Frustration

[nanny_bee71]

Following on from the post a couple of days ago regarding the shortage of abatacept and the link to the National Patient Safety Alert regarding shortages, I phoned our local rheumy help line. Initially, I was number 14 in the queue but decided to hang on. I got to number 3 in the queue after 46 minutes and then suddenly got cut off. I was approved to start this medication in mid April and have heard nothing. I phoned the helpline 2 weeks ago to chase up and was told they would get back to me. Still waiting and now there will be no new prescription for this until later this year and no feed back from the rheumy team regarding alternatives. Frustrated probably doesn't cover how I'm feeling now. Only other meds I'm on is MTX and cocodamol and in a persistent flare. That's it rant over - will give the helpline another try tomorrow

[vonniesims]

You could try your consultants secretary . Good luck with it

[Runrig01 in reply to vonniesims]

Agree, I often go through them to get answers. They should be able to either prescribe one of the other biosimilars or a different biologic

[nanny_bee71 in reply to Runrig01]

Thanks for reply. However I tried that only to be told my consultant (who I haven't seen since before covid lockdown) has left!!!! The person I spoke to was very unhelpful as to who now headed the rheumy team so I gave up. Will keep trying and will also try the GP today.

[kaypiercy]

sympathy to you it’s tough enough to suffer RA without having stress about shortage of medication, it’s disgraceful, let’s hope it gets better after the election, suggest you keep trying perhaps get in touch with your MP.

[Fluffontoast]

What a nightmare. I have found it all very frustrating too. I kept on at my GP and they called the rheumatologist for me in the end. I also found my ability to cope was affected by using nsaids that didn't agree with me and made me tearful or cross. Ibuprofen or naproxen were awful! Celecoxib was ok. Not tried cocodomol. Good luck with getting someone to answer the phone! Xxx

[nanny_bee71 in reply to Fluffontoast]

Eventually got through to the homecare pharmacy dept at our local hospital on Wednesday. They phoned me back yesterday to say that the pharmacist was aware of the National Patient Security alert from the Dept of Health, regarding the issue and would be writing to any patient affected by the shortage. The original communication was dated 23 May requiring action to be taken no later than 6 June. So as seems to be the case these days all running behind. I've had to give up on cocodamol because the common side effect is constipation which has kicked in. I will wait for the postman to come next week with letter from the pharmacist

[MerielPB]

I have received a letter from the hospital saying I will have to go onto infusions every 4 weeks while the shortage is on. Are your hospital not doing this for their patients?

[nanny_bee71 in reply to MerielPB]

I won't know until I get the letter from homecare pharmacy dept. Our rheumatoid depth is so difficult to get through to at the moment. Fingers 🤞 I get a positive answer