Prednisolone withdrawal

[Raewynne]

My doctor wants to take me down from 50mg to 35

I have been getting jaw pain.Would this be safe.I have very bad vision loss.Glaucoma I think.Very dizzy and on insulin now.

[Rimmy]

Hi Raewynne (this was also my Mum's middle name - she had a Welsh grandfather- and hers was the same spelling as yours- unfortunately she also had GCA and lost a lot of her vision in the 70s-90s as they had no idea and she never had a proper diagnosis).

Anyway I don't know your background so far but if you have jaw pain and any vision loss at all already - regardless of the cause - but obviously more so if attributable to GCA - you really must be ULTRA careful about reducing Pred before the inflammation is properly controlled. The current GCA treatment guidelines of Jan 2020 (pinned on this site by PMRpro) treat jaw pain very seriously - recommending initially high doses - even if it is in a relapse situation.

Hope you get this all sorted soon

Best wishes

[Raewynne in reply to Rimmy]

Hi, Rimmy yes Welsh origin.Where do I find that information. Could you send Thanks

[Rimmy in reply to Raewynne]

Info available on this HU Forum:

healthunlocked.com/pmrgcauk....

[SnazzyD]

Hello, high doses of Pred can make one feel shocking (dizzy, weak, panic, etc) and is par for the course, BUT one does not sit out jaw pain and sight problems, let alone reduce. Sight can be normally affected by Pred in that it makes focussing difficult, particularly going from one distance to another. However, when you’ve got a few different eye issues you must get a professional to decide which it is instead of guessing. Glaucoma needs as urgent attention as GCA eye problems. Have you been seen by an ophthalmologist very recently? If not yoy need an urgent assessment now.

Does your Rheumy know about your current problems?

Have you adjusted your diet since Pred and added extra supplements?

[Raewynne in reply to SnazzyD]

No take Probiotics and vitB

Only allowed that in hospital.Have told Dr.Nothing done.They are.more concerned about isolating me because of shingles flare upDrhad me on. Cellcept of all things

An immune suppressant.I am no longer. Taking that!!

[SnazzyD in reply to Raewynne]

Do you have anyone who can help stick up for you and press for better explanation of the plan and eye assessment? Do you mean you are in hospital now??

[Raewynne in reply to SnazzyD]

Yes in hospital now.Rheumatologist seem to stick together here.Shes the nicest but I don't know how much she knows about Temporal Arteritis

This is my second time..Much worse

[SnazzyD in reply to Raewynne]

What does she say exactly when you tell her your eyes are bad and have jaw pain?

Do you have anyone to advocate for you?

[Raewynne in reply to SnazzyD]

No advocate

[SnazzyD in reply to Raewynne]

Ok, what does the doc say exactly when you mention your symptoms?

[Raewynne in reply to SnazzyD]

Nothing Just monitoring me

Give me a couple ofpananadol.Had ear ache today to.I think I shall refuse to go down until jaw pain is sorted

[PMRpro Ambassador in reply to Raewynne]

Is it just earache or loss of hearing, dizziness, tinnitus?

A reference for the ear pain:

ncbi.nlm.nih.gov/pubmed/314...

[DorsetLady PMRGCAuk volunteer]

Hi,

See you started at 80mg only a couple months ago, then 75mg - 70mg. So far so good, providing no symptoms- which I guess there wasn’t.

But from 70mg to 50mg only 2 weeks ago, to my mind was too much...and now a further 15mg reduction is boarding

on the ridiculous especially as you have jaw pain. As a matter of interest when did that start?

You’ve mentioned glaucoma in both posts, but is everyone 100% sure it is that?

Please don’t reduce until you’ve got a second opinion on your eyes and your jaw pain.....even if it means going to ER.

[Raewynne in reply to DorsetLady]

On will I will tell her I am not happy about it and ask her to get another opinion thanks bye y

[PMRpro Ambassador]

All you can do at present I suspect is remind them that jaw pain is in the same class as visual symptoms in terms of indications for high dose pred. Are you in Wales?

[Raewynne in reply to PMRpro]

Australia

[Raewynne in reply to Raewynne]

Also temporal pain around ears

Nurses just give me warm cloth for that

[Raewynne in reply to Raewynne]

Loadme up with Gabapentin and diazepam

[Raewynne in reply to Raewynne]

I'll ask for it to sorted and in the morning Let you know what happens

[PMRpro Ambassador in reply to Raewynne]

That reminds me of when I was developing a rash in response to an ACE inhibitor - antihistamines did nothing for the itch and during the night I was in tears - nurse appeared with a cold flannel. Next morning at ward round I demonstrated the ever spreading rash and I was off the ACE inhibitor before my feet touched the floor! And it is writ large on my notes I am allergic to them, not to be used.

I know it is difficult - you need a doctor with a brain. And it is the weekend ...

[Raewynne]

Yes

[PMRpro Ambassador in reply to Raewynne]

Though to be fair - in our local hospital the weekend lot are sometimes very good. But one weekend the duty doc decided OH's medication should be stopped. Just like that. Fine, it was likely to bring his BP up faster - unfortunately the diuretic wasn't being used for that, it was to keep fluid off his lungs. Luckily OH realised very quickly and demanded his pills - there was no argument!

[SheffieldJane]

Is your doctor aware that you still have key GCA symptoms? I would be reluctant to drop down in your place. Any chance of a second opinion?

Doctors do try to protect us from the harmful effects of steroids but the condition has to come first.