Article on the effectiveness on RTX

[Wegetarian]

Didn't notice this posted here. A fairly new article where they discuss that RTX would be quite effective and better at targeting the specific cells that cause us problems and allow us to drop the other meds quicker. Very short and easy to read summary of the study :)

"Rituximab depletes the body’s supply of cells thought to be responsible for ANCA production. Rituximab is a more targeted approach than the current standard of care, which involves nonspecific immunosuppression with potentially severe side effects."

"“Notably, rituximab patients who achieved remission within six months received no additional immunosuppression for more than one year,” said Daniel Rotrosen, M.D., director of NIAID’s Division of Allergy, Immunology and Transplantation. “Reducing the need for immunosuppressive drugs is of great benefit to the patient, lessening the risk of possible serious long-term side effects such as cancer, infertility and infection.”"

Therapy for severe vasculitis shows long-term effectiveness (http://www.nih.gov/news/health/jul2013/niaid-31.htm#.Uf0PDRS6YL0.facebook)

[Debbie C]

That's good news. They gave those doses to people with severe wg,I wonder if they would cut back the amout to like once a month if it wasn't so bad. But my insurance doesn't cover it anyway and I can't afford the $ 16,000 it costs. I had one infusion and had a flu like reaction to it for a week and my reumy said he wouldn't give it to me again. But that's great news
for people who can get it.

[Wegetarian]

Wow.. $16k that sure is much :scared:. If this forum post is correct the patent should expire in the US in 2015 so most likely the prices will drop a lot:
"It turns out that Rituximab patent expires in the US in 2015. "

http://www.thisisms.com/forum/news/forum/rituxan-rituximab-f39/

[drz]

The most discouraging thing about any treatment effectiveness is Specks quote: "Most people treated for ANCA-associated vasculitides eventually relapse, regardless of whether they receive rituximab or cyclophosphamide-based therapy. “The risk of relapse following treatment-induced remission is a reality of these chronic autoimmune diseases,” said Dr. Specks. “The data from this trial suggest that intermittent retreatment with rituximab could be a more effective approach to long-term disease control than daily immunosuppression for patients who are at a high risk for relapse.”

[drz]

That's good news. They gave those doses to people with severe wg,I wonder if they would cut back the amout to like once a month if it wasn't so bad. But my insurance doesn't cover it anyway and I can't afford the $ 16,000 it costs. I had one infusion and had a flu like reaction to it for a week and my reumy said he wouldn't give it to me again. But that's great news
for people who can get it.

RTX is now approved for treating Wegs so an insurance should have to cover it if your doctors said it was medically necessary for your treatment. You may have to appeal and jump through some hoops and they could require significant co-pay but it seems they would have to provide some coverage for it if your docs say you need it.

[annekat]

I just don't think there will ever be a way I can afford the copay for RTX. So far, I don't need it. But if I do, either the price will have to have dropped a WHOLE lot, I'll have to have won the lottery or inherited a significant sum, or I'll have to look into getting the company who makes it to provide it for me as a charity case, which I have read on here is possible.

[Barbara N]

Good work and very interesting.

[drz]

I just don't think there will ever be a way I can afford the copay for RTX. So far, I don't need it. But if I do, either the price will have to have dropped a WHOLE lot, I'll have to have won the lottery or inherited a significant sum, or I'll have to look into getting the company who makes it to provide it for me as a charity case, which I have read on here is possible.

Most insurance plans have a cap on your out of pocket expenses. A good captive insurance plan with good drug coverage and hospital benefits might cover it if it becomes medically necessary since it is an approved drug. Before some plans could deny it as an experimental or non traditional or unconventional treatment.

[Alysia]

I just don't think there will ever be a way I can afford the copay for RTX. So far, I don't need it. But if I do, either the price will have to have dropped a WHOLE lot, I'll have to have won the lottery or inherited a significant sum, or I'll have to look into getting the company who makes it to provide it for me as a charity case, which I have read on here is possible.

Hi Anne.
I hope you will never need it. but if you will, there are research programs and the med company that might give it for free.
isn't your insurance covering you according to doc's recommandations ?
we have "national health program" and everyone is included in it in number of health services. the payment is much the same.

[annekat]

I am on Medicare, the national health plan for seniors or the disabled who are receiving Social Security benefits that they have paid into over their working years. Drz, you are probably right that there is a limit on out of pocket expenses; I'd forgotten about that and need to revisit it. I also think you are right that Medicare would have to cover it, to the extent they would, if it became medically necessary. And Alysia, yes, I would look into any help the med company or research programs could give. Medicare does cover a lot of things and does cover the current treatments and recommendations of my doctor, but these have been pretty inexpensive for them, just doctor's visits and drugs, and I do pay copays.

