Abatacept infusions still no further forward!!

[Otto11]

Hi everyone you may remember my saga with Lloyds to try to arrange swapping to infusions. 17th June Lloyds rang to explain what would happen & the nurse coming to the house then we got cut off. She never rang back. I waited a week & called Lloyds & the lady I spoke to said there was no record of that call & that they couldn’t book me in as they didn’t have an up to date prescription. She said she would contact the hospital & would call me in a few days. Well surprise surprise! That didn’t happen so I waited another week then called my Rheumy advice line last Monday. The nurse called me back yesterday & informed me that the new prescription for infusions was sent to Lloyd’s on 19th June! Apparently they have to do a new prescription for everyone for infusions instead of injections which makes sense although that hadn’t occurred to me. My Rheumy nurse said she would e mail them but if I havnt heard by Monday next week then to call them myself.

I know they must be incredibly busy trying to sort this situation out but i have always had good good communication before & not had such disorganisation from Lloyds before.

Sorry just letting off steam. I will contact them next Monday. Watch this space for the next instalment.

[Neonkittie17]

Sorry to hear the madness continues for you re the temp switch to Abatacept infusions due to the sub cut shortage. My wait to hear anything for over two weeks drove me mad so I can only imagine you are feeling peeved to say the least. My rheumy dept haven’t sent the script for me to have syringes as yet I was told by Lloyds so I’m continuing on pens until Lloyds get this script. I can stay on sub cut though.

I’d ask to speak to a manager when you phone Lloyds. I had to do that before when awaiting a start date for Abatacept pens in 2022. Tell them you’ve been left waiting and no communication for long periods so you have to keep nudging them all the time and it’s getting you down. Tell them how times you’ve chased your hospital people and Lloyds re this. As your rheumy team sent the script to them in June over two weeks ago you know where the fault lies. My guess would be it got lost between Lloyds pharmacists and the people who arrange delivery.

Hope you get someone helpful when you phone Lloyds and you are closer to resolving this next week. Are you out of sub cut now? If so be sure to tell them. Good luck. 🙏🩷

[Otto11 in reply to Neonkittie17]

Thanks. I’ve got 2 pens left. I will call them again on Monday as the Rheumy Nurse suggested. I’m getting stressed for 2 reasons as we are away for 4 weeks in September & if they wait till I run out of injections then it will mean I am without any meds for 8 weeks as the infusion would be due just after we go away.

[Neonkittie17 in reply to Otto11]

Oh no. Otto, you have to tell them this delay re the infusions commencing is making you feel really unwell and going to potentially spoil your holiday. I hope they can let you continue to have the pens until at least after you return from being away. 🙏

[Otto11 in reply to Neonkittie17]

Thanks. Ideally an infusion just before as then I won’t have the cook bag hassle at the airport. It was so much easier when I was on Rituximab. We will see.

[Neonkittie17 in reply to Otto11]

That is true re Rtx and no worrying re arranging meds and their transportation around holidays. Hope you hear soon.

[nanny_bee71]

I feel your frustration - there seems to be not only a shortage of the jabs but also a breakdown in the departments dealing with the situation - I was bounced between rheumatology helpline, homecare pharmacy, sciensus and GP and they all seemed clueless with the situation, At least mine has now been sorted despite having to wait until 20 August for the first infusion. Hope you can get sorted soon. I also contacted PALS but am still waiting for feedback from them.

[Otto11 in reply to nanny_bee71]

Thanks. Yes it’s obviously not Lloyds fault & trying to sort it out must be a nightmare for them. But communication is rather disorganised being told one thing then another. Can I ask why you have to wait till 20th August. I hope they’re not going to leave you without any meds. 🤞

[nanny_bee71 in reply to Otto11]

I am a newbie to abatacept and I think they are sorting ongoing prescriptions first. This was the date I was given. I am still on methotrexate and my GP has prescribed co-codamol for the ongoing pain while it is all sorted

[Otto11 in reply to nanny_bee71]

Ah I see. When I last spoke to Lloyds the lady said they thought the shortage would be over by August. Are you having infusions permanently rather than injections?

