Hi, I was diagnosed with GCA last Dec, spent a week in hospital 3 days on an intravenous drip 60 mg steroids, steroids tapered but had relapses, consultant has now put me on chemotherapy I’m to have 6-9 treatments, I’m also down to 10mg of tablet steroids and wondered if anyone else has had to have chemo? Thank you in advance x
Chemo : Hi, I was diagnosed with GCA last Dec... - PMRGCAuk
Chemo
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Cally-Jay
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Hello, do you mean Methotrexate? It depends what dose is used as to whether it is technically used as a treatment for cancer as chemotherapy or not. For autoimmune diseases such as PMR/GCA and rheumatoid arthritis the dose is much much lower. It is sometimes used to help the steroid dose to be reduced so it is called asteroid sparer. You’ll get better answers when Europe wakes up; I’m off to sleep now.
Thank you for your reply, you have explained better than the consultant, it’s Cyclophosphamide I’m on, I’ve had 3 treatments so far, each lasts 2 hours intravenously and hasn’t made a blind bit of difference so far apart from sickness, red face and extreme fatigue, Kind regards 😊
Oh! It’s certainly not the usual. Any idea why they didn’t go for the biologic Actemra? Do their stats show a better outcome?; I’d want to know, as a patient. You’re here now but if you were diagnosed in only December I wonder if your flares were due to much too fast reductions. It is one approach I’ve seen in some posts here where they reduce very fast, the person flares (unsurprisingly) so they switch to expensive immunosuppressive alternatives with just as many side effects. One doc I saw told me off for not reducing fast enough saying, “when it fails you can have Actemra”. I refused and said I would reduce as I saw fit because it was working for me. After 5 months I was on 18mg for GCA with no other drugs and no flares. If you can’t tolerate it or it’s not working, trying again with Pred but much slower and a second opinion might be a backup idea. However, there may be other reasons they pulled up on the Pred so quickly.
Thank you for reply, reading all the replies it looks like I’ve been tapering too fast, consultant advised he’d conferred with other Rheumatologists and they had all agreed my next course of action was the Cyclophosphamide and how I’d respond to this x
Mmm - but did he say to them it was GCA rather than another vasculitis? And how he had tapered your dose?
This is a much more usual approach:
rcpe.ac.uk/sites/default/fi...
which the author still uses in her clinic at Luton and Dunstable Trust and quite similar to the approach Prof Dasgupta has used for years. He is acknowledged as the UK guru on GCA - he didn't use cyclophosphamide as far as I know he retired from the NHS a few weeks ago.
The start dose of 60mg for 6 weeks is a guide - some people need up to 80mg or even 100mg at the outset to get the inflammation and symptoms well under control.
I notice now you had a 3-day infusion pulse therapy. However, that doesn't mean he can reduce the pred dose at a silly speed - he must take the ongoing activity of the underlying disease into account. The pulse therapy gets the inflammation cleared out very quickly to reduce the risk of loss of vision, but it has no effect on the ongoing disease activity. And if he's so worried - why isn't he using tocilizumab which is approved for GCA and known to work reliably?
Where are you?
Hi, I’m in Teesside UK 😌 sorry if I sound ignorant but what is pulse therapy? Is it pred intravenously what I had at the start, I’m making notes to present to him thank you 😊
It's the name given to the 3 day infusions of up to 1000mg pred that some doctors use.
No idea WHY they call it that. It's an idea to reduce side effects supposedly:
"Pulse steroid therapy is a concept with a high daily dose of intravenous steroids over a short span of time (usually 1–5 days) and several regimens have been described. Doses of each pulse are not standardized but are usually 5–20 mg/kg for methylprednisolone (250–1000 mg)."
They have found that patients end up with a lower total dose of steroids over the entire time of taking them even with these passive doses at the start but it doesn't seem to be used that much. And it doesn't last forever - you still need ongoing pred at a high enough dose.
So are you at James Cook?
Thank you for that, I see the consultant at North Tees/Hartlepool are you based in the Teesside area x
Cyclophosphamide is used for other forms of vasculitis but I have never come across anyone where it is being used for GCA. It is certainly a very unusual way of dealing with someone with your history - the rheumatologist is being very hasty, that is a very fast reduction of pred and there is absolutely no wonder you have flared.
I would be seeking another opinion - and as soon as possible
pubmed.ncbi.nlm.nih.gov/234....
I have always had the impression the consultant has no empathy he’s quite intimidating, I won’t see him on my own as I struggle to understand things and get brain fog and mixed up ( all since being diagnosed with GCA) when my daughter questions things he gets very defensive, think it’s just his mannerism but not nice really, thank you for your input it’s something to think about 😊
That’s not good -he needs an empathy implant! And if something is going work for GCA -there should be a relatively quick response, doesn’t sound as if you’re getting that from Cyclophosphamide.
Personally I’d prefer the tried and tested Pred….even with the side effects..
Yeah me too regarding the pred but consultant has other ideas! Thank you x
We have woken up . As SnazzyD says, ' is it Metho' if not what is its name please? Could it be Actemra?
Do you have any other medical problems, your profile is empty - would be good if you could add a bit more info. If unsure, just click on avatar and read up on what the profile says.
ie diagnosed Dec 22 - started on 60mg and in 5 months down to 10mg - unbelievable, no wonder you are relapsing.
Others will be along soon, so a bit more info please.
