Problems re tapering.

[Bayleaf1]

After posting here last month and getting useful advice I’m asking again. Last month I was on the verge of reducing from 7mg to 6mg as I had been advised by my doctor but I had a cold and some of my symptoms of PMR. I decided to stay at 7mg until I felt better and my symptoms were gone. Then two weeks ago I dropped to 6.5mg and the symptoms came back. I’m wondering if I should go back to 7mg again. If symptoms go again I’m wondering how long I should remain on 7mg before trying 6.5mg again. Also I read on here of someone tapering 0.25mg per week. I was going to try 6.5mg for a month and then continue going down if I can. My original instructions from my doctor were once I reached 10mg toreduce the dose by 1mg every 4-8 weeks. I’m feeling so confused as to what I should do now.

[DorsetLady PMRGCAuk volunteer]

You may well find that you have found your lowest dose - for the time being, won’t always be, but is for now.

You were only diagnosed in September year - so to be at 7mg within that time is good… but you are not reducing relentlessly to zero [something doctors very often omit to tell patients] you are trying to reduce to find the lowest does that gives you the same relief as the initial dose did. For you - at the moment - it sounds like 7mg.

So stick there for a bit longer - at least a month and then try 0.5mg and a slower tapering plan …see here for selection - both similar so which suits you best -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Plus you are now getting into the realms of adrenals needing to re-awaken , so a slower tapering plan will help them as well. This gives more info -

healthunlocked.com/pmrgcauk...

The original instruction from doctor are in line with guidelines, but that doesn’t mean they are as easy as it sounds… you need to find best way for you and your illness.

[Bayleaf1 in reply to DorsetLady]

Thanks. I will try that. I never used to be so indecisive but now feel every decision I have to make is a major problem.☹️

[DorsetLady PMRGCAuk volunteer in reply to Bayleaf1]

If does seem like that at times….why we are here to help.

[SnazzyD]

When you say symptoms came back, what do you mean exactly and how quickly did it happen?

[Bayleaf1 in reply to SnazzyD]

My original symptoms were aching stiff knees and thighs. Difficulty walking and lack of energy. The knee symptoms came back I think after a day.

[SnazzyD in reply to Bayleaf1]

Could be withdrawal. After dropping a dose and starting any time between day 1-4 I would be quite achey and creaky and sometimes had to go to bed. It would last a few days and a maximum of a week. I would also really slow down that taper now to something like 0.5mg per 4 weeks minimum. At this stage you could be getting symptoms of slow adrenal function which can muddy the water when you are deciding what your aches and pains are.

[piglette]

You can get a steroid withdrawal reaction just after reducing for a couple of days or so, which then goes away. If you get a flare it takes at least a week or more to occur. Personally I would taper 0.5mg every four weeks maximum at that sort of dose.

[PMRpro Ambassador]

When symptoms reappear immediately it is very often your body protesting at the change in dose. Although most doctors say 1mg per month below 10mg, top experts say not more than 10% of the current dose - and as soon as you are below 10mg. 1mg is more than 10%. The use of a slowed taper and only 1/2mg at a time often makes a big difference and may be the secret of success.

You have done well to get to 7mg from 15mg in under 8 months - the mean time to get to 5mg is 18 months so you are ahead of the curve. No hurry - except maybe in the doctor's mind!

[Bcol]

You are doing really well to have got to this point so quickly. I use a 0.5mg taper every five weeks, but even then do not start the next taper unless I'm happy with where I am.

[MamaBeagle]

I too was down to 7mg after 12 months. It took another 3½ years to arrive at zero, and I followed all the advice on this forum to get there. A couple of hiccoughs during the descent, by overshooting the dose needed and a couple of years ago a very stressful time caused me to flare. My advice, listen to your body and to the wise women on here. Good luck.

[Pusph]

I'm having the exact same problems! 6mg seems to be the problematic zone for a lot of us!

[Bayleaf1 in reply to Pusph]

At least I know I am not alone when I read the comments on here and it’s comforting to feel everyone has everyone’s back. Good luck with your tapering.

[Prof99]

Hi Bayleaf1, your message sounds like you just dropped to 6.5 without a slow taper (one day week 1, 2 days week 2, etc). If that was the case, that may be too much, too soon. DorsetLady has loads of excellent advice on tapering - taking it very slowly, once below 10mg, is key to success. Good Luck.

[Brooklyn747]

Good luck Bayleaf 1 it sounds like such good and knowing advice is given to us on this wonderful site.Like you I can really relate to the complexity of slow tapering. Not easy but we'll get there.