Update after Rheumy apt - Tingling legs, arms and pain on right temple area.

[Sunnyd7]

Saw Rheumy today regarding tingling in legs and arms, pain and tenderness in right temple area. Also spoke to him about his requested reduction from 7.5 mg to 6 mg.

Told Rheumy the reduction to 6 mg was way to much and caused a flare. He said he was sorry I had a flare and reoccurrence of pain. He asked me about the process I took to get back to 7.5 mg (current level I am taking). I told him I went up to 7.0, then to 7.5 then to 10 mg for 4 days, down to 8mg then down to 7.5mg.

Rheumy feels that all my symptoms are a result of not enough prednisone to handle the remaining flare. He states he wants me at 8.5 mg for a month, then 7.5 mg for 3 months, then he wants to see me and states if i can he wants me to start to reduce by .5 mg a month at a time with the goal being no flares and the lowest dose of prednisone to manage the PMR.

Rheumy explained that he did not want me to have pain at all. PMR is sensitive to the level of prednisone, so we needed to find a good dose for me so I didn't experience any setbacks. I was very happy with his response to me and the caring nature he showed me.

Also got my Dexascan results:

L2 Vertebral - T score: -1.4

Left and right his - T score -2.4 (osteopenia)

[DorsetLady PMRGCAuk volunteer]

Hi Sunnyd7,

Good result and response from Rheumy. Pity you had to flare first though- but perhaps it will make him think for future reductions and patients!

Your new regime will work for you I’m sure!

[Sunnyd7 in reply to DorsetLady]

Thank you DL. I am feeling hopeful again that I can get back to feeling good.

[DorsetLady PMRGCAuk volunteer in reply to Sunnyd7]

I’m sure you will.

I find it so frustrating that people have to suffer unnecessarily because of tapers that are too fast. I guess it works for some, but I doubt it’s as successful as the “experts” seem to think it is. I know it’s done to limit the total amount of Pred consumed, but very often it has the exact opposite effect!

Never mind, I’ll still keep banging my head against that wall - along with a few others on here! 🤦🏻‍♀️

[Sunnyd7 in reply to DorsetLady]

It is frustrating, at least he had compassion and said he does not want me to have pain in the future. He also said my idea of only reducing by .5 mg is a good idea. So I felt good about that. I got the impression that he thought since I was doing so well on 7.5 mg in December that he thought I would be able to find the smallest dose I was comfortable with within a one year time frame (originally diagnosed in Feb 2016). But now he is looking at possibly 2 years to try to get to the lowest dose. He won't rush me to reduce again that is for sure.

[PMRpro Ambassador]

Sounds like a decent rheumy!!

Yes - DL is so right. When you rush at things it so often ends in tears - slow and steady avoids a lot of heartache.

[Sunnyd7 in reply to PMRpro]

Yes I feel he is a good Rheumy compared to some I jave read about on here I feel very fortunate.

[Hidden in reply to Sunnyd7]

I had similar discussion with rheumy this week and it makes big difference. 👍