Abatacept

[debjw]

Hi I was wondering if anyone else has been told that they have got to have infusions of these at home because of stock problems? If so, have you started them yet? Thank you

[Neonkittie17]

Hi there, I’m awaiting a reply from my rheumy team so can’t answer personally with anything as yet. Nothing so far since ten since ten days ago. I’ll not repeat myself here about it, but there was a lot of useful info on a previous post last week. There are also 2 or 3 other people posting re this issue from earlier this morning too. Have a look on the post from Gillybob19 from 9 days ago as that’s where the most info is so far.

[debjw in reply to Neonkittie17]

Thank you for letting me know this, I’ll take a look.

[Neonkittie17 in reply to debjw]

Hope it helps .

[MerielPB in reply to Neonkittie17]

I have been told I will have to attend hospital for infusions, not at home, but have not heard anything since.

[Neonkittie17 in reply to MerielPB]

You’ve heard more than I have as I’ve heard nothing since I enquired ten days ago. 🤷‍♀️ Hope yours get sorted swiftly.

[medway-lady]

That sounds a bit worrying. What about hygiene is it a nurse or trained person, what if something goes wrong etc. I don’t use it but I hope that Benapali doesn’t go in short supply as I’m not sure that I’d agree to this.

[Neonkittie17 in reply to medway-lady]

Lloyds Clinical Homecare have trained nurses who come to patients to oversee their first time on a new med (usually sub cut injections but they do infusions too) etc., and the one who came to me two years ago said you obviously know what you’re doing, but could be your previous allergies to oral meds and other substances! Abatacept is a short infusion of only 30 mins but it’s the prep etc., too. I’m still waiting to hear and if nothing by tomorrow I’m chasing my hospital and meds company again . Unfair to leave some patients dangling. As if we don’t have enough stress. It’s apparently temporary but with the back to normal end of August, I’m thinking … add a couple more months on as it could be difficult getting people organised for the deliveries again re the clickpens. 🤷‍♀️ 😐 xx

[medway-lady in reply to Neonkittie17]

YES, It's just so unfair and although it didn't suit me for those that it does, this is just unacceptable. It's not as if it can be obtained privately so no alternative but any invasive procedure has risk. My friend died the other day from Sespis and had been in hospital for Cancer treatment which was going well, then contracted Sepsis from a PIK line and gone in a couple of days. It is such a worry and astonishing and I understand everything has risk but an infusion at home ?? Trouble after all the trouble I had with Sciensis, I would not believe some of things they'd say. We have a diabetic cat, and are allowed to give her the Catsulin twice day, no problem without training but catteries have to have a registered veterinary nurse to do it. Where's the logic??? xx

[Neonkittie17 in reply to medway-lady]

Doesn’t seem any logic re the cat insulin at home! I’m so sorry for the loss of your friend. That should not have happened. 🥲 So sudden,

My med company for Abatacept is Lloyds Clinical Homecare and the nurse who came go do my first click pen also went to people’s homes to do infusions. She’s been doing it 15 years she said. Sciensus were often frustrating 🙄 when they were H@H but they’ve been alright with me since 2020 when a delivery driver was was insulting/obnoxious. (They deliver a different med for me.) They have since gone out of their way to be helpful. (I’m always suspicious though!)

I shall be chasing up the Abatacept issue as I haven’t heard anything else since 10 days ago when I spoke to the hospital pharmacist. I can see me being forgotten. (I’ve been there before. None of my current rheumy’s doing btw.) xx

[medway-lady in reply to Neonkittie17]

I just meant that the way things are these days, it seems cats as pets are better legislated for. The rules are firm but with medications for people it wouldn’t surprise me if with a weeks training someone could be qualified to do an infusion. We seem to be in such chaotic times. How can medications be in short supply? It’s beyond me. Yes you must chase up but really it’s just more stress. My friend is a sad loss and I’ll miss her a lot, such a shame as she was responding to chemo and radiotherapy well. Xx

[PSAWarrior28 in reply to medway-lady]

The medication isn't in short supply. The problem is the actual pens used for dispensing the meds. Personally I'd rather have my infusion at home but I've been asked to go to the hospital which is fine with me. Hopefully the issue with clickject pens is resolved sooner rather than later

[medway-lady in reply to PSAWarrior28]

Then according to the internet people can have syringes and it states same medication so why do infusions. I had this medication in the syringe it was much easier than the pen anyway. I’m not on it anymore but thought the syringes were so over engineered NASA could have designed them. It’s just another stress for people on it and surely avoidable.

[Neonkittie17 in reply to PSAWarrior28]

Yet there is only a provision for 15% of the people (mostly juveniles, understandably) in the UK who need the syringes, both hospital pharmacy and the meds delivery company have told me 10 days ago. Presume not enough syringes currently either. There’s been a clickpen shortage since August 2022 since I started Abatacept, as I’ve always been on a monthly delivery of 4 pens , as not enough supply, so nothing seems to have been remedied there August 22-now. 🤷‍♀️

[medway-lady in reply to Neonkittie17]

This is really a disgrace and I'm afraid it is a political issue. I asked for syringes as find them easier than the pens as its my right hand that is mostly affected and I could not put enough pressure on the Benapali pen so since then asked for syringes. Much easier for me and I think that's a yarn you've been spun as Medway Rheumatology told Sciensis supply as a syringe and they did. I was told that people don't like to see needle so prefer pens. But much easier and painless as can deliver at my speed so slower.

