Awaiting new supply

[Matilda_1922]

Hi

Last week I finished my last benepali injection. Should have had a new supply but waiting for prescription from the hospital I’m under.

I’ve called the company who said call the hospital. Left message saying I need more be. Said will be 3 days to reply so it will be Tuesday before call is returned. I couldn’t get through to the hospital earlier in the week and leave message.

2 weeks ago I saw consultant who had changed benepali to 50 mg once a week from 25mg twice a week. This was changed a few months ago from 50 weekly to 25 twice weekly. I wasn’t told why. Consultant said was possibly due to my bloods at the time. They flipped back I can assume no problem as didn’t say anything.

Now I’m worried my pain will get worse now as the methotrexate doesn’t cover it.

Thank you for listening my rant is over can’t talk to anyone at home as don’t understand

[VeronicaF]

that's bad, I hope you get it sorted out, wishing you well

[PinkLamb]

Hi Matilda_1922,

That’s not very good really is it, I do hope that you can get it sorted quickly, could you contact your GP and ask that they can help in some way, an email maybe or something, you can't be without these drugs, and what I would do in the future, when the homecare ring you and ask how many you have left, tell them one more than you actually have, that way at least you can then be covered if this happens again, which it could,

All the best love 😍

X

[Matilda_1922 in reply to PinkLamb]

The problem with my GP is they are currently being taken over by another GP practice can’t get any non urgent appointment. I think by Monday it will be urgent. Healthcare at home have spoken to my hospital waiting for the consultant to say yes that I can have 25mg for now as they have prescription for that. This was 3 hours ago.

[PinkLamb]

Hi love

Sorry I said tell them that you have one more, I should have said one less

It's been a long long day!!!

X

[Matilda_1922]

I don’t know the number tried today but I didn’t manage to get through to them. My area next delivery is Tuesday so not sure whether I will get some delivered

[Jackadoodle]

Hi,I was always under the impression that a Benepali prescription was only supplied by an RA Consultant at hospital as your GP would increase his budget by £649 per month for 4 injections, and the GP would have a rather smaller budget than the hospital, maybe that is why you are not getting the response from your local surgery that you are expecting.

[Matilda_1922]

I can’t speak to anyone at the hospital. Have to leave a message which I have done but no reply

I’ve not been in touch with GP just healthcare at home and leaving messages at hospital.

My last appointment with consultant 2 weeks ago was a waste of time. Didn’t have any answer why they changed my benepali 50mg once weekly to 25mg twice weekly. Said it might due to my bloods they flipped through them but didn’t say anything so I can assume it wasn’t that. They didn’t listen to me at all. Said the reason I was to reduce number of injections was I don’t like injections which is not the case.

I just wanted to go back to once weekly it doesn’t make any difference cost wise just convenient to me. I can work breaks away without needing to take my injections away with me.

I understand the nhs is stretched but why should I be left with no treatment for RA apart from methotrexate(which is useless without benepali and now in a lot of pain.

[Hidden in reply to Matilda_1922]

That’s really terrible that you are just left without benepali and no explanation as to why. If it were a weekday I would say go to the hospital and stay there till they sort it out but it’s the weekend now so that won’t work. I hope it gets sorted on Monday.

I do what Pinklamb said, I had a couple of weeks off for an infection so I now have two weeks ‘spare’ in case of delays.

[Matilda_1922 in reply to Hidden]

I think I will need to do that in future to ensure I never run out.

[VeronicaF]

its scary what has happened to you, leaving you in limbo

I hope I don't have the same problems when I go on them

[RAspouse]

This has just happened to my wife. Had her first two deliveries fine. When she had two doses left and had heard nothing from HaH rang them and was told the initial prescription was only for 8 weeks so had run out. Several calls to HaH and Rheumatology at hospital this has still not been sorted after more than 2 weeks. Was due her next injection yesterday but still no sign of when the delivery will happen!

Obviously having a break is not critical but will she have to go through this extra stress every time? Due to have her 12 week assessment mid May and not sure how this break will affect thins

[Matilda_1922 in reply to RAspouse]

Hi RA spouse

It’s crazy isn’t it. I found the communication of both services was poor. If I hadn’t called I would possibly be waiting. I was start to have pain. Have had 2 doses but pain is troublesome.

Hope your partner gets their supply soon.