[nanny_bee71 in reply to Otto11]

I was supposed to start on injections all paperwork etc completed in April but start was delayed because of an imminent shortage. I have been told that I will go back to injections when the shortage is sorted (('ve been told Sept/Oct)

[Otto11 in reply to nanny_bee71]

That’s not great. Poor you that’s 4 months delay. Couldn’t they start you on infusions then?

[nanny_bee71 in reply to Otto11]

That would have been a good idea but nobody seemed to be aware that the shortage was coming down the track - the National Security Patient Alert issued by the Department of Health was dated 23 May so I guess it was a scramble to get things in place and there seems to have been a reduction in rheumatology services recently - maybe just in the area where I live

[Neonkittie17 in reply to nanny_bee71]

I was bounced last month for nearly 3 weeks and rheumatology said it’s pharmacy who will let you know and organise this and pharmacy said it’s Lloyds and Lloyds said it’s rheumatology. 🥴😖 That happened when I was commencing Abatacept too, 2 years ago. I hope you hear from PALS soon. I don’t know if they are able to bring forward your first infusion date but I wish they would.

[ABwn in reply to Neonkittie17]

Hi Neonkittie 17. I have been passed back to my GP practice. GP will be monitoring my bloods and medications. I'm now on 6 monthly jabs of denosumab as well as mtx and hydroxychlorequine and folic acid. I was wondering if Rheumy dept had to cut staff. Ours did hold meetings to let us know that they would be changing how they worked due to funding.

[Neonkittie17 in reply to ABwn]

Were you on Abatacept? Generally when you’ve got RA you see a rheumatologist but as you say maybe there are some cutbacks. 🤷‍♀️Hope your RA is stable and the arrangement with seeing the GP works well for you.

[Fra22-57]

my infusion was supposed to be arranged too.The only sent me 2 epipens last time and I use the last one on Tuesday so I rang day.They were waiting for correct prescription too but rang me back to arrange for some moreinjections to be sent out next week so I am not without.It does seem like if you don’t contact then you are left in limbo thou

[Otto11 in reply to Fra22-57]

Thanks. Yes they promised to call me back in a few days once they had the prescription but never did. Then my Rheumy nurse said it was sent on 19th June so don’t understand why it’s taking so long to sort out. I’m calling them again on Monday & see what happens. I’m glad you’ve got pens till they can arrange your infusions.

[Fra22-57 in reply to Otto11]

The costs will be through the roof. Mental 🫣

[Otto11 in reply to Fra22-57]

Yes I’m sure you’re right.

[Neonkittie17 in reply to Fra22-57]

Yes, and because it’s only monthly delivery for the most part of patients for sub cut, and I’ve only ever been allowed 4 pens in a monthly delivery it means you are always phoning them as you’ll need to be in touch with them every 3 weeks before you’re out of pens.

[Leics]

I had my first injection on Tuesday this week and still have 3 pens from the 1st supply. The nurse who oversaw my injection said it’s a bit of a nightmare because the nurses have been asked to go in on their day off to cope with all the extra infusions and they’re struggling to cope (Lloyd’s). It must be a logistical nightmare for all the departments and I’m absolutely dreading running out of supplies in 3 weeks. I’ve made it very clear to everyone involved in my care that there is no way I will be able to have infusions with my hypogamma issues and will have to keep having the injections for safety reasons more than anything. I feel for you I know I’m going to have a battle on my hands and will probably end up chasing my tail like you are. I hope you get somewhere soon. Keep us posted.

[Otto11 in reply to Leics]

Thanks. I hope you get somewhere too. I hope they can accommodate you with the pens. I can’t imagine what a nightmare they must be having to sort it all out. Good luck 🤞

[Neonkittie17 in reply to Leics]

I hope you don’t have to battle it, as my rheumy agreed to my email to her re not wanting infusions due to my poor immune and hypogamma and she sent it to hospital pharmacy and to Lloyds. I’m to have syringes once Lloyds receive this request from rheumatology. My delivery next week will still be pens. We should not be having this extra stress.

