Good news!!!

[flowergarden]

Hi, Y'all. I haven' t posted much lately, but I've been around.

I've been seeing a neuropsychiatrist (who has the biggest ego I've ever seen but is very good). He had me do an ambulatory (3-day) EEG. While every other neurologist told me I had either no seizures or the spike was an anomaly, this doc found that I'm having 7-8 every day--despite the anticonvulsant and benzodiazepine I've been on. The seizures go right on through the time I'm on the benzo.

He's started me on another anticonvulsant, which I'm having some minor reactions to, but we'll see.

Since the seizures are in the left temporal lobe, and he feels I've had them for a long time, the doc thinks that's been a significant source of my refractory depression. The seizures can cause the hippocampus to shrink, and that area of the brain affects mood.

The good news is that my rheumy has decided that since the Cytoxan, methotrexate, Imuran, and CellCept haven't worked, he wants me on Rituxan. I was thinking, "OK, as long as you have a fairy godmother to pay for it". I also go on Medicare in December, and there is no way I'll get it then.

Today I went on my insurance website and now they cover Rituxan without prior permission.

I can't believe it. In case any of you want to know, my insurance is Regence/BlueShield in the NW part of the US--WA, OR, ID, and UT.

They've even started to cover MTX and the sharps.

In case any of you are getting a port put in, go for a chest port rather than an arm port. the chest ones don't wiggle around, and they have a bigger surface to "hit". The nurses seem to groan when they see my arm port.

At this moment I'm a happy camper. I'll see what tomorrow brings... style_emoticons/<#EMO_DIR#>/cloud9.gif

[Raglet]

Sue, the rituxan sounds fabulous (if you can tolerate it) but, I would also be very careful and whatever the website says, I would go for prior written permission. Or at least a written statement that rituxan is covered with no prior permission for lupus. There was someone on this site who had prior verbal permission then got landed with the bill (last I heard she was still fighting it out). Rituxan seems great for active disease, I had been hoping that it would prevent further damage but was warned that I have permanent damage and it wouldn't improve that. But preventing further deterioration is terribly important, so go for it ! Just thinking also that rituxan is becoming quite standard for non-Hodgskins lymphoma, so check that the automatic approval isn't just for that.

I haven't had any problems with rituxan going into a regular temporary catheter, it was just what happened when my body absorbed the stuff that was the problem. But don't let me put you off, many do really well on it (I always react to everything). I do hope you can get rituxan, and fingers crossed it helps

raglet

[helloos]

Hi Sue. It sounds like your doc is a keeper. Someone who is finally putting it together. I hope that the new seizure meds work and you can deal with the side effects you are having.

As for Rags advice about the Rituxin, I would get an ok too. Maybe a phone call with the persons name, etc. or in writing is good too just to be sure. You just never know with the insurance companies. Also print out that page and keep it too.

I am glad that some things are looking promising for you. Let's keep our fingers crossed and hopefully all of this work and you will feel better.

style_emoticons/<#EMO_DIR#>/foryou.gif

[bugsy]

That is wonderful news for you i really hope it works and you start to feel alot better - I like good news it puts a smile on my face
Good luck and take care XxX Jo XxX [img]

[tbunny1]

You were due for some good luck Sue, with all you have been through lately. Glad the neuropsych found the seizures, and hope you start to get some relief soon.
Tracy

[flowergarden]

Thank you all for your wonderful replies!

Raglet, I too have irreversible damage, but we're hoping to keep things from getting worse. I also react negatively to most every med passed under my nose ( my doc calls me a "squirrel"). So I"m a bit skeptical about my ability to tolerate it. but I want to try!

I'm aware that the Rituxan may only be approved for use for B-cell lymphoma or RA, but I can see what they'll say. They still have to give permission for Remicade, which surprised me. I thought Rituxan cost as much or more.

My insurance has new coverage for those with chronic illnesses, and this is one of the changes they made. Gads, I wish I could keep the insurance (without the high premiums). I've been pretty discouraged looking at the Medicare coverage I'm going to have in December.

Incidently, Raglet, one of my docs said that he thinks New Zealand has one of the best medical systems in the world. Is he right? Maybe you're not the right one to ask, seeing as you've had so many problems getting the Rituxan.

Thank you all again! style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/flowers.gif

[lazylegs]

When I first called my insurance about Rituxan they said i didn't need prior authorization. When I said it was for Lupus they said I wasn't covered because it wasn't FDA approved. The doctor kept fighting and finally got preauthorization. Even with the preautorization they didn't pay for 6 months so the hospital was hounding me. I hope for your sake it is covered. Even though I didn't go into remission I am doing much better than before.

