A question....regarding improper initial shock dose of Prednisone

[Grammy80]

When I woke and the sight in my left eye was gone, I called an ambulance thinking maybe I'd had a stroke. In the ER, due to my high SedRate and CRP and called a vascular surgeon to perform a biopsy of the temporal artery, scheduled for three days later. The ophthalmologist ordered 1 gram of IV Prednisone to be given for three days, the usual.

The hospital made a mistake and gave me 100 mg the first day, shot it in a vein, 100 mg the second and 1000mg IV, finally, on the third day. I'm past two years and as most of you know, I still do not have control over this disease.

I was wondering, could this initial error have allowed my GCA to become more firmly entrenched? Could this be why I am fighting at every turn?? 💖

[SheffieldJane]

I don’t know what your doctors’ legal obligations are in this case but I think that you deserve to have this question answered by them, preferably in written form. Your journey has been far from straightforward. Is there a patient rights group available who can give you impartial advice? 💖

[DorsetLady PMRGCAuk volunteer]

Hi

Could well be a factor…as we know you have had a very difficult time since…but it’s not an easy one to prove either way!

SheffieldJane ‘s suggestion regarding doctors actions may be worth following up, and whilst I’m not saying don’t - you need to be aware it is time consuming and can be very stressful especially if you’re trying to do it on your own ….

…and the fact that you had already lost sight in eye beforehand is likely to invoke the response that subsequent action did not impair your treatment.

Not saying that is correct, but gives them ‘wriggle room’.

[Grammy80 in reply to DorsetLady]

I appreciate all that you offer and agree it would be stressful and draining. I would be questioning it on my own. I know sometimes I'm on the phone with my insurance company for 2 hours and am totally drained...probably not worth the toll it would take.

About 50 years ago a waste truck went through a stop sign and and smashed into my tiny Pinto. My young son suffered a broken leg where he had already had corrective surgeries for a club foot, I suffered a brain injury and that took 5 years. I was only in my 30s and stuck with it, he had 3 more surgeries on that foot and at age 53 it is still a painful bag of bones for him. That was a pretty clear-cut case for sure.

It is so frustrating for me now because I'm draining my finances with home health at $1000 US per month. I can get no assistance until I have only $2000 left in savings or investments. What the US does for seniors leaves a lot to be desired....💖

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Don’t think the UK can hold its head up high either in regard of older people - but we get a bit more financial help - although not as much as some think or expect,

Agree, too much stress will be counterproductive.

[Grammy80 in reply to DorsetLady]

I asked my insurance company if there was a certain 'algorithm " that kicks in when you hit 80.....oops, she won't be paying too many more premiums.😏😏 cut her off~!

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

😊…😂🤣 was ever thus!

[artfingers in reply to Grammy80]

I'm sure you have probably met with an elder law attorney. If not I would check around for a GOOD one (we've had both). They can help you set up everything to qualify for care hopefully without necessarily spending down every asset. We did this for my step mom and my father and my mother. They know how to navigate the quagmire of our U.S. system so you can qualify almost immediately, hopefully. Each time we paid roughly $1,500 to the attorney but in the end it was definitely worth it to get the care we needed for each of them.

[Grammy80 in reply to artfingers]

Thanks so much, I was not familiar with that possibility. $1500 would be fine since I am paying $1000 a month, right? I will check into that tomorrow. Thanks a million!💖

[PMRpro Ambassador]

It MIGHT - but most GCA patients would be started on an oral dose of up to 80mg and the pulse infusion approach with the exceptionally high doses is not very common. You had had some visual loss already - that didn't get worse and once the sight in one eye is gone the chances of retaining sight in the other is, at best 50/50. 1000mg MIGHT have saved the sight in that first eye but there are no guarantees. What you were given saved the other.

Over the years on the forums we have come to the conclusion that a 2 year course for PMR and/or GCA is unusual to say the least - never mind what some doctors and textbooks say. jinasc, DL and many others over the years have taken about 4 to 5 years to get off pred - and the first 18 months to 2 years is a period when GCA is very likely to relapse.

[Grammy80 in reply to PMRpro]

Thanks as always, I knew my wise friends here would let me put my mind to rest....instead of wondering if I should pursue it or not. There are too many places for them to wiggle out...and no one would bother with it unless there were $$$ in it for them. Who said life was fair, right. It comes down to us...and our own spunk!! 💖💖

[PMRpro Ambassador in reply to Grammy80]

Two of the saddest words in the English language: what if ... They cause a lot of heartache because you can't go back.

[Grammy80 in reply to PMRpro]

True!!! and some of it I know I wouldn't want to revisit!! Going back is like going down a rabbit hole. I'm back on track...eyes forward. 💖

[DorsetLady PMRGCAuk volunteer]

Will just add to PMRpro comments - as many of us know, once sight is gone, whether it be for a few hours or longer (and the problem usually occurs whilst you’re asleep, so you don’t really know) - then it’s gone.

The dose given afterwards will not return that, but hopefully will preserve the other…but as we know that’s not always a given.

I understand where you are coming from believe me, and not underestimating your frustration, but my advice is just be pleased you’ve got the level of sight you have and move on with life - many don’t have that luxury! 🌸

[Grammy80 in reply to DorsetLady]

You are so right~! I have a space where I can sit, more than once a day, and just think. With all my heart, I consider myself blessed, truly fortunate.💖

[Grammy80]

xoxo What would I do without all of you? I won't have to find out!! You know I have a positive attitude but these last weeks...dropping 20mg adding Gabapentin...not feeling my sharpest...dealing with insurance companies....I guess I let my pity pot sneak out from under my bed. I LITTERALY love you~!!!!💖💖💖 That calls for three hearts. xo I want to be just like Jinsac......when I grow up.

