Not the best day

Bones, joints and muscles
1

Hello

Fourth day of 20,(60 40 30 25 )  supposed to go to 15 on Friday

For some reason this day has been  tough.

My cheeks flushed, crazy fatique but cant sleep,and just sense of unwell

Just a wet noodle, although i havent gotten an increased appetite on the pred, today i really had to force myself to eat my protein / veg meals

Felt too tired to eat. 

As always, not sure if this is result of lowering pred, or needing more.

No joint / muscle pain though, or headache, vision seemed a bit off but in a different way then when this all started. And for the first time in my life getting heartburn!

maybe just one of those days...

Best to all

Gina

 

2

I think that your changes in pred dosage may be affecting your metabolism in some way.

Unless you are critically low in weight, then if you don't feel like eating then don't eat, and give your digestive system and especially your liver a break by fasting for a day.

And if you feel like taking a nap, I would do so as needed, when needed!

If/when you feel like exercising, it might be good to do so right when you feel most energetic.

I think that your body is just struggling to maintain it's equilibrium in response to the changing pred dose.

3

I agree with Dan - I think your body is rebelling at being asked to change its dose so frequently.  

I've read back through some of your posts - is your rheumy still treating you for GCA? If so - that is a very very fast reduction and few rheumies would go below 20mg for some months - not after a month. Are all your GCA symptoms still under control?

4

Thanks Dan & Eilleen

I can easily not eat for a day, although less weight than i have been for years now,thats a good thing as I was in the process of trying to lose when this started.

The Gca, biopsy came back neg, She ( dr) thought it was most likely correct, and there might have been a bit of a crossover in the beginning due to some blurred vision, and headache. Never had scalp pain to touch and headache was more base of head left side to ear,  Had severe shoulder and neck pain, and hips  . Fortunately when I googled that sudden onset pain PMR / GCA came up so I was armed with knowledge and got on pred within days.Which all resolved dramatically when started 60 mg.  

Neg biopsy, last sed rate was 9 last week , her thoughts were to get down to ten and stay there for longer period of time .Watchful of symptoms. 

BUT 

I am going to ask her for some 1 mg pills for accuracy and go slower.and go back to 

25 for awhile as I felt better overall there though that too took awhile after drop from 30. Part of me was going along due to fear of the side effects  of moon face, facial hair , hump etc, more than happy to get off this , But these side effects of quickly dropping are life altering. And then there is still that fear that Gca is lurking, and dropping is foolish, My GP thought I should have been on 30 longer. and has no faith in biopsys  Rheumy vs gp

So thanks to you both and others on this site, irregardless of her instructions, and my side effect fears, I am going to slow it down

Maybe my strict dieting will ward some of that off.

Other than hitting the wall at 5 6 oclock, truth be told I felt best on 30,  so maybe bump to that, and tritrate from there.

May need something for what I think is reflux starting, hate to be on another pill, but hoping this too will be temporary.. 

Thanks for a place to vent. hoping you are both well

gina

 

5

I've told this story before but maybe worth repeating.

I have a friend who was started on 60 for GCA ( not PMR in his case. )

Like you,  he kept balking at the twenty stage, he was frustrated and concerened.

It was his florist wife who suggested to GP that maybe smaller steps would be a good idea. This was more than twenty years ago before any mention of more than 10% reduction causing problems.

I don't know exactly what reduction regime solved his problem but I do know that he got to zero pred and never had a recurrence.

6

If you just worked on the PMR symptoms you'd now be at your starting dose - and if it were me I'd ask to stick there at least until you feel "less worse" before trying just 2.5mg at a time on the way to 15mg.  And I wonder if splitting your dose might help the 6pm wall?

7

Thank you. both

I am going to slow it down..  Took 20

and will take 5  midday. . 

take good care Gina

8

Three times I have been started on prednisone for pmr and all three times the second dose of 60 mg made all the pain go away. When I got to 10 mg I stayed there and that worked well. 

9

I know the epossibility of GCA is a confounding factor.  But assuming you have PMR and are reducing on that basis I think that rapid reduction is very hard on the body once it has become used to the pred.  You may indeed only need a small dose to control symptoms, but it is very stressful for your body to have to reduce in large steps so frequently.  You are more likely to have a successful reducing taper if you can be allowed to adjust to each dose before moving on to the next.  It may seem to slow things down for a while but I can almost guarantee that in the long run a slower more gentle taper with smaller steps will result in a lower lifetime dose of pred.

10

Thanks for the replies.so appreciated

I was told by nurse to take 10 mg  this past morning so brought me back to 30 mg over the past 24 hrs.

What a difference that thirty makes, in the side effect of brain fog and malase  that had gotten better at 20, but all else went haywire. so had to try to raise it. 

Yes you are so right about the GCA possibility mudding this up. 

Having some discomfort left side of face, but thinking that can still be from biopsy incision..but truth be told  a  few other things that were not there on higher doses, but vision fine... Maddening

My rheumi will call tomorrow, her nurse said take twenty five  at 2am ( my time choice)  And will call in 1 mg tabs for slower decrease

Feels hard to go up when so close to 15... but. I know its the right thing to do. Many of you have gone thru much worse

Best wishes to all,

Good night for me , good day to  some

Gina