My IVIG Infusions were suspended as a result of COVID and the risk of attending hospital at the hight of the pandemic. I have just received my latest blood report to find that my IgG is at 2.3, well below the minimum of 5. So will be asking for my monthly infusions to be reinstated.
Anyone in the UK had their IVIG suspended as a result of Covid and had it re-instated in the last few months?
Good morning Robert,
Yes my last infusion was in February and I restarted last Wednesday. I was concerned about my sinus problems that had re-emerged so I called my CNS who spoke to my Consultant and they agreed to restart while it was quiet.
The department was well organised with a oneway system and far fewer chairs.
Good luck.
Colette
Colette. Thank you for the reply. I will have to see if I have a battle in getting the infusions restarted. I just noticed that the UKCLL Forum have deleted its previous advice on IVIG infusions being suspended in place of antibiotics. So that should work for me.
Hi Robert
I am sorry you have missed your IVIG. My experience in Winchester has been that treatments of this kind have been moved, along with all the staff, to a small private hospital close to but away from the main hospital. There is a monitoring station prior to entry and masks are worn at all times. Social distancing between patients and hygiene are such that I feel very safe. Blood tests are also taken, often during cannulation. I much appreciate the efforts the Hampshire Hospitals Trust has made to ensure no treatment has been missed. I know this is little help to those who may have missed treatment but maybe you can put some pressure on your care team if you are really concerned. By the way, my partner is awaiting heart surgery delayed because of Covid which is quite worrying, so it’s not all good. Stay safe. Martin
Martin. Well that is going the extra mile. Not far away in Bournemouth.
Hi Robert, my infusions have not been affected apart from you now need a Covid test couple of days before, and numbers of chairs in piu have been reduced, masks been mandatory for three months now, and temp screening and questionnaire before entry. They are working really hard for all of us at different stages of various cancers. Hope you get yours reinstated soon good luck
I didn't think about the Covid test prior to an infusion. I wonder if my hospital is doing that?
Mine isn’t. I must say I have only heard of a covid test for anyone having an operation.
Colette
The piu I attend is in a hospital where covid patients are treated all be it separate.
I can’t foresee you having any difficulties in having your IVIG restored with an IgG level so low Robert. My Unit has suspended IVIG and I had my last one in March.
They've also told me the criteria has now been changed to an IgG of under 4 so at 4.4, mine are now being withdrawn. I’m going to keep a close eye on my infection levels and fight to have them restored if I end up as I was prior to starting them monthly 18 months ago.
Best wishes,
Newdawn
I know this isn’t the most popular suggestion but you may have to try azithromycin for a while to also jump thru that hoop. It seems very unjust for them to take this from you However and I would ask to appeal the panel decision as the general rule is that if someone is taking something they shouldn’t have it stopped if the funding criteria change. Your treatment was paused not stopped and it is wrong of them to do this to you. A complaint letter / appeal is definitely in order I suspect you might already be drafting one. It’s even the kind of thing you could potentially challenge medico-legally since you can demonstrate that this treatment was working for you and not harming you. And at a time like this they shouldn’t be further restricting this life saving product but recruiting more doners and making it more available now that we suspect it —just might—- (no guarentees but evidence of some antibodies in it) protect against COVID.
This feels like the beginning of a campaign. Can’t we pull together and get one of the charities making some noise about this?
I know we’ve had this discussion before Adrian and I appreciate your concern. Naturally I’ve already considered the issues you’ve described and have discussed them with my Consultant. He’s very observant of official criteria it seems and is insistent about the new eligibility criteria he’s been given to implement. He says this is due to extreme shortage (and yes I can accept that over Covid) plus cost versus efficacy when long term antibiotics can be used.
I absolutely know that the Covid pause has caused this cessation in my case. It would have continued otherwise. Ironically I asked him if we could reduce it to every 2 months prior to the Covid outbreak and he said no. I’ve found that a number of agencies are using this excuse to pull or reduce services (including a battle I’m having over social care for my son). Expediency is being used over assessed need (or at least they are trying but I take no prisoners where my son is concerned! 🤨).
From the criteria the Consultant sent which was from last year, I can’t see the change in criteria he mentions.
I’m reluctant to add yet more medication like azithromycin to destroy my gut biome especially as I’m already on Co-trimoxazole prophylactically. He is using the argument that it is this that has probably stopped the severe respiratory infections I was getting prior to starting IVIG (the Septrin and IVIG started together). However, prior to starting IVIG I’d had a highly resistant and recurring chest infection for over 3 months which didn’t resolve with antibiotics. It nearly prevented me starting the Trial.
I honestly think every case has to be judged on its clinical merits and IVIG is in short supply internationally and is monstrously expensive. It can’t be a collective campaign for universal availability. I only want it if I absolutely can’t function well without it and at the moment I’m testing that out.