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Not sure she has grown up ! 😊…I may be in trouble for that…,but heigh ho!

[Grammy80 in reply to DorsetLady]

I always said....I hope I never grow up, never stop getting excited, seeing new things, meeting new friends and being silly in a store or surprising the unexpected person with a gift or 'paying it forward' any chance I get. I love mailing things anonymously....life is a gift in and of itself, so really, I'm all set~!

A wise man once told me, you come into this life with your hands empty and you will leave the same way, but let your heart be always full. Those are the things I try to reflect on when I go to my special place.....which is just a chair in the garage, but I can smell fresh air...💖

[Constance13 in reply to DorsetLady]

I think she's grown up because she's mighty forceful at times.🤪

[DorsetLady PMRGCAuk volunteer in reply to Constance13]

..oh, don’t we know! 😳

[Grammy80 in reply to Constance13]

😄😂 I only wish I had the good fortune of seeing it firsthand. She sent me a pic of a T-shirt she was given about her 'tiger qualities ', for the life of me I can't recall it but I loved it so much I had two made for my grands. Character building~! 💖

[calicojoy41]

Bless you Grammy, you are truly a strong woman. I know I have never grown up and have wonderful girl friends that are the same way. They are my treasures. As I always say hang in there, keep up the good fight!!!😆😆😍

[Grammy80 in reply to calicojoy41]

Will do, laughing and being a bit silly helps especially if you have partners in crime....living vs existing, I say💖.

[AncientMariner]

I have been through this to an extent, my situation was or my complaint was that I was left waiting in A+E outside of the stipulated time requirement and that the professionals I saw seemed preoccupied I was having a stroke besides me clearly not showing typical signs with slowly occluding vision in the right eye. It took over 24 hours until I was finally placed on an IV drip of steroids but by then the right eye had had it. The defence hinged on I did not complain of "Headaches" which I wasn't having, but a sense of pressure. Getting a case across the line of provability is very difficult, and here in the UK a no win no fee legal team need at least 50% of the likelihood it can be carried (at least the one I used) so it takes time and endurance and the legal forms you sign are onerous. Mine failed and was dropped on the "Headache" so any word, anything you say will come into play here. I wonder why I have struggled to finally wring a diagnosis out of them of GCA?

[Grammy80 in reply to AncientMariner]

It is a tough road and after 'throwing out on the forum' and just being able to talk about what was going around in my head, I've decided that what it would take out of me physically and mentally is not worth any amount of money. I was thinking short term and home care costs. But what does it really matter, I'll be fine for a while, I've stashed some for my grandchildren's education, and then I will let the state pick up the tab. I'm going to have some fun on the way, however, I'll spend it down in ways that give me and others joy!💖

[Jane424]

Bless you. Your attitude to everything is wonderful. Wish you hadn't had to gain your wisdom so painfully. Good luck. xx

[Grammy80 in reply to Jane424]

You are kind, I get really ugly sometimes too...and down...but I do work at it. There are those times I give myself permission to be down or angry. A saint I ain't~!💖💖

[GCAfiveyearrelapse]

Hi very sorry to hear about your situation. Would be curious if anyone has any experience with the situation I am now facing:-intermittent vision loss led to assumed GCA diagnosis (relapse from 2015)

- no indicators other than transient vision loss in right eye. CRP and Sed rate normal.

- have been on 70-60-40-30 for the past month and plan now is to taper to zero aggressively - in two weeks plan is to be at zero.

-wait to see if the vision problems come back

-head to ER for IV prednisone if it comes back.

I have some misgivings about this strategy because there is obviously a risk of permanent vision loss if it turns out the steroids were, indeed, keeping the vision loss at bay. But neuro opth says after exam my eyes do not look like they typically would look if they had sustained GCA- related damage. So he feels it’s worth trying to get me down to zero and then be poised to hit it quick with steroids if it returns.

Thoughts from anyone with sight - related GCA experiences?

[PMRpro Ambassador in reply to GCAfiveyearrelapse]

You might be better reposting this as a new thread - more people will see it that way, just because of the way HU works. Anyone who didn't look at or follow this thread won't see it.

[DorsetLady PMRGCAuk volunteer in reply to GCAfiveyearrelapse]

If he doesn’t consider GCA, then what has he offered as an alternative diagnosis ?

He may feel it’s worth getting you to zero, and then address the issue if and when. ….that’s okay if you get enough notice.

But as we know sight can be lost in a matter hours, and if those hours happen to be overnight and you’re asleep when it happens, then you are snookered!

Personally, I would be a bit concerned about his strategy….but then I’m biased, being mono sighted thanks to GCA.

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

…and ditto to PMRpro’s comment re a new post.

[GCAfiveyearrelapse in reply to DorsetLady]

Thanks will do!

[Tiredspouse in reply to GCAfiveyearrelapse]

Have they checked your carotid artery for blockage? A friend had your symptoms and both hers were blocked, causing intermittent vision loss.Her ophthalmologist referred her immediately to a vascular surgeon.

[GCAfiveyearrelapse in reply to Tiredspouse]

Hi yes - 4 Scans reveal neck, carotid, thoracic etc are clear. All normal MRI/MRAs

[Grammy80 in reply to GCAfiveyearrelapse]

So sorry....I would be concerned about that strategy too. As DL said, it could happen when you are sleeping, as my left eye did. PMRpro's advice to start a new thread will garner more responses. I'd definitely want a slower taper to have time to experience symptoms and not be in a fix and say...Well, doc, I guess you were wrong. Follow YOUR instincts. Please stay in touch..💖