Every time that I have my Rituxan infusion, within a short time I have a bad

Psoriasis flare.  This makes perfect sense to me as NMO is B Cell mediated

and Rituxan depletes B Cells, while Psoriasis is T Cell mediated.

Right now, my scalp is really bad and the topical treatments aren't working.

Over the last year, I've lost over half of the thickness of my hair, and my

scalp is extremely itchy (I even scratch it in my sleep).  The injectable

medications are out of the question since I'm already on Rituxan.
Is anyone else dealing with Psoriasis and if so, what medications are you

using?
Grace 
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From Caring Bridge.

Written by Lisa McDaniel

The last 3 weeks have been a tremendous battle for Collin. There have been several times when we thought it was the end of the battle for him, but he is still here with us. It has been heartbreaking to watch him struggle for breath at times. He has times where he has very long pauses between breaths, times where his heart rate has been in the 30s or up over 100, times where his blood pressure has been extremely high. Through it all, Collin is still fighting to be with us. His body is very tired & worn. His body is slowly shutting down. He mostly sleeps now & we just try to keep him comfortable with meds. He is our Super Hero. The hospice nurses are here everyday. We have wonderful nurses & they already feel like part of our family. The whole staff at New Beacon has been very kind & caring. We appreciate them all so much and for their care of Collin & our family.

We will be getting more bracelets soon with a new Super Hero logo on them, so look for those very soon!

Our friends have graciously put together a Fundraiser/Sing/Supper for our family. It will be Saturday, Feb. 25 at Choccolocco Community Church. Spaghetti Supper will start at 5, singing at 6. Groups singing are: Clearvision, Crystal River & Hope's Journey. For more information, call Metha Dover 256-605-1033 or for information including donation information:

https://www.facebook.com/events/342490542440904/

Thank you so much for checking in on us. Please continue to keep us in your prayers as we continue to walk this path. Pray for peace for Collin and for his pain & suffering to end.

Yesterday I spoke with Michelle. She is currently still hospitalised. She did not have plasmapheresis yesterday as her fibrinogen level has been runnning low. She'll be in the hospital for a while yet, but is in good spirits. Please remember to keep her in your thoughts and prayers.

Grace

Please continue to hold little Collin and his family in your thoughts and prayers. He is close to the end of his NMO journey.

So many of us here love Collin. How could we help it? He's been a part of our lives for the last four years now. There's no braver little boy, and he has consistently dealt with his illness with courage and grace. He is our Super Hero. There are also no braver and more devoted parents than Lisa and Carey. I cannot even begin to imagine their pain.

Please remember the entire McDaniel family in your prayers.

Grace

Please accept my apologies for the Viagra Spam. It was sent out unawares by one of our members. It's likely that her email has been hacked.

Grace

Michelle D. has had her first plasmapheresis treatment. Currently there is a bit of a problem with her clotting ability, but bloodwork has been taken and the doctor's are on top of it.

Please keep her in your thoughts and prayers, and send postivie thoughts for a good outcome on her bloodwork, so that she can continue today with plasmapheresis.

Will be speaking with her either sometime this evening, or tomorrow ajd will be sure to update then.

Grace

Please keep our fellow member Michelle D. in your thoughts and prayers. She is currently hospitalised undergoing plasmapheresis, having experienced problems with her vision. Her first treatment is beginning very shortly. She will be phoning this evening and I'll be sure to post an update then.

Gracie

Hello all,

Just a friendly reminder. Please take advantage of the scholarly articles that are within the libraries. Watch the videos that are on the site. Learn from the literature---both past and current. Become a proactive patient.

I frequent a lot of different sites and receive a lot of calls from all over the world, and I am consistently stunned by the misinformation that is out there. Always when requested, I offer to supply Links to the specific literature or video that might help to answer a patient's query. Since the formation of the Guthy-Jackson Foundation research has blossomed, and strides have been made in the area of education. Still, there are many physicians who are unfamiliar with the disease. No, I am not saying that unfamiliarity with NMO means that a physician is not capable, and certainly one should always respect the opinion of their own physician. What I am saying, is that with a disease this rare, a patient really needs to take responsibility and educate themselves. Being forewarned is being forearmed. Familiarizing yourself with the literature is key.

As an example, I will use an episode from my own history. Several years ago, I left my home state and moved near Chicago. I was able to find an excellent neurologist at a prestigious facility. Within a few weeks of being there, I started to lose my vision. The neurologist was contacted, and I was advised to report to the hospital immediately for IV SoluMedrol. Upon arrival I told them that I was diagnosed with NMO, and after being processed I was sent to an examining room.

The ophthalmologist who came in to examine me looked at my medication list and said to me: *Mrs. Mitchell, why are you on Imuran and prednisone? Did you recently have a transplant?* I replied that *No, I have neuromyelitis optica and use the medications to prevent attacks of paralysis and blindness.* He said to me: *Mrs. Mitchell, why would you think that you might become paralyzed? And why are you requesting IV SoluMedrol? Neuromyelitis optica is a disease of the eye and most attacks of Optic Neuritis resolve on their own.* I insisted that the neurologist be called immediately. Within a half hour to forty five minutes, I was hooked up to IV SoluMedrol.

What's the point of this story? Simply that had I been uneducated about my disease, I might have taken the physician at his word and gone home without treatment, which could have resulted in irreparable damage to my eyes.

So folks, please read. Yes, I know that in the beginning it's difficult to understand the research articles, but the more you read the easier it becomes. Take responsibility and become a proactive patient.

Grace

Here is Lisa's update.  There are no words.

Collin's Journey

It seems like Collin's journey is taking a route we don't want to go go

down. He has changed so much today. His breathing is bad & his heart rate.

The docs & hospice say he is on his final journey to leave here. Our hearts

are very sad & broken. We cannot imagine our lives with out him. Please keep

praying.
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Hi Cherie,

There actually hasn't been a lot of posting as of late.  I know that

everyone has been very concerned about Little Collin.  Sometimes whenever we

have a few members who are really struggling, it goes quiet.
Yes, the two blanks were sent by one of our members----her account was

hacked.
Gracie
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Spectrum is the new home of Devic's Support
View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/
To change your Spectrum options or unsubscribe to this email list please visit http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings
Read Frequently Asked Questions: http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/
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