Steve on behalf of my gorgeous wife Margaret again!
Having had her first Forsteo pen sat in our fridge for weeks, we did start to dispare when we received a text from the Lloyds Pharmacy home care team stating that many of the nurses are absent due to Covid. We hope and pray they are absent because of instructions to self isolate rather than being very ill. Margaret took to asking for advice from her Endocrinologist by e-mail. In fairness he came up with two or three sensible suggestions and we were starting to seek our 'own' nurse in order that Margaret could start treatment.
However quite unexpectedly, we received a 'phone call from one of 'the team' and we are having a video call tomorrow morning to instruct us on how to use the pen. Apparently 'a consultant' had intervened with a 'phone call to ask why Margaret wasn't yet on treatment?
Prior to this and following a private consultation, Margaret was awaiting a CT scan with contrast dye to start to check whether there was any bone cancer which may be making her fractures so frequent and of course, to find out whether we could go ahead safely with the Forsteo. Having spoken to the radiologist regarding Margaret's history of Steven's Johnson Syndrome, she has decided that the threat to her health from a reaction to the dye, far outweighs the 'very unlikely' (as the consultant stated, ) possibility of cancer. In addition the CT scan was to be done in a private hospital and the radiologist pointed out, the lack of emergency assistance available there.
Margaret remains in a great deal of pain and although she is anxious to keep mobile and as fit as she can, the truth is that a wheelchair is the best option if we pop out to avoid cabin fever. Daily life has changed quite significantly and now in company with Margaret's other conditions, we have sent in an application for P.I.P.
We send this in the hope that you all are as well as you can be and once again we thank you for sharing your wealth of experiences and your good wishes. We are eternally grateful to you all.
Heartfelt thanks from us both. ❤️👼🏻🙏 💉⚡️😷
Written by
Angelicspirit
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Hello Margaret and Steve. What a time of it you are having! The Forsteo injection is so straightforward, it's a shame it has taken so long for Lloyds to arrange instruction. I have to say, taking the pen out of the fridge, fitting a new needle and recording the injection in the daily diary, takes so much longer than the actual injection. After a short while, you will find yourself not thinking about it.
Keep in touch and if you need to discuss side effects, I am happy to chat.😊
Hi Molly,Thank you very much ! Margaret is just asking , before she starts, have you found it more comfortable or 'easier' in your thigh or tummy? ❤️👼🏻🙏
It's equally easy to do the injection in either thigh or stomach. Occasionally, it will give a little sharp prick as it goes in and for some reason, to me, this seems to be more acute in the stomach. But I must stress, it's really okay. I was extremely apprehensive about injecting as I had never done this before but it's very straightforward. I do occasionally bruise but I think that's normal. 😊
I'm very sorry for all that Margaret is going through and the difficulty in arranging care. I'm so heartened she has you at her side, Steve. Take care, both of you.
Thank you so much! Margaret's biggest hurdle is whether she has a severe reaction to Forsteo. Her pain threshold is very good and I know she will persevere with side effects, but until she takes a new drug, we have no way of knowing if Stevens Johnson Syndrome is going to play a part as it has done in the past.
I see Forsteo is subcutaneous like Insulin. The stomach hurts less than the thighs (less nerve endings if I remember correct), and I used to take my daughter's insulin out of the fridge and let it get to room temperature before injecting...........less of a shock.
Hello, and how relieved you both now must be feeling after such a long wait.
It should not be like this, having to wait so long is unacceptable, there is such lack of comunication between the health profesionals and as a result we the patients have to suffer.
I injected into the thigh and did not have any bad reaction, unlike when I was injected with Prolia in my stomach I had an instant allergic reaction.
I have you in my thoughts in hope that Margaret tolerates this treatment well, and that in 2 years time there will be another new suitable treatment to be able to follow on with.
I have had all the tests possible for an underlying cause of my severe bone loss and always drawn a blank.
Many of the results have come back borderline, it is only natural to ask WHY ME?? never a smoker or drinker always fit and healthy with a good lifestyle and diet.
Our Son thinks I was perhaps abducted by aliens at some time and once asked his grandmother if I ever went missing for awhile!!!
Of course his theory is based on astronauts going into space and the bone loss which occurs as a result.
I agree Margaret needs to get out of the 4 walls which you begin to feel like climbing (Oh if only we could that really would be something, wouldn't it just)
Margaret, I hated being in the wheelchair and have to admit still hate it when I have to go in the manual chair.
It is a completely different world and so frustrating and disheartening BUT the chair acts as our new legs and without it we are lost.
I also have a power chair and I feel differently about it, I have my independance and can get about locally, I love it I really do.
We would have to change the car to enable me to use this all the time.
We also infested in a small mobility scooter which I can only manage for short periods of time, it can be dismantled easily and takes up very little room.
It was the best we could find for comfort and ease of getting on and off and is worth its weight in gold.
If your personal situation will allow it I would highly recommend you waste no time in considering the different options.
One way of keeping the price down is to go to a mobility shop and try a couple out then search online to buy direct.
