This seems to be the most comprehensive information. Might be of use to some people who are having to make the temporary change to IV. (This is anticipated to last 20 weeks.)
lpclinicalhomecare.co.uk/or...
Has anyone on here ever changed from IV Abatacept to sub-cut to find it wasn’t as effective? Concerned about the eventual change back.
That sounds a bit complicated as patients have to be in to take delivery then in to get the infusion. A bit inconvenient but at least only once a month. But I'm puzzled are they infusing a higher dose as I recall I did weekly injections. Will it last the month and also self certified nurses what does that mean ? But I don't suppose it's the first biologic or will be the last one to be in short supply and at least they say enough to supply all patients. x
Apparently you’ve to be in to receive the powder/medication once a month and I presume the sterile water pouch comes with it for the nurse to mix/create the infusion with that on the day of the infusion visit. I’m hoping that’s not another separate delivery/thing to chase. It has to be reasonably easy for the powder vial to be inserted into the water pouch so it doesn’t spill. Not entirely sure if you’ve to store the sterile water bag in your fridge and get it out before the nurse arrives. I’ve no idea re if the efficacy will last a month but my concern is if the click pens don’t work as well once you swap back over to them after 6 months. Yes it is a higher dose by infusion. I haven’t heard anything since 11 June. No idea re “self certified nurses terminology”. 🤷♀️ Quite a few no ideas! x
It’s appalling no matter which way you look at it. I hope you can navigate this mess. And mess it appears. Xx
Thank you for your support. 🩷 I know it doesn’t help wondering what will happen and I’m a very practical person but I feel sick thinking of it all. I do think I should should have had more than one call from pharmacy two weeks ago (and I asked for a call back) saying we will be reviewing you. As from this week Lloyds won’t send pens or syringes to patients unless the urgent cohort. No letter of explanation from them or rheumatology or hospital pharmacy or Lloyds.
I’m definitely no control freak but would like some idea of what’s going to happen and when! It is rare I feel down but have to say I feel very much that way. Hope you are steady and enjoying the warmer weather. 🩷xx
I had a phone call a few weeks ago from rheumatology to explain about the injection shortage. However, I knew about the shortage from other FB forums at least 2 months ago. I'm happy I don't need to go without the med as it seems to be working for me. For the first time in 4 years, I've had some pain free days. I had a call today to confirm my infusion. That said I had a call from rheumatology last week to confirm another infusion - my guess is they aren’t joint up on how they are going to sort the abatacept shortage (of auto inject). I prefer to have my infusion at home rather than all the hassle that comes with going into the hospital.
I’d prefer just to be contacted. I was told two years ago when I first started Abatacept that there was a problem back then re a shortage and only four pens could ever be delivered monthly for the forseeable future.
Anyhow I hope all goes well for you. I feel for my situation, they’ll have given the most part of people the hospital infusion slots by now if they are doing them and it’s a small hospital with not much capacity, so if anyone does phone me to organise an infusion I feel it would be re them coming to me. A Lloyds or agency nurse. Tomorrow is 15 days since the main hospital pharmacist called me. I think it’s reasonable to be able to phone her and ask what’s happening, please?
Best wishes to all those who are experiencing this.
Hi thanks for posting as I don’t have this paperwork. I was sent a text with a letter which said see attachment but there was no attachment so I’m guessing this is it. I had a call from Lloyd regarding swapping last Monday but after going through all the usual questions etc we got cut off. I waited for a call back but never received one. I waited a week then called Lloyds on Monday this week. The parson I spoke to said there was no record of that call & was I sure it was Lloyds who had called me! She looked at my record then said they couldn’t arrange anything as they don’t have a current prescription from the hospital. I’m a bit worried about a bigger dose as I developed discoid Excema last year all over my body( not really arms or legs) & did consider swapping me onto a different Biologic but it has settled without needing to stop Abatacept I’m worried a larger dose can reactivate it again. I’m just hoping they call back soon. It’s this uncertainty that’s worrying me. I’ve always had good service from Lloyds but currently it seems to be left hand right hand🤷🏻♀️
Thanks for the update NK, I share your concerns. I had a call from Lloyds a week or so ago asking me how many pens I had left. I then had a call from an unknown mobile number (which I would usually ignore) yesterday from Lloyds booking me in for a home infusion on the 22nd July. No-one has mentioned a delivery and then a nurse so I assumed they came together?! Who knows, we'll find out when it all happens. I had a good response to Abatacept for 6 months up until March this year but then I had pneumonia and was off it for 7 weeks. It doesn't seem to be working as well after that :-(.