[Biofreak]

I too am in the same situation. My rheumatology department sent me a letter saying to inject only once every two weeks instead of once a week to stretch out my current supply and when I'm about to inject my last pen I have to call Lloyds to arrange an infusion. I got a call from Lloyds asking how many pens I have left. I have 3 left which taking one every 2 weeks should last till 7/8. After hearing what you have experienced Otto I can predict that I will probably have similar difficulties. I'm dreading it. These arrangements have been left to the last minute and I'm sure they must have known this was going to happen a long time ago . It's definitely not good enough especially when they know how much people rely on this treatment to stay well. I already feel the downside of fortnightly injections. I hope you get your treatment as soon as possible. Please keep us updated with your experience. I've no idea how many people nationwide use Abatacept but if it runs to hundreds there's probably a problem with not having enough nurses to administer infusions because it's been left too late to implement contingency plans.

[Otto11 in reply to Biofreak]

Thanks for your reply. Im sorry you’re in this position it dosnt seem right. I spoke to my Rheumy nurse last week & she never mentioned having them every 2 weeks. I was off them in March/ April for 7 weeks due to flu & pneumonia so don’t really want to miss any more weeks. I agree that they have left it till the last minute when as you say they must have know for quite a while. I recall someone in here saying weeks ago that there was a shortage & did anyone know about it. I’m away in September for 4 weeks so ideally would like an infusion prior to that but logistically it’s not going to happen. I just want a plan in place. I will call Lloyds again on Monday.

[Biofreak in reply to Otto11]

It's worrying. I think the every two weeks thing was just something my rheumatology department came up with as a short term idea to stretch out supplies. I will let you know if there are any developments on my side. Good luck.

[Otto11 in reply to Biofreak]

Yes please let us know. Take care.

[Biofreak in reply to Otto11]

I'm going away for 2 weeks next week so I hope I can keep going with my restricted dosage.🤞🙏

[Otto11 in reply to Biofreak]

👍🤞

[Neonkittie17 in reply to Biofreak]

I was told by Lloyds when I started Abatacept almost 2 years ago that there was a pen shortage and only 4 pens a month delivery was allowed. They said pen manufacturing problems, so seems they knew.

[Biofreak in reply to Neonkittie17]

Yes that's my experience too. I knew about it and was only delivered 4 at a time. You would think that the manufacturing problems would have been overcome by now but apparently not. There's probably all sorts of manufacturing licences to be overcome which restrict the UK manufacturing the pens ourselves. My rheumatology suggested that Brexit caused the problem. I honestly don't know the cause and no-one is likely to be honest about it. So as usual the patients suffer. I've written to my MP in the past with no response worthwhile. Everyone fudges round the problem but no-one seems to be able to rectify anything.

[Neonkittie17 in reply to Biofreak]

Are all the pens manufactured in Australia? I am sure Lloyds said to me they were. Yes it is awful the manufacturers haven’t rectified it as Lloyds were telling people there was a problem a couple of years ago. 😳😠

[Biofreak in reply to Neonkittie17]

I honestly don't know where they are manufactured. But to me wherever they are manufactured why is there now a problem when they have obviously been manufactured for years. No-one will tell us what the real problem is. So we, the patients, are left floundering and chasing our tails. We rely on health professionals to deal with these things but more and more we are let down. I absolutely hate having to push and push for what should rightfully be available. I had to do it for my husband who passed away last year and I am now sick and tired of having to do it again on my own behalf.. Sometimes I just think they would just like us to go away and give up but it's not in my nature to do that. I think my mentality has been affected by my experience trying to get the treatment my husband needed every step of the way and meeting brick walls every time. I now have no faith in our medical services and am very sceptical about everything I'm told. I'm ranting now I know but it's better than locking it away. I'll shut up now .

[Otto11 in reply to Biofreak]

Oh I’m so sorry to hear about your husband. It sounds like you had a very difficult & traumatic time. You rant if you need to. x

[Neonkittie17 in reply to Biofreak]

You have every right to speak up on this and I hear you. 🩷 I am very sorry for your loss. This is the last thing you want to have to do for yourself having been there last year pushing for what your husband needed. I’ve been there twice before chasing and pushing re starting previous meds and also re being unjustly left off the CEV for almost a year until just before the vaccines, The stress makes you feel awful and I’m quite a calm person normally, but yes you feel you must keep striving to sort things out.

