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

[corcho in reply to Armagnac]

Do you mind if I ask how much you had to pay for Teriparatide? To me it seems more logical to take drugs that actually build new bone rather than just maintain.

[Ketchican in reply to corcho]

Good snowy morning! I have not purchased yet but I think it would work out at around £4K for the two year programme but I am not sure. Certainly, in my view, that is the way forward and the anabolic drugs seem to be the way to go.

Good luck!

[corcho in reply to Ketchican]

Thanks for reply. I wonder why the NHS so readily prescribe bisophosonates, I suppose the easy answer is to do with money.

[Ketchican in reply to corcho]

I also think that there is a lack of knowledge held by GP's who are happy to prescribe those drugs that come under their remit ie Alendronic Acid. Ironically, if there was a greater level of understanding of the nature of OP it would be realised that prevention is far less expensive than cure! The cynic might say that as it mainly effects older women (some exceptions) it is unlikely to be seen as an exciting area of development in the world of medicine!

[Armagnac in reply to Ketchican]

Couldn’t agree more about GP’s! A couple of things I took Teriparatide a few years ago and in the UK at that time it cost me approx £14,000 for the two year course. I believe if you research this the NHS in the uk are allowed to prescribe teriparatide if you are female, post menopause and not tolerating Bisphosphonates. Now we have the aboloparatide option. Surely a bone building drug is a better start that a bone slowing drug.

[corcho in reply to Armagnac]

I'm in total agreement. We read about new, improved drug treatments then can't get our hands on them! I have my first appointment with gp next week to discuss my DEXA results. Getting that appointment (I insisted on face to face) has meant a three week wait. I paid for my own DEXA rather than wait more than two months. Meanwhile, I'm arming myself with as much info as possible and refuse to be fobbed off!

[Olliemaya in reply to corcho]

I have been reading everyone's posts about fractures. I have a -4 score in my spine and was offered eventy injections for 1 year. I have decided for now not to take them but maybe at a later date I will reconsider. I haven't had any fractures of yet and I am interested in why if some of you are taking these injections are still having fractures. Thanks

[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.