Hi Gilly, sorry for my delay in replying. You might find that the infusion helps you more in terms of building back the Abatacept faster. I hope so and that you get your call from the nurse to advise how it will work for you. I read re the med arriving in advance from Lloyds on their website Abatacept page/FAQs but even those could have changed and it might not be the same for all.
I think the nurse would have to have patients’ meds delivered to her and keep them somewhere if she brought them with her. Not sure she’d be wanting to do that or allowed to. Why it’s better to deliver them to the patient.
I got an email from the rheumy sec late this afternoon saying Lloyds have confirmed to rheumatology I will be getting syringes delivered whilst the shortage of pens is on. Hope all goes very well for you. 🙏
I’m yet to start abatacept but a nurse is coming to oversee my 1st injection. I have 4 pens atm. I was told by Lloyds pharmacy that they will be doing infusions or ‘pens’ on a patient by patient basis. As my immune system was knocked out by retuximab infusions there’s no way I will be having infusions after my supplies have been used up. I’m yet to get a call from the clinical team regarding my suitability for infusions. So it’s a bit of a lottery. The reason I’m having injections is that as they’re done once a week they will not stay in my system for too long where a higher dose of infusions would last a month and if it proves to be unsuitable I’d be in trouble with infusions. If you believe that there’s a clinical reason that you should stick with injections then fight your corner. Good luck I know it’s not going to be easy.
Thank you, and politely fighting my corner via my recent emails to the rheumy earlier this month seems to have worked. I’ll be receiving Abatacept syringes for my next delivery. I do remember your most unfortunate experiences re Rtx and hypogamma at its worst.🤨🥲 I know you’ll recall my immune has similarly been very compromised and I’ve still got hypogamma and permanently low igM, but not to the extent of the igG going as low as yours, but even though mine was around 5, I got dozens of infections at that level which needed 4 years of Doxy abx every other month. Why I was moved to Abatacept. My immune is in slow recovery with igG moving up slowly and my B cells are just below threshold, so I’ve a way to go still but improving slowly .. steadily.
My email to my rheumy and chat to the pharmacist on 11 June highlighted this and I said I felt a monthly infusion on my immune wasn’t probably a good idea for me. Especially altering the way I receive the biologic was identified as being the most suitable for my bronchitis and on a more gentle weekly basis too. Even if it’s targeting T cells and not Bs it’s a bigger dose with the infusion for the system which is still struggling post-Rtx. I know you identify.
The way I see it, I doubt it that Lloyds would have started you on the sub cut pens if they can’t sustain those. Feel they’d have said you need to be on infusions. I hope you’ll be able to stand your corner too re staying with the sub cut pens. Good luck too.
Thanks I know we have some of the same issues and no doubt will have a similar fight. Pleased your immune system has made a little improvement. I know mine is still well below what it should be but been an age since I was last tested. Good to know abatacept has been used without a further detriment to a compromised immune system, hoping it helps me too I will find out next week no doubt.
Thank you. Abatacept is supposed to be gentle on the lungs and gives less infections than other biologics, and it’s not knocking out all your T cells or interfering with the Bs so that you can’t convert them to Ig’s. I believe that’s why Abatacept is chosen after patients have had issues with Rtx. My usual rheumy blood tests include Ig’s to see where they are. Can you request them? It’s not a complicated or expensive test to do, apparently.
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