I just don’t know why the pen shortage has occurred if the manufacturer knew two yeas ago there was a big shortage. Especially when the med itself isn’t the problem. I hope the manufacturing process is going well and meds companies are building good stock levels. 🙏

[Biofreak in reply to Neonkittie17]

I'm afraid we're unlikely to get an honest answer to this. I too was left off the CEV list for quite some time in spite of having rheumatoid arthritis on biological treatment and type 1 diabetes but was put on it eventually because I was looking after my husband who was on the CEV list. I am classed CEV now in my own right. When I return from holiday I'll pick up the baton again.

[Neonkittie17 in reply to Biofreak]

Hmm .. just your diabetes alone should have put you on CEV. It was baffling re the nurse “acting up” in the absence of my rheumy in April 2020 and the nurse refused to put me on the CEV register. Didn’t understand hypogamma and my chronic bronchitis and it becoming pneumonia every other month! Didn’t know the action of Rituximab either on my immune. (Nurse did read I was also on Mtx though! That’s all the nurse focused on and nothing else.) I needed 2 weeks of abx every other month for over 3 years?? 🙄. Nurse heard me coughing like crazy with the bronchitis too several times on the call. 😖 (“No evidence of bronchitis”!!). I shudder to think who else was left off the list. Nurse was out very much out of their depth.

Rheumy didn’t see my GP letter re CEV for almost a year. “Acting up nurse” didn’t think think I was at risk (Said .. you’ll be fine to go to a Tesco!!!!! I nearly went mad but kept calm and I said .. my husband forbids it so I’m going to take his advice as he’s more knowledgable. He was. ) I was on Rtx and Mtx and had got hypogamma for several years, and as a result I’d got chronic bronchitis and pneumonia every other month. No vaccine responses at all to Covid antibodies. It’s crazy what happened to patients like you and I.

I didn’t know you could get CEV status because your at home partner was CEV but a lot of it was down to physician discretion too. If you got a GP/consultant who understood it all then you had a better chance. Mine understood but had gone to the frontline as was the case for many.

I just hope some Abatacept patients aren’t expected to swap to another med but feel that would have been announced already. Enjoy your holiday. 🩷

(Apparently we were classed as “higher risk” by the government that was. Not saying anything political as we’ve been asked not to (and I respect that) even if politics affects our meds. Not that it is for Abatacept though. Not knocking the NHS either. Definitely not. )

[Biofreak in reply to Neonkittie17]

The nurse that administered my husband's COVID vaccine said I needed to be protected because my husband was CEV and did mine at the same time. Later on it was acknowledged by the Rheumatology consultant that I was CEV and issued a letter to me and they GP. I've tried nearly all the biologicals and Abatacept suits me best so there's no way I would want to change.

[Neonkittie17 in reply to Biofreak]

I was told I needed to be on Abatacept as it was “more gentle on the lungs” and I was having all these bouts of bronchitis and pneumonia due to the hypogamma, I’m still on prophylactic and to hold it back. I wouldn’t want to change med either as although I’ve not tried all biologics by any means, I don’t want anything they could annihilate my immune again as Rtx did. I know my rheumy would fight to let me stay on Abatacept.

There was never any doubt from the professional, senior medical people that I was CEV. They all said that I was severely immunocompromised and vulnerable Just that one nurse out of their depth, wrongly deciding I wasn’t CEV 🤦‍♀️ whilst the senior staff were away working on the front line. I then got 3 letters from my GP, my rheumy and my immunologist all within a couple of weeks saying why in detail I was CEV! The immunologist authorised me to repeat my first two failed Covid vaccines (no antibodies due to Rtx) and then catch up every 3 months till I was well and truly boosted and I really appreciate all they did as they were excellent.

[Summerrain14]

I am so sorry you are no further on with getting your infusions. I can only imagine the stress it is causing.

It seems each rheumy team are dealing with this so differently. I would be apprehensive only injecting every two weeks.

I wish I could say something useful but know I am thinking of you and can’t wait to see a message to say your first infusion is booked for you.

[Otto11 in reply to Summerrain14]

Bless you 🙏🏻 I will let you know.