(Part 5) Funding for Forsteo suddenly stopped! - Bone Health

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(Part 5) Funding for Forsteo suddenly stopped!

Angelicspirit profile image
18 Replies

Dear Friends,

Posting on behalf of my wife Margaret following another 11 very difficult months of her taking Forsteo

We will share anything that might be useful to any of you in a later post, however our main news is that we were shocked to find that without warning, her last pen containing Forsteo has been delivered. Most upsetting, is that the delivery of just one pen instead of the usual 3, was how she found out, rather than by any official notification.

So even although she has had at least 11 further fractures since her funding was first agreed, she is having 18 months treatment and not 24.

Enquiries to her Rheumatology department have us being told that this is NHS England’s current policy.

Has anyone else had this experience please?

Warm wishes to you all,

Steve & Margaret.

18 Replies
Fruitandnutcase profile image
Fruitandnutcase

Dear Steve and Margaret,

Such shocking news, made worse by the total lack of communication. I can’t even imagine how you felt when you were presented with a single pen instead of her usual three.

If your rheumatology dept can’t help then all I can suggest is that you get straight in to your MP, document your case and ask them to work on your behalf. I have heard of people having success when they do this.

Out of curiosity - what alternative treatment has your rheumatologist suggested?

All I can do is send my very best wishes that you can get Margaret’s full quota of pens.

Angelicspirit profile image
Angelicspirit in reply to Fruitandnutcase

Dear Fruitandnutcase,

So lovely to hear from you again and we hope you are as well as you can be. Margaret’s next appointment with Rheumatology is for May next year, No doubt timed to plan for her future after 24 months on Forsteo. So really, nothing is planned yet, although Zoledronic acid was mentioned. You and Margaret clearly think alike as she’s already expressed a wish to write to her MP.

We cannot leave this as it has now become urgent and as always seems to happen, there are bank holidays which inevitably will slow the process.

We’ll keep in touch if we get any news.

Stay safe and warm!

Best wishes, Steve & Margaret

Angelicspirit profile image
Angelicspirit in reply to Fruitandnutcase

Hi Fruitandnutcase,

Just an update. ROS cannot find any official notice that NHS England have limited treatment for Forsteo, so we will be phoning the hospital again tomorrow. Also, I see that on previous posts to you, we talked about medical cannabis. Sadly despite 6 months of buying various combinations of CBD and THC from Sapphire Clinics, Margaret had no pain relief and no sleep improvement.

Hope you’re keeping warm!

Steve & Margaret

Fruitandnutcase profile image
Fruitandnutcase in reply to Angelicspirit

Well surely it has to be good if the ROS don’t know anything about it. Definitely worth contacting your consultant tomorrow, then see what happens from there. It really is absolutely shocking that something like that has happened to you.

How disappointing that medical cannabis hasn’t helped Margaret. I know it’s a very strange thing to suggest but has Margaret tried self hypnosis? I’ve used it on and off since I was in my twenties when I used it for morning sickness - our lovely family GP - who was obviously ahead of his time - used to do it.

The most recent time I used it was when I was in my 50s. I was teaching - I had had time off with flu and was then going back to the very worst class in school - nightmare doesn’t even cover it - and a full school inspection. The head who took them while I was away just said ‘they were awful, they wouldn’t be quiet, so I just carried on with the ones who wanted to listen’.

I couldn’t see any way I could possibly get myself back into the class so I found a hypnotherapist and lo and behold after a few sessions I was able to get back and carry on.

It won’t stop Margaret’s fractures but it might give her another tactic to help deal with the awful pain she is in and once you learn how, you can do it yourself. It’s actually really pleasant. Some therapists make a tape for you to listen to at home. Thinking about it I think that’s probably what got me through the pain of my broken wrist and also my fractured sacrum.

Not sure how you find a medical hypnotherapist - I think there is a register somewhere you can consult.

Anyway I hope you two are keeping safe and warm. I noticed a -7 on the weather forecast for later in the week 🥶 on the plus side we are rushing through December at a fast rate of knots and after the 21st the days will be getting longer. x

Just found this general-hypnotherapy-regist...

springcross profile image
springcross

Hi Steve & Margaret. That's disgraceful. How on earth do they think people are going to manage! I agree with Fruitandnutcase but also, I would be on the phone first thing tomorrow morning to ROS asking their advice - I wonder if they are aware of it! The very best of luck to you. x

Angelicspirit profile image
Angelicspirit in reply to springcross

Hi Spingcross, and thank you!

