The quest for Rituximab

[Dramaticharlie]

Hello all, I haven’t written on here in a while as I have been pretty stable on methotrexate for around 8 or 9 years, however lots of changes recently and now I feel I am not getting the treatment I deserve. Any advice or previous similar experience would be very welcomed! So my amazing consultant retired in December 2020 and just before he did I began to flare from about September 2020, he gave me a course of steroids and discussed with me about possibly swapping from methotrexate to rituximab and said he would pass this info onto my new doc. I also discussed the fact that I am thinking of starting a family and he said he would definitely put me on rituximab for this reason. I didn’t get an appointment with new doc until June this year, for Covid reasons, in the meantime I continued to flare and told my gp/consultant secretary/rheumatology helpline etc but no action was taken. At appoint in June the new doc said I don’t tick enough boxes for rituximab and this shouldn’t have been promised to me. I have been put on Azathioprine instead which I’m unsure of because apparently you can get pregnant whilst on it but you shouldn’t be on it long term… does that mean it’s actually still quite harmful? It also says I can’t breast feed on it which I’m unhappy about. So far it doesn’t seem to be working and I am flaring more than ever, my joints are horrendous and I have been unable to drive half the time so I’m missing a lot of work. I start my teacher training course in September and I am so worried I won’t be able to drive. I had forgotten how painful it can be these last few weeks have been so tough, I haven’t felt pain this bad since before I was diagnosed in 2010 so it’s been a bit of a shock. I also feel really sick on the Azathioprine and just wish I could have got the rituximab. My new doc doesn’t return my phone calls so I guess I have to wait until next appointment. Just wondered if anyone else had struggle to get rituximab or has been able to fight for it when they’ve been told no? I get that it’s expensive, but surely we all deserve it? Very grateful for the NHS but sometimes wish it was better…

[Mooka]

Hi I’m sorry to hear you are struggling at the moment. Many years ago I moved my care to addenbrookes from my local hospital. I was surprised to be offered rituximab immediately. I have since been to a support group meeting where my old consultant was saying their protocol was to offer a one of dose of rituximab not the full course. Since then rituximab has been approved for use and perhaps the cost has come down but you may find that is the reason with our NHS being so cash strapped at the moment. Good luck I hope you find something that helps you soon.

[Dramaticharlie in reply to Mooka]

Thanks so much for your reply! How did you move your care to addenbrookes?

[Mooka in reply to Dramaticharlie]

I asked at my hospital and they said I had to go to GP for referral. She was happy to refer me. Whilst rituximab worked well for for me it did wipe out my immune system and I had loads of chest infections. I am in the 5% of people who have low immunoglobulin levels because of rituximab and now have to inject IGg weekly. A lot of people who have had rituximab have also had a poor response to the Covid vaccines. These are things you should consider.

[alybill in reply to Mooka]

You are allowed and second opinion and Addenbrooks is a centre of excellence and known throughout the world. I have been attending there for about 12 years, they really good. People travel from near and far, some even stay overnight in a Travel Lodge.

[Red-head44]

Hi thereI went on to Azathioprine after Cyclophosphamide for around 3.5 years and it worked well but yes I did feel sick a lot on it. I have no idea about trying for a family on it. I started a flare and was moved over to Rituximab - no hassle no mention of cost. After my first initial doze we went into lockdown so missed my next doze at 6 months but was fine. Got next doze at 9 months. However it is lowering my white blood count so it was diffucult to get the next doze as my count was 4.6 and they like it over 6 before giving so gave me half a doze. I do wonder where I’m going with Rituximab as if my white blood count is too low I won’t get more so it’s not a magic answer either. But I do feel so much better since I got the half doze. Best I’ve felt since I got diagnosed early 2016.

[Dramaticharlie in reply to Red-head44]

Thanks so much for sharing your experience! I really appreciate it

[lesleyg]

I feel for you because losing a consultant that we have had a long relationship with is almost like losing a friend. Then there is the problem of building a rapport with the new consultant. Another emotional aspect is hanging our hopes on a new drug or treatment. Of course now Covid has come along and thrown an extra spanner in the works. I was holding out for Rituximab as the miracle cure and it didn’t actually work for me. For the past couple of years I have had relief from a biological called Sekucinumab although I seem to be getting used to it and need to add in Methotrexate and Leflunomide (remembering we are all different). I’m in Australia and we have a different health system to the UK, however is there any chance of shifting to a different consultant? Hang in there, Lesley

[Dramaticharlie in reply to lesleyg]

Thank you for your reply! Yes I was very sad to lose my consultant, he was the one that diagnosed me and is known as a hero in my family, we were very sad to see him go. The new consultant doesn’t have the same awareness. Often my bloods don’t reflect my symptoms, but my previous consultant would take action based on my symptoms, if I said I was flaring he just believed me. The new consultant seems to think if it’s not in the blood results then it’s not true. I know rituximab doesn’t work for everyone, but you’re right maybe I need to ask for a second opinion. Thanks!

[RP99]

HiSorry you are having a tough time, even worse that you have lost your consultant too. I'm dreading the day mine retires - hopefully it won't be for a long while 😊

Rituximab was on my list of options too but my consultant decided to try other options instead as there are higher risks on Rituximab. I'm v lucky that my disease is classed as 'limited' so they take a balanced view vs risk/side effects. I'm glad I'm not on it with it's potential impact on Covid vaccines.

I'm on half dose of methotrexate and half dose of azathioprine and it seems to be working well. My body can't cope with a full dose of either one!

I hope you find a good balance for your care too.

Sending you best wishes