My Lucky Day!! | Arthritis Information

Welcome here magythecat !!Welcome - I remember that feeling of finding the forum. I was also dx in July & was on 20 mg at one point... now i am only down to 7.5 and having a rough time. I wish you luck getting off.Thank you both for your warm welcome. Spring has sprung here in the southland, my urge for digging in the dirt is strong, but the arms don't agree...bummer. I suppose I'll have to settle for supervising hubby for the digging and planting part.

Hey Magythekat: Nice to have you hear, but sad about the circumstances. I've had this awful disease since February, 2007. Started at 12 mg of Medrol, went down and then buped up to 24 mg.

Currently, down to 6 MG and feeling it. I wanted off the Medrol, but my doctor said I would have no quality of life without. Just reductions are making it difficut to get up and keep moving.

I do rescue from your state for the dogs and kitties facing the gas chamber shelters.

Only part of my life that keeps me going and keeps me broke. But those happy kisses

and looks of freedom on their face when they get her and are put with families.

Donna, NY

GOD bless you Donna, for the wonderful work you do for our 'furbabies'!! I volunteer whenever I can, at local adoptions, but mostly at this point, donations are about the only way I can really help.

I cut myself down to 21/2mg of pred. a few days ago, and it was totally miserable yesterday, but this morning a bit better. My PMR is mostly concentrated in my right arm and shoulder...it has settled way down in the other typical area's it affects..(fingers crossed) I had never heard of PMR until my rheum. diagnosed me. Now I realize that it is very common..and from the things I've read..it's stress related?
Hang in there Donna, as we all are doing, and we'll all get through this together. magythekat,

No wonder you don´t feel well when tapering from 5 mg to 2 1/2 mg. 5 mg is twice as much as 2.5! From 10 mg down to 5, I have tapered 1 mg every month and from 5 mg I have tapered 0.5 mg per month or so. It took me a year to come down from 5 mg as I always felt tired and without power, so I went back up again. then I tried a new method. I take the new dose (0.5 mg less) for one day, the old for two days and repeat this once more. After about a week I take the new and old dose every two days. After about two weeks I go over to the new dose completely. In that way, the body has time to adjust. I started on 20 mg in June 2005 and after almost three years I am down to 1.25 mg. I have 5 mg tablets and 2.5 mg tablets that I cut in four parts. In my opinion, it is no idea to try to taper too fast to get rid of prednisone. Somebody has written that from 5 mg down it is more or less a maintenance dose and it is not very harmful. It is a wonderful medicine that makes you feel much better. I am fortunate not to have any bad pain.

Ragnarthank you so much Ragnar for your informative input, I really appreciate that, and will try to do it your way...dumb me..I thought 2.5 mg was just a 'little' reduction. I went from 5 mg to nothing per my GP....also my rhumy told me yesterday i could go back on 5 mg for a month till i see him again if i was in too much pain (my sed rate went up but i am fine with my nsaid...i am having the test redone). The rhumy said i could stop the 5 mg after a month. I actually felt better after awhile when i got done with the pred. I wonder now if i was having a reaction to the fosamax - a side effect can be muscle or joint pain. I am thinking about starting it back or maybe boniva. I do have a touch of osteoporsus in a part of my spine. I figure if i start back i will know if i get the pain back it is the fosamax or boniva. I was doing some more googleing on drugs and pred, osteoporsus med and nsaids all work terrible together. I mean they seem to make side effects worse on each other. Did the person who tried the Calm like it? I read that you pea out extra magnesium but if you dont get enough your body will leach it from your organs and that can cause pain. If you are taking extra calcium for osteoporus you will need magnesium to process it in your body. I also ordered the liquid vitamins from the same maker - I think it was Natural Vitality. I am seeing my GP today to retake the sed rate test and crp. My sed went up but the crp went down so i want a redo. I am also going to ask him to xray my knees. When i first got PMR it felt like a hot poker in my knees. That hot pain subsided then my knees were really stiff and felt like a roll of socks were stuck behind them. THe stiffness has gotten better but now it feels like they "catch" or lock up or slip. I googled and that sure sounds like ra or osteoarithis. I did read somewhere where that can come from the PMR. How are everybody elses knees doing....?Hi magythekat and welcome.
I share your enthusiasm in finding this list though I can't always get a chance to contribute\list etc.. I started at 15mg and thought pred was a miracle cure! gradually (2.5 years) down now to 3mg. and I'm considering going back to 4mg --aching in the am, trouble bending down, as someone before mentioned "drunken sailor"gait esp in am. Thought of 'toughing it out" but at times I almost want to go back to 15 again. Hope your plan goes better than what my rheumy wants me to do!
Hi Megythekat and all, this is the first time I have ever spoken with someone who has PMR ever! I feel truly blessed as well to happen upon this forum. I have had PMR for four years (I was diagnosed at 55), and really worry about takin pred. this long. I am interested in alternative treatments--what is the Calm?? Does anyone pick something up and just drop it suddenly (I dropped my coffee at work yesterday and felt like such a klutz)? I have so many ?? but I will stop here. Thanks everyone--this is just great!

