Brick wall, big time!!

Oh Lizzie Ellen - ouch! Three things to say:

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

Hello Lizzie Ellen

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

Lizzie Ellen my heart goes out to you on all fronts :roll: :roll:

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

Hi Lizzie Ellen,

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

Oh Lizzie - I really feel for you especially after all the excitement of your recent discharge from the rheumy.

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

Dear Lizzie Ellen,

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

Maybe we should be suggesting PMR etc as an Olympic discipline with all these tracks and walls...

I am absolutely baffled. When you were normal (whatever that is) and you hit a stressful period, your adrenal glands supplied more cortisol/adrenalin to cope.

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.

Hallo, Lizzie Ellen. I don't wonder you are stressed. You'd be abnormal if you weren't and worrying about your grandson. Also, when you had such good news from your Rheumy it's an even bigger let down to feel you have gone backwards. You have not. A 100% healthy person would take a knock with your worries.

We are all thinking good thoughts for your grandson. :angel:

Love, BettyE

Hi Lizzie Ellen

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

To everyone, thanks for caring. It means such a lot My body (and brain) are much happier on 3mgs, so that's the dose for now. I've never been in a rush so I'm not disappointed. I have the headache from hell but that's just me being a Nannie and worrying about next week (Mrs O - I know you've had the 'worry' t-shirt recently and I'm so very pleased to hear that your son is on the road to recovery :D ). I spent a lovely day with my two daughters and three of my grandchildren yesterday. We had a cream tea, resting on a tool box in my son-in-law's allotment :cupcake: :coffee: (what? no five-a-day fruit and veg emoticons :lol: ). Different :yikes: Jake was very cool, joking with his cousin about his op and the chance of some 'fit girls' being on his ward. Shame on me for worrying (but I know what he's going to have done, he's a bit vague!) Anyway, that awful fatigue is going, the brain is clearing and the aches - well, they don't bother me too much, just need the energy for the next few weeks. Once again, you really are a lovely bunch of people, so supportive and its much appreciated :hug: . I hope everyone has a great week.

Love from Lizzie

Lizzie Ellen it was so good to hear you are feeling so much better albeit still full of worry re Jake....... can understand that completely..... you keep on feeling good on 3mg and my very best wishes for Jake and what he is facing shortly.....virtual hugs for you all

Better news of you Lizzie - well done and chin up - hope all goes really well for Jake next week! :goodluck:

Love, MrsO