Advice and have you felt like this reducing pred ?

[Staffieblue]

Hello folksLooking for some advicePlease have been trying to reduce my pred

My doctor asked me to in order to get a rheumatologist appointment for them to see me. I have to reduce on my steroids doctor 1st asked me to drop from seven. 5 to 5 felt unwell doing this asked for advice here I have been Reducing by 1 mg on Doctors advice I’m now on five mg since Saturday

however, I feel unwell I’ve been sick the weekend feel lightheaded can’t seem to get warm Temp 35.6 this morning has now come up to 35 nine. I’m in bed trying to keep warm , no appetite at all

my vision feels like wobbly , no room spinning but when I shut my eyes it feels like my head is spinning a little then bit like watching the earth spinning in space .

Have spoken to my doctor today she wants me to go down to the surgery so she can examine me , told her how unwell I feel , thankfully my son is home from work he can take me but it is going to be a effort to try and put some clothes on .

Thank you .

sorry how it reads I have dictated it can’t type it out

[Staffieblue]

I did get advice few weeks back was feeling ok then suddenly this has happened , thanks again .

My Doc is lovely but just doesn’t understand the slow taper , I said it needed to be slow so that’s were the 1mg drop came from . 🫣

[piglette]

How sad. It does seem that your GP is not that knowledgable about PMR and steroids. Why did you need to reduce the steroids before seeing the rheumatologist?

[Staffieblue in reply to piglette]

Hi piglette that was their response when the doctor tried to get me an appointment , not until I had significantly reduced and they didn’t think it PMR due to my bloods not showing markers .

[piglette in reply to Staffieblue]

I suppose they wanted you to be doubled up in pain if it really is PMR.

[Staffieblue in reply to piglette]

☹️ it’s awful I know but I’m determined to get myself sorted or some peace of mind as to what’s going on with me .

Thank you for your response

[SnazzyD]

These are symptoms of not enough cortisol but not exclusively. Under 8mg your Pred doesn’t usually cover your daily living cortisol needs. If your adrenal glands can’t make up the difference it can make one feel like you do. Your adrenal glands have been switched off because of the Pred swamping your system but sometimes they miss the call to start again. It can take months to happen so this is why we have to go really slowly big we are affected this way. It was plenty fast enough for me to drop by 0.5mg over 6 weeks at this level. You GP might want to check your lying and standing B/P as a deficit can be a solid sign of adrenal crisis. If it were me, if there were no other obvious causes I’d put you back up to 7.5mg and see if that is the magic cure and then reduce much more slowly once you’ve recovered.

[Staffieblue in reply to SnazzyD]

Hello thank you for your sound advice .

Have just seen the Doctor , checked me over and my standing and sitting BP , no drop just bit high ,

I asked about adrenal crisis said didn’t think this was one .

Has prescribed me stemetil / Prochlorperazine 5mg to see how I get on , said to just phone and let reception know if I don’t improve and she will see me .

Thank you again I do appreciate it very much

[PMRpro Ambassador]

Do I understand it correctly? You have just dropped from 7.5mg to 5mg? If so - no wonder you feel rubbish. Steroid withdrawal and adrenal wobbles are both likely with a drop of that size at this level after 8 months on pred.

Of COURSE your markers are normal range when you are on enough pred - the pred suppresses the inflammation so there is nothing to trigger the liver to produce the proteins that raise the ESR, including the CRP which is the other marker. If they were never raised - that happens in about 1 in 5 patients with PMR.

As for insisting you reduce before seeing a rheumy - possibly helpful for the rheumy but at the present time it could be a LONG wait to see a rheumy and they should have done that sooner.

[Staffieblue in reply to PMRpro]

Hello , no I have learned something from you all , yes it was suggested to do that , we compromised on 1mg four weekly so 6 then 5 mg this Saturday .

Explained the slow taper again !!!. Doesn’t think it’s adrenals checked my standing and sitting BP no drop .

Just seen doc checked me over , BP a little high .

has given me stemetol ? hope I’ve spelt that right just waiting for prescription .

Thanks again 🌷

[strawclutching]

Do you mean Stemetil? They're usually prescribed for middle ear infections to reduce nausea and sickness but I doubt they'd be majorly helpful for steroid withdrawal or adrenal issues. I'm so sorry you're having to deal with clinicians who do not know enough about slow tapers, variations in inflammation markers and how they are not always conclusive. I have had similar problems. I do hope you get sorted soon.

[Staffieblue]

Thank you , my head has felt like it is wobbly when I closed my eyes I could feel it spinning and nausea .

I do speak frankly with my Doctor just doesn’t get the slow taper did check me over thoroughly and they have helped me this morning I’m out of bed just taking it easy don’t feel up to driving though .

I have an appointment with the pain clinic tomorrow afternoon have waited 18 months for this Hope I can attend .

Thank you very much for your thoughts and taking the time to reply all appreciated this is the only place where I have gained some knowledge from all you fabulous caring people 👍🌟

[Staffieblue in reply to Staffieblue]

forgot to say I have taken Stemetil before for how I was feeling .

[sherib1]

Hello. I understand what you are going through. My doctor is backing my prednisone down by one milligram per month. Most think this is too slow. I do not. When I decreased it by larger amounts and in less time the feelings that I had were much like yours. My PMR would flare and I would have so much pain. Slower is so much better. Doctors need to listen to their patients and act accordingly in decreasing prednisone when that patient has been taking it for many years and even many months. My GP would have me stop it in one week. Thank goodness the Rheumatologist does not agree!

[Staffieblue in reply to sherib1]

Thank you it helps my mind to know that others our experiencing what I am , not that I want anyone to suffer needlessly .

It just makes me feel I have to be on guard all the time to try and make Doctors understand me and not just hear me but to LISTEN !!

I know very well from personal experience with my husband who had a chronic condition for many years then became very ill , the battles I had for him , there were Doctors I knew had got him in safe hands others had not so that is when I went into battle .

Seems I’ve got to do this for myself but I have been made weary by all this .

Thankyou again hope you too are in a better place

[Karendeena]

Hi there, I went the same as you when tapering too quickly. I didn't realise what was happening, I felt awful, my weight dropped because I felt so nauseas I couldn't eat, I had panic attacks, felt I was dying. Convinced myself I had pancreatic cancer and paid for a CT colonoscopy. It was only when I realised that the tapering had resulted is problems with my adrenal glands not waking up did things get back on track. With the help of a rheumatologist and the lovely people on this site I did recover. I went back on the steroids and taper soooooooo slowly by half a mg every 2 months. I am now down to 2mg. Yes, it's taken me two years but who cares I will get there in the end and not suffer these appalling withdrawal symptoms

[Staffieblue]

Hello Karendeera,

Thank you for your telling how you have felt , it is so helpful to get guidance and advice it sounds like you have been through it .

Glad to hear you are getting through it and are in a better position on this hard journey to better health . Take care and thank you again .