It's kind of funny, but I was scammed when I got some of the CBD Gummies they had advertised on my Facebook feed. They said I could buy a month's worth for 40. so I thought that wasn't too much just to try. Turns out I was billed 40 a bottle and had to buy 5 bottles at once! Well, anyway, I began to eat a gummy each day and after a couple of weeks went to 2 gummies a day, on doctor's approval. I couldn't tell if it was helping with my pain, but I got a very noticable effect within a few days. My nervousness and irritation about prednisone disappeared. I had been mad at my dr for not giving me 20mg of pred. instead of 15. Just a little more might help me. I still think that. But my anger is gone. I just don't mind. I do what I can. I still cry several times daily as I try to get things done. I still can't walk or play or do much of anything. But I don't seem to mind as much. It is sad, but oh, well. Now is that good or bad? I don't know.
CBD effect?: It's kind of funny, but I was scammed... - PMRGCAuk
CBD effect?
It’s not legal in the U.K. but that effect would improve things for some people and your doctor is on board. I wouldn’t personally trust products that pop up on a side bar. They weren’t transparent about cost and quantity either. Those would be the red flags for me.
I completely agree with Sheffield Jane on all counts. It's important to realise that PMR pain is only effectively controlled with the correct dose of steroids to keep the inflammation under control and it doesn't sound as if you have quite got this right yet! You possibly need further discussion with your GP.
No one wants to take steroids and I found the necessity to take them completely abhorrent and terrifying and as an ex nurse I was fully aware of the serious issues that could emerge as a result of long term use.
However, 2½yrs down the line, I've realised that they're actually a useful ally in the fight against PMR and GCA and that there are successful ways to combat many of their side effects. Acceptance is half the battle!
As for the anger and despondency... it's probably true to say we've all been there, but these are all natural reactions to the changes that have happened to us and in most instances just require a period of adjustment.
The most effective thing you can do is educate yourself as much as possible to find out everything you can about your condition and the medications you're on. Knowledge is power and power puts the control back in your hands.
Just putting a 'sticking plaster' on the problem will only be a temporary fix and won't really help in the long term.
I personally feel that I don't want to 'not care'. I need to feel 'bothered' at times in order to remediate whatever is causing that worry or concern.
It's completely understandable that you're feeling a bit low and fed up but things will improve, particularly if you get your steroid dose correct.
As for the CBD gummies...your source sounds a little suspect and I would want to know exactly what was in them. Being dishonest with the purchase and the price in the first instance would not exactly fill me with confidence or allow me to trust in the product being legitimately safe.
Suffering from PMR/GCA can be quite scary at times but there's a lot of support here and just about any concern or issue can be addressed by somebody.
Look at FAQ'S where there's lots of really helpful and reassuring advice too. You will be ok.
Excellent reply, and SheffieldJane too.
Kendrew, a personal question (if you don't mind)!😏 When you were a nurse had you come across PMR at all?
I don't mind at all.
No. Never. At least nothing that was recognised as that. That may be down to me mainly working on surgical, and paediatric wards and PMR and GCA were terms that I never heard. People on the geriatric wards were often diagnosed with rheumatism or rheumatoid arthritis and I may be wrong but some of the stroke and heart patients may possibly have suffered those 'events' as a result of untreated GCA. I'd never heard of either PMR or GCA until my dad was diagnosed with them around 2000.
PS. I was nursing in the late 70's/80's so a long time ago!
Totally agree with SJ and Kendrew.
Really have nothing to add to SJ and Kendrew's analysis.
Thanks for your comments; however I have a very stubborn doctor and a stubborn rheumatologist who are completely against me trying a little more pred. to help me. I guess my next step would be to find another dr, but I need a referral from the main dr to do so. They both have seen me yo yo with the pred. and I guess that disturbs them. I begged, argued, cried, everything to no avail with them. It was hurting me deeply on top of chronic depression. Even my psychologist agreed with them. so it is a relief to feel a little better mentally in that subject.
If it works for you fair enough I guess , but have to say I’d be looking for more sympathetic doctors, if they are reluctant to give more Pred, then they need to come up with other options.
Just a note, I added a few lines to my profile to explain my position. Thanks.
Hi guys,Ref. CBD effect, gummies and others.
My wife ordered 6 bottles for 217 euros. Each bottle lasts a week, now on second week, have not noticed one scrap of difference yet. The reason I bought them, is myself and my family all suffer from Arthritis and muscle cramps very badly and this is what it was supposed to help with. I have had PMR for about 11 years, my rhumey has stopped me on 5mg pred, which I can handle easily. I take tablets for cramp and pain, heart tabs (after heart attack). I work 6 days a week on our 8 bedrooms, 4 bathrooms cortijo and 2 apartments, swimming pool and 5.500 sq mts of land and olive trees. I go from one end of the house to the other, then it's time to start all over again, this is because of land movement. I'm a very fit 70 year old. I just thought the Hemp extract oil might help with my symptoms, but it was a waste of money. It also said it would help with my sleep, but it doesn't do that either. Hope this helps.
Regards, Buenavista
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