Yes, that’s a very good idea! I’m also trying to establish if what we’re being told, is in fact the truth or are we being fobbed off with a story to cover their backs? Of course we don’t want to believe that might be the case. 99% of any organisation will have honest, hard working staff but just 1% ‘not bothering’ can have serious consequences. We’ll let you know if ROS are aware.

Warmest wishes, Steve & Margaret

springcross profile image
springcross in reply to Angelicspirit

Good luck to you, I hope you get some honest positive answers. x

Fruitandnutcase profile image
Fruitandnutcase in reply to springcross

That is a great idea springcross and remember who the President of the ROS is!

springcross profile image
springcross in reply to Fruitandnutcase

Ah yes, I hadn't given Her Majesty a thought. Maybe a letter to her, if needed, might help!

Angelicspirit profile image
Angelicspirit in reply to springcross

Hi springcross,

ROS are unaware of any new limits to Forsteo treatment. They had several staff on the case and still maintain its up to 24 months. They are now contacting a couple of trusted Consultants to ask them directly and have promised another return phone call in a day or two. We’re phoning the hospital tomorrow because this is increasingly looking like bull**** !

springcross profile image
springcross in reply to Angelicspirit

How interesting, it will be even more interesting to see what the consultants have to say and I agree with you, it does look increasingly like bull****!!! Thanks for the update Steve and Margaret and good luck with phoning the hospital tomorrow.

wellness1 profile image
wellness1

Dear Margaret and Steve,

What a dreadful shock it must have been to find out this way about a shortened course of treatment for Margaret. With her next rheumatology appointment set for a different treatment timetable, she shouldn't be left in the lurch this way. Brilliant suggestions from  Fruitandnutcase and @springcross, working through your MP and the ROS. Best of luck and let us know how you get on.

Angelicspirit profile image
Angelicspirit in reply to wellness1

Thank you Wellness1, we really appreciate your support and will let you know as we hopefully progress.

Warmest wishes, Steve & Margaret

Angelicspirit profile image
Angelicspirit in reply to wellness1

Hi wellness1,

ROS are unable to find any official correspondence relating to Forsteo treatment being limited to 18 months. Will take a few deep breaths and phone the hospital again tomorrow.

Mavary profile image
Mavary

That's terrible. I was lucky and had the two years on it. I’m now on Denosumab and have been for nearly three years. I’d definitely ask if she can go on anything else because I waited for a while before I had Denosumab and had another four spinal fractures. Just keep on to them because she will be at risk of more fractures. We know the health service is pretty slow at the moment and unless you make yourself known to them will be left. I don’t know if you can perhaps do it or whether your Mum can do it but keep on until they listen.

Mavary profile image
Mavary in reply to Mavary

you can always ring the Consultants Secretary if you know your Consultants name. I’m sure they will be as horrified as we are when you tell them . Otherwise keep on to her Dr. I hope something works out for her as I would be worried too after what happened to me. I’ve got a total of seven fractures.

Angelicspirit profile image
Angelicspirit in reply to Mavary

Hi Mavary,

Thank you for your posts, they are much appreciated. Margaret has previously had Denosumab with disturbing results that left a hole in the side of her lower jaw. This needed cleaning and dressing every day for several weeks. Really, her only possibility after Forsteo, will be Zoledronic acid. She cannot swallow tablets and her spontaneous fractures count is now at least 14 over the last 4 years. We are going to phone her Rheumatology dept again tomorrow. We phoned ROS today and they cannot find any mention of NHS England limiting treatment to 18 months, so we are probably being treated like mushrooms!

Warmest wishes to you,

Steve & Margaret

Mavary profile image
Mavary in reply to Angelicspirit

oh gosh. She’s really going through it. That’s quite scary about the Denosumab. When I first started to take it I knew nothing about Osteopororsis. And took what I was given with no warnings whatsoever. I did read after I’d been on it for a while that you can get Osteocronosis is it. I was well into taking it by then. I would be afraid to stop it now anyway as like I said when I came off the Terraparatide. Or Forsteo I had four more spinal fractures. It’s no fun getting older and can’t do what you used to because of pain. Before the Denosumab they were going to try me on Alendronic Acid. I had one tablet and was violently sick so I couldn’t take them. I hope you soon get something for your Mum. The longer she doesn’t have anything the more prone to fractures she will be. X

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