Hell all 6.7mg pred had to go up 1mg yesterday

[suszannah]

Hello can anyone please advise, managed to reduce pred to 6.5mg dropping 0.5 per month .... last dropped Monday, not feeling that good all week so took 1mg extra yesterday can anyone please tell me how long to stay at 7.5 and would I have to go through a month of 7.5 and 7mg to get back to 6.5? GCA/PMR CRP was 9mg 2 weeks ago.... many thanks

[PMRpro Ambassador]

If 6.5mg wasn't enough - why are you desperate to go back there? 7mg seems more sensible for a few months. You aren't reducing relentlessly to zero, come what may. You are looking for the lowest dose that gives the same result as your starting dose did. That will vary over the course of the illness and it sounds as if you have reached the end point FOR NOW. It doesn't mean you won't get lower, just perhaps not yet. Give it a couple of months before trying again.

You could take 7.5mg for up to a week and drop back to 7mg straight away without a problem.

[suszannah in reply to PMRpro]

Thank you PMRpro it's mainly that it has taken me since 2013 to get this low and GP keeps telling me they want me off them as I have been on them so long, was stuck at 10mg for years and been since May getting this far

[PMRpro Ambassador in reply to suszannah]

The GP needs to know the nature of PMR - HE may want you off pred, you will get off pred when the underlying cause of the symptoms we call PMR has burned out. And 6 years is about the median time for that and then get off pred. At 10 years some 40% of patients diagnosed with PMR still require some pred, albeit at a low dose, maybe 5mg. There is no way of knowing whether that is due to the PMR or to poor adenal function. Either way, it is a fact.

Print this off and include the link to the original at the bottom of the article:

medpagetoday.org/rheumatolo...

And don't be forced into reducing too fast at this stage. Because all that will result is a flare that will require you to go to a higher dose to control it - exactly the opposite to what HE wants.

After 10+ years on pred I am still at 10mg - but I am well and can function pretty well, I have no identifiable pred adverse effects. And most of them can be managed or avoided anyway.

[suszannah in reply to PMRpro]

Fully understand what you are saying, will follow the advice you have given .... a few pred effects here, Osteopenia, cataracts and thinner skin so bruise and rip skin easily plus pre diabetes ... be happy if I could at some point get to 5mg at stay there, just taken 7.5 so hope I don't need yo go any higher .... thank you for your valuable input

[PMRpro Ambassador in reply to suszannah]

There are several on the forum who reversed their pre-diabetes by cutting carbs - ask and they will tell you their experiences. My Hba1c is fine - has never risen since I started low carb eating.

[suszannah in reply to PMRpro]

Thank you will look into that

[HeronNS in reply to suszannah]

I was one of those whose blood sugar went high when I started pred. Low (nearly no) carbs brought the readings down to a safe level.

[PMRpro Ambassador in reply to suszannah]

A few of us really like this site for info:

dietdoctor.com/low-carb

Simple and lots of pictures which makes it easier to see what foods fit where in the low carb scenery.

[Linny3 in reply to suszannah]

I understand what you are saying. I really sympathize with the side effects you experience.

I have a lot of side effects with pred. If it weren't for the pain, I wouldn't put up with all of the side effects. I wonder how bad the side effects will be for my body in the long run.

I have put on 15lbs in 2 years, thin skin, lots of bruising and tearing of skin and tiney bursted vessels. Very short tempered (complete change in personality) extreme tiredness. The worst of all is the sight disturbances. Often in the morning my eyes just won't focus. After a little while they come into focus.

My prayers to all those who have a hard time with side effects.

[suszannah in reply to Linny3]

Yes the side effects are not good it's mainly the pmr that causes me the most problems, had to use the stair lift most of the week but tonight I could walk up and that was with an increase of just 1mg for 2 days, it's crazy how a small increase can make such a difference

[Hidden in reply to suszannah]

Oh yes even 0.5mg can make that sort of difference.