In January I was diagnosed with polymyalgia rheumatica and tempor...

Hi - I have PMR and GCA too. I'm on 60 mg prednisone too and am experiencing the same prednisone side effects as you. I have had 2 relapses when the Dr has tried to taper the prednisone down. Each time the symptoms returned more severe and required even higher doses of prednisone.

I have frequent prednisone crashes - very fatigued - brain fog - weak and shaking - emotional.

I will be going to Mayo Clinic soon to see what else can be done. In the short term - I am going to try to reduce my carbohydrates, sugar, salt, and caffeine and try more exercise and meditation.

I'll post again of Mayo has some answers.

Best wishes

My PRM, thankfully no GCA problems, was diagnosed Dec. 2005 and I am still on Prednisone. My SED rate and meds levels were never as high as your but the symptoms you described are the same. My weight gain is mostly above my waist..sort of a mini-pregnancy look. The hot flashes are tapering down thankfully since I am 72 years old and had that long behind me. I find anxiety to be one of the worst symptoms, it's hard to worry when you can't remember what it is that is worrying you. You are the first to mention feet cramping, my toes turn under painfully and my doctor looked at me like " that one is not my problem". Also developed a hammer-toe and wonder if that is related, SINCE EVERYTHING ELSE I EXPERIENCE SEEMS TO BE PREDNISONE RELATED!

I am having less problems with tapering down since he changed me to generic MethylPREDNISolone .

inoeaux

I am being tested for PMR as we speak . I have two hammer toes and
I used to have terrible cramps in my calves and feet until I started
taking magnesium, potassium and using celic sea salt (the kind of salt that still contains the minerals) instead of the white table salt. I bought
Ionic Fizz Magnesium Plus powder and Natural Calm unflavored and mixed the two together because although I like the taste of Ionic fizz it can be too strong for my taste at the recommended dosage level. I put it in my water and drink it all day long. I also take PERQUE magnesium with my supplements. Magnesium will loosen you stools so go slowly at first. Stay at the level just before diarreah. It's great to have such a visual indicator that I am taking enough. I no longer get cramps( I don't even know if I want to call them cramps because they are so incredibly painful and I get would get the same thing of the toes curling under as you do...YIKES) unless I have had too much wine or eat sugar at all (as liquor can have a diuretic action and waste my magnesium levels ) and the sugar is pro inflammatory (it depletes your B vitamin levels and my pain levels shoot through the roof !) You bring up a very interesting point theorizing that the hammer toes are being caused by the prednisone. I am remembering that too much cortisol coursing through the body makes your ligaments like old rubber bands (dry and unable to stretch and constrict as they do when they are healthy.) When the ligaments don't do their job , then the muscles try to take over, which is great in an emergency, but not long term. Then the muscles get tired and sore and we don't walk and stretch as we normally would because of the pain levels. Then the muscle constricts and "hardens" into a low mobility mode and voila those muscles also pull in the toes and they curl under. It doesn't help that most of us also don't wear the right size shoes (length and width). I found out my shoe size is 10 wide when I was wearing 9B. Think about that ! So I was encouraging the toes to curl under even more ! I got orthotics and I also purchased an item called Yoga Toes which helps your feet become more flexible. Do not be afraid. They will not make your feet wider ! I also massage my feet every day. Get yourself a relexology book or chart. My Gentle Yoga teacher is the one who taught and encouraged us to massage our feet. She would tell us what part of the foot relates to what as we massaged our feet. One day I came to class with a terrible headache and clogged sinuses. When we came to the part of the feet that relates to the sinuses I didn't think much about it because quite frankly massaging you feet feels quite good ! All of the sudden my sinuses became unclogged ! Also, the inabilty of my body to hold onto magnesium may be a contributer. Magnesium is a muscle smoother/relaxer. Think about these things I have shared with you and hopefully something might help you on your road to recovery. Yesterday at the doctors I told him that I felt like Rigor Mortis was setting in because of the terrible stiffness I experience. We need to keep moving gently or our range of motion might decrease permanently ! YIKES !!! Scary ! My best to you and may God help us all in this trial. BarbieC1953

I am thinking of doing a three week cleansing diet as outlined on
www.westoaprice.org in an article by Dr Tom Cowan. I have
heard before that resting the digestive system lowers pain levels.
This is a perfect time of year, summertime, when we are flush with
fresh, organic produce which is called for in his protocol. I am
thankful for the internet so that we can talk to one another and
encourage one another. We can be like the blind men feeling
parts of the elephant and together try to piece together the
"whole picture. Hopefully we can share things that have
worked and not worked for us as we pursue finding out the
underlying reason for why our emergency switch has gotten
stuck on start. I am so thankful for medications that can be
the stopgap measure as we explore other options that don't
have the side effects of prolonged use. It would be nice if we
could go back to our pre PMR selves but we may not...just
like my back and neck will never be the same after having
whiplash after my car accident...but by the same token I
am also no longer in the acute pain I was right after the
accident either. Thanks for listening and I look forward to
us helping one another ! BarbieC1953

CORRECTION :
www.westonaprice.org

Dr. Tom Cowan in San Francisco is a very good alternative medecine doc who says that much of his practice is in helping people get off of prednisone and other synthetic corticosteroids. You could call him. He has helped my husband. We are down to 3 and 1/2 milligrams per day but he is still losing muscle mass and weight. I guess with this drug you either gain or less often, you can't stop losing weight. My heart goes out to every one who trusts doctors to know what they are doing and not hurt them. I remember that the first part of the oath that new doctors take is "first, do no harm." Synthetic hormones are good for the drug companies but ARE NOT GOOD FOR HUMAN BODIES. When will we learn to trust the Creator more than drug reps.

I was diagnosed with polymyalgia rheumatica and temporal arteritis (giant cell arteritis) Sept. 2006, I was put on 60 mg prednisone. I've experienced the same weight gain, the moon face and also felt generally feel miserable. i was on 5mg the last few months and my symptoms (headaches/soreness to tempal area, some general back pain came back (after a year). blood work, SED rate was 61 and c-reactive protien 138.1 was very high. it's very common to have replases. my dr wants me to start Methotrexate. still debating on it. has anybody started useing this drug for giant cell?

Hi - I have Pmr and Fibromyalgia - my Doctor (and past Dr.'s) say I am a complicated case! This started in 1999, so I have had it for quite a while. My first experience, I was on 60mg. prednisone for 1 month, 40 for 1 month, 20 for 1 month and 10 mg. for 3 months. I was also on 200mg. of Celebrex and still continue with it. My sed rate went down and I had 1 year of remission. Since then, I have had several long lasting flare-ups, going back on prednisone. This last flare-up started in August, 2007 and I am still fighting it. I have also had several C-Reactive Protein tests run and my level has been around 52, which is high.PMR is something that is
different for every individual case without rhyme nor reason. My advise is stay on prednisone as long as it takes to reduce your Sed rate and get a C-Reactive protein test run to see where you are with that. This is a very irritating problem and you have my sympathy. I am seeing another Rheumatologist in KC,MO in April, but I really don't expect any new miracle drug. I also take: paxil and cymbalta for depression (cymbalta also helps pain) with good results, along with generic Vicodin and this really helps on bad days. I do not take Vicodin unless it is a BAD day. I hope this may help you. Hang in there and give yourself time to heal. Somedays I can't get up off the couch and I know you must experience this also. E-mail me if you wish and Good Health to you.

I, too, have GCA and PMR. Have been prednisone for almost 3 years. Every time I try to come down, I relapse. Currently am on 10mg daily pluse 10mg Methotrexate. Would like to compare my case with yours.
bcangemi@aol.com