Hi all!!!
Watching my grandmother deal with gca at the moment and it's awful.
This is the second time round and it's only being controlled with a large dose of steroids.
I have heard good things about cbd oil treating inflammation in different conditions.
I have also seen people speculate and say they know someone who uses it for other conditions. But I am very interested in knowing if there is any first hand experience with it?
Thanks!!!
Kathleen
Unless your grandmother is offered Actemra, tocilizumab, which is very expensive, there is no treatment other than prednisone (prednisolone) for GCA. It's possible that other substances can help control inflammation generally, and maybe make her recovery a bit easier (we all hope for this) but there is nothing which will replace pred. I, too, would like to know if anyone has found CBD helpful.
What is cbd oil?
I can only speak for myself for there has been a couple of positive posts on it but no relief with CBD oil for me in my very recent experience. Best wishes to you & mom. Thank God for Prednisone in my case.
Hi. I was diagnosed with pmr sept 16 and started on 15 mg now on 5 mg of pred.also started taking cbd from holland and barrett and i have found it very helpful.
A friend of mine was on high dose steroids for something completely different and started on the oil. It worked wonderfully for her and she is off all steroids and pain medication, but it wasn't GCA/PMR. It would be interesting to see if there is any feedback for it's use in GCA. I somehow doubt it.
I am taking CBD oil and have been since end of july. Firstly may I say I am doing this with the backing of my doctors. I decided to use the oil to see if I could come off the opiate painkiller I was taking for my osteo arthritis. I was able to do so within a week! At the time I was taking 30mg of Pred for PMR. I didn't notice any difference in the pmr pain but what I did notice was a huge improvement in the fatigue and gastric side effects of Pred. I have continued on with the CBD and currently on a slow reduction of Pred to 19mg. I only need the occasional paracetamol for pain now, no opiates. In the evenings I take a different CBD strain to help with the insomnia i sometimes get. I also have a vape pen which I can use for breakthrough pain.
There is an excellent supplier/manufacturer of CBD oils/pastes in the UK. Their products are not expensive. Their oil starts at £7.95 per 10ml bottle of £15 per 5g of paste. There are more expensive products too but they are willing to send samples with an order so you can find what suits you. I use 2 drops 3 times a day and found the bottle lasted over 2 months. Check them out online CBD Brothers.
I have also made my own CBD balm which I have been using on my swollen knees and my hubby has been using in his legs for night cramps. Seems to be working well. Have a few pots to a few friends who are all being positive about it.
My inflammatory markers remained high for the last blood tests but it's probably nothing to do with the pmr as I had a kidney stone at the time!
I wouldn't advocate stopping your conventional meds for CBD but it's worth a try especially if like me your codeine receptors do not work so that drug is useless. Maybe your cannibidiol receptors might work better! I would speak to your gp or rheumy first but like with pmr you will probably find more info out online.
You must remember to leave a two hour ago between conventional meds and CBD when taking it orally so that your liver can break each thing down and you don't stress it. You can use balm or vape without the gap as this is a different way of metabolising it. You cannot overdose in CBD but it's best to start low and slow. It can take a while for it to start working and everyone is different it's like the medicinal equivalent of pmr☺
If you need any more info please ask and I will get to answer from what I have researched. I am no expert my background is in exercise teaching and alternative therapies but I have done a lot of reading around this subject.
S4andy. Would you mind telling how you made the balm. Would like to try on my knees .Thanks
Where are you Kathleen? Actemra/tocilizumab has been shown to be useful in GCA and I would imagine that if this is your grandmother's second episode she may qualify to try it.
Although CBD oil may help with PMR I would be less convinced about its role in GCA. But I suppose adding it to the pred wouldn't do any harm.
Hello All,
Lots of interesting stories on CBD in relation to pain, epilepsy, etc. However, a word of caution regarding products. Recent reports regarding label inaccuracies for both edible and oil CBD products. Links below to JAMA report and CNN.
Best to all.
jamanetwork.com/journals/ja...
Bonn-Miller MO, Loflin MJE, Thomas BF, Marcu JP, Hyke T, Vandrey R. Labeling Accuracy of Cannabidiol Extracts Sold Online. JAMA. 2017;318(17):1708–1709. doi:10.1001/jama.2017.11909
No relief for me but have read where it has helped some. I think you would need to try it yourself as results do vary. Good luck to you.
I have never heard of this oil but as a second-time sufferer, like your grandmother, of GCA and with my life trickling away (!) I would be happy to try anything, so long as it was medically approved. This episode has lasted nearly seven years and I can't deny that I am becoming disheartened. I am almost unable to get to my kitchen, let alone halfway round the World!
Total fatigue leads to the loss of muscle power - a vicious circle but even though I have had to cancel several apptmt.s for Warfarin checks, in spite of the cost of a taxi there and back, no-one has asked why? Someone did arrange for a district nurse to do it at home in the end though, after the third degree.
I have the odd day or two when I feel 'normal' oh JOY - as I did before this horrible condition but then it's back to 10 or more days when all I want is to sleep.
I have reduced from 40 mgs of Pred to 5 but can't get any lower.
The skin-thinning and stripping plus the awful purple patches on my arms and legs are repulsive.
Sorry, people, to be such a moaner. I'll be in a different mood tomorrow!
If you feel that ill - your GP should be investigating at least one of two things: is your pred dose now too low to manage your PMR - or is your pred dose now so low that you have developed adrenal insufficiency? My money is on the latter I think.
But the first thing that needs checking is whether your adrenal glands would be CAPABLE of producing cortisol if you DID go lower. Do ask your GP to do a synacthen (or ACTH stimulation) test. If they are - ask nicely for a referral to endocrinology to find out if something else is on the scene as there are other reasons for adrenal glands not working. Or it may be your thyroid is sulking.
If you are unable to travel to a hospital appointment you are entitled to patient transport by the ambulance service - and they will do all the hard work for you. Unlike a taxi.
And have another virtual hug.
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