Tapering
Posted , 15 users are following.
I thought I'd start a new post on my experience of tapering off pred so far. its now just over a year since I went to my GP with bilateral shoulder and hip/thigh aches and stiffness, and will soon be the anniversary of my relationship with prednisolone. I responded reasonably well to 15mg with almost instant and complete relief in hip/thighs and shoulders within a week. Had some side effects from pred notably anxiety but this subsided after a taper in stages down to 10 by end of April. As Ive reported before Rheumatologist advised a quicker taper of 1mg every 3 weeks at end of May, mainly as glycemic control was a concern. followed this plan until end of July until on 6mg. At that point I started getting bilateral hamstring pain especially when sitting, not every day and it came and went. No noticeable stiffness. After 3 weeks I tried a drop to 5.5mg, after which I had 2 weeks of the thigh pain, again no stiffness and fatigue. It then seemed to resolve and so after 2 more weeks I reduced to 5mg. thigh pain returned on and off but no noticeable stiffness. Beginning of October i tried a reduction to 4.5mg Thigh pain and mild and inconsistent shoulder aches were the result. Stick it out for a while then GP suggested going back to 5. Did that but no difference so I'm now on 6. most days good, no stiffness to speak of but hamstring aches still come on some days but not stiffness, feel much better generally. GP advised to stick on 6 until after Xmas and see how i feel. GP thinks taper was too fast and this led to me not being able to accurately say at what dose I was last completely pain free (that and me occasionally over doing it.) Thinking back was probably best on 7 but currently happy on 6.
Wont be reducing again though until 100% or there abouts. I wondered whether others had experienced similar esp. the pain on tapering without stiffness and the hamstring pain. I don't really remember the pain in my legs before pred, stiffness was my main problem in that area and pain and stiffness in my shoulders. In any event nothing I have now compares to the state I was in a year ago.
0 likes, 12 replies
BettyE derek98287
Posted
"GP thinks taper was too fast and this led to me not being able to accurately say at what dose I was last completely pain free."
I think a lot of people will agree including my sister, diagnosed just a year ago. She was doing very well until she got to 7 and then began to feel fatigued but decided to wait and see. When she decided after a couple of weeks to increase to 8 she found it was not enough and has had to go back to 10 so it does look as though she would have done better to listen to herself sooner.
Not for me to give advice but I think maybe we are sometimes too ready to be stoic. Don't give yourself an aching Christmas; there are no prizes for getting to zero Pred. faster.
patricia43291 derek98287
Posted
I have had a similar experience with pred. I can't seem to get past 6.5 mg (or sometimes I'll try 6 mg), without the soreness and weakness returning. Even on 6.5 mg, it is still slight.
Going to try CBD oil next.
missmagwumps patricia43291
Posted
Hi Patricia - I asked my rheumy about CBD oil and he said it would help with pain but not inflammation ! Having said that, when I manage to get off pred asap for my circumstances I am going to try CBD if I still have any residual pain, as I said before I don't think PMR is my problem as my symptoms were no where near as severe as some of you poor suffers......will keep you updated. x
EileenH derek98287
Posted
You have a very sensible GP - who is saying what most of us on the forums would say too! Reducing at speed only leads to trouble more often than not. Below 10mg you MUST slow down to be sure your new dose is still enough as you are bound to be getting closer to your destination: the lowest dose that manages the symptoms as well as the starting dose did. All that happens if you overshoot is that you have to return to a higher dose to get things under control. And undo all the good the fast approach was supposed to do.
If there is a problem with glycaemic control - cut your carb intake drastically!
missmagwumps derek98287
Posted
That's encouraging Derek...I am reducing now as so many side effects with Prenisolone that I think I would feel better without it and maybe just take pain relief again...I wasn't convinced I had/have PMR as none of my symptomns were really typical....and I wasn't properly informed about taking Pred or that I would have to take it for so many years...I started last June on 15mg and after many blips I am now down to 8mg......I will take a note from you and start writing down any changes so I can be sure and so far all is ok but I am reducing by 1 mg per week! Some say that may be too fast but the Rheumy I was seeing said it would be safe to do if I wanted to reduce fairly quickly...he was fairly disinterested tbh as he has been from the beginning - just dolling out the usual protocol for someone who has inflammatory markers and aches and pains! He is still arguing the toss about who was responsible for HIS letter that gave the wrong dosage instruction - telling me to reduce TO 1 mg a month and not BY 1mg per month when I got down to 10mg.......I had no idea about steroids and assumed it to be correct and made myself very ill indeed......so will let you know how my taper goes...best wishes to you all x
missmagwumps
Posted
Oh dear - whats going on with this website again.....3 identical replies from BetteyE - a notification that Patricia has replied re 'Tapering...' but nothing......it's been a while getting this site sorted but so wish you would hurry up as people are drifting away....Zzzzzz boring......
BettyE missmagwumps
Posted
Sorry about the triple reply. Same thing happened to Eileen the other day so if it happens to her it can happen to us all.
As I've said before all we need is System Restore. We were all happy a month or so ago.
BettyE missmagwumps
Posted
Nothing on mine from Patricia, either though listed as unread. Well, it will stay unread if it never appears, won't it? Do they want us to drift away, perhaps?
missmagwumps BettyE
Posted
Yes - doesn't even say awaiting moderation....dreadful really as people rely so much on the support and answers from others on this forum....x
andy34717 derek98287
Posted
Hi Derek,
Like you I started with 15mg at the beginning of Sept and had immediate (within hours) relief from the PMR.
Although I havent been tapering as long as you, I have been tapering slowly since then reducing from the 15mg per day down to now 8.5mg...with 4.5mg at night and 3.5mg in the morning.
Over the last few weeks, I have forgotten or missed the correct dose and therefore have been experiencing some of the pain and discomfort and not too sure if this is Pred withdrawal related or the actual PMR.
I seem to recall that a recent post suggested the Pred withdrawal can actually last 1 week, so have been trying to simply ride it out and deal with the aches, stiffness and discomfort to see if my body comes to terms with the new level of dosage...fingers crossed.
faye05942 derek98287
Posted
I am tapering my pred. by 1/2mg per week since I reached 7mg, I am now on 5 1/2 going down to 5mg on Saturday. It has been a bit rocky but my Specialist is concerned because of all the side effects I aquired when I started on the prednisone. I am also on methoextrate because I have RA not PMR as first thought at the begining. Good Luck with your tapering I think we are all different so what works for one does not always work for someone else.
derek98287
Posted
thanks all. My GPs approach is that the dosage needs to be part of a dialogue beteen Dr and patient. Rheumatologist though will only say its very probably PMR and seems to be intent on reducing pred as fast as possible. He has never though said what else it might be and all tests so far show nothing else plus my symptoms are typical of PMR, and he is not actively looking for anything else. While I do have some pain in my legs sometimes there is no stiffness and its totally bearable. I suspect my leg pains are simply down to the fact that its harder to take it easy with legs than arms and on 6mg i have no shoulder involvement at all.
I am interested in what others experience esp in the hip/thigh region when tapering as before the pred all i had in the legs was severe stiffness rather than pain (though i think the stiffness masked the aches).
thanks again all