[Mysticred]

Monday evening I got a call from Genentech Inc. This is a group that has taken on paying for my rituxan. This wonderful group is enabling me to get the medicine I need, since without the rituxan I has no other medicine to fight my lupus since I have managed to cover them all. Those that worked went after my kidneys, those that didn't work only made things more difficult for me living with my lupus.

The young lady that called me Monday said she would contact my Doctor and set up him receiving the drug. I was so gratiful I started crying when I was talking to her and inturn she did the same. After covering some emotional information she told me 'this was something I did not need to stress about that covering the rituxan was now in their hands.'

I felt like a ton of weight had been lifted from my shoulders. Now I am waiting for my doctor to get the drug and call me for my first infusion. I feel like all my eggs are in this basket and I have said so many prayers that this will work for me.

And now some bad news, for you that read all about my Granddaughter Sierra, I am sorry to say she suffered her first siezure since her brain surgeries two months ago this past saturday it last 14 minutes. We are now waiting on her doctors in texas to inform us what is next. If it is not one thing it is a million others. But I have faith that God has not brought this little girl this far and will now let her down. I believe with all my heart she is safely in God's hands and he will protect her.

Thank you for letting me share my good news and my bad news.

 

[lazylegs]

Hi Mysticred,

Sorry to hear about Sierra. I know you were hoping the surgery would take care of everything.

Congratulations on the Rituxan though. Hopefully it works really well for you. Let us know when you finally get a date for your infusion.

Take take,
Lazylegs

 

[keebler]

Mysticred,

That is so awesome that a company is covering the cost of rituxan.
I hope and pray that it works for you and you get the relief that you need.

Your bad news broke my heart. Your poor little granddaughter. It is good that she was seirzure free for two months. Seizures are so very scarey and lasting 14 minutes. Seirra had to be so wiped out from her seizure.

You and your family are in my thoughts and prayers.

Huggsssss
Lyn

 

[Katharine]

That is wonderful news about the rituxan. I can understand that you cried when they told you it must have been such a relief and gives you new hope.

sorry to hear that Sierra has had another seizure - keep us posted.

Katharine

 

[flutterbye]

I am so happy for you that you will get the rituxan, I can imagine how you felt, I hope they get it organised soon, and that you will do great on it.

So sorry to hear of your grandaughter, you and your family will be in my thoughts.

Much love xxx

 

[neongirl]

I'm so happy to hear things worked out o.k. for you to get the rituxan, I hope it turns out to be your miracle drug .
I'm very sorry about Sierra having a seizure, and will keep her in my prayers .

 

[Mysticred]

the 28th of May

I see my Rhuemy ths 28th of May to start setting up my first infusion. I am on a roller coaster of emotions, which is crazy I think....

But first let me tell you what Sierra's doctor has decided to do. He increased her meds back up to half the dosage of what she was on before the surgeries. He believes she was under some emotional stress due to the fact she was dealing with her favorite sitter passing away last week. But he did say if she has another one she will need to return to Texas for more test and possibly yet another surgery. We are all praying it was just the stress she was going through. When I talked to her, I told her that Ann was in heaven now with God, and that she was an angel and because she loved her so much she would be Sierra's special angel that would watch over her. It seemed to cheer her up some.

 

[neongirl]

Thankfully the 28th isn't that far away, so hopefully you will not have to long left to wonder how things are going to go with the new med.
The death of a favorite sitter surely would be stressfull to a child . I hope the meds take care of things and no further interventions are needed. Prayers and Hugs to you both .

 

[macfamily53]

Mystyicred

I am so happy for you that you did find someoneto cover the cost of the infusions((((hugs))).I pray the drug work for sure this time.Please keep us imformed on how you are doing with it.
I am so sorry to hear of your grandaughter is still strugling with the seizures and really pray they figure it all out and get them under control. The poor baby but it sounds like she has some very good doctors and lots of prayers also for her and you both((((hugs)))).

