flare ups

[Sailormo]

Hi really battling just now,had a cold second on in a few weeks. Body aches neck shoulders,head,bad fatigue,seen gp bloods ok,been trying to reduce from10mg down to 9mg.had to go back to 12mg I feel all over the place I can't get my head straight.thought I was making too much of things but honestly,haven't got the energy to get around like I did.Hope It gets better,

[DorsetLady PMRGCAuk volunteer]

It will, but TBH there is no point in trying to reduce when you have a cold, or suchlike. Your body is working hard enough to fight the virus, without adding in the stress of reducing Pred.

Hopefully if the 12mg helps and you stay on it for about a week, you may be able to drop back down to 10mg quite easily. Then suggest you stay at 10mg for a few weeks to steady the ship.

After that you can go again - maybe reducing 0.5mg at a time and/or using a slow taper as attached - others are available - just take your pick -

healthunlocked.com/pmrgcauk...

[Sailormo in reply to DorsetLady]

Hi Dorset lady,thought I'd sent a reply but it disappeared, thanks for all your advice,its seen me through some challenging times,I've learned so much from you all,I started not to believe in my self any more, today feeling much brighter the fatigue is hard,but thanks for you support.

[DorsetLady PMRGCAuk volunteer in reply to Sailormo]

Don’t worry about the disappearing reply - it seems to happen quite regularly. Very frustrating though.

Some days are very difficult, but those are the days we (as a group) are needed most of all - we know what you are feeling.

Take care.

[Purplecrow]

Hi Mo, sorry you are having a rough time. The tapers from 10 mg pred. to lower, were challenging for me too. I recognize the symptoms you list, and it looks to me like a flare has taken hold. Have you considered adding 2 mg pred to your current dose, and then staying at that level for a month, before you consider attempting a small reduction.

It seems when I used this strategy, my body was able to catch up with the inflammation, and my symptoms settled down. I have been very careful about tapering only .5 mg at a time. Each taper took 3-4 weeks, and as of this writing, I am at 3 mg. (Again).

My journey began September 2013!!! I have gotten down to 2 mg a couple of times, but each time, I needed to rebound to 10 mg., hold and start again.

Severe fatigue nearly always strikes about this level.

You will survive, and you will get better. In the meantime, you will learn the real meaning of taking compassionate care of hourself.

There seems no easy way to combat the PMR fatigue, other than give in to it, stop, and rest. Lie down, close your eyes, and let things be.

The sooner you can learn this technique, the sooner you can be kinder to yourself about the things you are not able to do right now.

Believe me...the dishes will wait, the shopping will wait, it all will wait, or someone else will need to step up and HELP YOU.

PMR recovery is not fast. Most recently I have seen 5.5 to 6 years is likely the length of time to move through the whole cycle. When I was first diagnosed, my Rheymy told me I would be on prednisone for a year.

I hope your recovery is faster.

Know it will get better. Kind regards, Jerri

[Sailormo in reply to Purplecrow]

Thanks for your kind words I have gone from 10mg to 12mg it seems to take so long to improve. It's not always easy to manage. I'm hoping I'll become more mobile soon.

[DorsetLady PMRGCAuk volunteer in reply to Purplecrow]

Then your Rheumy, like many, was doing you no favours.

Not sure whether they don’t know the length of the illness, or are frightened to tell the patients in case they (the patient) gets upset.

My Ophthalmologist told me at outset - “on Pred for at least 2 years, probably longer, maybe for ever”. Much more realistic- and I never felt pressurised to reduce more quickly to meet “their” timescales or guilty because I couldn’t get off the Pred within a year, 2 years - whatever they tell you.

As WE know it takes as long as it takes. And I would prefer to be told the truth (however upsetting) at the outset.