Tocilizumab

[HeronNS]

FYI

dailymail.co.uk/health/arti...

[PMRpro Ambassador]

Trust the DM to be a bit late in coming forward!!!

[HeronNS in reply to PMRpro]

I was wondering how this relates to the fact that tocilizumab hasn't been approved in the UK for PMR (or GCA? can't remember). Could it trigger some public pressure?

[PMRpro Ambassador in reply to HeronNS]

I doubt it! It only matters to someone with GCA. Maybe the charity has pulled a string with a journalist - Kate might know.

[HeronNS in reply to PMRpro]

The link to the article was in a FB post from Patient.

[Polywotsit PMRGCAuk team member in reply to PMRpro]

I'm not aware of any string pulling in this case, although we have tried to get the DM to pick things up in the past because they have such a huge readership. I would hope that if PMRGCAuk had anything to do with it, it would be better crafted than that, and certainly not say that TCZ is 'common'!

[PMRpro Ambassador in reply to Polywotsit]

I didn't think it was likely really - what a pathetic article altogether!

[altywhite]

Interesting!! Tend not to believe the DM Online but we'll wait and see.

[PMRpro Ambassador in reply to altywhite]

It's OK - the stuff and its effect in GCA is pukka. The problem is that NICE turned the application for approval down first time as not worth money (that isn't the term they used but ...). The appeal is in this week or next I think...

[Polywotsit PMRGCAuk team member in reply to PMRpro]

We are waiting for the results of the second round of consultation. We had 19 patients and one carer submit their responses on the NICE website, and the committee seemed quite impressed by that. Also the BSR put in a very strong submission, as did PMRGCAuk. Discussion in committee turned on the likelihood not that people would be able to come off steroids after a year but that they would come off TCZ after a year, having got down to a low dose of steroids or in some cases come off altogether (meaning that they are in remission). Their report the first time round was very concerned that people might be on TCZ for much longer, e.g. two years or more, which would of course be extremely expensive. What might happen is that they refuse the approval but say they will review it in a short time e.g 12 months, when there is more evidence of the length of time people will be on TCZ. Or they might give approval but say that an individual patient will only be funded for TCZ for one year. We didn't get any indication in the meeting which way they would go. Witnesses and public have to leave when they do the 'real' talking.

[PMRpro Ambassador in reply to Polywotsit]

How long are patients on it for RA? Do you know?

[Polywotsit PMRGCAuk team member in reply to PMRpro]

Couldn't say for sure but let's try and find out. I seem to remember a guy from Roche saying something about 6 months. One thing that's interesting is that in GCA the levels of IL-6 are way higher than in RA.

[PMRpro Ambassador in reply to Polywotsit]

Really?

[DorsetLady PMRGCAuk volunteer in reply to altywhite]

Hi,

I’m not a great fan of DM either, but in their defence they do seem to have an interest in GCA/PMR - Proof if required as follows, pleased to say I’ve lost weight since then!

dailymail.co.uk/health/arti...

[altywhite in reply to DorsetLady]

That's interesting.....I'd never seen that. It was really informative too.....might show that to some people I know!!! Thanks DL.

BTW....recent pics show you're looking great!!

[DorsetLady PMRGCAuk volunteer in reply to altywhite]

Thanks, and feeling great too!

[Telian in reply to DorsetLady]

Hi DL, only just seen this article as I don't read the DM. I can only say that I was so lucky to get to see a new GP at our surgery who knew and was very interested in GCA.

A potted version of my troubles started back in 2008 - I was being treated for possible stroke, misaligned jaw and migraine. Then this new GP came along to our surgery 2013 ish by then - he immediately suspected it might be something else, all he said was that it could cause irreversible blindness if untreated but would monitor my headaches and gave me a new migraine treatment - this was now Christmas 2013.

Over the christmas period the headaches worsened very quickly and I started with mild visual disturbance that soon cleared up - until one night I lost the sight in my right eye and went to bed with this! Thought it was a bad migraine. By some miracle I woke up with my sight back but could not lift my head up it hurt that much.

New Year 2014. I went back to see the GP because my head was so sore and to tell him that I'd read the migraine treatment leaflet and it was unsuitable for over 65s! which I had now reached and could he change it! How pathetic was that from me, I am very patient but this bordered on stupidity not going to A&E at the time.

