Pemphigus and CLL

[DivineLight]

Hi all, since the last time I post my life has not become easier, still struggling with everyday living, not eating, not talking... Until today we all believed that my problems were caused by Stevens Johnson Syndrome, but today after having a skin biopsy it was confirmed that I have Pemphigus on top of my CLL. What i managed to read on line about it, was not a good news.

I was wondering if anyone has had this experience. I know is a long shot again as is an extremely rare condition.

Thank you again to all for the support.

[Ballyhoo77]

Praying for a good outcome.🙏

[Name-1]

For Pemphigus is Rituximab.

[DivineLight in reply to Name-1]

i am on Venetoclax 400mg and Obinutuzumab infusions, had so far 3, and due another one next week. Also having high dose of Prednisolone. Can they add what you suggested on top of it?

[Egarcia]

Hi,

My father had PNP that lasted a couple of months but got better overtime once they switched him to ibrutinib 280mg and prednisone (he was previously taking 2 doses of fcr). Now he maintains a daily dose of 20mg and it's been about 3 years since he had it. They mentioned it can be caused by the cll itself. He was able to get help from a very good dermatologist and cll specialists. Wishing you the best of luck and please watch your blood sugar with the high doses of prednisone.

[lankisterguy Volunteer]

Hi DivineLight,

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That sounds really painful and scary, I'm so sorry for you.

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This link will take you to the list of 5 times Pemphigus was mentioned in previous postings in CLL Support :

healthunlocked.com/cllsuppo...

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And this link lists all 12 times Phemphigus was mentioned in any Health Unlocked community including ours:

healthunlocked.com/search/p...

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I hope the docs can find a treatment that reduces the symptoms.

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Len

[U2me]

Dear Divine Light,I don't know if what I have to say will help you in any way. My husband has CLL and prostate cancer, which we think was triggered due to chemo treat for the CLL.

My dad had Pemphigus. It is indeed a rare condition.

He was given immediately 60 mg of prednison and after a while they gradually brought it down to 5 mg.

He was on 5 mg prednison for many years.

Later he got a lesion, sore, on his toe and he went on 20 mg.

He lived many years with the pemphigus.

He died at the age of 84 and not because of pemphigus.

Have faith. If they give you the right treatment the pemphigus can be kept under control.

There are however different forms of pemphigus.

My prayers are with you.