PMR Tapering

Eileen,

Does the reduction in prednisone actually stimulate whatever needs to change for a return to low or non inflamation? Is it profitable for us to nibble at the edge, trying to stimulate our own production of the magical potions and proportions of chemistry to return to pre-inflamation state? Does the prednisone taper affect a positive change? Or is it a sheild, protecting us from inflamation while our bodies just go about their own business of remediation?

Thanks, Dan

Thank you again Eileen!...hope I can print this out and post it around the house! I only wish you could have thrown a glass of water in my face...then maybe I will remember your advice better!😊

As far as it is known, the pred has no effect on the underlying autoimmune disorder. All the pred can do is mop up the puddle due to the leaking pipe and keep the floor reasonably dry so you don't fall over. Until the autoimmune bit burns out - which it may or may not do and there is no time scale. It isn't even known whether it is at a constant level or whether it waxes and wanes over time.

If they ever manage to identify anything concrete about the autoimmune disease - the mechanism and what exactly it is doing or find antibodies - then they can look for a means of interfering with that process and that would provide the nearest to cure you could hope for. If it's really genetic then maybe gene therapy would provide a cure but I doubt that somehow. 

The sole purpose of the taper - as far as current knowledge allows - is to accurately identify the end point of the titration: the lowest dose that achieves the best result as measured by what is achieved at the highest dose you were on. It's a commonly used technique in finding the right dose but usually you titrate up from a low dose. In this case you get out the heavy guns to clear out the inflammation and then keep it down using a more refined approach. Everyone has different disease activity levels and responds differently to the pred - so every titration is different. Some people can reduce in bigger steps whilst other bodies protest at their fix being removed - and the length of time also has a role to play for some but not for others.

And really it is just coincidence and confuses the issue that the stuff used as the medication just happens to be a chemical version similar to a natural product in the body. Excess production of cortisol due to a tumour or other wobble of the HPA axis just leads to a very typically shaped and obese patient with a moon face and beard - it doesn't necessarily suppress any existing inflammation as far as I know.

I assume you know how to copy and paste things - large print and pretty colours...

And always ask on the forum - someone will remind you!

An elderly lady (over 90) on another forum repeatedly tried to reduce below 5mg - and always came complaining her legs hurt. Eventually we persuaded her, and her daughter, that 5mg was fine and she should just stick there and she's been fine. She has recently moved, new doctor comes along and tells her "Your bloods are fine, the PMR has gone, let's see about reducing that pred." It seems she wasn't well again, ended up in hospital with pneumonia a week or two ago - and has been told by the hospital to go back to 5mg. And we all thought "told you so!". This time she may be a good girl! We hope!!

Hello,

have you been on prednisone very long or had PMR long?

also how about weight gain and hug appetite .

Thank you

 

It is over 10 years since the first PMR symptoms appeared - with a couple of major flares in that time. It wasn't diagnosed for nearly 5 years - normal bloods, too young blah blah. Then I had a major flare in the level of the symptoms and after about 6 months was "allowed" to try a 6 week pred taper to help me through a trip to the USA. Six hours after taking the first 15mg dose I felt normal for the first time for years and could "do" stairs no bother!  Within 6 hours of missing the first 5mg dose I had tapered to over 6 weeks I was in bed, in tears, in more pain than before. The rheumatologist didn't want to know - he had decided it couldn't be PMR, too atypical. A different GP was convinced enough to provide pred.

I moved to Italy but still had pred supplies from the UK - and had a dodgy batch of 5mg tablets that allowed a major flare to establish - so I was switched to Medrol as plain prednisolone isn't available here. That caused major weight gain. I had gained weight in the first 5 years of PMR because I couldn't exercise as well a previously. I didn't gain much more weight on pred but the weight redistributed in the usual way - to face and midriff. With Medrol I had weight gain, muscle wasting and a beard - and it allowed a major flare again. I had side-effects but no anti-inflammatory effect, even 20mg didn't give me much relief until mid-afternoon. I was finally switched to another version prednisone, a special version which isn't normally used. The 15mg starting dose produced a similar result to the original pred - relief in a few hours. Now I'm down to 5mg.

I had craved carbs during the 5 years of non-pred PMR - didn't know what I wanted but every afternoon something sweet though I didn't always eat anything. Within a day or two of starting pred that had gone - vanished completely. I was no longer hungry between meals, no wanting snacks, appetite back to normal. 

Since stopping the Medrol I have lost 40 lbs in weight - much but not all of that was Medrol induced and I am now almost back to my pre-PMR weight. It has partly been achieved by cutting carbs drastically - low carb diet, under about 50g utilisable carb - but the change in form of steroid also helped I'm sure. With a low carb diet I'm rarely hungry - and I am by no means the only person to have found that. Cut carbs and you avoid the risk of Type 2 diabetes, raised cholesterol (that is also back to normal range with a high HDL) and weight gain. Or you can correct them if they are already established. The lack of spikes of blood sugar seems to avoid the craving hunger - and as I say, not just for me.

So there you are - my story of PMR and pred!

Thank you. I don't eat sweets as my husband is pre diabetic. 

I just suffer each day and take Aleve twice a day and a lot of vitamins.

I am trying to keep a step ahead of PMR

Thank you Eileen, 

makes sense. nicely answered!

Me thinks in a few years, "they" will figure this out.

At least we're not applying leaches.

Wait a minute, should we?

Have you had a dexascan to see what your bone density is like? 

There tends to be an assumption that everyone over the age of 65 is developing osteoporosis and pred just hastens the progress. Alendronic acid is supposed to halt that. However - there are several ladies on the forums who have not been on it for various reasons, some not even AdCal - and their bone density hasn't changed. I'm one of them, after 4 years of pred my bone density was still fine, basically unchanged from the one 2 months after starting pred.

We have several ladies in their 70s and 80s who have perfect bone density readings - so I would insist on having a dexascan first. If it shows problems then taking AA may be a good idea. If it doesn't - then waiting to see if there is any change in the first couple of years makes sense - AA does have side effects like all drugs and it is recommended it should not be given for more than 5 years to avoid some of the more serious longer term ones. If the GP is difficult about it and won't refer you there are a few places that do them privately for about £55 I think.