Welcome Wildflower. Lot's of great folks on here with plenty of information to share about this diease.

I've had PMRA for a little over a year. Somedays you want to fast forward because of the pain and living with the side effects of the prednisone.

I've mostly been a lurker, reading and learning.

Donna, NY

thanks so much, Donna! I have never written on a forum until yesterday, and I am so happy to be talking with all of you. PMR has been something I don't speak of becaue it's very complicated--as you know sometimes I can practically run 3 miles, and sometimes I can't get our of my chair. Most think I have fibromyalgia, which of course is completely different. Anyway, I am just thrilled to be here!Welcome, wildflower and magythekat - I'm just catching up on the last week's discussion. I've had PMR since Feb/06 and have just reduced to 4 mg of prednisone. Like Ragnar, I reduce 0.5 mg at a time, and alternate the dose for a few days at each reduction. I'd rather not be on prednisone, but it has worked like a miracle for my PMR with few side effects and I've been able to pretty much maintain my lifestyle, which is quite active: I have a small hobby farm with horses, and have been able to keep up with the barn chores, ride, and even throw my 40 lb. saddle on the back of my big black mare when necessary, as well as work at a desk job 30 hrs/wk. However, I do get stiff for a couple of weeks with each prednisone reduction, get a little cranky, etc.

One thing that helped (helps) me deal with the blood sugar swings caused by the prednisone (particularly at doses over 10 mg/day) is taking chromium picolinate & biotin - either daily or a couple of times a week, depending on pred. dosage). It seems that the pred. depletes the chromium from your system, and insulin needs chromium to do its job of regulating blood sugar. At 15 mg/day I had vision problems related to the blood sugar spikes - they cleared up right away with the chromium picolinate & biotin.

Good luck with your journey!

Ruth

Thanks, Ruth--I really appreciate hearing about your pred reducing plan. After 4 years I am only taking 1 mg--however, I know I should take more because I do have difficulty. I didn't even know that prednisone causes blood sugar swings. Could that be one of the reasons that I crave sugar so? I will try the chromium--can I get biotin at a GNC or some place like that? I am like a kid in a candy store (so to speak) with this newly-discovered forum--I will try and restrain myself. I am so glad you are able to continue your energetic life!

Wildflower

Welcome to my world Wildflower...lol...I'm so happy you mentioned dropping things, cuz I do it ALL the time, and never did before the "nasty" PMR came into my life totally uninvited~
I didn't know if it was part of the PMR profile or just me not being careful enough. Hang in there ...I'm convinced that life will get better.(Hope it's not just wishful thinking, I do a lot of that.

