Thanks very much for the replies to my previous question. To review, I was diagnosed with PMR/GCA over three years ago and for the past year have been slowly tapering down, and was totally pain-free until reaching 7 mgs this month. My first question was this: how do I know that the achiness I'm feeling is PMR rather than simply withdrawal symptoms resulting from the taper? Thanks again for your answers.
My second question is this: how do I know the achiness I'm feeling is PMR rather than pain associated with my adrenal glands attempting to turn back on? From what I've read on this message board, a lot of people have serious difficulty in the 8 mg to 5 mg range, which is apparently the range where the glands are supposed to turn back on, so how do we know that pain at this stage isn't in fact our glands telling us something? I am worried that maybe my glands are not turning back on, and that maybe I will be stuck at 7 mgs forever.
By the way, I got PMR at age 57, soon after losing my job and house, which has caused some people to speculate that stress may have contributed to my susceptibility to PMR.
PMR/GUY First, I have few answer and more question. I am nine months into this relationship. And certainly not enjoying it much. One thing I do know, I have never been pain free. So I am totally jealous. I would think that the adrenad gland could be lab tested. I am hoping since my sed rate is at 11-as opposed to 56-that my pain in due to drug withdrawals.S0, perhaps lab test could answer most of your concerns-and then you could move forward from there. I just know that the withdrawl is almost-not quite-but almost as painful as the full blown pmr. I am determine to get off this stuff. Have been at 9mg for 2 1/2 weeks. Decreasing 1/2 mg on Monday. Hoooopeee--Hope you have a good weekend-Isn't this site the best- Central California Coast wishes
Lonna
Hi Lonna and PMRguyI am down to 1mg of prednisone, but I am also on Methotrexate. The pain I feel now is different than before I took either of those prescriptions. So maybe the pain now is because of withdrawal off of prednisone. I have to quit prednisone because of higher pressure in my eyes.
My pain started in my lower back first and then the knees. I couldn't bend my knees, like pull them up to your chest. They would feel swollen. They do not now feel swollen but they sort of ache. My arms ached, but they don't hurt now. Knock on wood.
My rheumy is going to do something on Monday about the Methotrexate because my blood tests are elevated. Her nurse mentioned Enbrel....even if the insurance company would agree to pay 50% it is too expensive. I didn't know I had drug coverage until researching it further. The prescriptions I take are ridered off the policy.
I think my whole process with PMR started when I lost my job four years ago. It started with pelvic pressure because I have low back pain, and it is a referred pain. I had all sorts of tests to rule out tumors, cists, etc., but still had and still have pelvic paid and groin pain. My groin pain is the worst, like when you want to get out of a chair. When I go for walks it doesn't hurt....just my lower back.
I would not rule out stress as a factor for this disease. I do have other family stress in my life now that is really none of my business....but most people know that if you have a family, their troubles are your troubles.
Mary
edited for spelling and to add my name
Margaret and Mary,
Tell me, did you gain weight with the predisone?? Me, I am at 30 lbs-and hating it. At what dosage did you start to lose any of unwanted fat?? I also have these pockets of fluid (I guess) at base of neck and undecollar bone.Not very attractive to say the least.
Lonna
Hi Lonna
I didn't gain any weight. I am already 25 pounds overweight. So thank goodness. I have had bags under my eyes for years. I blame that on the hypothyroidism. But they extended farther up after on the prednisone, and now even at 1mg, they are still there.
My groin and my knees are sort of painful. Nothing unbearable. Something is going to change though Monday when the Rhemy says that I probably have to quit the Methotrexate because of high liver count.
So now we need to try something else, and it is going to be waaaaaaaayy more expensive. Hope it is something that agrees with me and I can take. Guess we have tried the two least expensive.
Prednisone at 20mg, took away my pain within a day. Even going down to 15 two weeks later it stayed away. She made the decision then that I should do the Methotrexate so it would be working when I started to be weaned off the prednisone. That was a good decision, because the prednisone dd raise the pressure in my eyes, so I have to quit taking that.
I didn't start feeling pain in my groin and knees until was at 3mg and 2mg. Then it was just twinges, now at 1mg it is full time. Sitting here now, I can feel my knees are uncomfortable.
I hope there is something not too expensive that wlll with me. Mary
You may want to get a bottle of 1mg. to help taper more slowly. I'm thinking of that. I figure I'm on about 7 1/2 or so because I cut a 10mg in half and the cut the half in half again so that I am taking about 3/4 of the 10mg pill. If I cut it in half, making 5mg.twice, I could maybe add a 1mg. to the 5 mg tablet and have 6mg. instead of dropping right down to 5. It may be to drastic otherwise. You could do it even more slowly around these milligrams by taking a 5mg and two 1mg's for a couple of weeks.