Brick wall, big time!!
Posted , 7 users are following.
Oh boy, I've hit a brick wall, big time. Going from 3mgs to 2.5mgs, very, very slowly, but the body says NO :cry: I am completely devoid of energy, treacle brain is back and everything aches. Poo!! Is it stress I ask myself? My grandson's op is due Tuesday week and it's playing heavily on my mind. Or is 3mgs to 2.5mgs particularly difficult? I've decided to stay on 3mgs for the time being and forget any thoughts of reducing until Jake's recovering. Its not a race is it Hope everyone has a lovely weekend.
Lizzie xx
0 likes, 13 replies
EileenH
Posted
Yes - it could be stress! How can you not stress about his op?
Yes - round about 3mgs is the other brick wall that many people meet. There is one in the range about 10 to 7 mg and this one for some people apparently at about 3mg. No-one knows why.
And some people will need to be on that very low dose for a long time - remember, the PMR hasn't been cured so it is always possible that the symptoms will come back at some dose as you go down. The expert expectations are for drug treatment to be needed for at least 2 to 4 years - and that's sort of an average.
The chances of side-effects at 3mg are minimal so hang in there where you are. All the best to Jake and family,
EileenH
Mrs_G
Posted
I am sorry to hear you are having problems I am going from 3 to 2.5 also and I think I am doing Ok I really think it is the stress you are under No one can ever tell you not to worry !! I always think it is one of the silliest remarks that people make !!
I hope you dont have to go any higher but to get over this worrying time you might have to but you have done so well with your reductions and your possitive attitude that Im sure you will be back on track soon
Hoping all goes well for you and your grandson
Best wishes
Mrs G
fiftiesgirl
Posted
I do so hope you can get this reduction 'sorted' and feel comfortable and that the probs with your grandson don't get in the way :roll: :roll: I know easier said than done :?
Cannot comment really with PMR 'L' plates up but wish you the very best
Ms_JH
Posted
I am so sorry to hear of your difficulties. Of course you are stressed and I think you should sit tight and not reduce the dreaded P until life is a little easier. That aside though, I do think the 3 to 2.5 reduction is hard. I managed to get to 2.5 myself and it took ages but then had surgery in February. Now my arms really ache and I'm trying to figure out if I should go back to 3. Hope to be able to ride it out especially as our weather is cold and wet right now which never helps. Every good wish to you and your family. Better times lie ahead.
Jill
MrsO-UK_Surrey
Posted
Of course you will be feeling stressed over Jake - I haven't got any grandchildren yet but one of my friends was telling me just the other day that she thinks she worries more over her grandchildren than she did over her children. So even though we try to avoid stressful situations with PMR, sadly there are some that are impossible to avoid, just like the one I experienced with my son recently.
3mgs was also a stumbling block for me and I then tried an even slower method than Ragnar's. When I eventually reached 2mgs over a period of almost 3 months I then stayed there for another couple of months, so it took me much much longer than the usual recommended 3 months at these doses to reduce by 1mg. BUT it worked. I have now been on 1mg for 8 months but it has only been over this stage that my legs have returned to feeling like my own legs.
You have done remarkably well and if this small setback is due to stress then staying at 3mgs until Jake recovers will, hopefully, keep things under control. Very best wishes to Jake and a :hug: for you.
Love, MrsOxx
Devonshire_Dumpling
Posted
Firstly, I am so sorry to hear of your troubles.
I think with all things considered, it's no surprise that you are having a 'blip' !
Secondly, you are right, it is not a race, and a bit longer at your present dose is nothing in the long run (so to speak) is it ?
You'll soon be back on track, (sorry) and over that brick wall.
Best wishes to you and all your family
Julia
EileenH
Posted
mrs_k
Posted
Your glands are not working or working at a very low level. So when stressed you use your usual dose up faster.
The reason for taking Pred is so that you can live as pain free and as near normal as possible. It is not a cure and it won't make PMR go away. PMR has a mind of its own, it will go away when it wants to.
5mg of steroids is considered a low dose for people with PMR and if it means going back to 5mg to reach a comfort zone then not to worry, when the stressful period is over and things have settled down, then off you go, down again.
If you are on 2.5, increase to 3mg and if that does not work, try 4mg, then 5mg.
I know this must sound awful to you and think I am mad as a hatter, but although I only have GCA, I have found that when under stress, I struggle to operate as I normally do.I have now been waiting four months to take my next drop from 3mg to 2.5mg, each time I tried 2.5mg within a couple of days something, apart from GCA , happened and, I had to go back to 3mg. Luckily the three worked. I know my glands are not working properly and realise it can take up to a year to get them to kick in again. C'est la vie.
BettyE
Posted
We are all thinking good thoughts for your grandson. :angel:
Love, BettyE
MrsO-UK_Surrey
Posted
Just a quickie - Just sending you best wishes as I've been wondering how you are and hoping you've been able to give yourself some tlc and that your aches have settled over the last couple of days. :cheerup:
MrsOxx
Lizzie_Ellen
Posted
Love from Lizzie
fiftiesgirl
Posted
MrsO-UK_Surrey
Posted
Love, MrsO