I'll Have What She's Having...

I'm not saying I will ever be approved for ACTEMRA; or that I believe it's the "end all, do all," panacea for complicated GCA cases (Hell, I don't even know if I am a "complicated" GCA Case, but it sure feels like I am!) ...however after everything I've read and after talking to people in the USA who are taking it, I'm game!

In the past 107 days, I have gone from 40 to 60, 60 to 50, to 55 to 45, 45 to 80, 80 to 75, to 70, to 65, to 60, to 55, and now (today) 50mg, of Prednisolone!!!

I have experienced pretty much EVERY side effect and withdrawal symptom listed in all of the Medication Package Inserts and found on most medical websites! I have been to the GP an average of 3 times per month, have seen two different Rheumatologist, a total of 5 times and spent a countless number of lost , unproductive hours on this freakin couch! Okay... Calm... Calm... Breath... Submit... Relax...

I'm just sayin... last week's news about ACTEMRA has given me hope! Hope that there may be an option for me!

It was suggested to me that I "manage" my illnesses, as I would any project. i.e. manage the project to meet the required scope, timeline and cost; while mitigating risks and resolving issues.

So I figure, if there are new "tools/technologies" (ACTEMRA) on the horizon... that could assist with the controlling the withdrawal symptoms/side effects/quantity of steroids required; I, as a good PM should be all over that, right? I mean, "mitigating" risks and all!

Who knows if I'll meet the criteria, but I am duty-bound to ask and argue my case, right?

I found this brief (below) yesterday while searching the net and will take it with me to the Rheumy on April 18th when I see her, for the first time, as an "NHS" patient!

ACTEMRA for GCA -

actemra.com/content/dam/gen...

[Rimmy]

Thanks for that comprehensive brochure Melissa - just hope one day this drug will also become available for GCA in OZ - currently I believe only for some people with RA. I'm not really au fait (until I wade through the minute detail) with just whom they will prescribe it for in the UK - but I'm sure being as informed as you are - you'll soon figure out with your specialists what is BEST and when for YOU !

In the meantime it is great to hear you have taken another wee taper down - especially if the timing is right for you - it always feels like 'progress' and we all need some feelings of encouragement, achievement and control - just the fact we have made something happen !

X

[Hidden in reply to Rimmy]

Thanks Rimmy! Yes, I have to do more research, of course, but we shall see!

I was quite please with tapering to 50 mg today, and I will be here for 30 days! Maybe that will help with what has widely believed to be "withdrawal symptoms?"

xx

[SheffieldJane]

Thank you for posting this. It’s a powerful drug with alarming side effects. I would like to read something that outlines the benefits in layman’s language. I need to sell drugs to myself so that I’ll be good and accept them and not freak out at the least odd symptom. Pred has been a fraught romance, but after yesterday’s reminder of the pain and disability, I know it was worth it. I hope that , if it is the best thing for you, that you are prescribed it and get lifted out of GCA and are set back on your feet in record time. In the meantime I would be doing everything possible to support good health in getting ready for its possibility. From now on you are a precious princess. Take note Nick.😉

I must say, some of those side effects make Pred sound like a pussy cat at low doses. Be careful what you wish for. Also I do not know what 80 mgs or 60mgs or 55 mgs of Pred feels like. I hope you get responses from the GCA veterans with more layman’s nitty gritty.

I think other steroid sparers have to fail you before they give you Actemra don’t they?

The hope though, the blessed hope. 🙏🕊

[PMRpro Ambassador in reply to SheffieldJane]

"some of those side effects make Pred sound like a pussy cat at low doses"

My sentiments exactly - and at the price I think it is only ever likely to be made available to PMR patients with major problems. And even after 14 years of PMR and nearly 9 of pred - I'm not sure I class myself there...

[teesher in reply to PMRpro]

ACTEMRA sounds terrifying and that leaflet reads like it's been written by a lawyer heading off potential lawsuits.

[PMRpro Ambassador in reply to teesher]

I'm pretty sure it was somehow!!!!

[GOOD_GRIEF in reply to teesher]

The lawyers weren't succesful. Lots and lots of Actemra lawsuits underway in the US.

[teesher in reply to GOOD_GRIEF]

OMG

[Hidden in reply to SheffieldJane]

Thank you, thank you, thank you.

Yes a LOT of questions and concerns... as mentioned, I am not convinced it is the "panpharmacon," but I'm glad they are closer to approving it for GCA patients, in the UK.

I just remembered this morning (and Nick confirmed he actually said it) that Dr Hughes described me as "steroid resistant." I should have asked for a more detailed explanation at the time, but we was commenting on the fact that I had gone from the initial dose of 40, up to 60, tapered down to 45, but then had to go up to 80 to get the same relief I had originally received at 60! He seemed to imply that my body is highly "tolerant" or "resistant" to the drug itself... although no apparently tolerant or resistant to the side effect!!!!!! : o

Should this be the the case... tapering to any "reasonable" dosage may be problematic for me and make me a good candidate for steroid sparing agent options.

All I know, is that if I have to continue like this (dealing with side effects and withdrawal symptoms) I will need help... : (

[SheffieldJane in reply to Hidden]

I would imagine that you would be the kind of patient they have in mind, for this medication.

I would be excited though, light at the end of the tunnel excited. ✨

[SheffieldJane]

PS. Is the lady having CBD oil?

[Hidden in reply to SheffieldJane]

Hahahahahah, I believe it may be something along those lines, yes!

