Hello All

Been a while! My son got moved two weeks ago so I'm on my own in my apartment. So happy to see him settled somewhere and he has a couple of good job possibilities, whew!

Found an alternate pain control substance, which is related to marijuana but is legal here because it has no psychotropic effect. It's CBD from industrial hemp plants and I've been using it for almost 3 weeks and it is definitely working for me. The only negative is I feel good so I've been overdoing it, and had a flare this week. I think between overdoing, a reduction from 25 to 20 on the pred and one of my best friends having diabetic retinopathy diagnosed I was on overload. Rheumy had me go to 40 for 5 days and the symptoms have subsided. He wants me to drop to 20 on Tue. but I'm leery of that. Any advice?

Have also noticed that the gluten, dairy, sugar free diet helps a lot. Cheated badly one day and boy did I feel it. Definitely contributed to the flare!

Good night from Connecticut!

11 Replies

  • Hi PamelAnneCT

    Just wanted to comment on going gluten and sugar free.

    The moment a Specialist mentioned I try eliminating gluten some 5 years ago (pre PMR & suspected GCA) my body responded positively in so many ways. I wasn't diagnosed Celiac but had sensitivities and some allergies to many food lines.

    Have always had GI issues (80/85% of our immunity lies here as you may well know), and can say that since then my health improved without writing a dissertation on the subject.

    Sugar is poison to my system too and you will be amazed at just how those two items alone drag the immune system down when we need all the help we can muster.

    Study a macrobiotic diet and see what you think - I follow this 98.9% which is as natural and as close to nature as possible.

    The odd time I may have indulged in sharing a piece of birthday cake or similar and I pay dearly for it next day - absolutely not worth it so reward myself in other ways.

    Take it easy and be kind to yourself.



  • I don't eat highly commercialised wheat in most of Europe - I develop an absolutely foul eczema which is probably due to the autoimmune part of PMR judging by when it started at least. I can however eat stuff in France (soft wheat not hard wheat), spelt, kamut and rye. I did go gluten-free for a long time as that is about the only way to avoid wheat in the UK - but it didn't make me feel any better than I do now. Sugar - what's sugar?

    If you have PMR then going to 40mg is usually a bit OTT - but then, if it was just a few days dropping back to 20mg should be OK. The trouble with using the very high doses is that other things besides PMR will respond to them. However, just a few days isn't too bad.

    I'd also suggest not dropping 5mg at a time on your regular reduction. Top experts in the US recommended a long time ago that no drop should be more than 10% of the current dose to avoid steroid withdrawal pain - which is pretty much identical to PMR (or often whatever illness you are taking the pred for). That means you can't really tell whether it is a flare or is it the lack of pred your body is protesting about. 2.5mg at a time is more than enough for anyone and many people find even that too much.

  • Thank you! I'm going to ask my Rheumy about the 10% reductions as it seems to be what is most common. I am curious about what his thoughts are in having me drop so quickly. He may have explained when I was there in July, but I don't remember!

  • Do you have PMR? If so, the fast reduction is probably because he has started you at a high dose to manage the inflammation quickly and now wants to get you to a more usual dose which is also associated with fewer side effects.

    I hope he isn't a rheumy who thinks that using a high dose to start with gets rid of the PMR problem faster. It generally doesn't.

  • GCA and PMR. I'll know more on Wednesday. I'm writing down all my questions since I can't remember anything anymore!

  • Mind and write the answers too! Or take someone with you to listen - some don't like it but if they object that shows they don't know a lot about GCA/PMR and/or the effect of pred!

  • If you really have GCA you need a higher dose than 20mg for a bit longer to really sort out the inflammation - so sticking about 30mg for a month would be a good idea rather than dropping to 20mg again. That's on the basis of recent studies that showed evidence of inflammation in GCA even after 6 months at above 20mg despite ESR and CRP being normal. The work may be the basis of a far better test to monitor GCA in the long term.

  • Seeing the rheumy tomorrow and have a list of questions from my discussions on here and another support blog. Also printed out an excellent article from the Oct. 2015 Arthritis & Rheumatology publication, "A European League Against Rheumatism/American College of Rheumatology College Initiative" which gave me some other questions. I'll check in tomorrow night!

  • Amelia Ann, remember that PMR is a disease of the "girdles", either shoulder or pelvic. Some people are unfortunate enough to have pain in both; others have either one. Mine has been only in the pelvic near the tailbone. Hurts so much to sit, turn over at night in the bed, bend over. I also have pain at times in my hands, arms, and weakness in my legs. But that pain I am able to cope with. Still the extreme exhaustion. I have felt like a hermit with regard to my social activity. Just no energy for it.

  • Hello Pamela/anne I have just got a bottle of CBD to try, can you tell me how much and how often to take

  • I have a vape pen, and I use as needed, usually 2 or 3 puffs every 2/3 hours....not sure how you're CBD is used.

You may also like...