Ritixumab does it work on pan?

[asilanna]

Did you have to wait long time to get ritixumab? My consultant said it has to go in front of a board to agree it and it costs 10k a year????? How long do they take to decide and you in the hospital bed .did it work for you? Iv tried everything for pan.

I'm having awful flare at the mo and desperate for it to work and come off pred!

Cyclophosphamide vs ritixumab?

Both have sides effects.

Infitility vs dementia (rare ?)

My mum has dementia so prob gonna get that !

don't want anyone in control of my fertility but me! So want an end to all this suffering as this is no life!

Joint pain.ulcers that feel like acid/knife

Teeth broken.ulcers in mouth.eyes that blow up regularly and agony.vision impaired,whole body feels bruised. Finger tender to touch.urince infection s. Mysterious moving joint pain that disables me.lack of sleep. Shall i go on? This is no life just excistance!!!!!torture?

Iv lost my life my freinds my job my looks my integrity my daughter my boyfriend what else is it gonna take??????

my life?

what life.

[anthony01]

Yes, this is what happened to me! BUT if it is possible your consultant may put you on an unattended list - so if someone does not pitch up, you take over their treatment, the only problem you need to be flexible then?

It is unbelievable that there are people who do not pitch up, especially at this cost!

Hope you manage to get on it soon.

[Andrew205]

First time they had to look for finding for me but we only did the first 2 infustions we started again 3yr later and I only waited 3wk to be fitted in on the ward but it's been aproved on th nice list since I last had it it was £1.5k per infusion I as told first time round but I would think it's less now

[PMRpro in reply to Andrew205]

The price won't change much until it is out of patent - and for Rituximab that will be 2018. Things may change a lot then - though mabs are probably still not cheap to produce.

[Nap1 in reply to PMRpro]

Regarding retuximab... Has this drug been used for GCA along with prednisone to reduce the pred dose? Thank you.

[PMRpro in reply to Nap1]

Not that I know of. They do try using a lot of other RA drugs along with pred to try to reduce the pred dose either faster or lower - with varying degrees of success, mostly none. It sometimes works in PMR but that's because LORA can masquerade as PMR. The only mab I know of that has been used in GCA is tocilizumab and that has just been used in a clinical trial alongside pred - you have to, high dose pred is the only drug that reliably reduces the risk of visual loss so it is unethical to trial stuff any other way.

But even when the results of the trial are out (they aren't yet) and are good, I see there being a fight to get it used for all patients. They'll insist it be kept for people with serious problems with pred.

[Chris-Bromsgrove in reply to Nap1]

The PEXIVAS clinical trial is looking at reducing pred dose by using plasma exchange as part of the initial treatment. The trial is still ongoing (I am one of the 500 or so patients on the trial). However it is only looking at ANCA associated vasculitis (ie MPA, GPA and Churg Strauss)

[Hidden in reply to Nap1]

No, not routinely. I know that Bronte M on here gets Rituximab for TAK though.

There is a consultation out at the moment for Tocilizumab and large vessel Vasculitis ( TAK and GCA ). VUK were asked to make a submission from the patients point of view.

[BronteM in reply to Hidden]

You are right, Keyes. I'm on rituximab because I turned out to be allergic to cyclophosphamide after the second infusion. And it has made a huge difference - I can lead a reasonable life, albeit with care and a lot of resting and recuperation. I know of two other people with TAK who have also been on RTX, though there seems to be a chance that its effectiveness wears off eventually. There are trials for other 'mabs' for those with large vessel Vasculitis.

The problem with saying that it's too expensive, is what happens if you don't get it? I would probably be disabled with a stroke or heart problems, both very expensive in comparison....dead is the cheaper option of course. But in fact my cardiologist has signed me off (for the time being?) my blood pressure is far better, and I'm able to get some exercise. The effect is even better for all the people who get back to work, to looking after their families and being back in society.

[Hidden in reply to BronteM]

Thanks BronteM, I think you make some great points. Quality of life and how we can function day to day is as important as preventing organ failure.

[Nap1 in reply to PMRpro]

Thanks PMRpro we touched on this before. I take blood tomorrow and I am hoping the ESR is not elevated again. If you recall I started 40 in July. And reduced too quickly to get up to Mayo and had to go back to 40. Now 30/35 and last day of herpes pill tomorrow. Didn't reduce even though Rheumy said to. The forum and you, of course, know more than he does and I too know more than he does now. Lets see what tomorrow brings my way. Maybe I'll get lucky. My skin cannot take these doses and I am not healing.Thank you again for your input.

