Orencia change

[Csavo]

I have been told that orencia injection is in shortage and that they are changing me to infusion which has to be given by a nurse I am due to get this done today and no one has been in contact to arrange this I have tried contacting anyone I can think of to get this done but no joy. Has this happened to anyone else and can recommend what to do please

[Neonkittie17]

Hi, there are a few Abatacept shortage threads over the past few weeks if you do a search so have a look and see what Orencia/Abatacept patients have been experiencing. Also look on LLoyds Clinical Homecare website if that’s where you get your med delivered from, as there is a huge section on Abatacept sub-cut shortage and why it’s happening. I’m moving from the click pens to pre-filled syringes temporarily. Others on here have moved to infusions.

Also you haven’t said if you are going to have it at home or hospital. Are you in the UK? I ask as we tend to call it Abatacept here in the UK rather than Orencia and the shortage of click pens and syringes is world wide atm. Hope you can sort it out. 🙏

[Neonkittie17 in reply to Neonkittie17]

At the moment the phone queue to speak to someone at Lloyds, re delivery is .. you are 16th in the queue. You can email but I want to try speak to someone,

[Gillybob19]

Hi Csavo, I had a phone call from Lloyds a few weeks ago organising the delivery of drugs etc and another phone call to set a date for a nurse to come to my home. I heard nothing else. The nurse came yesterday and I had my infusion, no problems. They check your blood pressure and SPO2 before they start and the process took around 2 hours in total, 30 mins for the infusion. If you're with Lloyds they should have contacted you.

[Csavo]

Have ended up having to contact the hospital and they are going to do it for me there hopefully they get things in place going forward as have been told this is going to be ongoing

[Neonkittie17]

It’s going to be at least until October I was told.

[Leics]

I’m in the same boat but in my case I doubt I will be able to have the infusions. Lloyds don’t have a prescription which I not surprised about. I’ve rang the world and his wife about this and eventually rang my consultant secretary I’m still awaiting information and I used my last injection yesterday. I’m in limbo and looks like meds will be changed I only started Orencia or abatacept 4 weeks ago.

[Neonkittie17 in reply to Leics]

Hi, can you email your rheumy and explain why as I did (our reasons are very similar) and see if they’ll request pre filled syringes for you? State your case on email. Hope you can sort this. You should be allowed to remain on the sub-cut and given the pre filled syringes knowing your issues re Rtx /infusions/hypogamma.

[Leics in reply to Neonkittie17]

I’ve spoken to rheumy secretary and consultant has said I’m ok for infusions I have to trust his opinion it’s only taken them 4 days to get back to me. I’m a little afraid of infusions but I’ve just had an immuno blood test so if abatacept isn’t suiting me then it will show there I suppose. I have to say the pain I’m experiencing on this drug is 10x what it was and swelling is everywhere but I’m toughing it out. Infusions or nothing is the choice according to them no syringes and you cannot email them they’re still in the dark ages at Leicester hospitals.

[Neonkittie17 in reply to Leics]

Hi Leics, long message as quite a bit of info for you hopefully helpful. I’m glad you got to speak to someone. Abatacept weekly sub cut usually starts to work around 6-8 weeks for many people so I feel you haven’t had enough of the sub cut to take full effect. Hopefully the infusion will calm the RA down quicker than waiting for another 4 weeks of sub cut to do that, so it could work better for you.

Hope this helps to know my IgG/hypogamma has not deteriorated since having sub cut Abatacept since August 2022. The opposite .. it’s increased my immune, but slowly, but I’ll take that. My igM is still hypogamma and always has been since commencing Rtx in 2014 and affecting me re hypogamma chronic bronchitis. Why I must stay on Abatacept as it’s helping my lungs. Rtx took 2.5 years to stop affecting my immune so aggressively. As you well know it can take even longer. Also I asked my rheumy in April when I saw her … what are the problems people tell you re Abatacept side effects? and she said … very few. Hardly anything she gets reported compared to the other biologics.

Your white blood count will show if anything is out of synch (my general WBC is 7 right in the middle despite the hypogamma) My rheumy told me my NHS rheumatology don’t do a T cell test for RA. They are very involved for analysis (lymphocyte sub-set panel the test is called.) I have one booked via my NHS immunologist that he wanted to do this summer.

I also had a Covid T cell antibodies test done at a private clinic after my previous booster, which I paid to have done to see if Abatacept was doing anything there. It was all normal. Proof that Abatacept doesn’t wipe out all your T cells and you can still have enough CD4/helper cells to prompt the B cells to provide antibodies. I hope that gives you some reassurance.

I can’t say exactly how long it was for Abatacept to work for me as I know Rtx was still working for me from my last infusion which was April 2021 so I went 16 months from then before starting Abatacept. I was lucky I never felt I was going downhill re my RA in that no biologic period or 16 months and CRP zero/normal. Not lucky it took so long re my immune/hypogamma. I hope IV Abatacept starts to work very soon after and it is your magic med. 🙏

There are definitely syringes and it’s case by case, but I think your rheumy/hospital pharmacy has probably decided to put all sub cut on to IV. Many rheumy’s have decided not to start people on it since May 2024 so good you got in before that took effect. Did you mean your RA had got noticeably worse since starting Abatacept or it’s been raging for some time awaiting a new biologic? Sorry for the length, but hoped some of this could be useful re my experiences, since we’ve had a very similar path on this.

