[AmelieParticipant]

Thanks for your reply, Vicky!
Sure they should also have checked you for mm earlier. I know there can be different symptoms, my point is that there is only checked for mm when other options have been left out and that is too late, especially when it is so simple to check.

[AmelieParticipant]

Thank you Dai and Tina for the replies!

Why in h… don't all the GPs make a blood test if people have serious back pain?
The more I dig into this disease the more frustrated I get because of lack of awareness, slow access to new treatments etc. 🙁

[AmelieParticipant]

Thank you! It is good to hear that you don't feel any serious side effects. As far as I have understood it is at the moment mostly used for relapsed patients and there are very different opinions on using it before the relaps. I wish it was more simple!

[AmelieParticipant]

Dear Roz, I am so terribly sorry to hear about your loss. You have done so much and been a fantastic support for Michael. My heartfelt condolences.
Love
Amelie

[AmelieParticipant]

Thanks for your reply, Gaye!
And good that your GP was awake!
My friend John went to the doctor with his back pain and was sent to the physiotherapist. Only when he couldn't get out bed anymore he was taken to the hospital and after faulty diagnosis of lung cancer they finally detected the mm. I can't stop thinking that if they had thought of it before his two vertebraes could have been saved 🙁
Although it is a rare disease, it should be standard to make the blood test in cases of serious back pain.

[AmelieParticipant]

Thanks for the tip – I will call the nurses. 🙂

[AmelieParticipant]

Hi everyone,
John went to see his doctor this week and asked about the Revlimid maintenance. The doctor said he is monitoring the development closely but for the time being he doesn't recommend it to patients since it has too many negative side effects, which a new American trial had proved.

I don't understand that, because I always saw Revlimid being described as "mild" compared to thalidomide, and in any case it is only given in a very low dose when used as maintenance.

Has anyone an idea about that trial or what serious side effects it could course?

Mari, I am looking forward to hearing what Stephen's consultant said.

Love,
Amelie

[AmelieParticipant]

Dear Bridget,
I am sorry that you have to go through this and I send you all my best wishes.
Love,
Amelie

[AmelieParticipant]

Thank you Gaye, and all the best wishes to you too!

I don't know what I would have done without this board. Life has changed a lot since my friend John was diagnosed in March.

Luckily it goes him very well now. He got his sct back in August and now he is working half time expecting to work full time in February. Despite some eczema and some stiffness in the back due to the 2 collapsed vertebraes, he feels almost like normal. Hope this can give some hope to those of you who are going to have the sct or just had it.

I wish you all a wonderful Christmas and New Year!
Love,
Amelie

[AmelieParticipant]

Dear Roz,
I am terribly sorry to read this – it must be so hard for you. Please receive all my best wishes.
Love,
Amelie

[AmelieParticipant]

Thanks again – you have been a great help!!!

[AmelieParticipant]

Thanks for your replies!
Mari as far as I have understood Revlimid has less side effects than Thalidomid, so maybe it would be worth fighting a bit for it? When given as maintenance it is only a low dose.

Love,
Amelie

[AmelieParticipant]

Thank you! He is going to see his doctor next week, so I will tell him to ask for the Citrazine.

[AmelieParticipant]

Thank you Bridget, I will tell him to ask them.
Love Amelie

[AmelieParticipant]

Thank you! Do you feel any side effects from Citrazine?

My friend has been lucky not to have any infections since his SCT. However it is bleeding when he is blowing his nose.

[Author]

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