Posted , 12 users are following.
I have now reduced to 7.5mgms Pred. I am now overwhelmingly tired and my balance is pretty poor. No pain. Is this par for the course? I am on dead slow reduction...not in a hurry. ESR repeated it is 8.
0 likes, 16 replies
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david14272 caroline83483
Posted
sue-dorset caroline83483
Posted
as David said, par for the course, and at the level you're at, your own body should be waking up and doing its bit. Unfortunately, sometimes that takes a lot longer than we'd all hope.
As for your balance, you need to do things a bit more slowly, like getting up, changing direction etc. be a bit more deliberate in your movements. It feels a bit odd to start with, but it helps. I had labyrinthitis years ago (before GCA) and my balance was all to pot. But with a bit of 'deliberate' thinking it improved.
debbie27473 caroline83483
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david14272 debbie27473
Posted
caroline83483 debbie27473
Posted
2 hours a day ( in 4blocks) have not resorted to using a stick yet but have been sorely tempted.
I am 75 and until now I have been very fit and energetic. Let's keep on this journey together!
Keep positive
Caroline
barb30898 debbie27473
Posted
i am still at a stage, that I still don't know for certain that I have a flare up, or, or how long it lasts, or what to do about it.
Do I try to work through it without upping the Pred? How much to up it?
And like you, Debbie, I don't know which condition is causing the problem, as I have a few.
i also don't quite understand my limitations with regard to exercise, physical work, as well as the emotions..
after 18 months, I was down to 1 mg. Pred, and doing ok, for about 2 months.
Then I had to help clean out a deceased cousin's home, who was a hoarder.
it was emotionally wearing and much dirt, dust and hard work to deal with.
i became more unstable, fatiqed, heavy legged,, with a general feeling of malaise.
i wasn'tsure of cause. At first, I thought it might be a virus.
i finally moved up to 4 mg Pred.
feeling better, but may have to up dose, again.
where does one find out how to deal with these challenges.
the rheumatologist is not helpful, at all.
the discussions have been invaluable, but I am still so confused about my limitations, as I was 'superwoman' all my life
sue-dorset barb30898
Posted
You just have to admit, that you can't do what you used to, you need to pace yourself when you do do things, and sometimes you have to say no when
people ask you do things. None of which comes easy!
Have you read Kate Gilberts book - Living with PMR GCA - a survivors guide. Available from Amazon or PMRGCAUk web site.
Hopefully you you will soon feel better on 4mg, but if not then go up again to 5mg. You need to get your inflammation back under control before you consider reducing again. Then use one of the slow plans, and only go 0.5 mg at a time. And if you going to do something that you think is likely to cause stress don't consider reducing before or whilst doing it.
We all want to get of Pred, but it's not a race, and there's no point in just ploughing on hoping everything under control.
It's not easy, but you will get there, it just takes time - and patience!
I started on 80mg three and a half years ago, and now am down to 4mg, so my patience has been sorely tested at times.
andrea93419 debbie27473
Posted
I'm on 9mg pred, diagnosed with PMR March 2015. I've picked up on the 'nausea' you mentioned, Ive been suffering from that along with a sort of lightheaded feeling, but this has only come on since tapering from 10mg. Not sure if it's a withdrawal symptom or a 'New Symptom' of PMR which seem to come and go and morph into different side effects week in werk out!!! I'm also quite young to have the condition, 51 years, and I also, like yourself, thought Id have more years of good health before retiring to the sofa!!!
Yours frustrated too Andrea xx
barb30898 sue-dorset
Posted
Thanks or the pep talk and info.
you have me pegged.
always doing something.
PMR is giving me some powerful lessons about that, though.
if I could just remember the lessons of yesterday so that I didn't repeat the same errors, over and over again, today..
i'm getting better, though.
is there a good possibility, that one day, this will all go away?
i am going to check amazon, right now, and order Kate Gilbert's book.
thanks.
thanks to all who contribute. You help all those who are floundering.
barb
sue-dorset barb30898
Posted
Yes for sure it will go away, trouble is you don't know when. Some say PMR burns itself out in 2 or 3 years. , but I don't think anyone know for sure. You just have to ride with it unfortunately. As the old saying goes - slowly, slowly, catchy monkey. Take care, Sue
barb30898 sue-dorset
Posted
Downloaded the book to my IPad, and ready to go.
Thanks again, for your words of wisdom.
I wish good health for all of us.
Barb
LayneTX caroline83483
Posted
I'm down to 7 mg now and not so much fatigued, except mornings, I think my Thyroid meds help that, but I experience serious anxiety now!! I was driving yesterday and had to pull off the road!
I assume its my adrenal glands trying to get back as the Pred is lowered??
It doesn't take much to make me feel anxious. I noticed my blood pressure a bit higher at doctors visits. Should I buy a blood pressure apparatus?
In working with my Bowen gal, she sees me as a very sensitive person and even my new ENT doctor said my body is hypersensitive... lovely. I used to think being sensitive and very aware of things was a good thing, but think I've overloaded my body... they both agree.
Wondered if ya'll feel this as well? I'm REALLY trying to meditate and DETACH is the word the Bowen gal used. I do find myself raising my shoulders and tensing them, which causes the new PMR type pain in upper back and shoulder blades. So, I drop my shoulders and relax my body.
Ahhhhhh.... ;>)
I'll also be glad when my brain fog goes away! I've made so many stupid mistakes, my husband has had to take over any real resposibilities. Though brain fog not as bad as at higher Pred I do see. yea!
caroline83483 LayneTX
Posted
Now my driving is fine again, in fact happier driving than walking!!
Got to admit life is never dull with PMR 😏
lucy45078 caroline83483
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jo42444 caroline83483
Posted
have to deal with that. Its a really hard balance between the disease symtoms and steroid withdrawl symtoms and how to tell the difference. Joanne
sue-dorset jo42444
Posted
quick answer to your last sentence - withdrawl symptoms should only last three or four days at most, any longer than that in pain would indicate that the inflammation is not under control. So an increase in Pred is required. You cannot expect to be completely pain free even on Pred, but you should feel better.
I would say that your quick reduction has not given the Pred a chance to get a good grip of the inflammation, and obviously as you get on a lower dose then it has less chance to do so.
CRP levels are not the be all and end all of this illness, lots of people never have raised levels!
Your body is telling you something is not right, that's much more accurate than any blood test.
you could try staying on 5mg for a few weeks to see if the Pred gets control of the inflammation, but don't reduce again whilst you are in pain. When you do, go by 0.5 mg a time, and continue on your slow method.