Take care,
Lazylegs

[raggedyann1]

Sue,

Get medigap insurance with your medicare. You have 6months from the time you start medicare to get medigap insurance if you don't do it then you have to wait until your 65. Spend time checking out every single company that offers medigap in your state. I saved myself over $100 per month by doing the research and calling every single one that offered medigap f in California.

Next check all the prescription insurances that are offered in your state as well. Most of them are national and you can compare plans on the medicare site.

The big difference on IV treatments like Rituxan and Cytoxan is where they are done. The coverage is much better when in a treatment facility as it goes under medicare part B and not the RX coverage.

I certainly hope you can get Rituxan before then but don't automatically think you won't get covered with any of it with medicare.

Let us know how things go.

Take care,
Karen

[flutterbye]

I just wantde to wish you luck, I don't know about the insurance side of things, we have a different system, but I am also waiting for my docs to get approval to give rituxan, I think the problem lies with it not being an approved drug for lupus treatment, and for me there are some specific problems with the trust that approves and funds treatment. I so hope that it works out for you, I want to hear how you get on!

[flowergarden]

Well, here's the good news: I did copy the page from the new Rx co. Then I called my ins. co and we hhad a three-way discussion and clarification about the Rituxan. the short of it is that it IS covered by co. The Rx will cost me $40 each infusion plus doc and facility fees (I pay 10% of that). IT IS APPROVED FOR OFF-LABEL USE! All my doc has to do is order it and we can start, as long as I'm not anemic (which I was recently).

However, they will not cover the MTX and sharps,:mad: , but that's not too bad, as it isn't v ery expensive.

Raglet, Paula, Jo, Tracy, Lazylegs, Karen, and Flutterby--thank you for your encouagement. I truly appreciate it. It means a lot coming from friends like you.

Karen, what you said about Medicare is a great help. I know n Sept. I need to look t my optiona more closely, as I go on Medicare in
Dec.

Flutterbye, how is it going for you? I worry about you.

Raglet, I admire you tremendously. And I like your encouraging posts and your humor.

It is getting so hard for me to type anymore, partlyh because my fingers don't go where ai want themj to, and partly because I'jm starting to not recognise familiat things very well. My hands are getting so shakey thattyping and writing are gettingstressful.

The neuropsychiatrist says this insn't unusual, and that's why Iwant to try to sow down the progression of this dieseas--before I have othing left mentally. I already spend moist of my dayso confused.

Thank ou all so much fo your encouragement.:)

[lazylegs]

Wow, that is some insurance. I am so happy for you. Let us know when you find out the date of your first infusion. If you have any questions about the rituxan infusion just pm me.

Take care,
Lazylegs

[flutterbye]

:) Wahey Sue, I am so pleased that you will be getting it, hope you get the docs ok and get started soon, and I so so hope that it helps especially with the np stuff, I am really really pleased and hoping that it works out well. I don't want to hijack your thread, but.....I got told today that I will be having Rituxan too!!!!:rotfl: I haven't posted much lately, I am not always sure which side of sanity I am on, and sometimes I don't know if my words and behaviour is a bit out of whack, if you know what I mean, I can empathsie with the difficulty with typing, with me it seems to be difficulty in reading words and with writing, my typing is actually loads better than my written stuff, but I think that mostly I am muddling through, thankyou for asking how I am, I really appreciate it. I will be in touch, I am hoping for good things from Rituxan, actually I am really excited about it, and excited for you too, do let us know when you start and how it goes, it would be good to comprae notes!!!! Love and hugs xxx

[flowergarden]

I got the official letter from the ins. co. that says they will cover the Rituxan for me. All the doc has to do is order it.

The doc had sent in a request, and the ins. co. said they didn't need prior authorization. Woo hoo!:):)

Flutterbye, let's keep in touch about this.

[lazylegs]

Congratulations Sue. Most of the results have been positive so far. I will keep my fingers crossed for you.

Take care,
Lazylegs

[flowergarden]

Thanks, Lazylegs. How long did it take for you to notice a difference? I'm pretty excited. I see the rheumy next week. :):)

[lazylegs]

I took longer than most. It was 4 months before I felt the effects. There was no remission but it did stop the progression which was great. I function much better than I did in the past. The doctor really thinks we dodged a bullet. Let us know when you find out the date of your first infusion.

Take care,
Lazylegs

[flowergarden]

Lazylegs, it's good to hear that you're functioning better. My dementia is getting so bad that I can't imagine it getting much worse, although I know it could.