Prednisolone dropped by 5mg?

Hi Christine thanks for replying. I think she's at a loss with me. She's treating me for polymyalgia rhumatism because there's no treatment for ME. Since I have many pains and terrible physical weakness that's changed my life drastically she thought prednisolone would help. The cfs clinic can't find the result of my 2nd cortisol and blood tests. All I know is that I hv a OT who pit in rails for me at home etc. I'm 54yrs now. All my friends go out and do things and I've had no life since 2010. Diagnosed ME only 6 months ago. I will check that Bristol thing you said. I'm sorry I'm getting tired again. ..weakness. Thank you

I have just read you post where you say you have ME.  There is a registered charity for ME and it has loads of information which might help you. 

Candyfloss, I'm sorry but if they have lost your blood test results then they need to do another blood test and quick. Your Dr needs to know ASAP if the pain you are suffering  is due to inflamation or not. Yes I agree when you presented to her with all these pains she tried you on prednisolone, I wish a few more gp's would try their patients on a short dose to help them establish a diagnosis, but how you then felt following the first doses should help her decide if what you have is PMR or not.

if you have PMR (and there's no reason why you can't have PMR and me) then within 4-6 hours of your very first dose of preds you should have noticed a marked improvement. Then over the next 7 days a massive improvement that would have reduced your pain and stiffness by a massive 70% at the very least. If this improvement did not happen then maybe you don't have PMR and she will need to consider other pain management plans, but alas preds are of no help to ME pain as it is not caused by inflamation and if she is at a loss then she needs to refer you on to a specialist. I now see, I think, that she only had you on a short course of preds to see if they made a difference, did they? Regards, christina 

Hi Christine. Yes I'm going back to cfs hospital on 1st July very soon.

My Doctor says I hv ME but there's no treatment for it. Since I hv pains AND inflammation she's treating me for PMR. She WANTS ME To Taper Down To AND Stay On 7.5MG AND See how that goes.

What she's not getting or hearing is that I'm getting g so worse so quickly. I'm struggling to walk and hold things.my legs just try to give way so I've started using a walking stick as I don't want another fracture foot. I think she should hv said sorry about dropping pred's as I went barmy it scared me to death. Anyway she made a mistake n I Survived let's hope she stays on the ball now. She gave me a home visit this week and she's going to try to get me some home help. Doubt it's possible though cos our country is getting flooded worth millions looking to make a better life for themselves. I understand but people like myself are getting left behind and lost in system. Thanks

Oh it's great that you can even think of exercise. Just to make a cup of tea is a major job for me seriously. I'm typing this in bed with pain and jelly wobbly legs. I'm so hungry but to tired to cook but I found baked potatoe and put into oven . Yes the pred's should definitely be lowered slowly . That was frightening what happened really frightening . Thank you for your thoughts

Thankyou 4 lodger ill check post put tonight if I can stay awake. Greatly appreciated

Well, for me, I would say that the 11mg I was taking 12 mos ago did a better job of controlling PMR pain than does the 4mg that I am staying on today for a while.

And I had less fatigue at the higher dose as well.

I am holding at 4mg with still-considerable symptoms of both pmr pain and fatigue because I feel that at this dose there is some cortisol regulation being effected by the body, which seems like a good thing to strive for. Some days are better than others.  I take an afternoon nap most days, even though I am also probably drinking too much coffee for my own good.

4mg has proven to be a tough dosage level to reduce any further from, and at my 140lbs this equates to more like 5mg for the average sufferer. 

PMR has kept well over ten pounds off of me since near the beginning, that was just over 18mos ago, but I have added back just the muscle I lost by riding a bicycle over steep terrain. I will add that bicycle riding has been the very most comfortable way to exercise with PMR, almost like the pmr does not affect one's ability to ride hard, once one gets themself mounted that is.

Dan, You have done really well decreasing to 4mg from 11mg in a year. As you say around that sort of level the body is having to start making its own cortisol again and that can really knock you out with fatigue, more so than on  the higher dose. I have found that trying to carry on a dose too low for comfort does not seem to sort itself out, I just carried on feeling miserable for ages. Increasing it a bit helped no end when I finally increased for a while.

