The give and take of Prednisolone

[Groggrim]

For me, I think that Prednisolone can give and also take away. It has given me relief from the aching, burning pains that sent me to the GP, and it has given me this community that I appreciate very much. I don't know where I would be without all the knowledge and advice I have gleaned. But it has taken away my stamina, my concentration, my feeling of wellbeing. More than that it has taken away the ability to travel to Canterbury with the rest of our family to see our son off on his epic walk from Canterbury to Rome, and that is the hardest loss. It would involve travelling to London by train, crossing London by tube, more train travel, staying in a B & B, and then doing the return journey. With the best will in the world I know this would ask too much of the limitations I have, but my heart breaks 😔

[Obscureclouds]

Strange how we are all so different. Pred has given me back my stamina and feeling of well being😊

[Charlie1boy]

That’s a shame to miss his departure, but I think you made the correct decision. That type of journey would certainly have done me in, and still would today.

At least nowadays there are mobile phones to record it on?

[Groggrim in reply to Charlie1boy]

Yes I know Charlie, and thank you. I gave him his hug when he came to see us a couple of weeks ago. He'll only be gone three months after all.

[Pixix]

you need to roll with the punches, & celebrate other things, perhaps? Find joy in more simple things?! I had to cancel 4 holidays last year, with travel being our favourite hobby. Everybody could list things that change when getting an illness. Each one of us could give a long list of things missed with family etc. I have to live with not seeing my aunt when she was sick, due to my illnesses (not PMR, that’s my easiest illness to manage), & then I didn’t see her before she passed away. Adapt & move forward, that could be the key. If you don’t stop ‘sweating the small stuff’ you are going to suffer unnecessarily (mentally), I’m sorry to say. I thought you were going to take a break & try to think about other things in life. Don’t let PMR rule your life, it doesn’t have to!! Just my thoughts. I suggest you see your Dr and explain that you are not coping at all, & seek some help there. You may need some medication to help see you through,& help you to cope better, perhaps?

[Pinkcrocs]

Sending a gentle hug to you Groggrim🤗It isn't always easy and I'm sorry you are finding things difficult.

PMR would have prevented me doing challenging things during the early days and not the pred.

As much as I want to be off of pred its only on the condition my pmr has gone. I was ready for a wheelchair and needed a lot of help before I took pred. They were challenging times.

Things will improve for you.

And hopefully you will feel well enough to welcome your son home🤗

Best wishes x

[ngchgc]

I hear you, the many side effects of Pred seem to be worse than the disease.

As I have GCA the problems that I can get from that, outweigh the side effects of pred. And I thought that tapering would also taper the side effects, wrong! But everyone is very different and some of us are more prone to certain problems with medications. I may have 2 good days out of 14, but I can ruin a good day in 15 to 30 minutes of doing something I should not do!

You are not alone. Good luck.

[PMRpro Ambassador in reply to ngchgc]

"I can ruin a good day in 15 to 30 minutes of doing something I should not do"

That is the illness - not the pred. The most common reason for having that many bad days is that you may need more pred to control the inflammation which itself causes problems and not pacing. You may feel resentful that you aren't able to do as much as you used to - but that is part and parcel of the illness. Like ANY illnesss, it may cause a lot of limitations.

[Groggrim in reply to PMRpro]

I agree with what PMRpro has said 'You may feel resentful that you aren't able to do as much as you used to'. I resent everything about this journey with PMR and Pred but resentment is not helping, in fact it is aggravating the situation. I am trying to accept, adapt and apply as some kind soul posted recently, but I am still having a battle with it all. It's how I am and how I was brought up 😒

[Bcol]

Sorry to hear you are feeling down. However, you are unwell, you have a serious systemic illness which if not treated with respect and understanding will make you feel even more poorly. As much as your son will have hoped you could be with him for the start of his travels I'm sure he will feel much happier that you have made the sensible decision and stayed at home and not put yourself at risk of a flare and even more discomfort. Pred for me was brilliant and it gave me my life back, but brilliant drug though it is, you have to remember that you have to do your bit as well and accept that some, maybe many things have to be put on hold until it sorts itself out. Try and look at at the positive things and think about how you would be if you didn't have the Pred.

[Stills]

note I don’t have PMR but Stills disease diagnosed when I was 17 in 1979, Stills is a chronic rheumatoid condition. and very debilitating . The diagnosis meant I could not join the RAF as planned, couldn’t learn to drive as planned and couldn’t leave home as planned. It altered the course of my life but I still achieved some notable things. I know it sounds harsh but the sooner you accept the limitations of your illness the better as it’s not going away overnight. Thankfully these days technology means your son will be able to share everything with you and I’m sure he will have a better time knowing you’re safe at home and not suffering anymore than you have too. Chin up.

typo edit.