Temporal arteritis symptoms and conditions

i have been on neurontin for nerve pain in my legs due to vasculitis for a few weeks now. i have only noticed a small increase in appetite. my eyesite seems to be out of focus, but its so bad anyway that i have no idea if its the neurontin or just my eyes, and minor headaches i had no pain relief either........absolutely no improvement at all. my doctor just raised my dose from 900 mgs a day to 1200 the other day. still no pain relief but i am now getting a bit dizzy. i guess we will see what happens!

How interesting to find this site! I, too, was diagnosed with temporal arteritis on February 29 (no more leap years for me!). Because I was already blind in one eye (had no idea) and losing sight in the other eye, I was put on 100 mg daily of prednisone. I had no idea of what I was in for. Since that time I have been able to taper down to 42.5 mg daily, but I don't think I've missed a single side effect. Horrific headaches. A 25-pound weight gain so rapidly it was unbelievable, moon face like I've never seen, was thrown into diabetes right away. My blood pressure went haywire, my cholesterol went haywire (had never had problems with either of them). I think I agree that the most debilitating has been the muscle weakness and leg cramps. I have no balance, have had 3 serious falls. The latest is my skin is breaking down and I'm losing my hair. What hair I have is like somebody held a match to it and frizzed it. I'm short of breath, keep trying to exercise and it's like climbing a high-altitude mountain. Swelling of my feet to where I can wear NO shoes except for Crocs in about three sizes bigger than I ever wore in my life. Now I have a liver problem, am being sent to an "ultra-specialist" for this. The good news is that my remaining eyesight has been stable, and I am very thankful for that. I have been assured by multiple specialists that I would have been blind by now if not for the prednisone. Although it is very difficult for me to read by the time night arrives, and that was my chief "hobby." The other part of this whole sad saga (ha) is how much money my husband and I have been out this year -- unbelievable. Lab tests or doctors every single week and sometimes every single day. I am now under the care of 5 different specialists (ophthalmology, rheumatology, cardiology, hepatology and internal medicine), and it has been so incredibly expensive. This is even with fairly decent insurance. I have been told that I have at least six more months to go on this treatment, and then possibly another year on methotrexate. Thank God I have NOT experienced the depression that seems to be a common thread here. I am trusting in Him to get me through this itme and to come out on the other side completely cured. But it does get difficult in the meantime.

MY FATHER WAS DIAGNOSED WITH TEMPORAL ARTHRITIS. HE HAS BEEN ON PREDNISONE FOR ABOUT 5 MONTHS NOW, STARTING FROM 80MG/DAY. HE HAS TAPERED DOWN TO 40 MG/DAY,,BUT TH SIDE EFFECTS ARE STARTING TO BECOME UNBEARABLE.
WATER RETENTION,,SWELLING, MUSCLE PAIN,,WEAKNESS.
HE IS 80 YEARS OLD,,AND IT IS REALLY TAKING A TOLL ON HIM. IF ANYONE CAN GIVE ME ANY HELP OR INFO TO COUNTER SOME OF THE SIDE EFFECTS(MUSCLE PAIN AND WEAKNESS MOST IMPORTANT) IT WOULD BE GREATLY APPRECIATED.
THANK YOU.

My throat started to tighten like someone with a fish or nut allergy.
My left eye leaks a sticky liquid and the lid is starting to droop. The lid also stick to the eye or feels like it, the eye feels like its fluttering. I have server Edma, I can hardly walk and cannot get rid of it even with water pills.

I don't have a new side affect with Prednisone but just want to share my feelings. I was diagnosed with Temporal Arthritis since last July 2007. I started taking 60 mg of Prednisone for 1 month. Didn't notice the side affects then. Weaned myself off through my doctor's instructions. But relapse occurred when I was only on 2 daily. With Temporal Arthritis, you get delibating and horrendous head pain which is caused due to inflammation of the main artery in the temple. I am back to 3 daily.
Besides my moon face, I am bigger. I really don't have a lot of the other side affects you all talk about. I am sorry you all have to go through that.
My depression is better. My sleep is horrible. Now I am going to a sleep study to see if I have Sleep Apnea.
I consider Prednisone a wonder drug. Although the side affects are horrible, I have to admit, I feel much better, most of the time. I do have inflammation in the neck. Not sure if that is pred or temporal arthritis, but am seeing a rheumatologist for that.

Teena

I was given 20 mg of Prednisone for 10 days for a rash and joint pain.
The pain went away and I felt great the rash got a little better. Two days ago I took my last pill. I woke up that night and my knees gave out. By morning I was great! Next night I woke with knee problem again had to slide down the stairs to the living room. I got to wondering if the knee thing could be associated with the Prednisone. I got on line and read all this terrible stuff. I am so Horrified! Today I am in pain like my body is bruised and my face is swollen a little. I have acid reflux as well. Non of this is typical for me. My knee thing is ok again, but I am just appalled! I have no MED insurance. I hope this isn't the beginning of worse things I am not taking that drug now. The Dr. didn't say I needed to taper...

I hope I have not damaged myself by taking this drug! My heart goes out to all of you! My question is - Why are the Dr.'s prescribing this terrible drug?

I started with 60 mg per day for polymyalgia rheumatica and now after two years have weaned myself down to 5 mg per day. I have a side effect that I have not read anyone else having. It has effected my taste buds. Many foods that I loved in the past, have a foreign taste to me. I am 66, male and have tried to drop down to 2 1/2 mg but the pain is too intense to remain at that level, so had to return to 5 mg. I have lots of pain in the feet and especially toes. I can tell that I am getting better and am very anxious to get off of Prednisone.

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 sjogrens sydrome and possibly temporal arteritis. I have been on prednisone since June 04. But now I take 60mg qd. I have experienced severe acne enough it causes cellulitis, severe swelling, gained 15 pounds, and even pain at night along with sweating.

Mother was on prednisone for temporal arteritis. Started with 120mg. Had severe abdominal cramps with vomiting. She had heart problems, on warfarin and many other drugs. Doctor was aware of all of this. Tried to wean off medication.
My dad found her in the bathroom after suffering another bout of severe pain. She left us on May 3rd. at the age of 76.
Please be careful. This drug kills.

I have been on pred for 2 years off and on for Temporal Arteritis that the doctors at long last have decided that I don't have. They started me out on 60 mm and now they are taking me off at 1mm every other week. I am down to 11mm now. I have experienced all the side effects except the acne and problems with periods. I gained 40 pounds and have such bad pains in my lower back that I can't stay on my feet for long. And I'm always hungry though I try to control it. My main withdrawal symptom is extreme itching from my neck to my wrists and thighs. especially where there is any pressure on the body such as waist bands etc. I tried to get off it once but it was at a faster rate and that is when the itching started. I will gladly put up with the itching as long as I can get off this "Satans curse" of a medicine. I also have jerking in my hands and a general feeling of shakiness. I was glad to read that someone else had painful sensitive teeth I didn't know it was connected to the pred. I too wonder if I will be able to lose all this weight after I'm off the pred. I do know that the moon face goes away because it did the one time I came off the pred then had to get back on it. I also have weakness in my thighs and arms. and my arms are always getting big ugly bruises or torn skin on them to the point that I have to wear long sleeves in hot weather.feel free to email me with your story. Especially if you are off of it so I can have some idea what might happen to me