Hi Christi,
I'm just about to celebrate my 6th anniversary of being diagnosed with PMR, although I suffered with it 4 months prior to being finally correctly diagnosed by a physicians assistant. It was a relief to finally put a name to the devil that had suddenly crippled a man of 61 who worked a physical job full time. The initial treatment with prednisone was great with the pain virtually vanishing overnight but hell began at the hands of a rheumy who was determined that I had to be off prednisone inside of 2 years. I had 2 huge flare ups and had to move up to 30 mg of pred (I had started at 20). I learned quickly that there are rheumies who are good and others who are almost clueless about PMR and long term prednisone use. After joining another forum, healthunlocked.com, I educated myself and became better equipped to understand and work with prednisone in my life. My biggest hurdle was getting below 10 mg but after a number of flares I have taken the very slow route, reducing 1/2 mg every 7 weeks. It's been a long trip but I have kept the PMR "asleep" while still working full time. Keeping the inflammation under control is what it's all about. That's a real dance, believe me, but you learn to pay attention to your body and watch for what might be the beginning of a flare that tells you the dose you're taking is a little too low. I'm currently at 3.5 mg after moving up from 2.5 when I started feeling more pain again. I've been fortunate not to have weight gain issues. At the beginning I lost close to 40 pounds in 5 months mainly due to the pain which totally killed my appetite. I have had sleep issues off and on but do the best I can. Skin is paper thin now and I carry my supply of band aids in case i bump something too hard. I have neuropathy of my feet but thankfully not severe, mainly noticable when I have the shoes off. Worst side effect for me has been muscle wasting. I have a good relationship with my 4th rheumy who agrees with my slow reduction of prednisone. He feels that if I had to be at 3 mg of prednisone for the rest of my life it's no big deal, as such a low dose has virtually no side effects. I agree.
After all, it's about quality of life, and without prednisone I would have been very disabled. After 6 years I'm having a challenge getting the adrenal glands to wake up again after their hibernation but it'll get there. I'm thankful for sites like this and Healthunlocked so one can learn and compare notes with others who have PMR and understand living with with it. Best of everything to you and everyone here.