As I said in my title, I am recently dx'd with PMR. I also have Pulmonary Hypertension caused by chronic pulmonary emboli. I am a retired RN with 42+ years of experience, mostly in crital care areas. I am blessed with above average intelligence and pain management has been my specialty for many years.
I first got sick with the PH in 2009. Since then things have been up and down, mostly down. I had WLS in 2010 and was able to lose 130#s. I have kept that off. I need to use O2 24/7. I was started on a new drug, in January of this year, called Adempas. It has been a miracle drug for me. I now feel better than I have in over 30 years! PH is one of those "rare" diseases for which there is no cure. But Adempas has given me my life back.
I was doing so well and then in April things started going south again for me. I had to have emergency surgery to have my gallbladder removed. Did fine with that, no problems. But it was while I was in hospital recovering that I started having symptoms of PMR. My PMD tested me for auto immune dx but labs came back negative. I continued to be in unbearable pain and he retested me and viola, my ESR and CRP were through the roof. Hence the dx of PMR. I was started on Predinose at a high dose and was being titrated down every 5 days, when I developed the worst case of shingles I've ever had ( had them twice before). The pain this time was excruciating. On Saturday I had reached full crisis mode and felt if I didn't get some relief of the pain I was seriously considering harming myself. Thank God I did not act on this impulse and with some much needed restful sleep and medication I passed the crisis and today feel so much better. I know this is just the start of my recovery and that it may take years or I may never fully recover from either the PMR and/or the PHN from the shingles. I looked for a forum that had others with my same situation and all I could find was one in the UK. I signed up and have received several repies already.
Today I just happened to find this site and decided to register, so here I am. My name is Christine and I have an auto immune disease!