It's not going well and I am feeling low.

[IdasMum]

As I have posted previously, on 21/08 at the behest of my Dr I started Hydrocortisone and reduced my Pred down to 7mg. (I note from my original post back then I write, I am not full of energy even on 8mg...just plodding along. )

I felt good for a couple of weeks and dropped the Pred again. By 7th Sept I'd dropped to 5mg Pred and still felt okay.

On 02/10 we travelled for a week in Normandy and I realise in retrospect I was struggling. Each day took until mid afternoon to feel awake. (I didn't connect this to my large reduction in Pred (even though the Dr had told me a few weeks before it was too much too soon).

As I have previously posted, I have continued to feel less well and reached a crisis 3 weeks ago with unrelenting pain and low energy but couldn't see the Dr as he was on holiday. I rejigged my meds and upped my Pred to 6mg and kicked 10mg Hydrocortisone.

Finally saw my Dr last Monday and upped my Pred to 7mg, kicking another 10mg of Hydrocortisone.

Today I am in crisis again. Much pain, hands, feet and shoulders. Fatigued walking 500 metres.

Folding washing was a task, lifting my arms was reminiscent of original PMR issues. I end up feeling tearful and angry at the backward steps I have taken over the last 3 months. I am taking stronger analgesia more often than I was.

My rheumy appt isn't until the end of January. I can't bear the thought of feeling like this until then.

I have decided (with Mark) to go back to 8mg of Pred. I may even leave the last of the Hydrocortisone in for now. I really want to feel well again and definitely want to feel well for our big trip in May.

To cheer me up and maybe you too I am sharing my latest pastel of Brighton beach at night from a photo taken by my friend. I am really pleased with it.

Thanks for listening.

[PMRpro Ambassador]

I think you have every right to be pleased with it!

Dropping 10mg hydrocortisone was a lot more than increasing your pred by 1mg - no wonder you feel ropey. 10mg HC is 2.5mg pred.

[SheffieldJane]

wonderful painting! Some wellness inside is trying to get out, clearly. This cannot be rushed Ida’s mum. Maybe a little more Pred.? I’ve yet to meet anyone who has done well, with a live disease, on HC.

[Seacat30]

I live in Brighton. Thank you for the photo of your gorgeous pastel.

[RachelJDH]

Your struggle sounds like mine. I know it is because I dropped my pred too quickly and was upset to have to go back up to 15mg but it did help with getting up the stairs but i did start on 35mg a year ago. Like you I am v tired until mid afternoon and often go back to bed for an hour in the morning (until I go to bed at night when I seem to be unable to sleep) and now experience random pain and lots of cramp in my arm and leg. I am not sure if this is the PMG or prednisolone!? What helps me is to make myself go out with friends for a coffee or a bite to eat which is distracting and lifts my spirits. I do find that most of us old gels are struggling with some condition. I am now reducing really slowly but even half a mg can have a reaction. Meanwhile struggling to fit into clothes🤦‍♀️ but hoping this will get better as the dose goes down.

[DorsetLady PMRGCAuk volunteer in reply to RachelJDH]

This may help with sleep (at night.)-

healthunlocked.com/pmrgcauk...

..and magnesium supplement or spray may help with cramps -there are plenty of posts - just type into search engine and filter to get replies from this forum.

…and what sort of random pain ?

[PMRpro Ambassador in reply to RachelJDH]

I echo DL's reply. Cramps are often due to pred - it makes you lose more magnesium through the kidneys and can deplete the level in cells.

[RachelJDH in reply to PMRpro]

Thank you that info is really helpful. I will get some magnesium tablets. X

[York54]

I l love your painting Idas mum! I remember feeling like you on HC , I stopped it in the end and just continued to reduce my pred gradually. I am off pred now but it has taken almost a year to begin to feel less tired , still feel achy now and then but paracetamol help . Now having trouble with acid reflux and a sore eye that refuses to improve!! Sending you positive thoughts and hope you begin to feel a little better. Xx

[Hidden]

Painting is amazing. Hope you manage to get sorted out.