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.
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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.
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
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
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...