Romosozumab

[Beatrice110924]

HiHas anyone been prescribed Romosozumab, if so how are you doing?

I have PBC /AIH overlap, cirrhosis and Osteoporosis.

Thanks

[Iceskate]

I had my first two injections on Saturday.

[Beatrice110924 in reply to Iceskate]

So early days for you.I'm a bit concerned that I will have a 20% chance of having a heart or stroke .

Hope all goes well for you.

[28Harvey28]

I had my first 2 injections just over two weeks ago. I was very nervous before as was not given face to face supervision/instructions. The advice I received from this group helped enormously. I spoke online to a nurse who explained everything and demonstrated what to do and I had my daughter there with me for support. Got to say the injections were very easy. The size of the pens put me off a bit but it was explained that they are specially made for arthritic hand etc., I made sure that I took some pain relief for next 24 hrs (paracetemol) and increased water intake before and for several days after. The site where I did injections was a little bruised and sore to touch for a few days after but to be honest I have had worse with a flu jab. So far so good and I just keep thinking the dual purpose of this treatment in building and maintaining bone can only help. Wishing you all the best.

[Beatrice110924 in reply to 28Harvey28]

Thank you for your reply.The Rheumatologist told me that someone from the chemist would bring it round and show me what to do.

Apparently there is a meeting every month to see who is suitable for which drug so I have to wait for that, and also

I am waiting until we've been on holiday as I'm guessing the travel insurance will go up a lot !

Thanks for sharing and hope all goes well for you.

[Sunseaandsand in reply to Beatrice110924]

Hi, consultants are very select in who are offered Romosozumab so I would not worry about Strokes etc. It will not be prescribed to patients who are at risk in anyway.

As for your travel insurance it should not be affected at all by your use of Romosozumab.

The main thing that affect cost of travel insurance ( and usually you would be unable to be covered at all) is if you are awaiting tests, scans etc basically having any investigations whatsoever or awaiting results from any you have had.

All best for the future.

[Beatrice110924 in reply to Sunseaandsand]

Thank you for your reply.It's great to be able to get feed back from people with similar problems.

Rheumy says after her calculations I have a 20% chance of heart attack or stroke but doesn't eliminate me from taking it.

[WellThatHurt]

I completed my year on Romozosumab in March and was very happy with it. The only side affect was a sore leg on some occasions. I found that I had less of a sore patch if I made sure the pens were up to room temperature before using them. Get them out of the fridge a couple of hours before using them. My bone density increased quite well (10%) especially as I can't do much exercise due to other health conditions.

[Beatrice110924 in reply to WellThatHurt]

That's great, thank you so much for your feedback.I'm very grateful for every ones input and will definitely start Romosozumab all being well that the heart and lung tests are ok.

Wishing you all well