Very Important information for GCA sufferers

[Suzita76]

Hello there,

I’ve not posted for a few months,- sorry, but I think this is important information for anyone with GCA

I was originally diagnosed with GCA in May 2017 ( when I was 67) but have had no pain whatsoever since those first 2 weeks. Initially, I was put on 60mg prednisolone. Unfortunately, I have dreadful steroid side effects and nearly killed myself- when on a dose above 20mg, I have really terrible hallucinations, am suicidal, don’t sleep, lost most of my hair, and worst of all, have become diabetic (steroid-induced diabetes- which has nothing to do with diet or life style- my BMI is just over 18 so I am a little underweight if anything, and have always had a low carb., very low sugar diet- it is, without doubt,the prednisolone that has caused my diabetes).

I had tapered down very slowly to 4mg Prednisolone over the course of 17 months and had really low inflammatory markers until a routine blood last October (2018) showed my markers had shot up ( no other symptoms, no pain, and no infections that might have caused it).

My Rheumatologist was sufficiently alarmed to organise a PET-CT scan within 2 weeks and this might have saved my life. It showed that all of my major arteries were being actively attacked by my immune system - not good, as it could cause an aneurysm or stroke etc. ! Strangely, my temporal arteries were no longer being attacked!

What all GCA sufferers need to be aware of is that most of us have an immune system that is also attacking our large blood vessels, and this could have been going on for years before GCA reared it’s ugly head. Here is a link to a research communication that some might find very informative ( and scary!). academic.oup.com/rheumatolo...

Having suffered this confirmed and life-threatening “relapse” (major arteries- carotids, aorta, etc. all damaged, threat of aneurisms and strokes etc. despite no symptoms apart from raised inflammatory markers), I was recommended to start straight away on Tocilizumab injections (as part of a trial- although NICE passed this drug for GCA in 2018, it is not generally prescribed and is being trialled on a selected group)

With one thing and another (prescriptions and letters lost by hospital, Christmas break, then a series of chest infections), Tocilizumab has still not been started but in the meantime I have been reducing Prednisolone dose myself whilst having blood tests every 2 weeks to monitor inflammatory markers- otherwise I would be dead by now because of the severe psychotic side effects of high steroid dose. Now at 15 mg and just beginning to feel almost human again.

Meanwhile, I have read rather disturbing publications about Tocilizumab ( otherwise known as Actemra), so am undecided as to how to proceed.

However, my main reason for writing this is to urge anyone diagnosed with GCA to get their major arteries checked out too. I know I am very lucky (?) to have been recommended for an urgent PET-CT scan which confirmed their worst fears, but there are other less nasty ( and cheaper) ways to be checked out.

( I had a PET scan in 2016 for possible industrial -chemical-induced lung cancer, which was negative, so I know my arteries were not being attacked then).

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

Anyway, Spring is definitely here ( in the UK), and we must all make the most of everything eh?!

Best Wishes, Suzita

[DorsetLady PMRGCAuk volunteer]

Hi Suzita76,

Sorry to hear about all the problems you’ve had with steroids. I was very fortunate and seemed to get away fairly lightly all things considered.

All I can say is, please talk to your doctors as depression is really affecting your life. It is a well known side effect of Pred, and you obviously need help.

[PMRpro Ambassador]

The reason for the class action is not that tocilizumab has any WORSE a side effect profile than any of the other biologics used on rheumatoid arthritis (that is what the action is related to, not GCA) but because the company happened to forget to mention the figures that showed it was no better than its peers. By omission they created the impression it was better. Naughty - and when some people managed to see the link, the cash registers chinged. Hence the class action.

Do tell me - what other means are there of diagnosing LVV besides PET?

[MhairiP]

How awful for you - the pred side effects and the results of the scan. Are the pred side effects still as bad now that you are at 15mg?

It's interesting to read PMRPro's reply about tocilizumab - has that put your mind at rest at all?

[Suzita76 in reply to MhairiP]

Thanks, Mhair- now I am below 20 mg, I am at least sleeping more than a couple of hours a night and hopefully the other symptoms will subside.

The big dread is that the inflammatory markers will rise again- my big problem with Tocilizumab is the probability of getting severe infections , (which are inevitable with young grandchildren and also doing voluntary work meeting up with lots of deprived and sick people). It’s a balancing act isn’t it?!

I really should count myself very lucky, unlike so many poor people on this forum, that I suffer no pain at all.

Thank you!

[MhairiP in reply to Suzita76]

I hadn't realised that was a danger with tocilizumab - what a dilemma. What about looking into supplements/diet to boost your immune system - this is just a very personal thing, but I find if there's something practical I can do that might help, I feel so much more in control and confident that I can tackle whatever may arise. It may not always work, but it's good to feel that I'm doing something to balance out the side effects of medication! (Not that I've taken tocilizumab - I mean medication in general.)

