Feeling low

[Cosmos22Marigold]

Thought I was learning a little how to cope with this pmr then Dr phones me and says she needs to get me off the preds due to all my side effects so from 15mg down to 12.5 in one go. I thought it might be too quick and it's played havock for the last 3 days. Can't do a thing. Very bad heads. Eyes playing up and all I do is sleep during the day. Not at night though. No energy and cant seem to stand for long. Legs and feet have pain in them.. Today I am doing 13.5 and see if it helps. I won't even ask her. I just wish she had time to read this site. I realise how busy she is but it doesn't help my situation. My husband came out of hospital on Saturday after an op so I have him to care for which I think is why I am low plus a funeral to arrange for my sister in law who died from covid. Sounds a hard luck story but I am willing and able to cope with it all if I could just get these preds right once more. I was doing good I thought till the reduction. Really down today. Good job for this site otherwise I wouldn't know who to talk to about it. Any ideas😂 would be appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi, Sorry to hear your troubles...the very last thing you need to be doing with all that extra stress is reducing...if fact the absolute opposite is often recommended.

Either your doctor knows nothing about your illness or your current circumstances - or both!

What side effects are affecting you? We may be able to help.....pity your doctor didn’t try and address them rather than knee jerk action to reduce.

Suggest if the 13.5mg doesn’t work then try 15mg - hopefully will be enough, but maybe not. You’ll just have to see.

And good luck with the other things in your life at the moment.

[Cosmos22Marigold in reply to DorsetLady]

Thanks for your reply DL. You helped me before when the Dr did the same thing when I was on 20 mg and she put me down to 15. I had to ring 111 at that weekend and they put me back to 20. I have only been assessed by the Dr from my diagnosis on the phone. The Dr was the one who told me about this site and said it would help me but I wish she had time to read it. My side effects are giddyness - eye vision-pains in my head - hot sweats - leg pains - shakes. Most of them dissappear when I get I to bed and try to relax. Not much sleep though. I was diagnosed in Nov 20 and that was just after I had buried my brother so she thought it was bought on by stress. It certainly seems like stress now with his wife dying also. I do appreciate all this help so much. Its my lifeline reading all the problems we all face. X x

[Hidden in reply to Cosmos22Marigold]

Do not rely on your doctor get a referral to ra specialist they are brilliant, well my one is

[PMRpro Ambassador in reply to Hidden]

It isn't always an option for PMR, especially at present. And sometimes they aren't so brilliant ...

[Cosmos22Marigold in reply to Hidden]

I will certainly thi k a out it. Thanks

[Cosmos22Marigold in reply to Cosmos22Marigold]

Sorry for mistakes

[Mcdurmott]

So sorry for your troubles—and they are significant. Can you talk to your doctor about your current circumstances— husband and SIL—to see if there’s some wiggle room in her decision to reduce the prednisone immediately? What side effects are of concern? So much stress! Wishes for better days ahead.

[Cosmos22Marigold in reply to Mcdurmott]

I just wish I could sit and have a chat with her but I can't in these covid times. When she does phone I will tell her what I have done in upping the preds and try and explain why. I know how busy they are but it doesn't help my situation. Thanks for your comments - much appreciated

[PMRpro Ambassador]

Ignore her and find another doctor to talk to who is more interested in the patient. There is only one way of managing PMR and if she makes that diagnosis she must engage with the problems and not leave her patient to suffer. I always want to ask them if they take their RA patients off their medications because of adverse effects? Though they do have more choice there,

What side effects are you struggling with? Tell us and someone will have been there and have some advice - there aren't many that can't be mitigated at least and a lot you can avoid when you know how. And sometimes the so-called pred effects are actually due to PMR - I had 5 years of PMR and no pred and had no end of so-called pred adverse effects?

And big virtual hugs because what you are facing at present is not just fluff.

[Cosmos22Marigold in reply to PMRpro]

Your post are so interesting and helpful. Today I am taking 13.5 mg after all the comments yesterday and am feeling just that bit better thanks to you all. My side effects today are blurred vision - sweats - shakey - and a little bit heady. It is slowly easing off but I only slept 3 hours last night so it could be tiredness. Thanks. X

[SnazzyD]

Well, it’s a hard luck story that’s real and on top of everything else; nobody’s judging here, I can tell you. Not sure what your doc’s plans are for when you have PMR but no Pred. What side effects are intolerable to her mind and your mind?

[Greensleeves]

I am so sorry you’re going through such an awful time .

Are you having side effects from the Prednisilone?

There are wonderful people on here who can advise .

Stopping the Prednisilone so fast could make you feel dreadful and you don’t need that on top of the other stressful things going on .

Big hugs to you x

[Cosmos22Marigold in reply to Greensleeves]

Thanks. Much appreciated

[yorkieme]

I can certainly sympathise with you as the same thing happened to me a few weeks ago,10mg to 7.5mg staggered from one day to the next and it knocked me through the floor.I still have the shoulder/wrist hand pain and I went up to 20mg.I have suffered with insomnia for over a year now,the early days in pain counting down every hour and desperate for the morning to come when my wife would wake up.

Lack of energy is still with me but either I have learned to cope better or the effect isn't quite so severe.

All of these things aren't easy for you to cope with but PMR doesn't present us with anything that could remotely be described as easy.

Asking someone to continue coping with pain may sound patronising but it may be necessary. Others more experienced will advise you about dosage but I do feel for you,and probably all of us would take it away from you if we could.

You have an awful lot going on,it takes an enormous toll,try get that message through to your doctor as she clearly doesn't know the full story. Take care and fingers crossed that your life improves,quickly.

[piglette]

I know some people can drop from 15mg to 12.5mg in one go, but I am not one of them. Probably a bad time to reduce when you are having a stressful time anyway. What is your doctor suggesting when she gets you off pred? Just leave you to suffer or has she some magic cure?

[Kendrew]

Really good.....and more importantly.... reliable advice been offered here. It's challenging enough dealing with this condition alone, but to have so many other stressful things in your life on top of that, will be unbelievably hard. All too often we hear of GPs like yours, who's intentions are probably well meant but unfortunately not based on solid, accurate or informed knowledge.

I can't add to the good advice you've already been offered, but I just want to say that this dark and sad period will pass and things will improve. Stay strong, and when you don't feel strong....lean on us. Sending hugs. ❤❤❤

[Hunter134]

Sorry to hear how you have so much on your plate.Not a good time to taper.I have learned to listen to my body and i tell my Dr.that.He lets me taper when i feel safe to do so.