Hi, I am so very glad to have found this message board. I have had PMR for about 2 and one half years. It has become a frustrating and exasperating process. I do not know what to do for my health at this point. I am 53 years old and have been under the care of a rheumatologist this entire time. At the start of my treatment my ESR was 130. I was prescribed 12 mgs. of medrol and have been weaning off of them ever since. My syptoms at the beginning of this disease were extremely debilitating. I could not even get out of bed by myself. Getting in and out of a chair or my car, took a lengthy and painful time. I was so relieved to have the steroids work their magic. It was so wonderful to feel good again. However, the steroids quickly took their toll on my body. My rhuematologist said that I was extremely sensitive to their side effects, although he did not lower my dosage by much. I had developed within three months a hump on my back, a moon face, thirty extra pounds, no hair on my legs but a lovely moustache on my upper lip, and extremely swollen ankles and feet. Two years ago a bone scan showed me to be in the very early stages of osteopenia. My vision was near-sighted, but normal and my blood pressure was great. Now I have complete osteoporosis of my spine, hips, neck and femur. I have developed serious steroidally induce cataracts in both eyes, glaucoma, hpertension that has put me in the hospital three times, and lack of healing of 6 ribs that I broke lack summer. I was in the emergency room last month because I was terrified that I had developed temporal arteritis.(I woke up with terrible vision in my right eye.I couldn't focus and everything was completely blurry.) This happened to be one week after I had attempted to reduce my maintainence dosage of steroids from 4mgs. down to 1 mg. The doctors were concerned and gave me a high dose injection of steroids and my rheumatologist upped my low daily dose back to 12mgs. a day. This episode is when it was determined that I had cataracts from the steroids and glaucoma. No change developed in my vision with the increased steroids, and my opthamologist believes that I suddenly reached a threshold with my cataract that made it noticeable to me. I then saw my rheumatologist and explained to him that the steroid increase had not helped the recent back pain I was experiencing and that over time my symptoms had changed as to parts of my body that were affected. His advise was for me to taper off to the old 4mg. dose once again and then in two weeks have a C-reactive protein test done to determine if my sed rate (which was 60 in the emergency room) had come down. I expressed desire to be taken off the steroids and he said that depending upon the results of my sed rate, we would discuss it. At about the same time as I was to have my sed rate checked, I came down with a strep infection. I decided to wait until the antibiotics had cleared it up before taking the sed rate test, just in case my sed rate was raised by my being ill. Putting it off so long, and feeling fairly okay, I stopped taking the steroids without his permission and have been off of the maintenance dose for the last week. The last three days have been awful. I can't sleep at night for the pain, and am so stiff I can bearly get out of bed at all. I do not know what to do. I do not want to go back on the steroids that have pretty well wrecked my entire body, yet I can't continue function like this. I am currently taking 800mgs. of ibuprophen, three times a day, which helps during the day. I am allergic to Alieve, and don't want any more damage to be done to my health from possible side effects from other prescription medications. I am at wits end. I do not want to risk blindness from a high sed rate. Does anyone know if NSAID's like ibuprfen will signifigantly reduce the sed rate? I would greatly appreciate any help on this horrible disease process and course of treatment that you would be willing to share with me. I am very sorry to have written so much, but at this point I am completely lost. Thank you for being there. Susan M.You must be very seriously careful about coming down off the Pred. even at low dose. It can shut down your kidneys and adrenal glands. I lost a friend with Lupus that way. Must be very gradually done with your Doctors supervision.
I so sympathize with your plight. The steroids are awful but then help with the pain.
Vicoden works well usually for the pain and you must determine for sure about the GCA. If so may it be an option for you?oh susan,,,pls go back to rhumy or go for a second opinion, I know u feel u have to do something on your own for sanity's sake but I highly think you have to have expert medical care, anything you take from a forum might counteract his advice as we are the "sufferers" and do not have the right to tell you what to do. In fact I find myself not knowing what I should take or not take, my doctor has me on demeral, so here I am on a narcotic???do u think they know??My heart goes out to you, pls seek medical help asap..Praying for u to do the right thing. Prayer for you...Rose
Kewanee is absolutely right - it is most important that you don't stop taking prednisone "cold turkey" - the dose must be tapered to permit your body to start producing it's own cortisol, otherwise you are in a life threatening situation.
Note that when you are sick, that's when you need a higher dose of steroids to get you through. Even someone who has been off prednisone for many months will have to take it again if they go in for surgery or have a serious illness. That is an especially bad time to reduce your prednisone dosage.
I certainly sympathize with you about the side effects of prednisone, and hope that you are soon able to get off it. Sometimes supplements will help to manage the side effects: calcium, potassium, chromium, etc.