[amms43]

I needed to do a year of Cyclophosphamide first. I think this is all cost related. Cyclophosphamide does work well for some people and is far cheaper. It was not successful for me. I had 10 infusions but it was not really successful and I relapsed within the first 6 months after the cycle. I don't think Rituximab is any cheaper now. It has worked really well for me. I hope you get the Rituximab soon.

[SandieB]

Hi i had to get funded for my Retuximab and it is to see if it is going to be beneficial for the illness you are being treated for as it is not good for every illness. Hopefully you will not be waiting too long and yes it is very expensive treatment.

Good Luck

Sandie

[Hidden]

I only waited 3 weeks to get Infliximab ( a similarly expensive biologic ). Much depends on what part of the part of the country you are in and whether you meet the criteria. In some places there is then a wait to get a " slot " on the ward that does it.

Fortunately the District General Hospital that I attend has a fantastic Day medicine unit which does all these infusions and other things with no waiting list. I count myself very lucky in that respect.

[Lamama]

It is not on the PBS in Australia so very expensive and is only being given to those who have had at least 250mg cyclosphosphamide before

[pwc51]

For me, once it was determined that Cyclophosphamide was not working an application was made to NICE and I believe it was 2 to 3 weeks before approval was given. It worked like a dream!

[Compo34]

No, I saw my consultant on Feb 5th who suggested I try Rituximab but said it may take 4 to 5 weeks for my local health committee to agree to pay for it. I didn't realise it was so expensive and didn't ask him the cost. That evening, I told my doctor daughter about this and she said it cost £5k each session - there are 2 sessions a week apart. I cried on hearing this and told her that the NHS shouldn't spend so much on someone as old as I was but to spend it on the young. My daughter said that I deserved it as much as anyone else. 11 days later I had a phone call to tell me that I was to begin the treatment on February 15th. I was so lucky!

[Kazam]

Hi Asilana,

I am in Canada.I have Hep C and Cryoglobulemia Vasculitis,along with Mononeuritis Multiplex, Peripheal Neuropathy, Cirrhosis, Osteoporosis and now Diabetes.I was misdiagnosed for 14 yrs..long story!!.

2 years ago I had a terrible flare up.I needed a walker and home care,with a physiotherapist coming to my home once a week. I lost the use of my left hand and both feet My Rheumatologist at the Vasculitis Clinic at Mount Sinai Hospital in Toronto had to apply for Rituximab for me because it wasn't approved for Vasculitis. It was $10,000 dollars an infusion,and I was given three. It helped me tremendously.I was told it can stay working for up to 18 months.I can walk again with the use of a cane .

I've been approved for another infusion if needed. I've just been approved and started the" Harvoni" Treatment for the Hep C ($30.000.dollars a month!)which they assume is the cause of my Vasculitis.( I don't agree tho as my dogs have Vasculitis as well and they don't have Hep C !! )

These drugs save lives if only people could afford them..$1000.00 a pill is crazy..I think Rituximab is a bit less now here,my Hematologist said he thinks it's $8000. dollars an infusion now instead of 10 so thats promising

Rituximab really really helped me. I hope you get it soon!!

[Hidden in reply to Kazam]

Hi Kazam,

There are over 20 different variants of Vasculitis. Cryoglobulemic Vadculitis is very strongly associated with Heb B and C, from memory I think it's over 90% of cases. It is a very rare form of Vasculitis, I am pleased to hear that the Rituximab is working.

[asilanna]

Thanks guys but how long did u wait?I have PAN and having very bad flare at the mo! Nothing else has worked iv tried everything apart from Cyclophosphamide which I don't want to take because it makes you infertile!

[Hidden in reply to asilanna]

Asilanna,

As far as I am aware Rituximab isn't licenced to treat PAN but that doesn't mean that it won't work or hasn't been used.

Where do you go for your treatment? Are your Consultants experienced in treating Vascilitis as PAN is very rare.

You can phone or e mail the VUK helpline and either myself or John will try to help if we can.

[Hidden in reply to Hidden]

Helpline details

vasculitis.org.uk/helpline