Renee Sendelbach Another GVH flair
Well…I don’t think it is classified as “another flair” being as it hasn’t fully gone away since it started in April…so I guess I should call it what it is…chronic GVH ?
Most of this year has been sh*t show with so many ups and downs with GVH.
It started one morning with my left eye being swollen shut. After determining it was not pink eye, I went to my optometrist who referred me to another eye doctor who didn’t know what GVH was, so I went to a third eye doctor who started me on steroid eye drops which were great but as soon as I stopped using them my eyes would get extremely dry, irritated and sensitive. Then at my August oncologist appointment, Dr. H referred me to another ophthalmologist who put eye plugs in my eyes (no it didn’t hurt at all) to help keep my eyes lubricated.
I had my eyes under control until the low-simmer-flair that has been here since April turned into a full out flair at the first of September. I finally admitted that I needed steroids to get it under control.
I started at 40 mg for 7 days, 30 mg for 7, 20 mg for 7 days, 10 mg for 7 days then 5 mg for 7 days. (If you have never been on steroids you have to ween off them slowly.)
I was only off them for a week until symptoms started again… dry eyes, skin changes, bad fatigue, and upset stomach.
SO, I am on my 2nd back on 20 mg of steroids for 3 days, 10 mg for 3 days and 5 mg for the foreseeable future.
I am so over all this.
It is really so hard to feel like sh*t for so long.
I am really hoping the low dose steroid is going to do the trick and I can get back to life.
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For those who don’t know, GVH is Graft vs Host disease which is pretty much an autoimmune disease and my white cells go into overdrive and attacks different areas on my body.
GVH is from my bone marrow transplant
