Valentina1

[Valentina1]

I want to reduce prednisalone down from 20mg a day. Any suggestions welcome. I feel so disorientated and exhausted.

[SheffieldJane]

There are a number of tapering programmes described and pinned on this forum.

What condition do you have?

How long have you been on Prednisalone?

What was your start dose?

What do you mean by disorientated?

Are you under a Rheumatologist?

This will help people to answer your particular case. The advice is always a slow taper of no more than 10% of your dose, resting at each level to ensure the symptoms have settled prior to dropping down again.

Welcome to the site Valentina1, if this is your first post.

[Valentina1 in reply to SheffieldJane]

Thank you. Diagnosed nearly 3 weeks ago on 20mg polymyalgia. No to consultant just gp. Yes it's new to me. I feel like I have a mild altitude sickness. Exhausted as well. I have to concentrate when walking. It is the medication I feel sure of that. I want to reduce it. I thought perhaps halving one 5mg every two days might help. It is a little complicated by warfarin which is all over the place. It was lovely to receive your reply.

[SheffieldJane in reply to Valentina1]

I am assuming that your pain was improved massively initially. The exhaustion is part and parcel of having an autoimmune disease I am afraid. You will have to pace your activities and rest a lot. Sleep becomes your very good friend. Have you been prescribed other medication? I hope that you are on Adcal ( Calcium and vit D) if that is compatible with Warfarin. You have to be vigilant about incompatibility in your medicines, yourself, I’ve found. The altitude sickness symptom you describe, does that involve feeling dizzy and a bit unreal with breathlessness? It ought to settle when your body gets used to Pred.

Please don’t be in too much of a hurry to rush off Pred. It is the one reliable drug we have and if you try to drop too fast you can end up back at the beginning again. I found that dropping 1 mg a month until I got down to 10 mg suited my body, then 0.5 a month thereafter, pausing if my symptoms crept back. The aim is to find the lowest possible dose that you can be comfortable at. The disease can rumble on for several years. I have had PMR for just over 2 years and currently 7 mgs seems to be as low as I can get.

Please ask all your questions as they arise and share your experiences. This forum is a great support full,of experienced, knowledgeable people. All happy to help each other. It’s quite unique I think.

[PMRpro Ambassador in reply to Valentina1]

"I feel like I have a mild altitude sickness. Exhausted as well. I have to concentrate when walking."

No - much more likely to be the illness. The pred is just dealing with the inflammation - it does nothing for the actual illness which is an underlying autoimmune disorder that causes your immune system to attack your body - and the result is a bit like flu. YOu would expect to eel like that with flu.

You may want to reduce the pres - but if you reduce at that sort of rate all that will happen is that the symptoms return and you will be back where you started. PMR lasts years - not weeks or months and you will need pred for some considerable time. However, as your body gets used to it the side effects will fade and you will also learn how to manage them.

I was on a type of warfarin and pred for a few years - no problems at all for most of the time. It will settle down again once you are more used to the pred, though it will be a bit of a pain for the moment. Has your doctor not considered switching you to one of the new generation anticoagulants which does make life much much simpler. (I speak from personal experience).

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome,

I would think it’s probably a combination of warfarin (not the nicest drug to take) and Pred, and you ought to discuss with doctor.

I can understand if you think it’s the Pred you want to reduce, but it’s very similar to warfarin in that you need to find the level YOU need to keep your pain at bay - and that’s not always easy.

Did your GP give you any tapering advice?

Jane has given good advice, but have a read of attached as well it may help you understand your PMR a little better, plus I think because of the warfarin implication you need specialist advice, a Rheumatologist, or maybe run it past your Cardiology Dept, assuming you’re under them.

healthunlocked.com/pmrgcauk...

[Hidden]

Welcome Valentina1, I am sorry you found it necessary to join this site, but it is definitely the best place for you. You will find a lot of empathetic, expert advice here from caring people who know a lot about both PMR and GCA. I understand that you want to reduce your steroid intake, but believe me reducing too quickly will bring on even worse symptoms/side effects. Others will be along soon to give you better advice. I wish you all the best on your PMR journey and suggest you read as much as you can and ask lots of questions! All the best.

[SheffieldJane]

Good morning mamaci, you mean 40 - 60 mgs for GCA. PMR is usually between 15 mg and 20 as a start dose.

[Hidden in reply to SheffieldJane]

DOH! Yes! Thank you. My bad! GCA minded... I should stick to what I know, "empathy."

[SheffieldJane in reply to Hidden]

You edited it which made me think I had Pred head. 🤨

[Hidden in reply to SheffieldJane]

*laughing* Oh sorry.. I did not want to leave BAD info out there!!!!

[SheffieldJane in reply to Hidden]

I don’t know how to edit which probably explains a lot about my posts. 🤣

[Hidden in reply to SheffieldJane]

See where it says LIKE, Reply, More under your post.... Click the dow arrow next to the word MORE and there is an EDIT option. Click EDIT and it allows you to edit your comments...

You can also DELETE a comment, which come in handy if you've gone off the rails like I do occasionally!!!!!

[SheffieldJane in reply to Hidden]

Thank you for taking the trouble to tell me this. I practiced and was given the option to “ report” you. So I will, for being a good friend who writes useful, hilarious, irreverent posts that we all look forward too.

[Hidden in reply to SheffieldJane]

Hahahahahahahahahahahahaha. Gee, thanks!

[SheffieldJane]

Pred is available in 1 mg tablets that makes tapering easier than breaking up 5 mg tablets. It also comes in 2.5 mg tablets.

[Valentina1]

Thank you so much for the replies it's a good feeling to share I have been a sociable active woman and I am finding this quite hard I am self testing for warfarin which is a help nearly 20 years now. Have to get my life back as single

[Rugger in reply to Valentina1]

Valentina, have a look at 'Topics' on the right of this page. Choose 'Tapering steroids' and scroll down for about 17 posts to fine a 'Steroid Taper Web Application'. This will show you that there are many different ways to tackle the taper, when the time is right for you to do so.

Well done for finding this forum so early on - it is invaluable!

Where are you? In the UK there are local support groups, where you can meet others with PMR and GCA. You can find them at pmrgca.org.uk.