Back up to 40 mg pred

[nallufl24]

I wrote here how I was down to 10mg pred in 4 months. You all said that was too fast and I didn’t want to believe you. My headaches were coming back so rheumatologist upped it to 15. It’s been 6 days and I still have headaches. Today he upped it to 40mg to get the inflammation under control. Both sed rate and c reactive protein are a little above normal.

Doctors office is now going to try to get my insurance to pay for Actemra so I can taper down again from pred. It’s going to take a while for that to happen since my insurance won’t pay for it and I’m not sure what they have to do to try to get it approved.

So, you were all correct! I am so disappointed. Some of my pred side effects were diminishing, now I have to start over.

I’m just venting here. Thanks for being here

[Nextoneplease]

Oh nallufl I’m so sorry it’s turned out this way. You must be so disheartened 😟 The good thing, though, is that your doctor has tackled your symptoms and as we say, always better to be safe than sorry! You will reduce pred again, with or without Actemra, and you will feel better again.

I hope you’re taking care of yourself, eating well, getting a bit of gentle exercise if you can…..and when you feel up to it, you deserve a treat of some kind, whatever floats your boat 😊

Am thinking of you and sending you hugs 🤗

Nextoneplease x

[cycli]

So sorry it turned out that you needed to up dose but it is for the best. You can't mess around with this one. I'm back to 30 and going to stabilise there. It's a difficult journey so stay positive. You will get down again but do it by slower stages regardless of the drive from rheumy and dr. You'll only flare again. Go and kick something and let some steam off. We all know how disappointing it is.

[Carriemetz in reply to cycli]

Good prescription! 😉

[SheffieldJane]

No satisfaction for anyone, in being right in this instance. I hope you get your Actemra funding so that you can reduce your Pred safely and quickly. It is disappointing but we just have to press on. X

[Constance13]

No-one minds you venting. We understand. Most of us thought we would get off pred much earlier than the doctors told us. We learnt the "painful" way too.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this, but correct way to go.

[Hidden]

Sorry to read your message. How long is it that you were first diagnosed. Look up The 'Dead Slow and nearly Stop' method, that many of us on the Forum are using. I too got a little impatient this year back in March, all that proved was GCA came back. Happily though I didn't have to increase up too much. Slowly does it and good luck with your slow taper.

[nallufl24 in reply to Hidden]

I was diagnosed July 13, 2021 with GCA. Almost everything I know about this illness came from internet. Doctors made it seemed great once I was on pred but it’s been anything but. I’m trying to adjust to this new normal but continue to have a hard time

[Nextoneplease in reply to nallufl24]

I think the unpredictability of GCA/PMR makes it difficult to adapt to a ‘new normal’. We have no idea how long this will last, or how or when we’ll get back to the ‘old normal’…..Like many others I have possibly reduced a bit too quickly (on firm medical advice) from 40mg in June to 12.5mg now. Today I’m paying the price with increased pain and exhaustion.

Take it as easy as you can and look after yourself. We’re all here willing you on 😊 x

[Hidden in reply to nallufl24]

Wow, you did taper very quickly, hence the 'flare up' I was diagnosed Dec 2019, started on 15 mg for just PMR, then GCA kicked in March 2020 had to go up to 40mg, where I've been slowly tapering ever since. Currently on 8mg with the odd day of 7mg. Next week I'll be taking more 7mg. What are the symptoms you're getting with GCA ? I had tender head (not too bad though) jaw claudication, and headaches and top back teeth ached. GCA is a scary one, so must be aware !! Have you checked out how do the slow regime ?

[nallufl24 in reply to Hidden]

Except for a headache I did not have the typical symptoms for GCA. I was filled with anxiety and depression. I knew something wasn’t right. I had no jaw Claudication. My blood work was crazy. My red blood counts were so low that I didn’t know how I was functioning at all. My inflammation levels were sky high. No one was able to help me. I went to my doctor several times. He did not seem too concerned with my symptoms. Went to see a hematologist who took dozens of blood tests and still couldn’t find anything. I could not get an appointment with a rheumatologist till 2 months later and I felt I would die by then so I went to emergency room at hospital and was able to see a rheumatologist the next day. I then had a temporal biopsy which indicated I had GCA.

[Hidden in reply to nallufl24]

Good job you persisted. I'm quite a headachy person, so I'd have no idea if my headaches, of which I have one today, is GCA or not. My eyes are my problem since starting Pred. They feel so heavy all the time and water a lot too. I've been using eye drops for Dry Eyes, as maybe that could be my problem.

[PMRpro Ambassador]

This time go more slowly - the speed of your reduction was always going to lead to this. Done properly you WILL reduce the pred even without Actemra - which only works entirely for half of patients anyway so see if they admit THAT while singing about how it will get you off pred. If more doctors listened to their patients' experiences our lives might be easier.

[Sharitone in reply to PMRpro]

Oh for a rheumy that listened!

[PMRpro Ambassador in reply to Sharitone]

They do exist. Honest!

[readingbooks in reply to PMRpro]

I agree, PMRpro. My treatment by my Rheumatologist has been exemplary from the beginning in 2017 and only now has she mentioned for the first time getting off pred as I move down ( very slowly ) from 5 to 4. I had never heard of PMR etc even as an SRN/RN and was hit hard when it happened . It seems I was just lucky, but ,yes, they are out there.

[jinasc]

On your profile you do not mention which country you live in - can you let us know please.

[nallufl24 in reply to jinasc]

I live in the United States

[jinasc in reply to nallufl24]

Thank you.

[Temoral]

I reduced too quickly too initially, on medical advice, and had to go back to 40...on slower taper now...so much better so far. Patient pacing as they say. It will get better...Good luck. 🤗

[Sharitone]

Some of my pred side effects were diminishing, now I have to start over.Lots and lots of sympathy! At least you know they will diminish with a decreased dose.

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

…and the increase will go towards saving sight….which is a real risk.