Great improvement. Encouragement gor others.Wondering should start next taper.

[Ebiker]

From my previous posts you will know that I have had various side effects from meds, low B12, adrenal insufficiency, awful gerd, zombied, shaky hands, wiped out etc. all after I had recovered from a pulmonary embolism.

Thanks to doctor eventually listening to me and all the information from DL PMR pro and others I am sreing greay progress.

I am posting this for others on the PMR journey as I know how much it helps to read of others' experiences.

Good news is that most of these problems have been sorted and I have gone from being absolutely zombied and feeling that I would never be my lively, active normal self again to having a clear head, energy, less hot flushes and a good percentage of 'feeling more myself' days. The turnaround started gradually early Sept. At this point I was on 6.5mg as I had to abort the drop to 6mg mid August. As I had been given a second lot of 6 B12 injections in early August I put the improvement down to that. I really did not appreciate the symptoms of low B12 are much the same as hitting the lack of cortisol wall!

I am now pretty sure that the dropping pred was letting my body know.

Now I have reached the point where I am feeling a lot better most of the time, I am keen to start next 0.5 slow drop. One thing worth noting is the fact that even on bad days I would have what I call light switch hours starting early evening, when I would feel fine.

Still same now when not on a good day it all mproves as the day goes on. Anyone have an explanation to this?

I am having the autumn booster tomorrow...against my better judgement as the jabs have upset my pmr in the past.

So there is a light at the end of the tunnel. Take heart. I am hoping to be back on my (electric) bike soon.😀.

[PMRpro Ambassador]

Sounds a good bit of progress!!!

[Ebiker in reply to PMRpro]

Morning PMRpro.

Progress indeed. After I posted yesterday evening I had a burst of energy and thoroughly cleaned the living room. Still on high at 10pm! Have you met this before...the improvememt as day goes on?

Booster today so hoping no setbacks. Feeling normal this morning apart from shaky hand.

I know there is a long way to go but hopefully I will get through the next drop to 6mg and motor steadily from there.

Hope you are having more sunshine than we are.

[PMRpro Ambassador in reply to Ebiker]

Generally yes - the last few days have been glorious autumn weather It rained a bit overnight and hasn't cleared yet but next week should be nice.

I think that PMR symptoms improve once you get moving and blood flow improves - it is quite a common experience. My best part of the day before pred was after a glass of wine with dinner! Also a vasodilator!

[Ebiker in reply to PMRpro]

l like your 'posh word' for permitted alcoholic drink😊🙃

[123-go]

Pleased to hear you're feeling better. All 'light at the end of the tunnel' stories are welcome 🙂.

[Ebiker in reply to 123-go]

Thanks 123-go. I see you were diagnosed a year before me but reducing ok a year ago. Where are you at now?

[123-go in reply to Ebiker]

On long, slow taper of 0.5mg every 4-6 weeks + (1mg four days then 0.5mg at present. Still taking 10mg leflunomide daily for Aortitis (asymptomatic).

Lately I have little enthusiasm for doing much indoors and although I basically feel well it takes me ages to get going. I was interested to read that you've had B12 injections. Was it your haemoglobin level that prompted these? Mine is towards the lower end of the range-125g/L and has been for some time: by no means drastic but does make me wonder. I'll mention this to the practice nurse at my full health check in a week or so. Incidentally, this appointment was rearranged because the nurse is sick. Covid?? If so, I blame the Rottweiler at the front desk who told me three weeks ago that I didn't need to wear a facemask. How dare she? Nobody in the waiting room was wearing one which made me all the more determined to keep mine on .

Apologies to any Rottweiler owners. I'm sure yours are very well behaved.🙂

[Ebiker in reply to 123-go]

Low B12 level was picked up by the (private endocrinologist) I saw. Doc had done lots of tests and made referrals but as you know it was taking forever. He missed B12.

My surgery then gave me 6 injections and there was improvement but after a month I was fatigued again so had another 6. B12 test a few weeks later showed level fine.

You might benefit from a B12 supplement tablet. As PMRpro said at some point, excess if body does not need it, is flushed out and sublingual tablets often work better than injections. Nurse recommended a company called British Supplements as they deal in 'clean' products...no fillers, no nasties. Just a thought for you.

I will ask for another test in a couple of weeks and if needed I have the supplement as NHS very reluctant to keep giving injections.

I know what you mean about masks. I have had sometimes 3 appointments per week to our medical centre and I always wear a mask. So do the nurses and doctors when it is me! But then I know them all. Some I taught years ago!

[123-go in reply to Ebiker]

I take a multivitamin supplement every day but a separate B12 would be the way to go. Thank you for the company name.

It could be said that you're at an advantage having taught some of the staff at your medical centre-they wouldn't dare get things wrong 😂.

[Ebiker in reply to 123-go]

Indeed. One of the advantages of living in a rural area where there is still a sense of community and caring. So lucky to have this amazing amenity here. One can always get an answer on telephone, a conversation appt. with a doctor on the day etc. Hope you can sort something to help with the lethargy.

[123-go]

Thank you.

I've just rearranged my ring binder containing my medical notes: a long overdue job. I feel as though I've accomplished something so that's it for today 😁.

[Ebiker in reply to 123-go]

There you go. Well done.I have just taken the leaves etc off my pond with big net. Didn't think a month ago I would be able to do that. All positive.

[123-go]

Well done to you! Be proud of how far you've come.

[Ebiker in reply to 123-go]

😀 thanks. Stay positive!

[Broseley]

Sheffield Jane once said in a comment that she uses a B12 spray. You get it from Holland and Barrett and it has a more instant effect. I bought some and it works for me. It's called Better You.

[Ebiker in reply to Broseley]

Thanks Broseley. All this sort of information is worth having. I have not had any adverse effects from the booster yesterday so I am going to start next slow drop this week. If I hit fatigue I will try B12.