When I told my GP about the visual impairment he said enough was enough and immediately fast tracked me to Southend hospital where I live. I saw Prof Dasgupta and was on 50mg predisolone immediately after positive bloods and ultra sound - he told me that the risk of blindness was eliminated once on steroids. I'd never heard about this illness at all.

I applaud you for going to the DM as I too wanted to shout it from the roof tops but never did anything about it - I too care for my husband, and still am, and then got cancer 5 months on from GCA diagnosis.

After all of that I daily read these blogs but don't always reply and ONLY got on today to say how fantastic you look in your latest holiday photo, and I think you look younger too! - not to say you don't look good in the DM photos. So apologies for banging on about me today and you give me hope that I can too go into remission. I'm the one still on 3mg pred. after 17 months!

[DorsetLady PMRGCAuk volunteer in reply to Telian]

Hi Telian,

Great to hear from you, and glad you found a knowledgeable GP. Like you, until diagnosis I’d never heard of GCA nor PMR.

Actually I didn’t approach DM, one of their journalists contacted the charity and asked Kate Gilbert if anyone she knew anyone who was under 70, had lost sight because of GCA and was willing to talk to them about it. She put out a post to that effect, and I volunteered! And it went from there.

I’m sure you will go into remission, from what I’ve read on here it seems more likely with GCA, or maybe we GCAers hang around on the forum when PMRers don’t!

Good luck, and hope you’re soon in club zero!

[PMRpro Ambassador in reply to DorsetLady]

I think there are a lot fewer GCA patients for whom it lasts (in terms of getting off pred successfully) for more than 5-6 years - and there are quite a few of them. There are a few people I know of who remained very ill for a very long time but they have tended to have already been in their late 70s-80s when it hit.

And I do feel that it is the high dose of pred at the start that may make the difference for some of them. I suspect there may be a lot of PMRers who actually have non-cranial GCA which isn't recognised and then it drags on and on. I did a lot better after another problem led to a few high-dose infusions of steroid - I don't think it is coincidence.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I quite agree with you regarding the high doses of Pred. Much as we, and many doctors don’t like it - as I said to someone else “it does what it says on the tin!” Always provided of course it’s the right amount for the job!

[Telian in reply to DorsetLady]

Thank you DL, I did wonder how DM became involved but you were very brave and to have the passion to go for it with everything else you had going on in your life that took some doing - well done you.

I feel as if I'm getting courage up to try the next reduction and, if your recall our conversation about .5 reduction and cutting the 1mg tablets in half, I suddenly remembered having 2.5mgs pred in the past and have now got some in readiness - I still seem to have brain fog even on 3mgs pred daily!

Am going through cardiology at the moment following an abnormal ECG but can't help wondering if this can also be caused by the illness - do you know? I've had a number of symptoms last year that I don't understand why are happening eg extreme dryness down below giving symptoms of chronic cystitis, when this was investigated they found syringoma, begnign tumours in 'that' area, which apparently are blocked sweat glands. Was given a diagnosis by dermatology in the end of Vulvodynia for this dryness. I also have blocked sebacious glands on my forehead - there has to be a link? Then only last week I had an endoscopy as a result of blood in the urine (15 months been going on) and I have a small hiatus hernia and two polyps in the stomach, the Endoscopist was convinced it was all due to the GCA. I see prof d in April so shall have a discussion with him.

PS I also have PMR! This might sound an odd thing to say but I feel so indignant about having all these ailments - I feel as though I'm being invaded by aliens...

It's nice to chat to you and speak again soon I'm sure.

[DorsetLady PMRGCAuk volunteer in reply to Telian]

Hi,

The problem is primarily I think, due to the fact that if you have GCA, PMR or any AI illness your immune system is in such a poor state that you lose the natural ability to fight off other illnesses and minor infections that under normal circumstances your body could manage.

Plus the Pred also has an effect on hormones and organs in the body which I don’t think we fully realise. Okay we know about the risk of higher BP, diabetes, but if it effects some then why not all to a certain degree. I know we blame Pred, maybe unfairly, for a lot of things, but it’s a powerful drug and it’s bound to have negatives as well as positives- and maybe it attacks parts of our system that are weaker, but under normal circumstance wouldn’t cause a problem! I don’t know, it’s just a theory.

And yes I agree with you about all the other rubbish that comes with it - you just want to be back to being normal!

You will, one day!

