PDA

View Full Version : New to all this but day by day I am hoping to win out!



wizard0562
09-25-2009, 02:29 PM
Hey everyone, Craig Moshier, out of El Paso, TX.

It appears that we all have WG and all the differences that come with it.

I was sent to the Hosp on Aug, 17, 2009 unable to breath, swollen Hands and feet with amazing pain and was told that if I had waited much longer I was a goner. It was found that my Kidneys, lungs "?vascular?" something or other and sinuses had just caused me to stop breathing regularly and I was admitted immediately.

Sinnce then it turns out the WG is slowly shutting down my kidney operation... I had pneumonia for 6.5 weeks without any symptoms and the sinus issues I had for 4 years could have been used to diag this and make it a bit easier to deal with. OH well... such is life.

I was, after every specialist, RN, Kidney Doc, respiratory doc and even a few oncologists from local other hospitals got involved, diagnosed with WG causing failing Creatinine levels that I was up to 5.2 plus (supposed to be like 1.0 to 1.4?) . And my size 11 feet don't even fit a 13 tennis shoe with the laces all pulled loose.

I was immediately placed on Cyclophosphamide and Prednizone (and about 7 other really unimaginable drugs) to which everything got worse and I was immediately re-admitted.

It was at that point that Rituximab was recommended and administered while I was still inpatient. I saw almost immediate relief... not like instant "everything gone" but the Creatinine levels started to drop and the swelling was going down.

I was sure this was the answer and was so relieved. Then I was told that my insurance would not cover the Rituximab as the FDA did not support it for WG in the US and that it would cost me a horrendous amount. (10mg @ $600+). My dosage was to be like 1000mg.

Just to let you know... Everybody involved jumped in on this one including me. Even the RN at the Ins Co. did.

Why not pay for just the Rituximab in an outpatient fusion center through the oncology ward here... cheaper... NO? OR you could have me inpatient for 2 days for the treatment and observation... cost even more...NO? Or I could go onto dialysis and wait years for a transplant that would cost them $$$millions??? or close... cost even more... NO?

As of today, I was approved by the Insurance Company for outpatient services at the oncology center here. Starting tomorrow I will be beginning the Rituximab process over the first 4 weeks and the Prednisone lowered as improvement is achieved.

Hopefully the FDA accepts this as standard and WG is allowed Rituximab for those that need it.

I will let you all know what goes on, but, this is the best day so far I have had since Aug, 17, 2009.

I even think there are Grants available through the Hosp here that would pay for the rest of the 20% I owe for the treatment.. I am going to look into it tomorrow.

Sometimes the group has to join as 1 to get these issues rearranged and allow some of of a beginning to life... again.

I will be in touch, Everyone... Have a great day... I know it is hard... but other things could be worse. The answer is there... just need to look twice and ask for assistance from everyone you can.

Craig Moshier:)

Sangye
09-26-2009, 12:09 AM
Hi Craig,
It's nice to meet you. You have a great attitude, which will help a lot in the coming days. I hope your kidneys come back on line all the way.

I'm glad the Rituxan is working so well for you. The ctx must have been really awful for them to consider switching you to rtx so soon.

I hope they explained that the "pneumonia" was more likely Wegs in your lungs? Wegs commonly looks like pneumonia--usually atypical/ viral pneumonia-- and many of the symptoms are similar.

Do you have a Wegs specialist involved (ie not just regular rheumy)?

The insurance thing is crazy. They'll cut corners now, even when they know for certain it will cost more down the line. They want the money now, and they're betting that you either won't survive to incur the greater costs or they'll find a way to drop your coverage. I wish I were making this up, but it's actually true.

jola57
09-26-2009, 01:07 AM
Hello Craig. I'm glad that things are getting better and that your attitude will get you thru the wors in fine spirits. Its funny (or not depending on how you look at it) how the things that would make us better with less toxicity and better outcome is the stuff that is so expensive as to make it unaffordable. Governments, an this includes Canada, have no problem approving expensive meds for HIV or cancer yet do nothing for Wegs or other invasive diseases. I know that in Canada a patient can ask for individual consideration for an unapproved drug with the doctors direction. Maybe it is possible in the US as well. Do try. Maybe we give up to quickly and dont fight hard enough to have the government give us our due.