As for captive plans, we have Group Health here, which is something like Kaiser, and a couple I know is now paying $1000/mo. for the premium for the two of them, now that the husband has retired early due to health issues and no longer has any coverage from work. So that would be out of the question for me.

[Wegetarian]

I just don't think there will ever be a way I can afford the copay for RTX.

Well if a forum post I read was correct the patent would expire in the US in like two years. I bet the prices will fall sharply when generic alternatives are produced. So the situation might be completely different in 2-3 years, and that's not such a long time afterall if you don't need it right now.

[drz]

I am on Medicare, the national health plan for seniors or the disabled who are receiving Social Security benefits that they have paid into over their working years. Drz, you are probably right that there is a limit on out of pocket expenses; I'd forgotten about that and need to revisit it. I also think you are right that Medicare would have to cover it, to the extent they would, if it became medically necessary. And Alysia, yes, I would look into any help the med company or research programs could give. Medicare does cover a lot of things and does cover the current treatments and recommendations of my doctor, but these have been pretty inexpensive for them, just doctor's visits and drugs, and I do pay copays.

As for captive plans, we have Group Health here, which is something like Kaiser, and a couple I know is now paying $1000/mo. for the premium for the two of them, now that the husband has retired early due to health issues and no longer has any coverage from work. So that would be out of the question for me.

Medicare covered my RTX before it was approved by FDA for Weg treatment. I was inpatient at time in ICU and don't know if that made any difference in coverage but believe they would also cover it now even if I needed it as outpatient. My guess though if I get sick enough to need it I will probably be inpatient again anyway.

Medicare has done well covering my Wegs stuff. It is with my diabetic supplies that I have major problems and have to spend thousands for out of pocket costs every year. I think the recent changes caused by the bill to make health care unaffordable will result in major cost increases for many diabetics and make care supplies unavailable for many. I haven't tried to buy any test strips to check blood glucose levels since it went into effect but suspect I will no longer be able to get any more test strips for my current meter unless I also buy them out of pocket too. My old vendor stop selling me infusion sets in June due to changes in Medicare reimbursement rates. They could sell them to me but don't want to lose money on every sale so they stopped filling my doctors prescription. They said they would sell me half of what I use since they can break even at that level as they get paid for filling each prescription and not the amount of supplies shipped.

I sort of understand some of the reasons for the changes Medicare made since many mail order diabetic supply companies are very dishonest and often shipped many unnecessary and unordered supplies so they could bill Medicare excessive amounts. Now Medicare has limited all sales for test strips to only 18 companies but many of them refuse to sell any at Medicare rates cause they claim they lose money on each sale because I test so often. Again they would gladly send me 10 or 20 % of what I need.

Trying to get diabetic supplies and health care once you are on Medicare is almost a full time job. I spent over 50 hours on the phone to get my last order of infusion sets but don't know if Medicare will even pay for them or not until next year some time. I think it was a billing error or computer glitch but my BCBS supplementary insurance said I owe $1200 for my last pair of orthotic shoes I got over six months ago. Medicare often only pays a few cents on the dollar of each bill so vendors often inflate the costs to an excessive amount hoping to break even on their actual costs.

Managing my Wegs on Medicare is often a source of stress for me but trying to manage my diabetes is usually far more stressful and much more time consuming. And a lot more expensive too.

[annekat]

I expect that if I ever need RTX, Medicare will cover it to the extent that they cover anything.... I think Sangye's RTX is being covered by Medicare, but I imagine she has a sizable copay, unless maybe she also has Medicaid or a Medicare Advantage supplemental plan which would pay some of what plain Medicare would not. I don't know, I haven't asked her how she deals with it, but I do know she is low income like me and a huge part of her disability check may go to health care costs that she must pay out of pocket. I think you are right, though, that there is a yearly out-of-pocket limit. I just need to revisit all that. And like someone said, maybe by the time I need RTX, the patent will have expired and there will be cheaper generic versions.

I feel for what you go through to get diabetic supplies, drz. That is a problem I do not have. And I do not understand enough about the new health care law to be able to comment on it.

[Wegetarian]

Some brief notes on another study, didn't really understand all of it nor how they reached their conclusions.

Extended Follow-up of Treatment with Rituximab Versus Cyclophosphamide for Remission-Induction of ANCA-Associated Vasculitis: Which Subsets Are At Greatest Risk for Flare? | Immune Tolerance Network (http://www.immunetolerance.org/professionals/publications/extended-follow-treatment-rituximab-versus-cyclophosphamide-remission-ind)


Conclusions: A single course of RTX is as effective as 18 months of standard therapy (CYC followed by AZA) for remission induction and maintenance in severe AAV.

