About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (21)

Mar 15, 2018 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

As always, there are always questions … such as – do low doses of prednisone cause the bone loss issues as much as higher doses? I don't think there are any answers to that question as far as my googling has discovered !

Mar 15, 2018 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

Thank you, John. As always, you have some great information to give us all ! I will read both of these.

Jan

Mar 15, 2018 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

I haven't written for quite some time, but another issue has recently "cropped up". So, I was weaned down to 1 mg of Prednisone over a year and my pain came back. My doctor knows about my dislike of prednisone so she proposed that I take 10 mg. for 2 days (to "jolt" my system, I think were her words). She asked me if I remembered at what dosage during my weaning did I feel I could function the way I wanted to function with an acceptable pain level. I told her 5 mg. I have been taking this "maintenance dose" since then and I have my life back ! I can swim, do aerobics, yoga, garden, etc. YAY ! I do have some pain in my hip flexors and neck/shoulder area but it's definitely NOT like it was over a year ago ! She told me to be prepared to be on the 5 mg dose for a "while." Next appointment she hit me with the downside – prednisone is NOT good for bones. I have osteopenia anyway and she wants me to start taking the generic form of Fosamax because of the prednisone. I am a 70 year old small boned, white, caucasian woman – but VERY active (do lots of weight bearing exercise and eat a good diet). I have networked with friends and googled it to death. The doctor told me my bone density scans (every two years over the course of 16 years) show bone loss in my hips & spine of 22%. I picked up the script today still not sure I'm going to start taking it. One of the side effects is bone pain – sheez … I've been suffering from bone (joint) pain (as you all know) for the past year and a half : ( I guess the only positive is if I have bone pain, I can quit the Fosamax, cold turkey (according to the pharmacist I talked to). Has anyone out there had this situation or know anything about bisphosphonates & PMR? Another conundrum with PMR & bisphosponates is, how do you know if your bone pain is from the Fosamax or the PMR coming back?
Thank you for reading this lengthy post !!

Jan 30, 2018 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

Thank you for all this helpful info. on CBD. I can go down the street and check out their products.

Jan 30, 2018 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

Yes, I have done some research into CBD. We have a local shop here that sells to many of those suffering from PTSD. The product they sell is produced by http://www.greenroadsworld.com. They have a lot of information about cannabinoids on their website. So far, I’m too chicken to use it and want to get more information under my belt.

Jan 28, 2018 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

  I was finally successful.  I was trying to add her name under "Add New Recipients" and it wasn't working for me.  Thanks again for passing along all the great information (including how to use this valuable resource) !!

Jan 28, 2018 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

So, I did that … I'm trying to send a message to a member who joined recently … I think it's helpwithpmr or similar.  Anyway, I did what you suggested and her name did not appear in the area where her Connect user name should appear.  It tells me "at least one member should be selected".  When I scroll down below in the list of names, her's is not there.  Nor is mine. 

Guess I'm missing something : 0
Thanks for all your help.  I am enjoying reading all the posts.  Once I get the hang of the web site, it will be much better.  I'm also getting a lot of posts for diseases I don't even know what they are !?  I thought I signed up for just PMR.?
Jan
P.S.  I think I saved some instructions that one of the mentors sent to me.  I'll read through those again.  The problem may not be on my end.  Maybe the helpwithpmr person has not done something on her end.?

Jan 27, 2018 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Could you explain how I can send a private message to someone.  Each time I have tried it gives me a message that I have to choose one member … I typed in her connect name and that's what it prompted me to do.
Thank you.