(Part 4!) After 5 months on Forsteo: Dear... - Bone Health

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(Part 4!) After 5 months on Forsteo

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Dear Friends,

from

Steve, on behalf of my (still) gorgeous wife, Margaret.

We both wanted to wish you all a belated Merry Christmas and a Happy New Year and in addition Margaret and I want to thank you sincerely for all the kind support you gave her a few months ago.

Margaret has been taking Forsteo now for about 5 months. As an observer, it clearly hasn't been easy for her and then backed up by her daily descriptions of what she feels ( we keep a diary) it is clear she is persevering with just about every side effect this drug can throw at her. I know Margaret is aware that this drug is currently the ONLY one available to her, given her complex medical conditions.

Her very supportive GP has prescribed Epipens and Ventolin inhalers because very quickly, Margaret's history of adverse reactions to drugs started to repeat as she began to have breathing difficulties with the start of asthma symptoms and lung problems following her morning injections. This was alongside wicked nausea and heaving. After weeks of the very worst side effects, Margaret's perseverance seems to have paid off in so much as, yes she is still having side effects including Asthma to a lesser degree, but today they are in the form of bone pain particularly in her spine and thighs, dizziness/ off balance and very strong migraines.

All this is of course alongside other chronic conditions including INOCA which causes spasms in her veins and frightening chest pain and arrhythmias.

Our next concern of course, is what to do when Forsteo is no longer available to her.

When I last wrote, Margaret had applied for PIP. After 5 months we heard that she had qualified for the basic rate, so that will be of some assistance. Following the award, Margaret applied for a blue badge and on a happier note, we couldn't believe how swiftly it was dealt with. From start to finish was less than 2 weeks.

The last thing that Margaret wants to share with you ( as it may help someone in the future ) is the matter of pain relief. Some of you may recall that Margaret is allergic to all pain medication due to severe allergic reactions. It is still very early days but nonetheless there are some glimmers of hope that Medical Cannabis products may be starting to help.

This is available on private prescription from The Sapphire Clinic. Margaret approached them with the blessing and assistance of her GP and just like any other 'medicine' has started on a very low dose of drops of oil. Even this has initially given her some side effects, but she has built up slowly over a number of weeks to the dose that the clinic wanted her on. Her current prescription is a very potent, high quality CBD oil without the THC component of the plant. We expect her prescription to increase over coming weeks and we'll keep anyone interested, up to date with her progress.

Our heartfelt thanks again to all of you who have taken the time to 'listen' share and give your valuable time and support. All of you are dealing with this awful and what Margaret describes as an 'unappreciated' disease. We wish you all a safe and comfortable year ahead.

Warmest wishes from Margaret and Myself.

6 Replies

Thanks for the update, Margaret and Steve. Margaret, you certainly face many complex challenges. How daunting to be allergic to pain meds. It's encouraging there are early signs the medical cannabis is helping with pain relief. I hope you derive a strong benefit from that as your dose is increased. It's thoughtful of you to want to share your experience for the benefit of others.

Returning your wishes for a safe and comfortable year to come.

Thank you so much. We have just sat together and read your kind post (twice!) Margaret's next online consultation with the clinic has been booked for this Thursday. We're discussing whether there will be a change of prescription or whether they may keep Margaret a little longer on her current dose. Clearly it may take a while before the optimum dosage is achieved, but if cannabis products could just reduce her pain level and then keep it at a more acceptable level, then that would be a big step forward.

We both send our warmest wishes to you.

Well done making progress on some logistical matters. Glad the Blue Badge makes getting around easier. Anything that reduces pain and helps with sleep is fantastic, so I hope the cannabis can do that for you, Margaret. There's no question that restorative sleep is one of the best things we can do for ourselves. I hope Thursday's consultation goes well. It can be hard to be patient and go slowly, but I hope it pays off in the end. I'll continue to hope that things improve. Best to you both, Margaret and Steve.

Dear Margaret and Steve, thank you for your latest update. You both sound very positive about it all although it would be easy to feel life is so unfair at times. I’m so glad that Margaret got her blue badge so quickly. Hopefully that will give you freedom to go somewhere nice for a change of scene when she feels up to it - even if you just stay in the car. Hopefully she will be able to tolerate the medical cannabis and it will will be the answer for her and give her a break from the awful pain she has been in. I know it can make a huge difference to some people so fingers crossed Margaret is one of the lucky ones.

My very kindest wishes to you both - here’s to a less painful 2022 for you both. 💐

Thank you very much for your reply Fruitandnutcase ! The blue badge is such a help and I have been very worried about Margaret getting in and out of the car in tight spaces as she mustn't twist or bend. No matter how much care one takes in finding a 'better' parking space, by the time we return to the car, adjacent vehicles have changed. Then of course there is the issue of how much power she has to walk. Margaret's range and endurance can vary widely from day to day depending on how much pain she is in.The medical cannabis we hope, may improve pain levels and quality of sleep but I think it will be a slow journey to reach the best dosage for her to tolerate. Margaret's cardiologist, Prof. Juan Carlos Kaski, kindly phoned us when we asked his opinion on starting cannabis and the effect on Margaret's heart/vascular condition. He is very supportive and assures us there are no contraindications. His advice is and always has been with any medication for her, to be slow and patient.

Thank you again for your support and kindness

Warmest wishes from us both.

Gosh I know exactly what you mean about parking. Im not nearly as bad as Margaret and there is no way I want to twist. We parked well away from everything else in the car park yesterday and came back to find someone just inches from my door. I usually get my husband to drive out of the space so that I can open the door properly. It’s funny how often there will be masses of empty spaces yet some bright spark comes up and parks right next to you.

Margaret’s cardiologist sounds a real treasure, hopefully she can get to a point where the medical cannabis helps both the pain and her sleep, decent sleep makes life so much better.

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