[Debbie C]

I was on Medicaid for 2 years then that is stopped and had to go to Medicare BUT since I'm too young for that, 57, I had to get a supplement ins. that would cover me and the cheapest I found was Anthem BCBS. I pay $ 6.10 a month but Social Security takes out $100.00 a month. But if I use in network I just have to pay the deductable. And whenever I have my bloodwork or any tests done ,I go to a non-profit hosp. and since I fall into the low-income brackett all my bills are written off.

[drz]

Some brief notes on another study, didn't really understand all of it nor how they reached their conclusions.

Extended Follow-up of Treatment with Rituximab Versus Cyclophosphamide for Remission-Induction of ANCA-Associated Vasculitis: Which Subsets Are At Greatest Risk for Flare? | Immune Tolerance Network (http://www.immunetolerance.org/professionals/publications/extended-follow-treatment-rituximab-versus-cyclophosphamide-remission-ind)

This probably the study that got the FDA to approve RTX for Wegs.

[mzschaumkell]

RTX is not funded in New Zealand, but I asked the doctor if my partner could have it, she said it the third tier option due to the side effects, from what I have read it is much more effective than other drugs

[Wegetarian]

More about CTX vs RTX:

Is the show over for CYC in ANCA-associated vasculitis? | Rheumatology Update (http://www.rheumatologyupdate.com.au/latest-news/is-the-show-over-for-cyc-in-anca-associated-vascul)

[me2]

Wegetarian,
You keep finding really good stuff. Thanks for sharing it here

[Wegetarian]

Thanks, been trying to be active and find out what I can about this thing and what local benefits I can get and how to get the best treatment. It has paid of real well, I felt so much better knowing that many of the issues I were feeling were side effects of Pred and not just me going crazy or getting sicker. The FB group I linked to is a great resource, I also read a book meant for doctors (printed the Weg chapter to go but haven't had time to read it). Now reading a book about someone wrote about her journey with vasculitis - figured I'd write a short summary when done, just started the book today.

Have to say I feel a bit sad for the old people in my local FB group who don't speak English nor are very good with computers, the information they receive must be very limited. Its not like I got much info from my health care system, although I have got some good info from my Doc for sure. This forum is great though :)

[gilders]

Some brief notes on another study, didn't really understand all of it nor how they reached their conclusions.



The mains points seem to be that cyc and rtx are as effective as each other for treating WG at onset (i.e. the first time you're diagnosed). But RTX is superior for treating relapses (plus the treatment is quicker and less serious side effects with RTX).

It also mentions that people without kidney involvement are more likely to relapse. The only exception to this rule is if you've already had a relapse, then you're likely to have more. Looks like I'm in that group - kidney involvement and relapses.

Well done Wegetarian for finding all this info on benefit of RTX. I'm going to have to print it all off and show my specialist to see if he can get RTX for me, when the time comes. As I can't have CYC due to severe previous reactions, I think an exception should be made.

[Barbara N]

How do you know when it is time to start with RTX?

[Barbara N]

The mains points seem to be that cyc and rtx are as effective as each other for treating WG at onset (i.e. the first time you're diagnosed). But RTX is superior for treating relapses (plus the treatment is quicker and less serious side effects with RTX).

It also mentions that people without kidney involvement are more likely to relapse. The only exception to this rule is if you've already had a relapse, then you're likely to have more. Looks like I'm in that group - kidney involvement and relapses.

Well done Wegetarian for finding all this info on benefit of RTX. I'm going to have to print it all off and show my specialist to see if he can get RTX for me, when the time comes. As I can't have CYC due to severe previous reactions, I think an exception should be made.

My Creatine level is 5 and I have sever kidney dysfunction and have had for at least 10 years so I thought I would print this out and translate it for my doctor because I don't know if I am a good candidate for RTX. I found that it is available in Spain though.

[drz]

How do you know when it is time to start with RTX?

I think only a Weg expert familiar with you and your history can advise you on that issue. People who take it for routine maintenance of Wegs soon learn too how they feel about the time they need another dose of RTX. RTX is not free of risks but it is generally consider to have less than CYC or CTX as we often abbreviate it here.

[Wegetarian]

RTX is not free of risks but it is generally consider to have less than CYC or CTX as we often abbreviate it here.

Dunno, I mean in one article I think they said it wasn't less toxic. Guess the drugs poison us in different ways :razz:

[Donna-from-Philly]

I had four infusions of RTX just after the FDA approved it for treating Weg and had a two year battle getting it paid for but we did prevail! The doctors at Jefferson and Wills Eye were great and I learned that if I had been denied I could have gone to my employer and petitioned them to force the insurance company to pay it. It was around $42,000 for four infusions.

The irony is it didn't work so we are trying the cytoxin.