[PMRpro Ambassador in reply to MhairiP]

The whole point of these medications is to SUPPRESS the immune system.

[MhairiP in reply to PMRpro]

Oh of course - sorry!

Just a random thought, though - if the immune system had something to fight, other than itself (e.g. an infection of some sort), would that reduce PMR/GCA symptoms?

[HeronNS in reply to MhairiP]

I picked up a gastric bug a couple of years ago (very unusual for me) and missed two pred doses. I had no PMR symptoms during this time, was only reminded to take pred when I was recovering and developing a headache and general feeling of something not right, not the short lived bug, and felt better a few hours after taking pred. I think others have noted that some illnesses do seem to make PMR go away for a short spell.

[MhairiP in reply to HeronNS]

That's interesting! I wonder if any research has been done into treating autoimmune illnesses that way - i.e. giving them a 'proper' infection to fight, rather than the a/o system fighting itself? Like a vaccination? (I know, I know - that's over-simplistic!)

[Hidden in reply to MhairiP]

I seem to remember something about that kind of thing but knowing me I either dreamt it....or its a film plot 🌻

[Suet3942 in reply to HeronNS]

Hi Heron. That happened to me last year as well. I had a severe vomiting/diahorrea bug and didn’t take pred. I expected to be in a lot of pain the next day but I was amazed that I felt none. I felt better than I had since I was diagnosed. I told my rheumy and he suggested I look at a website by Clint Paddison that advocates eating raw,juiced veggies and fruit.clears the gut of bacteria. He had severe rheumatoid arthritis and manages it by this diet. I haven’t got the discipline to follow it though.

[HeronNS in reply to Suet3942]

It was an interesting experience, but I can't say I felt better than I had since diagnosis, I did, after all, have to get through the bug, and then I needed the pred to keep me alive because of sleeping adrenal glands. Will look up the diet you mention. As I eat a lot of veggies anyway, although definitely not into the juicing fad, I might not find it too bad for a short stint.

[PMRpro Ambassador in reply to MhairiP]

It seems to in some cases. But not reliably.

[Hidden in reply to MhairiP]

The last thing I want to do is boost my immune system. It's that naughty thing that's causing all the trouble attacking me. I refuse to feed it 😜🌻

[MhairiP in reply to Hidden]

Yes, - sorry - PMRPro has just put me right!

[Hidden in reply to MhairiP]

🤣🤣🤣 that can be scary 😜

[Hidden in reply to Suzita76]

If you go that way, Tocilizumab , the best thing to do is wash your hands...a lot....and get the kiddies into the habit as a game. I take an immune suppressant in addition to pred. Thus i pre-wipe supermarket trollies and use anti bacterial gel. I have been on the dmard 2 years and had one bout of flu (reckon I got it in drs or chemist) despite having neices and nephews crawling over me at various points.

[Hidden]

So sorry to hear of your horrible experiences ...

I have GCA. Does the condition in the body’s major arteries have a name?

[PMRpro Ambassador in reply to Hidden]

Large Vessel Vasculitis

[Cally55]

What bad luck, this disease and its treatment has some horrible consequences.

Since I couldn't get my hospital to do a dexa scan what chance a PET scan? A year into GCA the neurology dept of same hospital recommended PET scan, rheumatologist just snorted when I mentioned it!

I got to "see" things when on a dose above 40mg of pred, badgers mainly! I wonder if having to keep the dose low to avoid psychosis prolongs the inflammation and allows it to spread?

Like you I get great comfort from the sunny spring weather. Although the garden is a bit of a mess later in the year spring bulbs are easy to plant and provide weeks of colour!

[PMRpro Ambassador in reply to Cally55]

The pred has no effect on the cause of the inflammation - just mops it up once it is created.

[Cally55 in reply to PMRpro]

I don't think I expressed myself very well, too much tramadol for the fractures! I meant that not taking enough to deal with the inflammation allows it to do damage.

[PMRpro Ambassador in reply to Cally55]

Yes, that does/can but I don't think it "spreads" as such related to the pred. It still goes on in the background anyway.

[PMR2011]

One can also get nasty infections while on higher doses of Pred. I have been on Tocilizumab for over a year. Other than my normal annual cold I have been fine. I do pay attention to washing hands and keeping my distance from folks with infectionS (but I did that on Pred too!). I successfully weaned off Pred (last dose Feb) and have been feeling well. Have not had a PET scan tho, maybe I should consider it?

[Valentina1]

Dear Suzita

Thank you. I was also on 60mgs I also suffered many side affects Life put on hold Am trying to reduce now down to 20mgs. I need to get a copy of your information. I cant thank you enough. Valentina xx