No Predders | Arthritis Information

 

Thought I would start a topic for the PMR sufferers who are going no pred. Looking for support, ideas, information, alternatives. I would be interested if anyone has noticed a progression of their PMR symptoms without the pred. And if any alternative treatments or foods or supplements have helped. Also, have you been diagnosed with any other health problems since the pmr. great question!
I am still on pred so I can't answer, but wil be watching to see!
I wold like to know how much depression/weepiness you non-predders are facingI have been off pred since June of '07.  I thought was almost over PMR at Christmas....then I got an ear ache and I took antibiotics and prednisone for 10 days in case GCA was setttling in.

Hi all, I'm still on the planet, but not been in cyber space for ages, so apologies for disappearing without a word. Particularly to Smartie to whom I owe an e-mail. I won't bore you all with the details. Still pred-less, still glad to be pred-less, still have PMR, sore arms, sore hips, sore back, sore shoulders, sore neck (which leads to sore head) etc etc.  Still stiff, still fatigued. Treatment consisting of a series of gentle exercises planned out for me by a physiotherapist, plus a TENS machine, which is quite helpful sometimes. I take Paracetamol (Tylenol) once or twice most days, I try to not take it every day. I take it mostly for "stiff-neck-headache" and for hip bursitis pain which is bad at night. It provides 30 to 60 percent relief. Otherwise I get along with nothing else. I have NSAIDs in the cupboard, which I don't take. I take a basic multivitamin and that's it.  I just assume that the PMR will "burn out" eventually.   I've always had a very good diet (vegetarian, health foods etc) and don't drink somoke etc anyhow, so don't do anything special about diet now I have PMR. So that's how I am getting along. My "quality of life" is not 100% by any means, but it could be a lot worse, and I'd still rather be a semi-invalid without pred than taking the stuff and wondering what the heck will be the next problem with it. Still, that's just me. We all have different situations and lifestyles and I guess some folk have no choice about taking pred because they can't take the time out to be ill.

Sorry I have no new ideas to offer as far as relief or treatments go, apart from seeing a good physiotherapist and getting a lot of rest. My PMR has definitely not progressed or got worse, however, it has not got better. I have had no new health problems since PMR. In fact, while I was on pred I was plagued with all sorts of annoying problems like sleep difficlties, mood and emotion things, extra pain when reducing the dose, skin problems, and  repeated yeast infections as an example. Since I got off pred I have not had those problems, so although I have PMR symptoms, in a strange way I actually feel more "well" when pred-less.
chico, i was wondering, do you take anything for your bones?  like fosamax or boniva?
or calcium and vit d?  i all ways wonder what to do about the bones, and i would value your imput.                 thanks,    Georgiana
Hi Georgiana, how are you these days? Any better at all? I take nothing for bones. Before I started on my 6 months of pred, I had a bone density scan which was completely normal. I assume it's still pretty normal. I don't take calcium supplements, other than the calcium/vit D which is in the multi I take. Which, in fact, is a kiddie one! I don't intend to take calcium supplements in light of the new research on calcium supplements and heart attacks in women. I posted that here on this forum somewhere. So I eat sardine bones and other natural sources of calcium like sesame seeds (very high), soya and other vege sources. I don't use dairy. I guess there is "additive" calcium already in the fortified soy and rice milks I use, as well as in the antacid I use once a day, which is calcium carbonate. I just don't think it's necessary to take huge doses of calcium pills, on TOP of all that. Vitamin D I get from exposing my skin to sunlight outside, for 20 minutes every single day, summer and winter, except in a blizzard! lol. I don't know how this will all pan out in the end, but I guess we'll see. Hope you are all OK. welcome back Chico, I haven't been around much either. Glad you are doing so well,