Tammy

 

[IBDOROTHY]

mystyicred hope your granddaughter is doing better.
i am glad genetech came through for you. they saved me too. my dr had been trying to get my ins co to approve rituxam since 7-06 since i too failed to respond to any of the other meds including metho, cellcept. they said no since it wasnt fda approved for sle/mcdt etc. diseases. so my dr kept trying drug combos and i continued to suffer but not due to his lack of trying. after reading a nyt article that only 4 or 5 drugs have been fda approved during the last 40 yrs for the treatment of sle. i finally called united healthcare and went "off" and challenged their reason i was given for their refusal to provide/pay for treatment. i told the rep that their fda approval excuse was an insult and quite comical since i have been on drugs for malaria, cancer and kidney transplants without being diagnoised with any of those disease(s) and the meds not being fda approved to treat sle. i told her as we say in texas "that dog an't gonna hunt" and we were not discussing fda issues but one of $30,000.00 for the first 2 infusions. during this time my dr made contact with genetech who agreed to supply the drug for free. yes, they were a god send and i shed a few tears over my windfall. i just had my 2nd infusion was on the 6th of may and after alot more fatigue then after the 1st feel like i have a 2nd wind. i am praying that this is a sure sign the drug is doing "something" so i just sleep when my body tells me its tired. i have bloodwork next week and see the dr on the 3rd. i am really, really hopeful that this is going to help with some of the symptoms. there are just too many for it to fail at working on atleast one or two of them!!
anyway, best of luck on your infusions. i had no "bad" side effects they warn you of. energetic for 5 days after the 1st infusion then 3-4 days of more than usual confusion, then 'normal' again. 2nd on the 6th was not so easy, just alot of joint and muscle pain and very very tired. i think i am just tired now. so all in all not too bad of an experience considering everything i could have had the pleasure of experiencing.
and 3 cheers for genetech!!

 

[karen.w.]

Hi mysticred

I'm so glad you are able to get the infusions!good luck on the 28th,I hope you receive some relief quickly.

I'm so sorry to hear about sierra,I will keep you all in my prayers..sierra is a brave little fighter I'm sure she will be fine!..stress causes havoc with our health so It most likely was the cause of her recent seizure...big hug's to her :hug: she has been through so much.

please keep us updated
love to you all....karen x

 

[Mysticred]

July 10th is my first infusion

My doctor called me last week and said lets skip the appointment, rest as much as you can and come see me July 10th, I am suppose to have the drug by then. I told him I freaked and he said that is very normal, but I needed to remember this is a whole different ball game and he had alot of hope in. So from there I will keep you informed, I was told to be there at 8:30 am and expect to be there 7 hours, 6 hours for the infusion and time to set up and watch me after. I was told to bring a book, breakfast and lunch and what ever else would keep me amused. Ok how does one read when they are sitting there wondering Please God will this work, please God make it work, oh and thank you Genentech for being the womderful people you are.

Sierra has a rough weekend, two more seizures. They now have her on yet another seizure med and Valium (spelling). They want her to take this new medicine and the Valium (again if wrong excuse my spelling, if correct Thank you my spelling teacher) for a week. Once she was started on it she slept most of sunday and sunday night, adjusting to the meds is what we were told. There is a CTscan set up for July 3rd. If it is not good news, Sierra will return to Cook's childrens hospital in Texas and again begin a long series of test to determine where these new hard hitting seizures are coming from. I pray with all my heart, that this new drug works and not another surgery is needed so close to the others. I pray with all my heart that God sees he has put this beautiful child through enough and finally allows her a much easier road. But if this is not the case we will accept what is dealt us and help Sierra through it all. All that matters is she walks away from it all and is still our beautiful little redhead that we all have grown to love and admire for her strength and beautiful never ending smile.

ok that is the entire update for now....I hope everyone had a wonderful holiday weekend, and to those that it was not a holiday weekend, I hope your nonholiday weekend was just as wonderful.

And IBdorothy thank you, your posting made me see just how lucky I am to even recieve this chance and to think postitive thoughts instead of letting bad ones take over. I hope you continue to get better and my thanks go out to you and everyone else with what was supportive of me and my freaked out moments