[Telian in reply to DorsetLady]

I agree with all you say, think I'm going through anxiety more than usual until I get cardio results - but as you say one day! I'll hang onto that thought.

Many thanks DL for your time.

[PMRpro Ambassador in reply to Telian]

What was abnormal about the ECG? I have atrial fibrillation - almost certainly caused by the autoimmune part of PMR damaging the electrical cells in the heart that govern heartrate. Mine was finally found when I had a major reaction to i.v diazepam for back problems and when it was identified and managed I realised those funny palpitation feelings I had had since about the time PMR started had gone. I'd mentioned them to the GP - "your age". Pred didn't get a mention as he couldn't recognise PMR either so I'd had that for 5 years until I worked it out for myself.

[Telian in reply to PMRpro]

That's very interesting PMRpro, I haven't seen the cardiologist yet, just returned the 3 day heart monitor and the only feedback so far is from my GP (who carried out the ECG at his surgery) who said I had LBBB (left bush branch blockage!) That's all I know.

How do they manage your atrial fibrillation?

I eagerly await your comments...

[PMRpro Ambassador in reply to Telian]

This is a good article about BBB. It does sho up on the ECG as it sort-of explains.

mayoclinic.org/diseases-con...

I imagine the damage could be caused by auotimmune damage.

I'm just on medication to discourage arrythmia and an anticoagulant - which is the most important bit. It's worked well enough so far.

[Telian in reply to PMRpro]

Very interesting article and I feel slightly better that I've got it on the left side, the right looks more serious, I can only wait for my consultation now. I'm pleased your management is working for you, following your own diagnosis! At least I've learned its a bundle and not a bush!

Many thanks for your help again PMRpro.

[daworm]

Just read this last night...

news-medical.net/news/20151...

[PMRpro Ambassador in reply to daworm]

Yeah - not something that is going to happen for PMR I suspect. The cost is prohibitive at present and even here they say "Because cost is an issue in the United States health care system, ..."

If it is an issue in the USA, the mind boggles how they'd describe the situation anywhere else! I suppose if they could show it stops PMR with less than 4 shots MAYBE it might be an option...

[daworm in reply to PMRpro]

Pretty sure most insurances won't go for this expensive treatment..sad the way things are set up on health care systems...almost anything that's shows promise or works and is new is cost prohibitive...we'll stick with the cheap pred...until it does t cut the mustard anymore..

[PMRpro Ambassador in reply to daworm]

It will improve in a few years - at present tocilizumab is the only biologic of its type. There are 3 or 4 under development - once they are online the cost must fall once tocilizumab is out of patent protection.

[Bj2016]

The Mail on Sunday article is dated January 2017 not 18. That may explains some of the discrepancies between what was known then and the latest information that Kate has given us. Maybe?

[PMRpro Ambassador in reply to Bj2016]

Probably - I didn't think to look. The results of the Giacta study had been put out in November 2016 or thereabouts.

[dartmoorlass]

Many thanks for info HeronNS and for all the views expressed in the many replies. At least it's good to know GCA is getting more publicity. When I was diagnosed 3 years ago, no-one at the hospital had come across it and when I'd first presented at AE with BP off the scale and headache driving me to despair plus not able to chew etc, I was given blood pressure tablets and sent home at 3.45 am. I didn't make the exit, fainted, came to surrounded by concerned medics and immediately admitted as in- patient. Three weeks later following umpteen different tests, a cranial biopsy diagnosed GCA. Sheer luck I didn't suffer Dorset Lady's loss of sight. Thanks also to this forum and all the info posted, I hope no-one else will suffer her devasting loss.

[DorsetLady PMRGCAuk volunteer in reply to dartmoorlass]

Hi,

Takes a long time for news to get down to our part of the country. Must stop using them thar damn stagecoaches!

Hope you’re well (in relative terms, of course!) at moment. I agree with your last sentence - that’s why I’m always rabbiting on about things.

Take care.

[PMRpro Ambassador in reply to dartmoorlass]

It is estimated that 1 in 5 patients with GCA who are not diagnosed have some degree of visual loss - and I have heard a figure quoted of 3000 people per year who have loss of vision. What population that is from I don't know. But there are patients who never have any symptoms until one morning they wake up with loss of vision.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yep, I’ve read p the 3000 figure somewhere! Your last sentence is the scary one - not a lot anyone can do about that!