Subcuvia

[bamber]

Any one else affected by short supply of subcuvia for Subcutaneous infusion? I normally get 8 weeks but got 1 week today and should get two more weeks in two weeks time. I do have a bit of stock. This has never happened to me before. The annoying think no one warned me it was gonna happen before it was delivered and nothing on delivery note about it, so came as a shock. I phoned and the company apologized they have to spread it out. But I just hope its not sign of things to come!

[prickles]

I don't know about subcuvia, but Caitlin has just been changed from Viva to Gammanorm and there is a shortage of that at the moment, could it be because the viva is now discontinued and alot of people are changing?

[bamber]

Thanks for that. Maybe your right and it will sort itself out. I just wished they had told me before it came to my door! I would have been prepared.

[susand]

Hi there. What brand of subcuvia de you have? (I am assuming that there is another besides Baxter)?

[bamber]

It is Baxter! Only recently been in short supply apparently - last week when they phoned about delivery they didn't know about it.

[liz2mac]

whoops, I'm so sorry I was out of action about all of this. I'll ring Baxter on Monday and find out what's happening. Please can you all let me know if there are problems with supply of anything else?
Liz

[bamber]

Thanks Liz! I just wish my supplier had been a bit more understanding and told me of the problem - even with a quick phone call before they were due to deliver!

[liz2mac]

Hi all,
I've been in touch with Baxter, who are looking into this. Please could those of you who have experienced a problem, message me with details of where you live (just general area) and who your suppliers are? The advice I have been given is that we MUST not miss infusions. Whilst it is not good practice to swap around the brand of product we use, it is better, on the short term to accept a different product than to miss infusions. If you are having problems with the supply of your product please can you let your treatment centres know as well as UKPIPS? Together we will be able to sort this out as quickly as possible for you.
Liz

[willo]

Hi all

thanks to the information in this forum I called my supplier, BUPA Homehealthcare, who confirmed that there is a problem and I will only get two weeks supply of Subcuvia. I am now going to email my specialist nurse to arrange for an ivig.

This an excellent resource with excellent contributors.

[willo]

Just had an email back from the nurse confirming app for ivig.

[bamber]

Glad to be of assistance. I have Bupa Home Health care too. They are sending me some more in too weeks. Thing is why don't they tell us these things before we find out from else where or turn up on our doorstep. Well glad you OK Willo. This place has helped me too and I don't have anyone else with the condition to talk too. Been on home therapy for so long. Since 1992. Diagnosed 1976!

[liz2mac]

Hi Willo,
I'm glad you're happy with the work the forum's doing, it's been a great resource for me on a personal level as well.
Liz

[liz2mac]

Hi all,
I've heard from Baxter, who say that they had a very temporary hick up with supplies of subcuvia. This is now sorted and all should get back to normal very soon.
Please let us know if you have any further problems,
Liz

[bamber]

I have a delivery Thursday from Bupa Home care - but have been told yesterday it will still be just two weeks supply. Then maybe another two weeks on 5 th April. After that my usual delivery is 3rd May and should get at least 8 weeks(more for safety margin), but they still can't guarantee that (they say), due to having to ensure everyone gets something. I think they have been caught unaware and hopefully in future will be better organised.

[willo]

BUPA Home Healthcare called me to confirm a full 12 weeks supply will be delivered on the 28th of March. I'll wait and see.

I am still going to have the ivig just in case.

[willo]

My Subcuvia was delivered but not the 12 weeks supply that Bupa had 'confirmed'; only enough for one infusion; I now subcuvia for four weeks. As I suspected that the order would not be fulfilled and had plan B in place it is not an hardship.

It does highlight a pretty poor understanding of customer needs. Why Bupa felt the need to mislead instead of informing me of the situation is beyond me.

[bamber]

They did the same to me initially. Last week they delivered 2 weeks and said they may deliver 2 weeks next Thursday (prior to Easter) doubt they will. I am OK for now got three weeks supply. But my next official delivery not till May 3rd - normally get 8 weeks at a time. Need to Phone Bupa and find out what going on. Not sure if I have the IV option as partly due to hospital space being an issue and it being over 9 years since I had IV so the product would be radically different too.

I totally agree with you they are not communicating very well and don't seem to understand the stress it causing. (That's before deliveries might be affected by fuel strikes too!).

I think Liz talked to Baxter and they said the problem was over and getting back to normal - clearly its not.

[liz2mac]

Please keep letting me know about this, I will do all that I can to sort this out. Don't forget to keep your treatment cetnres in the loop on what's happening either as you may need to get help from them.
Liz

[bamber]

Willo?
Have you got your Subcuvia on normal delivery? I am down to 1 week and no sight of any more even though I told them I needed it by 19th April.

I have told my hospital and they say it back to normal. Normal would be 8 weeks supply at a time with three weeks in stock at any one time??? I'll have to phone again Monday - any delivery will be on a Thursday.

I have a hospital appointment in May.

[willo]

Hi Bamber

I feel so strongly that people involved in providing a service to us Zebras need to have a high level of empathy for our, or at least my, emotional fragility that I decided to move to ivig permanently.

I still have 4 weeks supply of Subcuvia but when that is used I will have ivig in Clacton-on-Sea Hospital, about 20 miles away. Although, I do prefer subcut feeling supported is more important. It is not the shortage that is the problem but the way BUPA dealt with me.

BUPA did call to confirm my order. I told them I was now on iv.

I understand that my choice is not viable for everyone.

Reads like a rant.

Stay well