Hi I am Enan. I live in Illinois, USA. I am 70 years old and was in good health until I 'joined this club' with GCA and PMR in June of 2016 with a positive diagnosis in August of 2016 (I temporarily lost sight in my left eye at this time). I started at 60mg of Prednisone, started to taper had a major Flare and went on the very slow method I learned on this website. I am now on 14 mg of Prednisone and Actemra.
I am retired and married. My education includes an MBA and a D.Sc. (AM).
Welcome to the group Enan. I'm sorry you had to join. It must have been quite frightening to lose the sight in one of your eyes. Have you got it back yet or is it gone for good?
I've had PMR for a year and I started at 20 mg and I'm at 14 now. But that's because in May I had to spend a few days in the hospital where they put me on high doses of prednisone (50mg then down to 30mg) and when I got out I didn't know what to start with so my rheumatologist suggested 15 mg. That was in May and you can see I haven't had much progress and my rheumatologist isn't real happy with that.
AMkoffee, so frustrating. What keeps you from tapering? Markers? Symptoms? What kind of symptoms?
I wish I knew. Before I went into the hospital I had just started 10 mg. But I could tell it wasn't going to work but it was the first time I've been able to get below 11 mg. After five tries. I had a pre-existing condition before pmr came on. I have severe lower back pain. In fact just had to have an MRI on my back the other day because I've had so much problems with it as of late and I had not had an MRI for many years. When I first started with my lower back pain I had two bulging disc with slight impingement. Now I have 7 bulging discs with slight impingement on a few of them. There were other things also but nothing significant.
So with that all going on and being on narcotics to control the pain I was surprised that it did nothing for my PMR pain. Until I started going to PMR sites online and finding out that pain meds just simply do not work for PMR pain.
My rheumatologist has even tried me on rheumatoid medicine even though I tested negative for it. But that didn't work either. One lady who was very well informed about PMR told me the other day that people's bodies utilize prednisone differently. Some might utilize hundred percent of the prednisone they take and another person might not even absorb 50% of it. That's also a condition with opiates. Not that I have that condition but maybe I do with the prednisone.
So many sources of inflammation in your body with all that spinal deterioration, maybe that is making it hard for your body to stop fighting so hard.....At least I keep thinking that PMR is a constant reminder to me to be nice to myself, and to treat me self as a convalescent. Not that I follow those instructions all that well.
I've spent the last few weekends buying planters and pansies. Planting pansies so that when the adrenal fatigue hits, as I try to continue to taper at 9.5 and below, I'll have something pretty on the patio to look out at and smile at.
Hi Amkoffee,
I was lucky I did get my sight back. My Eye Doctor reacted very quickly when it first occurred and had me on Prednisone fast. I would not be too concerned about the speed of the taper, slow seems to be the best for me. Thanks for the reply.
Welcome Enan. This is a great place for support. I too am sorry you had to join. I an hoping your eyesight is improved. Did the GCA come on suddenly?
Hi Hindags,
It hit very hard and fast at the beginning of June 2016. Intense pain in the joints, night sweats, lost 40 pounds of weight, and I was anemic (my inflamation blood test were very high). My Doctor did many tests and sent me to three specialists. They could not find the cause. In August I woke up and I had no sight in my left eye. I thought it was a vision problem and went to see my Eye Doctor, he saw me the same afternoon. He knew what it was immediately and got the 'ball rolling'.
The 60mg of Prednisone worked very fast and I have not lost my vision since. I am now on Actemra and Prednisone (14mg). GCA/PMR are terrible diseases but at least now I can see. Thanks for replying to my post.
Good that your eye specialist was so on the ball enan-illuc and that your vision problems were dealt with swiftly. Welcome and hope you continue to make good progress. Regards, Jackie
Thank you Jackoh.
I'm in Illinois! Leaving for our winter home in Florida today. Am currently on 7 mg, got pmr in August. 2016. The beast is still active, pain, fatigue, pred side effects. Am going in the dsns method starting NOW! Nice to meet you...hugs from springpatch. 😂😂😂😋😋😋
Hi Twopies! The DSNS method does work. I have found it to be effective. Thank you for your reply.
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