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New Rituxan blog

dsdmom

Senior Member
Messages
397
Hi lnester7 - at this point I am not comfortable sharing that information publicly.
 

Seven7

Seven
Messages
3,444
Location
USA
I understand, I am just wondering where and how we can get access to this treatment.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi, thanks for sharing the link to your blog - i look forward to following your progress and wish you all the best with the treatment.

In your background i noticed it said you developed problems after complications from childbirth - i wonder if you would mind sharing what kind of issues you had and wehter anyone has investigated the link?

Take care, Justy.x
 

dsdmom

Senior Member
Messages
397
Justy, my postpartum experience absolutely was the cause of my illness. It involved several life threatening hemorrhages, surgeries, transfusions, infections & a 3 months hospital stay. My body never had a chance to recover.

I've also just updated the blog with thoughts on my first week.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Thanks dsdmom. It sounds like it's hard to spilt up the reactions to the steroids and the reaction to the ritux.

Very good for you to write such a comprehensive desription under the circumstances. It really helps us now and in the future to know what it feels like.
 

dsdmom

Senior Member
Messages
397
Thanks ukxmrv. I know it is very hard to tease out what is what but I hope my reports can be helpful in someway. But maybe it will all be in hindsight down the road and it will be good to have something to look back on!
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi dsdmom, thanks for replying, i was wondering if you had experienced a severe haemorrhage, and wether they had considered Sheehans syndrome?
I have had two post partum haemorrhages and my M.E doc thinks i could have mild Sheehans syndrome (dysfunction of the pituitary brought on by trauma or PPH) I did manage to breastfeed, so i cant get an edocrinologist to take it seriously enough to scan my pituitary. The treatment is lifelong hormone and steroid replacement. I had to take steroids for a long while for lung condition and it really wrecked my immune system for a good few years, so they are no help in the long run.
Some people with Sheehans can have Addison style reactions to stress, surgery etc and my latest 4 year relapse cam after a severe infection and then minor surgery.
Sheehans can show up immediately or many years later.

Thanks for the blog update - i will try and keep up with it.
Take care, Justy x
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Thank you for writing such a great blog. I just wish that there were not these painful reactions to treatment for you. Looked again today to see if there was an update and yes, there is one from Thursday 13th. Sounds like you are dealing with the complications of the complications now. Adds insult to injury when this happens.

Just wanted you to know that I was thinking of you.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Me also, thanks for the blog posts, sorry your having such a rough time. I also have gastritis and have been waiting for over two months to be referred for an endoscopy. It's interesting the reactions you had to the PPI's - i had similar at first but stuck with omeprazole (not sure what that is in the US) and eventually the side effects lessened and have almost gone completely, i'm now on 2x day and at first the fatigue and dizziness where horrible. I do hope you find relief from all these problems soon.
Take care, Justy
 

ukxmrv

Senior Member
Messages
4,413
Location
London
New update

(quote)
Rituxan update: I met with my cfs dr yesterday and we decided to go ahead with round two. Although the gastritis was probably brought about by steroids and NSAIDs we think the scales may have been tipped by rituxan. So it is unknown if this will happen again but I'm praying it doesn't. I am scheduled for next Tuesday am
(end)

Wishing you all the very best for round 2
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
It took me a while to do the most recent update including the second round, but it is finally on there:
http://rituxanforme.blogspot.com

dsdmom,

You are a hero for writing this up while going through such a hard time. I'm glad all your tests were pretty much OK, but still...so hard!

I hope these symptoms subside soon and you have some better times before your next infusion.

Thinking of you, :hug:
Sushi