[Neonkittie17 in reply to medway-lady]

Lloyds staff tell you no end of differing stories .. on most things but they have always told me of the clickpen shortage since August 22 and the hospital pharmacy said the same. 🤷‍♀️I can’t understand either why I can’t use Sciensus for Abatacept when I use them for Mtx pens. Would seem to be sensible to get both meds from the same delivery company! I’m very used to doing Mtx syringes over many years in the past. Yes, a slow insertion of a syringe is better for many people. I’m not needle phobic either. Do prefer the Abatacept click pen though. There were enough Abatacept syringes apparently until the click pen shortage. Yes fed up, to the gills here. xx

[PSAWarrior28 in reply to Neonkittie17]

I think that's the NHS spreading the risk by using 2 different companies. I also suspect Lloyds were probably cheaper. Sciensus is still struggling to deliver a decent service. I've had not problems with Lloyds.

[Neonkittie17 in reply to PSAWarrior28]

Sciensus been fine re Mtx pen delivery. They leave me alone for almost 3 months then send a reminder and text you and ask to reply within 2 days. If you don’t they text you a delivery date which can be changed.

[PSAWarrior28 in reply to Neonkittie17]

They do now. I was on their customer experience panel for a few years after i wrote to their CEO and customer services director about 3 consecutive failed deliveries. Good to know it's working 🙂

[Neonkittie17 in reply to PSAWarrior28]

They have improved enormously for me but I feel it might have something to do with the complaint I made re a horrendously rude delivery guy in May 2020. I’ve never had a failed delivery from H@H/Sciensus but know of several people on here who have. . 🤨There was a lady who said a guy wandered up her drive the next day after delivery was expected, with her med packet under his arm and said he’d tried to deliver it the night before but she was out and he was late on his round so he’d put it in his fridge overnight at home!! Apparently she told him take it away as didn’t know it had been stored at the correct temp. She said she had visions of her med/pens sitting on top of his bacon and sausages! 😝

[Neonkittie17 in reply to medway-lady]

I’m sad re your friend. She should still be here. 🩷

Well yes, the cats have got good care! (Perhaps we’ll return in a next life as cats! 😻😻)

It is an Abatacept click pen shortage itself I was told by Lloyds and PSAWarrior has also said too, but as well as this there is only a provision for 15% of those who need the syringes and juvenile patients are priority for those. What foxes me is I was told this in August 22 re Abatacept pen shortage yet here we are almost 2 years later. 🤷‍♀️ Does it take almost 2 years to build a stockpile of the pen cases?

The Lloyds nurses and the biologic specialist/infusion centre staff I’ve had are all senior in giving infusions. Yes, stressful if you haven’t been contacted with a new temporary plan. I’ve had a nagging headache for 10 days since all this started. I very rarely get headache. I have sent a brief email at 4.30pm today to rheumatology helpline basically saying I’ve heard nothing for ten days. Please advise as soon as you can.

I think I’ll be spending a lot of next week chasing up. (Probably a wild goose chase.) It should not be like this. xx

[medway-lady in reply to Neonkittie17]

I'm definitely coming back as a cat when the blighter was spayed she got ill and was taken straight to theatre for her operation. So if I need obs and gyne one day I'm going to the vet. Who is young and very nice looking too. lol The perisher went to the dentist too a few months ago £700 and its rescue cat. That's more than our private dentist charges so could go to the vets for teeth too. lol xxx I hope your headache is better and go for them next week.

[Neonkittie17 in reply to medway-lady]

I hear you! Ouch. I had one senior citizen that needed a lot of dental work and also one that needed dialysis. Ahh what we do for cats! You made me laugh re going to the vets for your teeth! 😝🤣 Thank you, I’m going to go smell my roses and do a bit of gentle pruning and hope that clears my head! Can’t do anything over the weekend so I’ll distract myself and resume my attempts to sort out Abatacept on Monday. I think my rheumy thinks it’s being sorted. It’s not. xx

[medway-lady in reply to Neonkittie17]

I’ve just had an Amelancia delivered. We’ve taken out a big old Beech tree and it goes in tomorrow to fill the gap. I love roses we’ve got Eastcourt Roses near us and their rose plantation on the main road, it’s a field of vast colour and the smell wafts across. Enjoy your weekend. X

[Neonkittie17 in reply to medway-lady]

Sounds a lovely rose place.😍 I’d love to visit David Austen. That is a lovely snowy shrub with coppery leaves. I hope it brings you much pleasure. Enjoy your weekend. We’ve a lot of roses, I admit it’s a passion. I may get some climbing roses from a National Trust venue, if we get there. One major garden centre near us sells DA too. X