My Unit has essentially shut down at the moment so these issues are on the back burner. The hospital is in a town that is heading for a possible further lockdown.
Newdawn
Your call, but you could definitely fight this in your specific situation since NHS decisions are not meant to be retrospectively applied to stop treatments that work for people who are already on them. And not every unit has simply stopped all IVIG, some are even starting new people on it at the moment. I just offer you a strategy you could use if you wanted to.
If you do accept without a challenge that you have now moved into the group needing to be re-assessed you risk being told to wait till you have demonstrated azithromycin doesn't work for you. And you risk your other symptoms worsening it seems.
There will be a local panel and if you had your consultant more on side and willing to push you could ask them to present you to that panel as an exceptional case (arguing that simply restarting your treatment after a COVID pause shouldn't even have to go to panel). Even the guidance you shared states not every patient has to meet every specific criteria. Some people certainly see an improvement in inflammatory symptoms and IVIG can even be used in certain severe cases of inflammation without hypogamoglobulinaemia.
Another option might be to get referred to an immunologist since it is them who seem to run the panels and will be more au fait with the pros and cons and the real situation about the shortage which there is a genuine problem with but not perhaps quite as severe as some are being left with the impression. Your doctor will be a bit removed from the broader picture I assume.
I am not advocating for removing all restrictions on IVIG but it does seem that the previous levels of around 5 are when regular infections and allergy issues can trouble for some. It seems to me that this should be more a clinical judgement issue and I believe the UK should be working urgently towards re-starting our own supply of this, which can conveniently be made including some of the excess convalescent plasma donations once enough has been set aside for those who need that in an acute situation.
Personally I have been on azithromycin for a very long time now and I am not sure if it really is helping me or not. It may be preventing other infections I would have otherwise have had, and it may be helping me "catch" throat or chest infections before they become pneumonia. But certainly even many months ago my immunologist agreed I have already met that criteria, yet it did not seem wise to stop something that might be helping even if in some small way. For those who are having regular infections it is definitely something worth trying although I am aware that some people will have issues with it. I haven't so far. People who have their spleen removed are given antibiotics daily for life.
I am fast forwarding in my mind to a time when there is a covid vaccine, but many of us might not respond to that vaccine and the only way for us to get immunity might be via IVIG. So yes, I think we should be trying to push a bit on this issue. I will be seeing a top Immunologist tomorrow at UCLH about my own situation to see what solutions can be found to try and help me, and also making this general point. Months ago when my situation was a lot better than it is now she already mentioned possibly putting forward a special case so it is something that can be done. Strict rules do not always match specific situations correctly.
IVIG can literally be life saving and I hate the thought of you suffering when normal NHS rules would say that you do not stop something that is working for a patient just because of a subsequent funding criteria change.
Newdawn. That's disappointing. So in a few months time you might be below the 4 limit. I am also hoping that once the infusions are restored my aches and pains will decline.
It may be that my IgG may maintain just above 4 Robert and if I can avoid them, I wouldn’t particularly opt for monthly IVIG because it was hard on my difficult to cannulate veins. However, since ceasing them my muscular skeletal issues have been extreme resulting in me having to cease Ibrutinib. However there’s no recognition of the positive impact of IVIG on inflammatory processes so it’s not factored in. My IgA & IgM are exceptionally low too.
It’s something I’m monitoring carefully and will fight for if necessary.
Newdawn
I’m in the USA and had to have a Covid test since I was scheduled for IVIG. Unfortunately I tested positive so I had to wait another 14 days to be retested. I’m now negative and will have my IVIG tomorrow. I was at 278 when I was scheduled. I may be under 200 now. I’m grateful I’m getting it tomorrow.
You could always request a change from IVIG to SCIG. That you would do at home (once trained) and on a weekly rather than monthly basis. I know there is a shortage of pumps at the moment but there are ways around that. My NHS Trust has been positively trying to move patients onto SCIG and so avoid the need for monthly trips to hospital to be cannulated and have an IV administration set up.
I know that in the effort to move patients from IV to SC suppliers such as Calea ran out of syringe driving pumps and the supply of 20% IG took a hammering so your hospital may have been told by their suppliers "don't transfer any more patients to SC because we can't supply them for you". Some places use spring-powered syringe drivers rather than battery-powered ones where you can program in different infusion speeds - mine is set to 70ml/hr over 4 injection sites through a 4-way manifold - while the spring type just pump the stuff through at random speeds dictated by Hooke's law and the resistance through the pipework. At the end of an infusion, my abdomen looks like a farrowing sow but the "dugs" go down after 24 hours or so. While I am infusing, I just get on with normal daily activities - just no heavy lifting or doing things which could abrade against the infusion needles or catch in the tubing. Utmost care using the bench vice not to tangle the tubing on the handle for example!
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