update

[Oscarsnan]

I took the 10mg of hydrocortisone with my 6.5 of Prednislone a few days ago and I felt terrible high bp,blurry vision, high anxiety.So I’ve now decided to taper instead so yesterday I started on a 0.25mg taper and I’m feeling a tad better. I think I need to taper rather than add anything in as I think my adrenal glands are trying to kick in and the hydrocortisone just mucked things up.

[SheffieldJane]

I would be afraid of managing this without the oversight of an Endocrinologist, following a morning cortisol test followed by a Synacthen test if deemed necessary. The Adrenal system is very complex.

Was the hydrocortisone supposed to be a kind of safety net as you came off Pred?

My Endocrinologist hasn’t suggested anything like this. He has a very high profile in the field.

[PMRpro Ambassador in reply to SheffieldJane]

I was flummoxed by that too. I think the idea was that she could have more steroid to make her feel less fatigued but the HC would be out of the system quickly and not interfere with triggering the adrenals overnight.

[PMRpro Ambassador]

Although some doctors don't think of it, HC has potentially the same adverse effects at pred - but also has effects of its own and several people have found they just can't cope with HC,

[Oscarsnan]

Just been to see Endocologist my yearly appointment I could cry he has really upset me I thought he’d be pleased that I’ve got down to 6.25 but he just said that is still far too much! I’ve really been through it getting to that dose like a lot of us. I told him my basal cortisol test was 525 and he said that means nothing as I’m still on to high a dose. He didn’t ask if I’d started adding in the Hydrocortisone so I didn’t tell him. I’m struggling with anxiety and that has just made things worse.

[DorsetLady PMRGCAuk volunteer in reply to Oscarsnan]

Sorry to hear about appointment 🌸 - I do wonder sometimes about what happened to a caring profession in some cases!

[SheffieldJane in reply to Oscarsnan]

My Endocrinologist told me that my face was fat, and asked if it had always been that way. The student sitting in on consultations gasped in horror. Don’t let them get you down. I am proud of the fact that I never took my grumpy moods to work - ever. 😇

[Thelmarina in reply to SheffieldJane]

Good grief! What an idiot! It’s lovely when someone betrays themselves like that - you are instantly in a superior position. Did you say ‘Oh dear - you don’t know about the effects of steroids. I’ll send you the information. ‘ Or ‘That was tactful! 😂😂😂

[PMRpro Ambassador in reply to Oscarsnan]

Some of them just don't think about the fact we need the pred for 2 things at this stage. I;'d complain about being treated like that.

[Oscarsnan]

Thank you 🥰

[Oscarsnan]

Still feeling bad anxiety on 6.25 been at that dose now for just over 3 weeks would it be a good idea to stick at that dose now for 6months ? I’m taking my Grandson away on holiday in July, looking after sons dog in August and then going on holiday myself in September I just want this anxiety to ease.

[PMRpro Ambassador in reply to Oscarsnan]

Depends a bit on your doctors and whether they will allow you to do that and not reduce. Some will try strong arm tactics and limit the prescriptions. But do speak to your GP about the anxiety.

[Oscarsnan]

I don’t think anyone would be worried about any dose I was on.

Gp has prescribed propananol for the anxiety which started when I tapered below 9mg.

Just thought if I stayed on 6.25 for 6months I would stabilise just so hard tapering at a lower dose after 11years.

[PMRpro Ambassador in reply to Oscarsnan]

"I don’t think anyone would be worried about any dose I was on."

We have come across doctors who make a song and dance about patients being on 3 or 4mg!

[Oscarsnan]

I know that and I feel very sorry for those people i was just telling you my situation.

I’m under an Endocologist and when the anxiety started I tried to get in touch with him as I was having severe panic attacks he got back to me after leaving him over 4 messages in 4weeks he said if I’m that bad go to A&E I did that they told me to contact Endo !! So I went to a private Endo who told me to add in Hydrocortisone which I did but made things worse! Now NHS Endo cross because I went private and didn’t tell him.

That’s why I’m asking for advice I wasn’t being disrespectful just very lost and scared.

[DorsetLady PMRGCAuk volunteer in reply to Oscarsnan]

I’m sure nobody thinks you are being disrespectful. ..and with your treatment from specialist who should know better I’m not surprised you are lost and scared.

As PMRpro suggested earlier in thread please try and speak to your GP and see if you can get any help from them on your anxiety issues.. 🌸

[PMRpro Ambassador in reply to Oscarsnan]

Not being at all disrespectful - and you really have been messed about.

[Oscarsnan]

Endocologist phoned me last week and accused me of not telling him I was taking 10mg of Hydrocortisone on top of the 6.25 of pred I tried to tell him I tried it for 1 day only and haven’t taken it since I also told him it was prescribed by a private endocrinologist who I had to see because he wasn’t answering any of my messages when I was feeling so ill and lost. He just went on at me telling me my good basal cortisol test was irevalant as I was on to higher dose, I was getting so very stressed out on the phone as I couldn’t get a word in so I hung up on him.

This week I have a letter from him discharging me from his care!

Made a double appointment with one of the better GPs at my surgery to discuss this although have to wait until 27th of this month to see him.

Continuing with the 6.25 for now hoping the anxiety will lesson soon.

[PMRpro Ambassador in reply to Oscarsnan]

Think I'd be putting in a complaint about unprofessional conduct: not answering enquiries and then berating a patient is not on.

[Oscarsnan]

Will discuss it with GP can’t deal with the stress of a complaint procedure on my own at present still trying to calm down. ☹️