Pred withdrawal issue

[Raewynne]

Hi I had a big problem yesterday.Ihada flare up Of Temporal Arteritis.Jaw pain and Earpain.Interim Dr insisted I still lower fr ,50 to 35mg.i said NO I will Not do that.I should. Not reduce if there is a flare up.Nurses refused to ring Dr and refused to give me more than 35 so I didn't have any prednisolone yesterday

.Still Have jaw pain this morning.They said. My inflammation markers were ok but I know something is wrong

Vision isterrible.In. Rehab now.notwell atall sending me home in 2days.

Dr is determined to reduce me know matter what.

[DorsetLady PMRGCAuk volunteer]

Very sorry to hear this is continuing...but there is very little we can do to help from distance.

I think you have been asked before - but is there is anyone who can intervene on your behalf. Friend, family, personal doctor?

[HeronNS]

I note that you said in an earlier post that you had no one to advocate for you. Usually hospitals have clergy who visit on a regular basis. Ask for a visit. Or if there is some other kind of visitor, I don't know much about hospitals, ask to have them visit you. I really think you need someone in your court who can support you.

Ask your doctor what he thinks is causing your serious symptoms (as he seems unprepared to treat you correctly for GCA, but you don't have to say that out loud!). Ask what they will do to relieve your symptoms.

If "they" seem to think you are demanding more pred because for some reason you just want it, point out to them that no one wants to take pred. But you need it because you are very unwell and it relieves your symptoms.

Hopefully someone will be along who can offer you more useful advice.

Good luck!

[SheffieldJane]

Look at the pinned posts to the right of your screen and read the NEW GCA GUIDELINES 2020. May give you some leverage if you show it to your Rheumatologist.

[Hidden]

This is awful leaving you like this. This is the worry when there is potential GCA present. We know our bodies better than anyone. Steroids can affect our eye sight it says it in the leaflet in box, as does GCA. One lady on the forum went blind recently maybe you should tell your doctor this.

Hope you feel better soon

Anne

[PMRpro Ambassador in reply to Hidden]

But let's be clear here - she lost her sight because of GCA and too low a dose of pred.

[Hidden in reply to PMRpro]

Oh, I didn't realise that. Did she have PMR first. What dose was she given? Just so very devastating for her.

Thank you for reply

[PMRpro Ambassador in reply to Hidden]

Not sure, you will have to look up the posts.

[TheMoaningViolet]

I am so sorry to hear of this. My only idea is to go to an ophthalmic A&E right now if you can. They will be very serious about any threats to your eyesight. Good luck. Vx

[Raewynne]

My eyes have deteriorated. Since withdrawing. Fast

Chest pain again this morning

Subsiding slowly

[Rimmy]

This is all 'wrong ' and I hope you can convince them by reference to the current GCA Guidelines - if your eyesight is deteriorating this is VERY serious !!!!!You can also lose hearing as well as eyesight and regardless of inflammation markers what you are experiencing is the most significant thing ! You could say you want to make a documented complaint as you are worried about losing your eyesight !!

[Raewynne]

I I complained vehemently this afternoon and I think there's want it was all in my head and want to see me to send me to a psychiatrist

[Raewynne]

Am now at home. Struggling Got a bit of hei

May go to another hospital or up my Pred myself

[Daughters2 in reply to Raewynne]

How are you today? You must go back to the hospital if still blurred. Please. My mum has completely lost her sight because didn’t get there soon enough. X

[Melti]

Raewynne, how are you getting on at home?

I see that the experts on this forum have given you some great advice and support - I am new to the forum and to PMR, and very much a learner here, but just to say that I am thinking of you and do hope things are improving for you.

[Raewynne]

Not good .Not enough help.No help on weekend.Husband coming out of his respite at night to care for me. I have had no one come to help me about blood sugars and very dizzy.Its all quite rediculous.Ihave a sprained hand as well from my fall in hospital.Stress is making my vision worse.But it's good to be home.

[Hidden in reply to Raewynne]

I presume you have. Glucose meter so ca. Monitor that. Have you got a senior Dr at the surgery or practice manager you can ask to look over what is happening. Good luck.

[Hidden in reply to Hidden]

I have been on the forum for four years on and off and often wish we could protest outside the surgery or hospital if our members who get rubbish treatment. I sort of imagine the scenes from old boris k movies, where a large bunch of hurting and angry post menopausal women with pmrgca support the member. After the c virus though. 😉🌻

[Raewynne in reply to Hidden]

Yes Chemist is assisting me.Hadno glucose monitor or anything.Still trying to sort out insulin out.

[Hidden in reply to Raewynne]

I really hope you feel better but suspect you are still struggling. As others have said a and e... But 999 if your eyes are worse. 🌻

[Raewynne]

Right now I can't stop falling asleep

[Raewynne]

Must be

Medications.I think Gabapentin must have something to do with it.Vsn cause vision problems and loss of balance.SawDrtoday

looks like hospital again!