Mudcat Café message #3522967 The Mudcat Café TM
Thread #142631   Message #3522967
Posted By: Nigel Paterson
05-Jun-13 - 07:19 AM
Thread Name: Jane's Rainbow: for all needing support & comfort
Subject: RE: Jane's Rainbow: for all needing support & comfort
Able Seaman Paterson checking in. A very warm welcome to Tamara; a good place to 'sling your hammock'. I can empathise very strongly with your situation. I was diagnosed with PMR some years ago & for the last two years have been trying to 'taper off' the steroids, which, whilst they relieved the PMR symptoms, have caused permanent or very slow to recover from damage (Diabetes, Osteopúnia, Fatty Liver, Depression). So far, I've made three attempts, each of which takes months, because the tapering has to be done so gradually & each attempt has failed as I approach the lower end of the dosage. All the symptoms return & I'm back to square one. As this third attempt to rid myself of steroids has failed, the only alternative seems to be immuno-suppresants (chemo), the thought of which does not exactly fill my heart with glee! As you probably know, PMR can disappear just as quickly as it appears, but in a minority of cases, it hangs around, sometimes for life. I am resigned to the fact that I may have to take some sort of medication 'in perpetua', if so, then I want any side effects to be as few & benign as possible. Tamara, the only advice I can give you is ask questions of your Doctors. If you don't get the answer you want, ask again, be persistent, explore as many options as possible. I wish you good fortune as you venture forward on this rather bumpy, bendy road. Post again when you're ready, there is much wisdom & experience to be found aboard 'The Rainbow'.
       My Dear Pat, I echo the words of encouragement expressed by so many over the last few days. Through all the medical complexity of your condition, I am always struck by your refusal to allow it to overwhelm you, although I suspect there must be times when it feels like it could. Your outlook remains strong & positive & as ever, peppered with humour. I have learned much from you about facing & dealing with adversity. Continue striving, my Dear Pat. You are precious & much-loved,
                                                                With Love to You All,