Good news for immunosuppressed: bbc.co.uk/news/health... - NRAS
Good news for immunosuppressed
That’s excellent news, thank you. Progress 🙏🏻
I hope too that the immunosuppressed get approval for monoclonal antibodies as a preventative measure when they are known not to mount an immune response to the vaccines due to their immunosuppressive medication.
Yes.I was going to make a private app with Rheumatologist re coming off Ritux but mayb I shouldnt jump too soon…..apart from few chest infections it gives me a good quality of life.
Will you re think now??
No I can’t. It isn’t possible now as my rheumy says it isn’t safe to let my igG and igM deplete any more. She doesn’t think having iv Ig alongside Rtx is a good idea for me. Rtx has affected my antibodies for flu and pneumonia vaccines too. Just works too well for me to deplete the Bs and very slow B cell repopulation. The vaccines’ inefficacy for me has proved my B cells don’t replenish for a long time in my case which is good for holding back RAs for ages and giving great mobility and I’ve always had zero inflammation, but to have abx every other month for bronchial episodes since early 2018? Not really. I could be trading immunity for mobility here on another med but I can’t carry on in this way. The chest episodes aren’t infections for me I’m told as I’ve been shielding so it proves low igG is making something very susceptible in my lungs to over produce mucous. If you read and my respiratory consultant confirmed so, low igG even just hovering near mild hypergamma can give some people the chronic bronchial issues. Sputum tests were negative too. I was completely fine for five years on Rtx but then my Ig results were glaring. Talks ongoing at the mo and more blood tests in depth with the immunologist/rheumy. I hope you are able to continue without any problems but that you can time your future Rtx with any vaccines. 💗
Very interesting read……I am similar to you….lots of chest episodes…sputum clear. Chest xray was clear too.Its all gobbledegook to me…I seem to remember u saying previously we need different blood tests done to see whats going on. Mayb I will keep private app with Rheumatology and get to the bottom of my immunity. My next Ritux is due November….might leave few more months after that too, like u did. Let me know what u change to. Take care
I have had functional antibodies tests done by my rheumy which proved my flu and pneumonia vaccines didn’t work last autumn. I have to repeat pneumonia. Flu you would anyhow annually. I did say to my nurse I was too close to Rtx at 8 and 10 weeks after my Rtx last year but was told to have them anyhow. I am awaiting blood forms arriving from the immunologist from the main city hospital and he is testing all sorts including T cells and ig subsets. I’ll let you know how those go. Won’t be till October I know. The immunologist also said he wants to do allergy blood testing. I asked for that 2 years ago and was told it wouldn’t be that by the doc. Glad this guy seems on my wavelength.
A lady on here told me a little while ago your igG should be 12 even if on Rtx. Mine was 12 when I started Rtx in April 2014 and has been going down since.
You could mention the chestiness and ask re your igG if you don’t get those results, but it doesn’t sound to me as though you are in need to change from Rtx, unless you are concerned if you feel like me your B cells repopulate slowly and could cause vaccines issues. Just talk to your rheumy on timings. Did you let the rheumy know you didn’t have antibodies on your Roche spike test? Let me know how you get on and I’ll do the same. Take care.
You certainly know all the ins and outs of your condition, i did tell the RA nurse on the helpline that my blood test showed no immunity to Covid but she didntt offer any help…she would have a word with Consultant. Havent heard anything since, hence asking for a private consult. Havent seen Consultant for 2 years..just a nurse.R u in the UK? Have never been told about an Immunologist.
Yes keep in touch and I will be with you. Take care
Yes I’m in the UK. I’ve had to investigate my immunity/get help with other consultants as the side effects have got to the stage where you can’t ignore them so I had to learn. I’m quite scientific so don’t mind research, etc. I think I’d write an email to your rheumy asking for a reply re the zero antibodies as they should advise re Rtx and vaccine timings. Will speak again soon when any news that may be helpful to you (and others.) Good luck.
No point writing to Consultant…even the RA nurses ignore. I am happy to pay for half an hour of his time to get some answers. Will b doing research on the info u gave me. Thank u so much
You’re welcome and sorry you can’t get them to respond. Imagine if they had this being done to them if they had RA or imagine if they found their vaccines hadn’t produced antibodies. Hmmm. My rheumy admin person has to respond as part of their job criteria so I do get a response but often not for a while. Glad my info has given you some pointers and I would also want the private consultation too to ask things, especially re your B cells and vaccine timing.
One question….will u come with me pls 🤗🤗Take care and keep in touch. Thanku
I would if I could! 💗 You’ll be fine, just take a few notes/pointers of what you want to ask so you don’t forget.
Will do 😉🤞
Hope so🤞🤞
Best is probably not to catch it in the first place??
Of course 😷
Great news. Hopefully we will get it as a preventative medicine before too long..
Would be really good if so and I’d certainly have them as a preventative measure, but I think this will take a bit more time to happen.
I’m not sure where I stand now with this information as about 2 months ago a study I was taking part in e mailed to say my blood test showed zero antibodies. I spoke to my GP who assured me it wasn’t that simple & of course I had some antibodies so after shielding for so long my hubby & I decided to go away for a few nights & I started with Covid symptoms on our 3rd day & was so ill we came home early & tested positive for Covid which I then kindly gave to my hubby. That was 6 weeks ago & we are both slowly recovering. I’m presuming I will now have antibodies so wonder now where I will stand in all this. I’m not asking my GP that’s for sure as still waiting for a call back from 5 weeks ago 😡
Oh poor u and hubby. Thank goodness you got thro it. Thats what they say, u will have antibodies. Unless u do another test u wont know. 🤷♀️🤷♀️
Thanks. Yes maybe I should do a test. 🤷🏻♀️ I have no idea. I am seeing Rheumatologist for an ultrasound in October ( referred in Dec 19) so maybe I can ask her. X
It does say ‘hospital patients’ so presumably it means those in hospital with covid who fit the other criteria??? That was my reading.
Good news
good news!
Good News
Good News!!!!!
Good news
