(PART 5) Update re Forsteo suddenly stopped.

[Angelicspirit]

Dear friends,

After several ‘phone calls over the past few days, we are hopefully starting to make some slow progress.

Thank you all, for your kind advice and suggestions, all of which are now stored in our armoury and some of which have been acted on.

The very helpful ladies at the ROS set about finding out if NHS England have changed the dosage period for Forsteo from 24 months to 18. ( This is what we were told by our local Rheumatology department) They )The ROS) could find no evidence of this but today, I spoke to a pharmacist who stated it is NICE that have approved funding for 18 months and any extension ( up to 24 months ) must be applied for. This applies nationwide and sounds more accurate. The Pharmacist stated that she could see clearly from Margaret’s Consultant’s letters that he has always intended that she should receive treatment for 24 months.

We are now awaiting a phone call which will hopefully confirm that the extension of a further 6 months treatment is being applied for. As yet, nobody is saying why that wasn’t already in the pipe line and who was responsible.

We will keep you informed as soon as we know.

Thank you again for all your support, from me and my dear wife Margaret.

[Fruitandnutcase]

That sounds more hopeful. Hopefully you will get what you need very soon. The worry of all this is something you really don’t need.

Very best wishes to you both.

[Angelicspirit in reply to Fruitandnutcase]

Thank you very much Fruitandnutcase. As soon as we get any news, we’ll let you know what’s happening.

Big hugs from us both.

[Fruitandnutcase in reply to Angelicspirit]

Thank you, thinking of you both.

[springcross]

I find it surprising that ROS knew nothing of this but you now know and hopefully, Margaret will get her next six months treatment without further hassles, which is something she certainly doesn't need. All the best to you both and thanks Steve for the update.

[wellness1]

Sorry you are having to chase this, but it sounds like you're on your way to getting answers and Margaret's continuing treatment. Best of luck to you both. Take care.

[Snowybear]

Dear Angelicspirit

That’s more hopeful.

I’m having Teriparatide as Movymia and am wondering if this new decision from NICE will affect that as well. I’m nearly 18 months in to treatment which I was told was for 2 years.. Could I ask who you have to apply to? Is this for the consultant to do? I don’t have contact with the pharmacy usually.

I do hope you have a positive outcome.

[Angelicspirit]

Hi Snowybear, Thank you for your message. Hopefully, you shouldn’t have to do anything but it might be worth just asking the question, in plenty of time, “Am I still on track to receive my Teriparatide for 24months?” It was our belief following 2 clinic appointments this year with the Consultant who arranged her Forsteo that all was in hand but in Margaret’s case, somewhere along the line, someone unbeknown to us, didn’t communicate. You are right of course, as in normal circumstances we wouldn’t be talking to the Hospital’s pharmacist. It’s just that so far, bless her, she is the only person we’ve spoken to who seems to be in a position to sort matters out. Warmest wishes to you,

Steve & Margaret