Ketchican

[Ketchican]

Has anyone been successful in obtaining the latest anabolic drug Abaloparatide which is similar to Teriparatide, I would be very grateful to know. Thank you

[Armagnac]

NICE say “Abaloparatide (Eladynos) is available on the NHS. It is a possible treatment for osteoporosis after menopause in women, trans men and non-binary people if they have a very high risk of fracture.” So you should be able to get it and good luck. Personally as a Man I think this statement from Nice is discriminatory. They seem to think only women get osteoporosis. Fortunately I had a private rheumatologist who prescribed Teriparatide. Unfortunately I had to pay for it.

[Ketchican in reply to Armagnac]

Many thanks for your prompt response. I agree with your critical comment and it is reflective I think of the 'outback' approach with the diagnosis and treatment of osteoporosis. I have a good Consultant but it is obvious that although NICE are confirming the ability to obtain this drug on the NHS the reality is very different and it is likely I will have to pay for it, if I can get it all. I will keep you posted.

[Sunseaandsand in reply to Ketchican]

Hi, it becomes available in November to patients who fit the criteria. I have been offered it but after much deliberation have chosen not to go ahead with it.

It is not recommended for patients who have been treated with Teriparatide and it works better for patients who have not been on Bisphosponates immediately before being treated with it.

Trials showed it gave better results than Teriparatide, in America it goes under the name Tymlos if you do a search you will be able to find all the information you need.

My own view is it will depend on a patient’s history and what consultant they are being looked after by.

All the best at moving forward. x

[Ketchican in reply to Sunseaandsand]

Hi, thanks for your welcome response. I agree, whomsoever is your Consultant and the existing links he/she has with Pharma, often dictates the availability of drugs and this is no different. My Trust is not currently prescribing but my Consultant is trying to change that and if not successful I shall pay as Ab does seem to meet my specific needs better than Teriparatide although they are very similar. That is certainly confirmed in the NICE Appraisal document. I have not previously had any drug for Os and having spinal fractures am currently taking Calcium and Vit D and walking briskly on a daily basis. Exercising beyond some basis bone building does scare me because of the fractures even though they are now healed (9 months old). Interestingly, although NICE say the drug will be available in November, my Consultant says that many appraisals have that suggestion but in fact it is more usual for it to be 3 years than 3 months after NICE approval! However, I will let you know what happens, I should know in a month and whilst I do not relish taking drugs I will feel somewhat safer when the treatment is underway.

Take care and thanks again x

[Ketchican in reply to Sunseaandsand]

Forgot to ask, are you in the UK as you said you had been offered Ab? Any particular reason why you chose not to go ahead with it? Thanks

[Sunseaandsand in reply to Ketchican]

Hi, yes I am in the UK. I have been given a choice of a further 2 years treatment of Teriparatide or the new treatment AB.

My situation is very complex.

I now have 15 fractures in the spine ( 2 in the ribs) which have resulted in Kyphosis and this year because of 3 vertebra re fracturing and one of those re fractured 3 times, I now have developed Scolliosis.

My own experience with treatments over many years has not been good but I have until this past 2 years continued on despite some serious side effects.

My decision not to have further treatment comes from the fact that my bones are so very weak now that the limited gain does not out weight the potential problems from the treatments.

I do not have any quality of life now I am reliant on a wheelchair, many adaptations and aids and others to help with my personal care.

I always say to others please try the different treatments offered because millions of people have none or very small side effects and do really well on them.

If I had been able to take the treatments without any problems I would not have hesitated.( I did not give up at the first hurdle I did the full course of Teriparatide and 3 years of infusion with Bisphosphonates plus every other one made available to me)

It is not the treatments it is my reaction to them.

I feel that if many people on the forum were to hear my experience of living with Osteoporosis and live my life as it has been they would be begging to try the treatments.

Your last sentence to me seems a really sensible way forward.

[Ketchican in reply to Sunseaandsand]

I am horrified at the content of your mail and all that you have experienced, how utterly dreadful and heartrending. It makes my spinal fractures pale in comparison. Whilst I too have had bad responses to medication all of my life, I have RA and failed on all the drugs because my body reacted so badly I became at risk, but I will pursue with diligence AB because I think it is a better drug for me than the Teraparatide and my Consultant agreed. He is making enquiries to see if the Trust will obtain it. Do you mind my asking you in which NHS area you reside? It would be helpful to know but I quite understand if you would prefer not to share.

Thank you so much for sharing your situation, you are very courageous and I will let you know how I progress.

Take care

x

[Betula-birch]

ROS also (like NICE) has a good overview (FACs about aboloparatide)

[Ketchican in reply to Betula-birch]

Thank you very much, I will pursue that.