Hi all, hope everyone is staying safe and well? Just wondering if anyone has had any rituximab treatment whilst all the lockdown has been in place. I’m due for my next infusion end of May and am wondering if it will go ahead. Guess it’s a toss up between the risks of a flare or catching Covid. Neither option appeals much! Just wondering if anyone else is in the same boat.
Stay well x
I had my 2nd infusion on 31st of March, came home unscathed, you might grt a letter or phone call either to tell you to go or not, but as covid appears to be on the decline there probably expect you to go, gloves and a mask would help, be nice to know the outcome as I have to go to addenbrooke's mid July and again in September for my 3fd rituximab infusion, 👍
Ok, thanks for your reply. Am shielding anyway so my preference would be to have the treatment. My EGFR is teetering late teens so worried that another flare would not be great Kidney wise. Have a consultant appt next week and they’ve been amazing so will trust they’ll know the best course of action. Stay safe. X
Hi
I was due my next round at the start of July, I spoke to my rheumatologist recently and he said he wasn't keen for me to have it then, I had my last lot in January and he said he would rather leave it longer in the circumstances. At the moment though it doesn't look like a lot will change and so I'm not sure how long it will be postponed for ?
I know at the hospital where I have it they have moved the infusion unit to a separate building so alleviated the need to go through the main hospital so good to know they are taking extra precautions.
Jenny
Hmm. Mixed answers. Hope you’re well Jenny.
I am thanks Lisa, hope you are too. I know it's a tricky one, I think in a way I'd rather have my infusions and before the Autumn /Winter, since being on rituximab I've been able to reduce my steroids so much and don't want to go back up dose wise as that would increase my susceptibility anyway. Will be interesting to see what advice you get.
Call your specialist nurse to check.
My rituximab infusion is due on 22nd of May. I called my nurse & she informed me that is will still go ahead. I attend Addenbrooks. Obviously I was concerned about attending hospital but my team must know best.
I had my two sessions at the royal free in March . My next appointment has been postponed until October . As I have to travel through London ,train and underground I thought that it was a good option. I hope l am still feeling ok until then , if not I’m not sure how to contact them , maybe write ? Good luck it’s interesting to hear how different hospitals deal with this .
My experience of the vasculitis consultants at the Royal Free is that they always want to know if you are unwell or your condition deteriorates (except for small things like a cold). So if this happens to you, or you have any other query about your October appointment, I suggest you contact your consultant direct. Contact details are available via royalfree.nhs.uk/services/s...
thank you l have always found then really helpful when l attend my appointments. I feel better knowing l can e mail directly if necessary, I could not find an e- mail address when l looked previously. I received phone call asking if l was well . At the time l was , but feeling rough the last few days , so l will give it a few weeks to see how thing go . Thanks again for your help .
Hi, my next infusion is due at end of June, but having spoke with Addenbrookes, it was agreed to delay my next infusion until things settle down a bit. This was based on me being quite stable at the moment. I would speak to your consultant/ specialist nurse to decide if your treatment can be delayed. Best wishes.
Thanks everyone. Am going to try and get through today. Stay safe! X
My Consultant appointment has been cancelled so I am assuming the planned Rituximab will also not take place which was due in June. I have tried to find out but to no avail. I understand the current difficulties but it would be nice for someone from the Hospital to communicate what is going on or not going on.....
I've just had my 2nd infusion at Derriford in Plymouth today. 1st one was 2 weeks ago.They still have other patients coming in for their infusions there...
I'm under Treliske too, and havnt had an appointment for my rutiximab yet .I'm on 6 monthly infusions for wageners..interesting how treatment differs..
Hi, mine is due but clinic is cancelled. Tx
Thanks for your replies everyone. Spoke to the team today and we are going ahead with it so that’s a relief. One less thing to worry about anyway! Stay safe all.
Having rituximab
Rituximab ....
