Giant cell arteritis symptoms and conditions

Been on Prednisone for 3 years now for ulcerative colitis. At first tolerated the drug quite well. But after a few months started to gain weight, acne. After 3 years of yo-yoing between large and low doses, each increase in dose made me feel worse. I am now at a state of osteopenia and of extreme tiredness and brain fog. I see 80yo with more energy than I. I cant walk up 10 sets of stairs without feeling tired out. I need to sleep 3-5 hours a day just in order to function. As mentioned before brain fog is amazingly bad. I'm a scientific researcher which can no longer work.

Prednisone has introduced to me what panic attacks are, mood swings, joint pain and swelling, extreme muscle fatigue and wasting, blurry vision, in habitual eating habits, depression.

This drug has ruined my life. I would have preferred having surgery to remove the colon and going to the toilet 10 times a day rather than not living as brain fog and tiredness that makes my life a dream-state nightmare.

I am a 66 year old male being treated for giant cell arteritis and have been on prednisone for one year and ten days. The disease and its treatment with prednisone has completely reordered my life. My doctor told me that I dodged the big bullet but there would be more. He was right. The 60 mg dose of prednisone I started with was both a life and eye saver. Three months later I was down to 40 mg and I was starting to sleep more than the two - four hours per night that allowed me to all kinds of things done which the increased adrenlin made possible.

Unfortunately, the prednisone made control of my blood sugar nearly impossible even with maximum dosages of metformin and avandia. I was soon forced to add injections of insulin to my daily regime. As I gradually reduced the amount of prednisone I gained some measure of control but was not able to start decreasing the amounts of insulin I was taking until I had dropped down below 20 mg. Now that I am down to 5mg I'm off the insulin and two weeks ago I took my last metformin tab.

Prednisone accelerated the growth of cataracts in both of my eyes. I was taking the prednizone with the hope it would drive the arteritis into remission and I would avoid going blind. And I was blinded anyway by the cataracts. Fortunately the cataract surgery I had in May and June better than restored my sight. I now only need glasses for reading. I was thrilled and could even see myself going back to work at least on a part time basis. No such luck.

After telling my doctor how great it was to be able to read again I mentioned that I thought I had a groin pull because I had been experiencing pain in my groin area and the top of my right thigh just above the knee. That got his attention and he said it might be related to the prednisone. He sent me for a MRI of both hips. The results were not good. I was diagnosed with avascular necrosis in both femur bones with some deterioration of the right femoral ball. A month later I had core decompression surgery of the right femur. The surgeon told me that we had caught it early and this surgery had a 50/50 chance of restimulating the venus blood path that fatty deposits caused by the prednisone had closed off causing the bone to die. Unfortunately, it now looks that it didn't work for me and I have additional micro fractures of the ball joint that weren't there when he operated. My left hip isn't far behind and I now have enough pain in both hips even with the anti inflamatory medicine I'm taking to make it difficult for me to walk to the mail box or negotiate stairs.

I hope that I'll be able to wean myself off the prednisone entirely, but for those folks that are putting up with all the most common side effects, getting down to and below 5 mg per day will seriously reduce if not eliminate the effect they have on you. That includes the fat face and turkey neck, and the thin skin that shows vividly every bump and bleeds profusly with the slightest abrasion that more often than not you can't recall the incident that caused it. The giant cell (also known as templar) arteritis disease I developed was devastating to me and really put me down for the count. I lost 30 of my obese pounds in the first two weeks of symptoms I had with this disease. Even though I was over weight, I was very active and got lots of exercise doing my own lawn work ( 1 acre lot) with a walk behind mower and lots of leaves to rake. Within two months after diagnosis I had managed to work my way up to a two mile walk everday. After 3 months I was walking between 15 and 20 miles every week. Now, as I said, I'm lucky to walk to the end of my driveway to get the mail.

Prednisone is not a miricle drug. It is a terrible medicine with terrible side effects that has been arround for a very long time. Unfortunately, it is the only medicine available to successfully treat a wide range of autoimmune diseases that have no cure and would be absolutely unbearable without it.

Hello- I was Dx with Sarcoidosis in February, 2007. My lung specialist put me on 20mg Prednisone, increasing to 40mg within two weeks. My Sarcoid symptoms were from enlarged lymph- extreme trouble breathing, middle and lower back pain, kidney pain. Within a week of being at the 40mg level my heart rate and BP became so erratic that he had to start weaning me down. Initially I had extreme energy which felt good after suffering from fatigue but was short lived due to the cardiac problems.

The Prednisone has resolved much of my inflammation for the Sarcoid but I will not go on this again. I have been weaning now for over three weeks. Down under 5mg of Prednisone and it is almost unbearable. Each time I took a drop my mental symptoms became intolerable. Anxiety, extreme fatigue with extreme weakness, irrational thoughts, blurred vision. Within the last couple of days I could hardly get myself out of bed. My weight has increased steadily, bloating stomach, stiff joints, skin rash.

My biggest complaint is that doctors are not giving us enough information as to how this will affect from a negative side. Yes, it takes care of the inflammation but no one prepared me for these awful side effects and withdrawal symptoms. I feel like a nut case most of the time with no coping skills.

In January I was diagnosed with polymyalgia rheumatica and temporal arteritis (giant cell arteritis). I was put on 60 mg prednisone and an array of other meds to help with pain, inflammation, water retention, and stomach problems from everything. I've lost some vision from the TA. I've experienced the weight gain, the moon face, stomach problems, depression, fatigue, muscle weakness, lack of memory and concentration, and generally feel miserable. The brain fog is awful! I don't trust myself doing much of anything these days!

When I was first put on the prednisone it completely took away all my TA and PMR symptoms. I could walk and get up and down again, didn't have the headaches, and didn't hurt all over.
My doctor tried to taper my dosage about 6 weeks ago and all my symptoms returned and increased as I went down on the prednisone. He upped me back to 60. That time the symptoms didn't go away. They lessened but were still there.

He's trying to taper again, and I'm down to 30 mg now and feel worse and worse. My sed rate has been normal, so the doctor thinks it's from the prednisone. Does it mimic all the TA and PMR symptoms? I also am having a lot of hand and feet cramping.

Does anyone else have these two illnesses? I would be interested in your experience. I want off these meds! Anyone found an alternative approach that's helped?

God bless!

I have been on prednisone for nine years.
I was diagnosed with giant cell arteritis and polymyalgia rheumatica. I was started on 80mg. I am presently taking 5mg. I have been down to 2.5mg. every other day, but my sed rate goes dangerously high. Then I go back to a high dose and very slowly taper again. I have had a compression fracture of the spine, cataracts, thin bruising skin, excessive sweating day and night, sleeplessness, mood swings, moon face, and I have gained 80 lbs.(mostly abdominal), My feet and shins ache, you name the side effect I have it. How can I get off this drug?