Well all the best, Good luck, Stay safe and if I can ever help with any questions please get in touch.Xx
Hi Sunseaandsand, Thank you very much for sharing again and your continuing offer of help, it really is appreciated by us both. The video call failed this morning due to our ageing iPad having an ancient operating system. So, we were instructed over the phone. Not ideal but of course , as so many have said, once you've injected once, there's nothing to it. Now 5 hours later, Margaret feels like she's had a plug pulled. I suspect this is partly due to the new drug and partly due to a sense of getting past another hurdle and perhaps her body is relaxing a little.
May we ask you.... We were expecting Margaret to be on Forsteo for 2 years, however the prescription is for 18 months. Is this 'normal' and then reviewed or might it be to do with funding?
Please tell your son that there is some evidence that Margaret has indeed been into space. For instance, throughout our marriage of nearly 44 years, she regularly asks me "what planet are you from?" ( or on) and about 10 years ago prior to being diagnosed with osteoporosis she disappeared for about 36 hours. When I enquired where she had been she did mutter something about an alien but she was looking at me at the time. It wasn't the look that made me comfortable to ask what's for dinner ! I have checked this somewhat vague evidence with her and she has thrown ( of all things) a Mars Bar at me!
Thank you for the information on moon buggies... Sorry wheelchairs, we will have to think about what is best. I do know that Margaret would prefer to exercise and worries that sitting is actually doing her bones harm. She has always been very active but admits that she runs out of steam quite quickly now.
Sorry to hear of your video call problems, for me though it is a little reassuring just to know that not only I have all the bad luck!!!
I do understand how all the hassle wears you out and wears you down.
Margaret, hopefully you can put your energy into where it is needed now instead of having to waste it worrying about the things we should not have to.
When I had my course of Forsteo it was quite straightforward from the start that it would be for 2 years.
I have become aware by being on this forum that members are having the treatment for 18 months, I do not know why this is unless the guidelines have changed.
It is at the moment the best bone treatment available and rather a shame it can only be given once in any life time.
I do so hope you do well on it.
Thank you so very much for the banter it has brightened up my day and my wheelchair has now been christened MOON BUGGY.!!!!
I totally understand how important it is to keep as much of our mobility as possible.
I try to move around the home as much and as often as possible, for me even that is too much and I have a price to pay for it.
We have to push ourselves in the safest of ways.
Good luck you sound a lovely couple and will draw strength from each other to get through the tough times.
As ever you are both in my thoughts and I send much love to you both. You probally have already but if not apply for Attendance Allowance, just a thought. Every little helps! Pinklady 45 ♥️
Thank you! Your love and support are warmly received. We have just completed a PIP application. I understand that Attendance Allowance is for those over pension age and although I am, Margaret isn't. ( She claims I married a much younger woman ! )
Hello Margaret and Steve, I’m sorry that Margaret is still in such pain but it is so good to hear that she is at long last about to start her injections. It must be such a relief for you both.Keep us posted with how it all goes. Sending you both all my best wishes. ☀️
Hi Fruitandnutcase,Thank you for your kindness. Margaret is now fully trained in the art of stabbing herself, albeit the video link failed due to the ageing operating system on our iPad. When all is said and done, I think patients should have the clear option to just follow the instructions that come with the pen. Anyway, no nasty reaction. Margaret did experience hand tremors about 2 hours after taking Forsteo and now she is very tired. Happily, she is more than confident in being able to administer the drug.
I have asked this of another fine lady on here but Margaret's prescription is for 18 months not 2 years. Does that sometimes happen for a specific reason ,do you know?
Oh I’m so glad it went well, as someone who has an injection phobia (I’m ok with giving blood etc and I’ve had both covid vaccinations but that was definitely for the greater good because I’m sure I could quite easily carry on being a recluse) I’m very impressed with anyone who can inject themselves.
I don’t know but I imagine with the stress of it all and finally having got the drug and administered the drug she was so desperate for could account for her tiredness.
I’m afraid I have no idea about the hand tremors though or about the 18months / 2 year prescription though. I’m sure someone will come along and tell you or you could always contact the ROS helpline and they might know.
Hi Margaret and Steve. I am so glad to hear that it's actually happening for Margaret today. I hope all goes well with it - you must both be so grateful for the consultant's intervention. Thinking of you. Good luck. 🌈
Thank you for your kind post Springcross! Margaret is very tired 6 hours later and had some very obvious hand tremors 2 hours after starting Forsteo. We keep a diary for her heart condition, so will just keep an eye on how she ( hopefully) progresses over the coming days. We did find out today, which consultant was responsible for intervening and have sent our thanks to him.Thank you again, best wishes, Margaret & Steve.
I wish Margaret all the best Steve and hope she feels fine tomorrow, it must have been a bit of a stressful day for her today and maybe she's feeling a little overwhelmed as I inject myself for another condition and I remember my first time being a little nerve-racking to be honest. No doubt the consultant appreciated your thanks. x🌈
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Exercise DVD and K2 recommendations please
Any young people with shitty bones on this?
Prolia and Parathyroidectomy