Thanks Magy, I read how you are in the process of lowering you prednisone strength. I know I should be taking more but I have been on it for four years. Do you or does anyone know if the prednisone acutally shortens the life span of PMR, or is it just symptom relief? And does pred. prevent a possibility of GCA which is linked with PMR? I find myself eating anything that's not tied down--is that the pred.? Do I ask too many questions :)?? I agree, it will get better, and I have finally realized that it's okay to lie down and snuggle up with my soft blanky when these muscles aren't doing what they're supposed to do. I an blessed by coming upon this forum. Wildflower

About the chromium: google "chromium picolinate & corticosteroid induced diabetes" for more info. Important to get the picolinate form and take it with biotin (600 mcg & 250 mcg respectively is what I take) as from what I understand plain chromium is not absorbed properly. Chromium picolinate is at health food stores. And yes, the irregular blood sugar would cause sugar cravings! Like the "morning after" when you've had too much wine! I've been taking the chromium picolinate since a few weeks into my prednisone usage, so I can't compare, but I haven't put on any weight, so it must be a help!

As I understand it, prednisone just reduces the inflammation of PMR. However, I've also heard that the inflammation can do permanent damage to your joints, not to mention the inactivity untreated pain would result in, which would cause you to lose muscle tone and muscle itself, and that is sometimes almost impossible to get back, especially for older folks.

Ticketyboo, I am so happy you wrote--I intend to buy both the chromium picolinate and biotin tomorrow. It would be wonderful to rid myself of these sugar cravings.

I need to rethink my prednisone dose. I had the belief that the less I took, the better--even if it meant I couldn't move as well as I would if I took more. I am 59 and plan to be around a long time, so I have this conflict about dose vs. the damage that long-term prednisone can cause. I thank you so much for this info, and I am looking forward to taking these supplements!

I can relate to the conflict. I don't think anyone should get complacent and just up the dose, but you do have to give weight to the benefits of pred. against the potential side effects. As always, it's best to discuss with your doctor. I know that prednisone does more damage to some than to others (e.g. cataracts, glaucoma, osteoporosis, diabetes), so I get annual eye exams by an ophthalmologist and had my doctor check my bone density after I'd been on it over a year.

My GP said his partner's wife has been on 2 mg of prednisone for (I think) 10 years and doesn't expect to ever get off of it. I'm hoping that my PMR is now gone and it's just the prednisone reduction I have to deal with (knock wood!). It's a strange condition. I thought I was over it once before, but then it resurfaced in other parts of my body (hands & wrists) and I had to go back to 15 mg of prednisone for a couple of weeks last March, and have reduced as fast as I dared until now I'm at 4 mg.

Another thought: I experienced a real reduction in PMR symptoms just after I started taking extra Vitamin C last fall - up to 2000 mg per day i.e. 500 mg 3x per day plus whatever I get in a multivite and an antiinflammatory powder I also take (Recovery - see www.recoverymedicine.com - I get it at Costco). Worth a try if you can tolerate it - some forms are easier on the digestive system than others, but I have no problems with it at all.

Other people have had success with an anti-inflammatory diet, but I've pretty much maintained my regular eating habits throughout. Always hard to know if what you take makes a big difference, or if you would have felt better anyway without it!

Swede: Thank you for reminding me that I use to alternate dose reductions!! I forgot and have been having a really hard time with this 7.5 mg and was thinking of going back up. I do only reduce by 1/2 mg at a time. Now I will also alternate again.
I also want to talk about sugar... the cravings are connected to bothe the pred and the fact that adrenals are so connected to glucose and sugar on your system.

Consider sugar POISON to your system while on the pred. I have binges where I can't stop, but once I do stop, if I stay off it there are 2 benefits - I lose weight but mostly I feel MUCH better. My acupuncturist can tell the minute I walk in if I have been eating sugar.

If you can't stop the binging, try acupuncture from someone who deals with food sensitivitiesRuth, thanks again for your good advice. I feel better knowing someone married to a doctor has been on prednisone that long! Thanks to you and this forum, I realize it would be a mistake to stop the prednisone at this stage. And yes, it is a very strange disease. I had no clue what was wrong with me--almost overnight I could not get out of bed, comb my hair, you know the rest. I told family and friends that I had PMR 4 years ago, but I don't talk about it with them. This is why I am so happy to meet all of you! And pgr555, I am sure a sugar-free diet would be beneficial. Doing it is another thing--but I will certainly cut down. I went to an acupuncturist when my symptoms began. It did not help the PMR but I am wiling to go for the sugar craving. Thank you!

Wildflower