Abatacept here we go again!

[Otto11]

Annoyed to say the least 😡 I have had infusions for the last 3 months due to the shortage of pens like many of us. My next one is due on Sunday. Heard nothing from Lloyd’s so called about 10 days ago to be told I will be going back to pens now. That’s good but they said they had no prescription for me but would chase it up with the hospital. I waited till last Tuesday but heard nothing so called again & was told exactly the same thing! It’s now 3 days till my next injection & still no response from Lloyds. I do have 2 in the fridge still ( just as well) but that’s not the point. Getting fed up of chasing them for everything. I never had a problem till the pen shortage. No idea what’s going on 🤷🏻‍♀️

[Madmusiclover]

Wish me luck. I’m meant to be starting it. 2 weeks in to a 7 week wait at pharmacy to sort it. In meantime cancelled my TKR as RA out of control.

[Neonkittie17 in reply to Madmusiclover]

Hopefully it will all be back to normal by then. 🙏 Sorry for the delay for your knee.

[Madmusiclover in reply to Neonkittie17]

Maybe. Rheumy prescribed it in August telling me the shortage was over….

[Neonkittie17 in reply to Madmusiclover]

Not entirely true from the rheumy but they were likely told that from the meds delivery company. The shortage was caused by a fault in the manufacture of the click pen casing and it leaked apparently, so had to be redone. Lloyds don’t swap people back if they’re mid script either as you have to go to the end of “the script they’ve built” I was told by them. I think most people are being swapped back now to resume their pens, so should be better. 🙏🙏🙏 Mine will be resumed early November.

[Madmusiclover in reply to Neonkittie17]

Interesting. Thanks.

[Otto11 in reply to Madmusiclover]

Sorry to hear that. Hopefully they will be all back to normal by then & you can get your TA back under control x

[Neonkittie17]

Quel surprise! I was told I’d be returning to pens in this week’s delivery and guess what’s inside? Syringes! Lloyds have had two emails from my rheumy for me to be returned to pens, and have received the emails apparently, but ignored. 😑🤷‍♀️🤦‍♀️😡 You have to chase everything and keep asking. I’m emailing them on this then there’s proof of what I’ve asked. Good luck .. it’s not easy as you’re often engaging with them every week.

[Otto11 in reply to Neonkittie17]

Hi tbh I wouldn’t mind syringes. By coincidence I had a call from a Rheumy nurse to book me in for a hip injection so I asked if she could look into it. She said that they had issued the new prescription on 19th September! I called Lloyds again & low & behold they now have it! They have arranged delivery for next Wednesday so all ok in the end x

[Neonkittie17 in reply to Otto11]

Hmm, funny how when the rheumy staff got involved, Lloyds soon found the script!! Same for me too. Could be possible that the phone staff can’t see whether or not the pharmacy staff have updated/“built the script” as they’ve often said to me and said pharmacy was holding it up. Lloyds are trying hard toget on top of it all though as their phone lines are open Saturday now. It’s been … err .. challenging!!

[Otto11 in reply to Neonkittie17]

Yes can only agree. It must have been a logistical nightmare for Lloyd’s. Obviously had to employ new staff who as you say may not have all the same access. Thank goodness we are able to fend for ourselves though or goodness knows how long we would wait for deliveries. Let’s hope things settle back to normal now 🤞

Take care x

[Neonkittie17 in reply to Otto11]

You too! I heard on their phone announcement that Lloyds also have their phone lines open on Saturdays too now, so they are trying to make it better for us! x

[Neonkittie17]

Can you ask your rheumy nurse to email them? I got through to someone a hour ago at Lloyds who was very on the ball and said she could see on my screen it is confirmed for 4 pens to be delivered at the start of November. She could see the rheumy request emails too to confirm I’m resuming pens. Hope you gets yours sorted asap. 🙏

[Otto11 in reply to Neonkittie17]

The last 2 people I have spoken to at Lloyds both said the same but we just went in circles repeating themselves. The lady today was very on the ball & could see everything on my account. Anyway it’s sorted big sigh 😮‍💨

[Neonkittie17 in reply to Otto11]

Sounds just like the excellent woman I spoke to yesterday!

[Otto11 in reply to Neonkittie17]

Did she do a full check on all your details etc to see if everything they had on file was still correct & up to date? She was on the phone ages looking into everything & sorting it out efficiently & really chatty & pleasant. Totally different to the others I have spoken with recently who just said that there was no prescription repeatedly. I wonder if some team members can see more info than others. x

[Neonkittie17 in reply to Otto11]

Yes, sounds like the same nice lady and asked me too if she could do an update on all my details. I think she knows how to find info on the screens/computers.

[Otto11 in reply to Neonkittie17]

Definitely she was in a different league to others I have spoken with. Others just mumble saying oh I don’t really know I can’t see anything on your file etc. She was like right let’s get this sorted for you. Super efficient.

[Neonkittie17 in reply to Otto11]

Yes she was excellent with me too. x

[Runrig01]

I would ring your rheumatology team, to confirm the prescription has been sent to them. Are your bloods up to date, as this can sometimes result in delays in issuing a new prescription. I’ve had it where rheumy has issued it, but then it’s been stuck at the hospital pharmacy. In fairness, it may be out of Lloyds control. If your team have sent it, they can chase on your behalf.

[Otto11 in reply to Runrig01]

Thanks. I had a coincidental phone call from Rheumy nurse to book me in for a hip injection so I asked her if she could help. She looked & said the prescription had been sent to Lloyds on 19th September! I have rung Lloyds & now have a delivery organised for next Wednesday 🤞x

[Summerrain14]

So sorry to hear that your troubles getting your meds continue for you. I appreciate how lucky I am as my hospital sorted out my infusions for me when there was a shortage of the pens and I had the infusions done at my local hospital. The delivery of pens again has gone smoothly and have already had one delivery and having another one next Wednesday. I really hope you get something sorted really soon and you stop being given the run around. I would check with your rheumy team that the prescription has been sent to Lloyd’s if you have not already done so. Keeping my fingers crossed for you. x

[Otto11 in reply to Summerrain14]

Thank you. I’ve managed to sort it as had a call from a Rheumy nurse to arrange a hip injection & asked if she could look into it. She said the prescription was sent to Lloyds on 19th September. No idea what Lloyds have been doing with it or why they couldn’t tell me they had it 🤷🏻‍♀️ Anyway sorted a delivery for next Wednesday. Really hope things return to normal now x

[Biofreak]

I was notified last week by letter from my rheumatology department that the pens are now available and shortly afterwards I was called by Lloyds to arrange my next delivery. I didn't get to the point of needing infusions because my rheumatology dept asked me to inject fortnightly instead of weekly to make my stock of pens last longer. Fortunately the stock I had lasted until the pen situation was resolved. I can now go back to weekly injections thank goodness. I seem to have been relatively lucky with Lloyds. The only times I've had an issue is when the rheumatology department have been too slow to renew my prescription with Lloyds. So it appears your situation is similar to mine when the hospital weren't on the ball with my prescription renewal. Hope you're sorted soon.

[Otto11 in reply to Biofreak]

That’s good. I’ve no idea why it’s not been straightforward. It really dosnt need to be so difficult. Anyway I had a call from a Rheumy nurse to book me in for a hip injection who looked into it & said they had sent the prescription to Lloyds on 19th September. Why Lloyds couldn’t tell me that I don’t know. Anyway I spoke to a lovely lady from Lloyds who seemed much more on the ball than the last two. Delivery arranged for next Wednesday 🤞

[Biofreak]

Glad to hear it.