Author Topic: AL amyloidosis and IgM myeloma  (Read 1771 times)

Anna L

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  • Posts: 1
  • Reason for joining: Patient, AL amyloidosis, IgM
  • Diagnosed: 2015
AL amyloidosis and IgM myeloma
« on: November 23, 2019, 12:41:30 pm »
Thank you for an interesting forum.
I was diagnosed in 2015 with AL amyloidisis and IgM myelomatosis. Do anyone have the same combination? I ask because IgM is usually seen with Mb Waldenstroem.
Treatment with CyBorDex did not work, but luckily high dose Melphalan and SCT did (2016, not CR). However, my numbers have started rising again. So my next question is: which treatment may be suggested?

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: AL amyloidosis and IgM myeloma
« Reply #1 on: November 23, 2019, 04:53:12 pm »
Hi Anna,

Welcome to our forum.

I find you case interesting as I have IgM related amyloidosis with a low grade Waldestroms, which apparently affects about 5%. I didn’t know that there was such an IgM variant as IgM myelomatosis. If you don’t mind my asking how do these diseases affect you?

In my case I have no internal organs affected as my amyloid protein deposits are in the soft tissues, skin, mouth, palatine nerves, submandibular glands, & in the conjunctiva tissues of both corneas. Diagnosed in 2004 by my excellent local Haematologist, he promptly referred me to the NAC for my first clinical evaluation which in June this year meant my 14th.

The NAC say my case is unprecedented & tho’ the 2 Rituximab based treatments have kept the underlying diseases under control I’m definitely not well because of the overwhelming salty taste in my mouth from damaged palatine nerves which make talking & therefore daily & social life very challenging indeed. Amyloid in my eyes means I have acute visual stress which means I live in permanent semi-darkness with the curtains partially closed & wear sunglasses both indoors & out plus a wide brimmed hat outside & anywhere where there is fluorescent lighting.

At present after breaking my femur in June 2018 I have been struggling with lymphadema/odema which won’t seem to go.

I shall start therapy with a new Lymphatic Drainage Massage therapist next week who practises Low level lite Laser therapy so fingers crossed it will work. 🤞🤞
Pat