Georgianna, how are you doing?
Anyone seen Bob or the rest of the gang?
pgri have just returned from a four day vacation to a nearby town. Lots of swimming in a warm pool, spa stuff, walking, nature, etc. Wonderful. I took my 50 mg NSAID every day so i could enjoy myself. I felt partidularly well and could actually roll over in bed like a normal person. My knees have become less swollen. I got a call from my GP with my blood tests and he said my SED rate was normal. I almost fell over. My CRP is still high but I feel like i must be on the right road. My xrays of my knees were ok also. I will stop the NSAID now that i am home and will see how i get by.Hi Smartie.....glad to see you are coming along ok.  The board has been very quiet this last while so it is good that it is buzzing again.  Keep us posted to your progress.  Thanks chico, i do not take any thing except a calcium supplement and vit d.  dr wants me to take actonel but i  do not like the side effects,  appreciate your imput, hope you are well
hi pgr,  i am doing ok, some time, but still in lots of pain and the never ending fatigue,am down to 8 mg of pred.  but i am still fat, gained over 30 lbs because of the stuff,  but you know without it i would not even be able to walk, so i keep plugging along. hop you are doing o.k    Georgiana
Georgiana,pmr555,chico: sheila, i did notice a slight change, face not so puffy, am down to 8 mg, did not lose any weight, scale still says the same.
does any one know if medrol is the same as pred? as far as the dosage goes, is 10 mg of pred the same as taking 10 of medrol
thanks    Georgiana

Here is a challenge to no-predders...i went a few steps back and was worried (I had stopped some supplements - maybe the reason??). My knees were killing me. My back also. I was trying to turn over in bed and my back popped and wow - much better. I started back on mangosteen juice and  zymafland. The day i started back on the mangosteen juice i felt better but still angony in the knees. Yesterday morning I drank the last 1/3 of the bottle of mangosteen juice all at one time. Let me tell you I have had immediate relief in my knees. dont know if it was the mangostten but i feel almost normal in the knees. So, here is the challenge - drink about 1/3 of your bottle or as much as you can in the morning before you take anything else. I would like to know if anyone else gets these dramatic results. I ran out and was worried i would wake up in misery aagin. But my knees feel really good. I can walk pretty much normal. Now I need to get my neck fixed. I cannot turn my neck all the way to the side either way. Makes it hard to drive for one thing. I have other aches but this is a huge improvement. This is the best i have ever felt with pmr. My foot is bothering me also - ever since a long walk after being pretty much sedentary. Now it hurts off and on down the bottom outside side of the foot. But all this stuff i can live with. I dont take pred or Nsaid or tylenol...or anything. When i sit for a long time it can be delicate getting up but not excruciating like it used to be. I think i am almost within reach of that light at the end of the tunnel. I hope some non-predders will take me up on this challenge or experiment with the mangosteen.

Update - if your knees are bothering you...also try to switch to shoes with more support. My GP told me that he thought my knees were shot because i was walking bad because of the pain in my hips and back. My massage therapist has wanted me to change from wearing those thin gel shoes...so I went back to my Clarks which have a stronger sole and more support. I dont know if this helped my knees or maybe was a combination with the mangostten or just my time to heal. I am real curious why some people get better after 6 or so months and some have this monster for 6 to 8 years or longer. What makes the body start to heal? When I read that this can run from 6 months to 10 years i made up my mind to be one of the short termers. I am very lucky that i seem to be in a recovery mode. Yesterday I vaccumeed the house (had not done that in two months), got a haircut, made cookies, went to the mall, went to the grocery store and was the person going around people instead of being the one folks were passing up. This is a crazy disease. How are you other no-predders doing?

It might help you to take chromium picolinate & biotin supplements.  Your hunger could be a result of blood sugar swings i.e. low blood sugar.  Blood sugar is usually regulated by insulin, but insulin cannot do its job without chromium.  Prednisone depletes the chromium from your system.  It seems the only form of chromium readily absorbed is chromium picolinate (500 - 600 mcg is a reasonable daily dose) and it should be taken along with biotin (250 mcg approx).  These are available at health food stores.

It helped me to take it daily when I was at 15 mg of prednisone a day.   I'm now reducing to 3.0 mg and only take the chromium picolinate & biotin a couple of times a week.Here is a link to today's news about flip flops.....just what I was talking about - the point is not to make it any worse on yourself... Thanks, Ruth.  I started on chromium picolinate 500mg once a day on friday.  Sheila from Heavenly Hamilton, Ontario
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