Time To Reduce Again

[Ligtocicar]

Hello everyone:

Today is my last day at 15mg. Like I said in my last post, I started reducing on August 10 after one year at 20mg, and will be going down 5mg every 14 days. Going from 20mg to 15mg was not bad at all. I use to take 15mg in morning and 5mg at night. I started by giving up the 5mg at night and I actually started to sleep better. I am having big time knee problems and have an appointment with a surgeon in the near future, but I don't think it's related to PMR. Tomorrow I go down to 10mg, and hopefully all goes well. Will update in 2 weeks.

[SheffieldJane]

Hi Ligtocicar,

Well done on your reduction. A word of warning, it does get harder below 10 and you don't want to risk having to start again. So when I went from 10 to 9, I did 6 days of 10 and one day of 9 then 5 days of 10 and two days of 9 then 4 days of 10 and 3 days of 9 and so on until I reached seven days of 9, if all was well, I did the same thing to get to 8. I am now approaching 6. A steep jump would have woken the dragon, I know it would, it squirms a bit now. Good luck!

[DebbieF1603 in reply to SheffieldJane]

Quick question....once you've reduced to a particular level, how long do you stay at that level before you start to reduce again? I'm doing 4 weeks after each reduction at the moment and am just about to start 12.5 > 10mg before then tapering 1mg (hopefully) at a time. Thanks.

[SheffieldJane in reply to DebbieF1603]

I play it by ear. If I feel ok I start gradually going down again. Any sign of trouble I stop. Hence Dead Slow and stop. I am gliding towards the Adrenal wake up call so who knows. Good luck!

[DebbieF1603 in reply to SheffieldJane]

Thank you. You too. I feel no better, no worse with my reductions to date. I wake up with hip, shoulder and pelvic (bearable) pain which gets easier during the day. I never wake up without any stiffness but am generally mobile and off for my daily run/walk within half an hour. I assume as long as reductions don't make the symptoms any worse I should carry on, slowly as before?

[Ligtocicar in reply to DebbieF1603]

I'm reducing 5mg every 14 days. Started at 20mg now at 10mg, will go to 5mg on September 7, if all goes well.

[piglette in reply to Ligtocicar]

Hi Ligtocicar, do be careful below 10mg. Getting down to 10mg for some people can be quite easy, although not for me. Under that it gets more difficult. Have you got PMR? Are you hoping to get off pred in two months?

[Ligtocicar in reply to piglette]

Sorry it took so long to reply. I do have PMR and yes I'm hoping to get off pred in 2 months. Actually going down to 5mg in 2 days, I have to admit that I am a bit worried

[piglette in reply to Ligtocicar]

We are not able to decide when PMR goes into remission, PMR decides when it goes into remission sadly. By reducing to zero pred will not make the PMR go away.

[Sandy1947 in reply to SheffieldJane]

When you were done reducing on method you described did you stay on new dose for any length of time or just immediately go to lower dose?

[Ligtocicar in reply to Sandy1947]

I am reducing 5mg every 14 days.

[Rugger in reply to Sandy1947]

Sandy, Have a look at Jane's reply to DebbieF1603, above. On the DSNS taper, we usually continue on to the next step down when we've reached the new dose on all days. However, symptoms are the key and if there's any (new) pain, then the rule is to not reduce further - even go back to the last dose that dealt adequately with the pain. For example, I stayed at 10mg for 2 months instead of tapering to 9mg as I had some pain.

Have you see the 'Steroid Taper Web Application' on here that sets out several different ways of tapering, including 3 versions of the DSNS taper. It will give you a monthly calendar with daily doses and you can alter or update it at any time.

healthunlocked.com/pmrgcauk...

Good luck!

[Patricia157]

Hello

In my experience a drop of five is too much at one go and at the level you are on. Could you not try 2.5 mg and see how your body feels and then in one mg drops. I found that around the 11-10 my body reacted more severely than at any other level. Using the 'dead slow method ' is the only way I feel. I had a hip replacement when I was at 7.5 and that went well.

Best of luck in whatever you decide.

[Ligtocicar in reply to Patricia157]

Doctor seems very confident reducing 5mg every 14 days. Time will tell.

Thanks

[jinasc in reply to Ligtocicar]

Your Doctor might be confident but the current thinking from the last 3 or 4 years has been no more than 10% at a time. Two weeks is also too fast.

There is a thread on here with five plans for reducing.

[sazzyb in reply to Ligtocicar]

Strange doctor! Shouldn't it be up to you and how your body reacts?

[DorsetLady PMRGCAuk volunteer in reply to Ligtocicar]

Hi,

Your doctor may be "very confident " but he's not the one doing it!

Most people of here would disagree with him, but as you say - time will tell!

[Hidden in reply to DorsetLady]

My doctor was very confident too but My body refused 15 to 10mg drop and I had to go to 1mg and then 0.5 every 2 weeks.

I am keeping my fingers crossed for you and you might be a lucky one.

[Jackoh]

To me, this seems a very strange regime that the GP has followed but will follow with interest your progress. Glad that you have managed the 5mg drop to 15 mg without any problems. If you manage the 10 mg ok I would say,from posts on here, that you need to be careful going down such a big drop from 10mg but that's your call. Do take care and continue to let us know how you get on. All the very best with whatever you decide to do.