I was prescribed 15mg, dropping 1mg per month, so when 3mg was causing about half of symptoms to return, I dropped only to 2.5mg the next month.

But 2.5mg was getting pretty bad, so I bumped right back up to 3.5mg, and after three weeks I am up to 3.75mg, still with more symptoms than I had a year ago at 11mg.

I have been at 3.75mg for a week now and am going to try to hold here for a while, to wait and see if the PMR is still fading away at all.

I have a bottle of 1mg tabs on the way, so can bump to 4mg in a week or so if I don't feel like I'm ready to sustain 3.5mg for what is likely to be a lengthy "holding point" in terms of my PMR activity.

Again, my dosage is relative to my 140lb body mass.

Also, I am wondering if cutting out caffeine might improve adrenal output such that my needed dose could be lowered.

Dan, none of us want to be on preds and we all want to get off them ASAP. Most of us also worry about our adrenal glands and hope they kick in again when we get to the appropriate dose of preds. But I really do think that if you are experiencing PMR pain and fatigue all of what I have said goes out the window and you must up your preds to get on top of the quite clear inflamation. You will get back to the situation whereby your adrenal glands will get back to work again but until then don't be in such a rush to get there at the expense of your body and the possible chance that the PMR could take hold again. Raging inflamation is bad for the body too so every decision we take re our medication us about balance. You say that 4mgs has been hard to taper further down from, but I don't think you should be thinking of tapering down any further, most certainly not at this stage. Please consider upping your dose to clear up this visible level of inflamation then reduce when it's well,under control. All the best, christina 

Hi ptolrmy

Yes I called the surgery in the week I'm to stay on 15mgs until this Monday then reduce by 1mg per week to get to 7.5mgs which o will stay on.

But I'm so terribly terribly weak in fact I know I might fall so I use someone's walking stick. My legs just give out at any given time. My arms are shattered. I've got so ill that I dont know if it was withdrawels or my ME getting worse. Thank you

Candyfloss, that is quite a fast reduction, do be careful, if you have any pain just stop reducing. I find I can only walk on the flat and cannot clamber over things and steps are impossible unless I can grab on to something or someone. If I go to a shop I have to ask for the assistant to lift the bag for me at checkout, I can only buy small amounts of things at a time. 

Trouble is that Candyfloss has not been diagnosed with PMR, she has been diagnsoed with ME and she really needs to have this out with the Consultant.  I had a quick look at the ME charity site and nowhere that I could find did it say about treating with pred.

I am not a medic in anyway at all.  But I would not be hesitating to have this out with any of my medics.  Prescribing in hope is a no-no for me.

Ah I misread what Candyfloss said, I thought her doctor was treating her for PMR. My mother had ME and there was not much you could do about it. I would have thought most doctors would have known that. Yuppie Flu.

Yes - agree with you, new doctor.

Candyfloss - you need a doctor that knows what they are doing - this one doesn't.

The question is, did you have any relief from anything within a week when on 15mg pred - if not, there isn't a lot of point taking it at all.

Hi 4 lodger

I had an emergency doctor phone me today. We discussed all. She asked me what my gp was doing for me and I couldn't answer. So the phone doctor asked me if my gp had referred me to a neurologist and she was very upset when I told her no. She asked if I'd mind if she wrote to my gp suggesting a referral to a neurologist. This doctor was on the ball and couldn't believe my gp had left me in such a physical state alone. She was very cross. Maybe things will get moving now.

Thanking you so much for yr support

I was so pleased to read your posting.

Don't wait until you hear from your GP, they could get the letter and do zilch.   Note down everything that was said and the date.  If you do not hear within a week, then put an appointment on and follow it up.

If your GP does not 'play ball', Ask to see the Practice Manager and discuss the problem you are having with that GP. 

It maybe that you will need to look for another GP.   Talk to your friends and see if they can recommend a  GP.

Keep fighting your corner.