[PMRpro Ambassador]

To go with my comment to teesher a bit further up the thread, I think this is also relevant as a thought to mull over:

statnews.com/2017/06/05/act...

This is referring to it being used in RA - but the drug itself and how it is used are no different in GCA. I think it is important to think about the big picture. If you have been on pred for a long time, as I have, then maybe Actemra/tocilizumab may seem very appealing. But at the same time - I have no problems I can identify with pred, even after nearly 9 years. The picture with tocilizumab is a bit different - it is approved. But now they are doing the rest of the clinical study - and perhaps not under as stringent controls as it might be. Will similar situations arise with GCA - where we know there is a long term risk of cardiovascular disease?

I really am not sure it is a straightforward no-brainer.

[Hidden in reply to PMRpro]

: O

[1Purplecrow]

I have no formal advice to add here...but want to send some gentle good energy and wish you to a small resting place...far far away from the craziness of the day, someplace where you take a few calm breaths and find some peace.

I was never at such high doses of pred., but remember what it feels like to be at my highest ever...i felt like one of the circus performers who tosses plates up to spin on sticks, then gets more to toss up, while running back to keep all the others still spinning. It is totally crazy-making, and eventually led to mega crash and burn...only to rise again to the same task.

I hope you can ask for plenty of support from friends and family, and come here often for “wisdom from those who have come before”.

Kind regards, Jerri

[Hidden in reply to 1Purplecrow]

Thank you Jerri, how lovely!!!! Thank you.

Oddly, (or was it just synchronicity) I just (a few minutes ago) I got out of a heavenly, hot, bubbly, fragrant, oil filled bath... It was so relaxing and quiet and soothing, I stayed in it for well over an hour! So your wish for me came true!!!!! Thank you!!!

I LOVE your analogy of the circus performer tossing plates on sticks... it's perfect!!!!!

And how did you know to ask!!!!??? Of course I am not asking for support from friends and family.... However I do come here often for “wisdom from those who have come before”. That's something!!!!!

[1Purplecrow]

Good for you...hot bubbly and fragrant❣️ This is an exceptionally difficult time for you and others who find themselves in this situation. Its rather like having a baby... too late to change your mind, just need to go through it!

Since October, 2013, This forum has been my trusted advisor, all night bartender(always awake to listen) and the fountain of wisdom.

In time , you will change places...and become one of the “wise old ones”, till then just take care of yourself best as possible and know we have your back.

💜J

[Hidden in reply to 1Purplecrow]

Thank you, I so appreciate knowing that you all have my back!!!

[SheffieldJane]

I suspect your guardian angels have your back as well. It will all be well you’ll see.

[SheffieldJane]

Why not join the panel as a patient rep. So that you can be at the cutting edge of what’s happening with Actemra? I refer to PMRPro’s earlier post about it.

I know you are ill, but the commitment might not be huge, you are a great communicator, and it wouldn’t do them any harm to see how a “ steroid resistant” patient suffers.

Apologies if you have volunteered or if it is an insane suggestion at your stage of GCA.

I joined research in my early days with my Rheumatologist ( Sarah Mackie) I felt that I was getting gold star attention.

[GOOD_GRIEF in reply to SheffieldJane]

That's exactly what Madam Project Manager needs - a project to help her deal with what's going on with her body, while helping others along the way...

[Hidden in reply to GOOD_GRIEF]

Good grief, Good_Grief... You'll need a mask too!!!!! I better get cracking, Christmas is only 288 days away!!!!!

[GOOD_GRIEF in reply to Hidden]

I'd be delighted - but the shipping costs to NYC will be far too expensive.

How about a printable paper model? Shipping would be FREE!

[Hidden in reply to GOOD_GRIEF]

You are so sweet! We'll see...

It should be very, light an not too big.

I ship stuff to Massachusetts all the time, it's not so bad.

We shall cross that bridge when when get to it...

[Jackoh]

Found all this information about Actemra very helpful but also a little bit frightening if I'm honest. I was in someway thinking this would be the next step for me. Have been on doses around 18 mg for so long now and it seems one step forward, three steps back. Am already on Leflounomide but after recent flare after really bad cold it's possible I may have to go back up to 20mg ( Rod Hughes doesn't want me to go any higher if at all possible) which is where I was about 18 months ago. It's quite a difficult decision to make, I feel, that is presupposing that I would be offered it at all anyway.

[Hidden in reply to Jackoh]

I hear you!, Jackoh!!! I was excited and hopeful last week, but today feeling a bit "flat," about Actemra. I guess I secretly was hoping it would be my personal panacea. : (

[Jackoh]

Yes I think I felt the same Melissa. Xx

[SheffieldJane]

And who is to say it won’t be?

Courage guys!

[Hidden in reply to SheffieldJane]

YES! Look at me wussing out already!!!

“Success is not final, failure is not fatal: it is the courage to continue that counts.”

~ Winston Churchill

[SheffieldJane]

He had the black dog too bless him. (His pet name for depression).

[Hidden in reply to SheffieldJane]

I know... Remarkable man. Last week, I saw a black and white, framed, vintage, photograph of him, sitting in a chair, posing for the shot... maybe 15'X15." It really called to me for some reason. I wanted to buy it, but in the end, didn't... I am now kicking myself!

[SheffieldJane in reply to Hidden]

The letters between his wife Clementine and Winston are a really absorbing read.

Fight them on the beaches etc. Inspiration for the battle ahead