Hi: Have been looking for SOMEONE to talk to about my PMR for months...thank God for this blog. Won't go into the particulars except to say

[MyDebbie]

I quit the Prednisone myself, my doc not happy with me. I'm my own doc with the help of a holistic care man. I'm only on a tumeric/curcumin pill twice a day, the very best and bio-available pill on the market. All the other Vit. we're told we need. Reallyl have much more of a story right from the beginning which might help someone thinking, can I really get off Prednison? I would have to go back from the beginning, a year ago, to fully explain, which I don't want to do tonight. fI just want to read as much as I can and see if there is more out there for me. JUST TO BE ABLE to see others going through this, really helps me immenselly. My spell check is broke and I type fast so bear with a very excited 81 year old grandma who, God willing, plans to push 100 very hard. Gods blessing to all who read this blog. Amen.

[dangelmayer]

I have been able to get off predisone by taking both curcumin and serrapaptase!!!!

now I feel almost normal!!!

[MyDebbie in reply to dangelmayer]

Will look up the serrapaptase and see what my holistic guy tells me. Thank you. Been reading all the comments and I am blown over by what Predisone does to people. I stretch and exercise in bed, before I get up, especially stretching my arms with my hands. It does work for me so far. When I sit up ...yep..there's the stiff neck and sore back. Walk around a bit and stretch slowly against the wall. I do hurt but can take it so far. I take two Ibuprofen when I just absolutely have to which.is every other day or sometimes once a day. Started with Tramadol but it didn't work but this is before<<I took Predisone for one week and quit. I haven't put my whole story on as yet and surely haven't read anything that comes close to my experiences. Just got up at 9:00AM CST here in Wisconsin so need to eat and get in my vitamins, esp. the tumeric/curcumin capsules etc. The GCA is what my not so smart doc is worried about but not me. I'm already blind in one eye from a snoball age 13 and have done very well with God

s help all these years and still drive all over the place!! Will be back on the comp. later or tomorrow. Takes time to pull myself together. Have learned much so far. God Bless

[iforget]

Happy for anyone who says they can manage/cope without pred but it was not an option for me and after what I endured there is no way on earth I would switch out pred for "holistic options."

[Badgergirl in reply to iforget]

Me neither. I am a holistic practitioner myself but would not recommend going down the herbal route because there is always a danger of GCA rearing its ugly head without prednisolone. If someone is determined however (and I do understand why some would want to), I would help as much as possible.

[ritter]

Hi every 1, I to despise preds but without them i would have been blind and you can not compromise you health,but good look to any 1 that can manage without them, you certainly need them with GCA.

Hope every 1 is feeling a lot better to day summers is close and the days are long, just been out with my 2 sheep dogs I certainty could not say that last year,down to 9.5mg,s,have to go into hospital next Thursday for cataract app,not looking forward to that,kind regard Anne

[Badgergirl in reply to ritter]

Hi ritter. Good luck with your cataract appointment. I have had a cataract operation and it was not bad at all!

[55grove]

One courageous woman I say. Like you I am devastated by having been smitten by this PMR. I have carefully decreased from 15 to 4 mgs in the year, but have a fat face, middle and thinning hair. Like you I do everything I can to extend my life keeping fit with walking my dog, gardening and a session of Tai Chi with 3 weekly muscle massage from an introduction at my local PMR group. I would love to read your progress story If you have time to put finger to keyboard. I want to get off these Preds as soon as possible to prevent any more damage. I already have broken a rib. Never broken anything before despite extreme sports for many years. I do take the medication for bones now. I think the massage helps so much, driving out the stiffness etc. all the best to you and look forward to more story.

[bluejaygirl]

Its tough to get off Pred. Down to 7 mg after 2.5 yrs

[mega]

I, too, a 'sufferer' of GCA for the second time have been on pred for nearly three years - very gradually reduced to zero this January but then felt so dreadful (and a big increase in my inflammation result) I have gone back to 30 mgs, reducing to 25 after a fortnight and then.......? By no means do I feel normally well again but I immediately felt improved by 50% which enables me to function - vital, as I'm nearly seventy-five and live on my own, with a weekly visit from my caring son.

Preds have given me all sorts of skin, weight, muscle, hair, pregnancy-look(!!) problems which I loathe - can only wear long sleeved tops and trousers in order not to frighten the unknowing local community BUT I consider preds the lesser of the two evils. I should love to be shot of them but so long as they allow me to lead something approaching an independent life, I shall put up with them.

l don't post on here very often but I read every email that drops into my box and feel for everyone who is trying to cope with either of these two conditions. Everyone must do what they think is right for them, including holistic, herbal or convential. My sympathies are particularly, (& whose wouldn't be?) for those who have lost sight due to GCA. Five doctors in my practice were ignorant of GCA. 'Rare' it might be but when peoples' sight is at risk it should be writ large on the 'possibilty' spectrum for consideration.

Best wishes to all on this site, may you soon be well again.

[Asbeck]

Hi MyDebbie. I also am looking for someone to talk to. I have just joined this community. I am on a vacation for a few days and will probably type more on Tuesday or maybe even earlier. I would love to "tap" more with you

[MyDebbie in reply to Asbeck]

OK Asbeck...busy weekends but anxious to hear what people say.

[jeanq]

are you still on this site posting debbie