Hello everyone! Hubby and I were just talking last night..today is his 1yr anniversary of being diagnosed with PMR. I can honestly say, it's been a heck of a year at our house. He started at 24mgs of pred. a day...and was still in a lot of pain. The docs didn't want to up his dose as he is an insulin dependant diabetic and we all know what the steroids do to glucose levels. So...the recommendation was to take extra strength tylenol, 2 pills, 4 times a day. It took alot of work to get him to understand that it would help and that it was only for the short time. (Thanks to those of you that responded here with info on the tylenol use!) He finally did try the tylenol regimen and had ok results for about a month. Then his hands and right wrist went crazy, so on to the Plaquenil. After 3 days on this medication, we saw a huge difference. The pain was not gone, but alot more tolerable. He was also told to wear a wrist brace at night...as he tested borderline for carpal tunnel. After being on the Plaquenil, prednisone, and tylenol for a couple of months...he began to taper the tylenol. His prednisone doses were slowly getting lower...finally! One day dear hubby hands me the tylenol bottle and asks me to put it away...out of sight. Little did I know, he had been able to stop all of the tylenol. He had been without it for over a week before he told me, as he didn't want to jinx himself. Needless to say, the tears flowed from me at that point!!! Amazing that something so "simple" could make me so happy.... He still takes the Plaquenil and is down to 4mgs of prednisone as of today. There are so many things that he does on a daily basis now, that he couldn't even think about a year ago. IE..putting on a belt, putting on shoes, tying them, taking out the garbage, carrying anything, opening a can or bottle, or even getting out of bed!!! Last year we brought my nephew with us when we went to get our Christmas tree, as we always cut our own. There was no way that my husband was going to be able to handle that task....this year....we are going alone, unless the nephew wants to help pick out the perfect tree :) It truly is a horrible disease and we have been reflecting on our past year....and really giving thanks. Thank you all for your words of wisdom, and support...it helped more than you will ever know!
Michelle,
So glad to hear that your hubby is doing much better! This PMR thing really does put a crimp in your life but it's stories like yours that gives me hope for the future. Keep posting and let us all know of his progress. Best wishes to you and your family and good luck on picking out that Christmas tree!! Debi A.
Debi;
Thank you so much for taking the time to respond. We have been thru the he$$ we all know as PMR, the last year has been the worst of my life. However, it's so nice to see the progress hubby has/is made/making. My holiday wish is that the researchers find more info on how to help PMR patients deal with this dreadful disease. Please have a blessed holiday season!
Michele
It is a slow jorney but one that does end .Glad your hubbie is doing better.
Thanks Ladies! Marianne, hubby was put on the Plaquenil just before you were...he had great results as well. He went down to 3mgs of prednisone 4 days ago and has had no ill effect from it!! wooohooo! Although..he had dental xrays last night and his jaw bones have deteriorated tremendously with just one year on the prednisone! Scary stuff. But, when you need it, it is a miracle drug. Thank you so much for all the well wishes from everyone. We just wanted to let those of you out there know...it is a slow journey...and yes...one that eventually seems to end. Well put Marianne! Happy Holidays to you all.