My name is Donna, and I was diagnosed in February with PMRA. I'm 52 and am currently taking 4mg of Medrol twice a day. I started at 12 mg and after six weeks my rheumatologist reduced the dose to where we are now.
We tried to get it down to less, but I could not tolerate the drop in dosage. So, I'm holding at 8mg per day with some minor pain. The fatigue and sweating are my worst symptoms right now. I also have difficulty sleeping from the Medrol, and now take Ambien CR. It helps some, but I believe the Medrol is overriding the Ambien.
I understand this is going to be a long ride, up to five years, so I'm trying to ride with this. I also take Ultram for pain when I cannot tolerate some of the symptoms.
I'm having difficulty maintaining a sense of humor about this, and feeling exhausted after doing regular activities I did before without effort, takes it toll on me most days.
My doctor is watching me for Giant Cell PM. So far, negative.
The exhaustion allways got to me also I am so fatigued all the time, it is a job for me to take a shower.
Medrol is a form of predisone. The generic term is methylprednisolone.
The fatigue is like a fading feeling. In the beginning of treatment with the Medrol, I actually felt I had more energy. The relief from not being able to lift my arms or turn my neck, or move my legs was wonderful. I also had pain in my lower spine. Still do. I feel it more as the morning dosage of Medrol starts to wear off.
Now three months later, I'll be doing something, and get this energy drain, and have to lay down.
Donna, NY
Thanks Rose, for the welcome. My rheumatologist is pretty hip on this disease.
He also limits my intake of sugar and salt, and feels that lower carbohydrate intake will help with the weight gain issues. Also wants me to walk more.
He reduced my dose of Medrol and then tried to work in the exercise routine, which did not work. The lower dosage set me back a few steps but he told me to try to ride with it for at least a week and take Ultram (I had acute renal failure a few months ago, and cannot take NSAIDS). He told me if the lower dosage did not work to bump it back up by 1/2 dose. Because of the kidney issues I have to be careful about the drugs I take.
Since the start of this disease, I've added more meds to my routine. Lipitor, and a gentle BP med and Ambien to help with the sleeping issues caused by the Medro.
Seems like my body and change of life decided to send my body into a tailspin.
I bring in information with me to my doctor, and he always greets my questions with a postive attitude. Tells me openly why this will or will not work.
I was in the hospital a week with dehydration and renal failure from a salad I ate at Taco Bell last November. Could not move my torso, and no one had any idea what was wrong. After I was able to function, I went to the rheumatologist and he hit the nail on the head with his diagnosis.
Donna, NY