Hi, Thanks for reply, it is Cyclophosphamide I’m on, I get it intravenously every 3 weeks, just thought it strange I was put forward for having this and wondered if anyone else was having it and how they were responding as it’s making me worse than ever, I will update my profile when my head clears 😊 Kind Regards
Beware any presentation where Pred is all bad and any other drug is your saviour from that, without proper reasoning. Cyclo is a major drug with its problems, I’ve had it for cancer. Nothing would induce me to have that instead of steroids. Perhaps the doses are lower but really with less or non cytotoxic options that haven’t been fully explored I’d want a proper evidence based rationale for this. Although some docs are favouring Actemra from the start, it is usually given for stubborn GCA after a sensible reduction plan has failed and I am interested to know if you had a reduction plan based on any official guidelines. There seems to be a general ignorance in the medical community about how Pred side effects can be managed and even avoided, so diabetes and weight gain are presented as inevitable, just as an example.
Hi, it doesn’t appear in my case a sensible reduction plan has been in place going on the feed back I’m getting, It’s a bit of a minefield, I’m making notes to present to consultant as I’ve just basically gone with the idea of doctor knows best and he has attitude, doesn’t have much patience tbh x
What were your reductions? If you don’t mind me asking? I’ve been in health for 30 years but I wasn’t prepared for the lack of research into PMR & GCA or even interest, pet theories, prejudice, lack of following guidelines, opinionated doctors and complete lack of understanding or care about the patient’s journey. There certainly are the gems out there that are not like this but I have been further staggered to find that the level of knowledge I had to acquire so quickly in order to advocate for myself has been repeated in stories here over and over.
Agree on last sentence - there has been progress, but have been on forum for best part of 10 yrs -and still getting same horror stories…
I'd thought it was improving - but the last few months there have been some really hair-raising tales!
What gets me more than anything is their deperation to reduce far too soon and too quickly - Prof Mackie agrees it can lead to problems, SLOW, SLOW, SLOW ...
Yes it did seem to improve for a while -hate to mention the dreaded C word - but as we know lots of other things seem to have been overlooked/under resourced over the last 2 years.
Think for certain medical people as well they are physically snd mentally wiped out, so not on the top of their game. Not laying blame on individuals, but our much of our nhs is not in a good place. Scary to be honest.
There are problems here too - waiting times that have never been seen before and staff shortages - but it is wonderful in comparison.
This morning I nipped up to the GP - tried to ring her the other day but didn't get through - someone was coming out as I arrived, then she took a phone call and I was in with her less than 10 mins after getting there. By the time I left there were 4 waiting so I'd timed it well. Had a rant together about the loony linguistically challenged Italian female rheumy I came up against last week - apparently she writes War & Peace reports of patient's appointments!
Have to say I couldn't complain about yesterdays appt with surgeon, brilliant...but took some nagging to get there!
I think that is the worst bit - actually getting to that point.
100% agree with this Snazzy. Unfortunately I feel totally unsupported, except by this forum. I have yet to find a doctor who is actually interested, apart from the locum who first diagnosed me and put me on pred, and the one who talked to me recently about my sight. I’m beginning to think that locums can give better service, partly because they don’t have to worry about follow up - so they’re more decisive. Ironic!
Couldn’t agree more, I always get the impression I’m a nuisance 😭 so glad I found this forum and like you say it’s helped me enormously and I only joined yesterday! Can I ask about your sight? Up to now I’ve had no problems with my sight but the last few days they seem very dry and blurry at times, I thought I needed more strength reading glasses but reading on here sight can be effected, I need to make an appointment with optician as could possibly be cataracts due to steroids x
Blurriness can be side effect of drugs, and use eye drops. I use Hycosan Extra as recommended by my optometrist -and yes get your eyes checked. If you are concerned about steroid induced cataracts make sure you always have reactolite/transition lens (if you don’t already) and/or good quality sunglasses.
You can’t stop any damage done so far, but you can prevent them getting worse.
Hi Cally-Jay 😊
I can only say what happened to me - your case will probably be different. But for info….
I was diagnosed with PMR in March 2021 and put on 15mg pred. By June I had blurred vision, headaches and jaw pain. Reported these to GP as they’re typical of GCA, she made an appointment for me at rheumatology dept for three weeks later. Meanwhile I was put up to 40mg pred and by the time of the appointment the symptoms were resolving. Biopsy was inconclusive but I was diagnosed with GCA on basis of symptoms. Have only had phone appointments since then.
Re the more recent issue, I developed cataracts very quickly, probably due to pred, and got awful double vision after the first eye was operated on. Ophthalmologist was dithering about whether I should have the second op. GP helped me make the decision to go for it - and thankfully it’s turned out well.
Not sure any of that is of help - do ask if there’s anything specific. I’ve found I have to gird my loins and be quietly assertive with the docs. So good on you for getting all the info you can before your appointment!
All the best 😊xx
Have you had Cyclophosphamide explained in terms of side-effects to expect and risks and given an information sheet? Are you having a blood test done every time you go back?
Yes I’m aware of the risks etc 2 days prior to the chemo I go to the hospital for blood tests I have fact sheets also, I’ve not seen my consultant since I started this treatment ( did see him every month prior to this ) he apparently will see me when he has an idea how I’m responding to the treatment x
Dry eye is a common complaint - can be due to the autoimmune part of GCA or the steroids. Either way, artificial tears should help - I like a liposomal spray that you spray on your closed eyelids. Ask your optician or the pharmacy.
At my recent optician appointment, he pointed out that I have very dry eyes. “Doesn’t it bother you?” he asked. I said, no, not in comparison to everything else…But I bought the spray anyway, must now start using it!
😂😂😂
They also have no preconceptions about the patient ...
That’s true! Possibly the most significant factor …
pubmed.ncbi.nlm.nih.gov/234....
Thank you so much for this info it is very interesting and explains things x
Very small study -15 patients
Also:“Conclusion: Cyclophosphamide is an interesting option for GCA patients with GC-dependent disease or with severe GC-related side effects, especially when conventional immunosuppressive agents have failed.”
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