't overdo things, I can cope with the painful episodes. I always remember that old saying: "Man makes plans, and God smiles." How true! Thank you again, and I wish you all the best.

[PMRpro Ambassador in reply to dahlia68]

When they see us getting old, it brings them face to face with their own future and mortality. Not to mention the possibility they will have to take over as carers for you instead of you caring for them ...

[agingfeminist in reply to dahlia68]

I know a slightly different version...man makes plans and God laughs! all good wishes to you

[BabyRuby1]

I tried CBD. Did not work for me. I also tried every natural inflammation supplements like Turmeric etcOnly prednisone worked. Started on 20 mg a year ago now on 3.5. I’m lucky I’m doing good on 3.5 but my legs still are wobbly and weak and my balance stinks

[winfong]

Guess I'm the odd man out. I've had a lot of luck with it - CBD, Delta 8. HHC ... It doesn't eliminate the pain, just makes it easier to deal with. Very useful for insomnia & anxiety. I'm still trying to work with PMR/GCA/LVV, so have a good bit of the latter. Being in the US makes all this a lot easier.