[Leics in reply to Neonkittie17]

That is very useful information and I thank you very much for it. I have to say that my RA and pain levels have got much worse since being on abatacept the pain increases daily but I have read this can happen just hoping it will settle soon as atm it’s creasing me and I can hardly move. Will see what immuno and rheumy bloods say as I only had them done yesterday. I’ve had hypogamma since 2013 I don’t have many infections luckily and definitely know that antihistamine daily and low dose antibiotics help with that especially the antihistamines 🤷‍♀️. I am very pleased to hear that abatacept has had a positive impact on your IgG fingers crossed it helps me too. My CRP is always normal even if I’m on my knees so inflammation markers aren’t helpful. I had to delay starting abatacept because I had a chest infection, then a family member died so funeral to sort then dementia diagnosis to try and get for another (still haven’t sorted that since March) then suicide attempt of the dementia family member then I got Covid probably from my hubby visiting the hospital and so it goes on hardly surprising I’m flaring badly so stressful and has been for months but I took control of me and started new meds but it’s made matters worse. Still hoping it’s the wonder med for me coz I’ve been in limbo since last November.

[Neonkittie17 in reply to Leics]

You’re most welcome and I hope it gives hope! To you, to Csavo and to anyone. I’m also on a prophylactic antibiotic since August 2022, 3 times weekly to hold back the bronchitis. You’ve been much too long without a biologic and for reasons beyond your control, and I remember you saying previously there was a lot of stress. You ain’t kidding! It is time to look after you now. It will seem a lot to put right, but I’ve been there too even thinking I’d not get out of bed much again and walk (pre Rtx, and the reason I agreed to have Rtx) but you can and will turn this around. Hopefully by the time you’ve had two infusions and ready for the next (after 8 weeks) you’ll be feeling the relief. I don’t think Abatacept is the reason you’re feeling worse, I think it’s because you haven’t had it for long enough as yet and there’s a boatload of uncontrolled RA hurtling round you. The stress does not help and I know so as I had an alcoholic suicidal inlaw who made us live on the edge most of the time with his attempts and behaviour. I hope the first infusion is very soon. You’re much closer then to RA relief.

[lucymead]

I cant find any posts other than 1 year ago. I have had 3 deliveries but only 2 pens at a time. Now they have stopped . I had a review with nurse at hospital on Monday. she mentioned shortage and possible move to infusion. I am not sure that I would be able to have it.

When I got home waited for delivery which was due. It never came and Lloyds said they had no more stock. I should phone Rheumy. still waiting for reply from them and I am due for an Injection on Friday. Very worried as I have been on most biologics and this is the only one that works. I have severe R A among other things.

[OSTEOARTHRITISRA in reply to lucymead]

Have you typed

Orencia

or

Abatacept

at top of page

Search community

It comes up

then scroll down you get 2.3 4. Pages etc

[Csavo in reply to lucymead]

Think they need to be more organised the girl from loyds told me yesterday that they might not get pens in again as she was told they have stopped making them. this is the alternative way of getting the same drug so they need there nursing team to be ready for this as it is people's condition that is going to be affected

[Neonkittie17 in reply to Csavo]

They are not abandoning making the pens indefinitely. The design of the pen is being addressed as apparently it was leaking so they have been addressing that.

[Neonkittie17 in reply to lucymead]

State your case by email too to the rheumy as to why you need Abatacept and ask to remain on it.

[Neonkittie17 in reply to lucymead]

This was the recent main thread. I think the other smaller one was started by Otto.

healthunlocked.com/nras/pos...

[Neonkittie17 in reply to lucymead]

These were the two main recent Abatacept shortage threads.

healthunlocked.com/nras/pos...

healthunlocked.com/nras/pos...

[lucymead]

I have contacted Bristol Myers Sqibb the manufacture of Orencia. They say there is a production problem and some of the CLICK pens are leaking during production. They cannot say when production will fully start again. They intend to do some runs later this year after the engineers try to sort the problem out. It is only the Click pen that is involved. There will be shortage of Syringe because many of us will be moved to syringe. THE NHS and Loydds write up states only younger people and over 88s should be move to Syringe. They are trying to move most of us onto INFUSION to relieve the shortage. Personally I think this is a cost cutting exercise has its a lot cheaper to prepare solution their self.

[Neonkittie17 in reply to lucymead]

Exactly what Lloyds told me and what I saw on the Lloyds website.

[Rainyda]

I'm in Canada, and I haven't heard of shortages here. I'm a senior and I get weekly single dose prefilled syringes. I get delivery for 2 months/ 8 at a time. ( I use to get 12, but cut to 8, because of fridge space) I can inject myself, so don't need nurse. Al the best to you ❤️

[Neonkittie17 in reply to Rainyda]

Seniors, juveniles and a certain med condition get priority of the syringes over everyone, I read, so likely why you won’t have heard as you’re not required to change anything. Glad you’re not being inconvenienced.

[Rainyda in reply to Neonkittie17]

❤️