14 months of dosing down my prednisone and at new dose of 4 mgs. Also taking weekly Actemra injection without side effects. Prior to developing GCA/PMR I was a fibromyalgia patient since 1982. As bad as I thought fibromyalgia was it was truly a walk in the park compared to this disease.
My spine, hip and back pain is unrelentless. I take 2 Vicodin a day with Tylenol in between the Vicodin.
I’m grain and sugar free but I do use a bit of yogurt. Mostly organic with no GMO’s.
I occasionally cheat if out. Possibly I’m eating too many berries because it does turn to sugar.
I would like to know what people are using that is effective for pain.
Medical Marijuana just became legal in oil form. Between the state registration fees, doctor fees and cost of the oil it is expensive.
If anyone is using it and feeling a difference in pain, please let me know.
I took a flexeril with my Vicodin today and hope that this addition will be effective.
Any input would be greatly appreciated.
Written by
Leeleep
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I am so very sorry you are in such pain. Not sure the pain is from PMR. but I am sure the aunties will come soon with advice. Just wanted to send sympathy.
Just because you are on Actemra it does not necessarily mean you can reduce the pred to zero - there are patients who still require some pred. Maybe you have gone too low?
If you have constant pain - there is something wrong and your doctor needs to investigate.
I also have fibromyalgia and we can’t be sure what the trigger is. Been following one of the very slow protocols from this site for slow tapering. Honestly rather deal with pain then be on that evil drug for life. I was started on flexeral today. If it’s the fibromyalgia that should help.
This is the second comment I've read already this morning about pred being "evil". I have to say: No it isn't. It saves lives and gives lives back and used properly it has fewer bad effects than most other antiinflammatory drugs.
Evil drug, NO. Pred is a wonder drug and has been a life giver for a lot of us. I do agree at higher doses there can be a lot of side effects, but you would be pushed to find any drugs that do not have side effects.
I echo what PMRpro said: if it’s PMR then you need a higher dose. I’m not an expert on Actemra, but I do know a lot about flares and dosage. I know we all hate to be on Pred and want it as low as possible but unfortunately our bodies don’t know this and the PMR does whatever it wants/needs to . No amount of willpower will change that! If you are still only 14 months in, then it is likely that your PMR/GCA is still active and needs pred. It is highly unlikely you will need it forever, but is the pain worth it? I really hope that the flexeral works and it is fibro pain, but if not, up the pred dose and see if it makes the difference.
There has been evidence to suggest that long term opioid use can actually cause more pain rather than less. healthcare.utah.edu/the-sco...
I also agree with PMRPro (as I usually do) that prednisone is a lifesaver - I couldn't function without mine.
Lastly, I have found that natural Curcumin/Turmeric (brand is Curamed in the states and available over the counter) at 750 mg can work as well as any NSAID would work. It takes the edge off.
You sound like you need to take your pred back upward though. Good luck, and hope you sleep well soon.
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