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@kecaj

Hello – I’m so sorry about your husband – it has to b devastating to lose your spouse. My wife was diagnosed with it last October – after chemo she seems to b doing better but now she is on oral immunosuppressants and they make her feel sick and very fatigue – we are at the point that she is opting out from taking them. Not sure if that is the right thing to do but she simply can’t function on those drugs

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Replies to "Hello - I'm so sorry about your husband - it has to b devastating to lose..."

It is a difficult decision to discontinue medications, however I understand. My first autoimmune was Sarcoid in 1977 after giving birth to my son 6 months earlier. At that time steroids were really the only treatmeant for the immune system and then trying to manage the organ problems such as breathing treatments for the lungs.
In 2007 my 20 yr old daughter was diagnosed with Crohns. That was the first time I started to find out information on the biologics and immunology suppressants.
After so many health problems from the medications taking her to death door, we decided the side effects of the medications were worse than the illnesses. She continued predisone slowly reducing from 300 mg to 20 to 30 mg a day. Even tho the prednsone has caused severe bone death in one foot and other bone and teeth problem the other health problems improved. She is up and down but the low blood count, liver function, cancer scares , abscesses and more are not there from the medications.
Again it is not an easy decision and I am not ADVISING anyone stop their medicine!
My daughter started researching alternatives and is now almost has her degree in Integrative and Natural Alternative Medicine and licences Health Coach.
She is involved with several organazitations and groups and if you are anyone is interested in her knowledge and research send me a personal msg and I will forward you the information.
I am not soliciting for business, She is an amazing resource and has learned because she had been living this with my Mom, her Mom and herself. Can it stop before my 3 Granddaughters reach 20????
Hugs

I don’t have Wegeners , my husband did in 2002 and he has passed in 2008 so I can’t answer your guestions, sorry

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