Planning to Start Rituxamab and Have Many?'s

[sparklehoof]

what tests are done to show that you have a problem with B cells or that a patient is likely to be a responder?

@knackers323 I don't know if this question was directly toward me or IreneF, but personally I don't know.

 

[sparklehoof]

My understanding now is that OIM and Dr. Montoya are the most experienced with RTX for ME.

 

[sparklehoof]

Hi,
I was wondering if anyone that has been treated at the Open Medicine Institute has experience submitting the codes from their super bills to Medicare? I'm not able to afford appointments unless I have coverage, but I could probably ask someone to help me as long as I could pay it back.

Thanks

 

[ghosalb]

you can contact Genetech directly and ask for a discount if you respond and free if you don't respond. You can also ask Genentech and OMI if you can pay them on installments. Just a thought.

 

[Sallyagerharris]

Wishing you best of luck and hope you get the treatment and more importantly that is helps you.

Do keep us all updated.

Sally x

 

[sparklehoof]

you can contact Genetech directly and ask for a discount if you respond and free if you don't respond. You can also ask Genentech and OMI if you can pay them on installments. Just a thought.

@ghosalb thank you- I looked into this, but Medicare pts don't qualify, however I appreciate your message.

 

[sparklehoof]

@Sallyagerharris Thank you so much. Right now I don't believe that I clearly understand all of the risks that Prof. Edwards was alluding to in our correspondence, but so far, I haven't read too much else that has caused me to believe that this is very likely. I contacted the Dr. Montoya's office and after they receive my records and referral from my dr, they're booking 6 mo-1 yr out. I asked if there was any other way to learn if he/OMI use a different treatment protocol than what my dr is planning, but I was told that he generally won't speak with a future patient's dr. This means I'd have to wait 6 months- a year to talk to him and fly from RI to CA to do it. I also called OMI and learned they do not participate with health ins. (including Medicare), so the cost of flying out staying overnight and having my first appointment two appointments (bf having tx) would be roughly 1 year of income beef expenses.

I made a phone appt to go over my concerns with my ME dr, but the most helpful thing was that I got to talk with someone at the office that administers RTX and I got a good feeling. They said that if Medicare was going to deny
the claim, that it would have already happened so I will have part of the tx covered. I also learned that it's a good idea or me to have a flu vacs about 1+ month bf treatment. Most importantly, my dr works extensively researching and treating pts with autoimmune disorders. I feel much more at ease, though I'm going to give it a little more time before I make new plans to move.

I hope this post was helpful for other pts.

 

[deleder2k]

I pretty certain that OMI uses the same schedule as Haukeland:

day 0: 1000mg
day 14: 1000mg
month 3: 500 mg
month 6: 500mg
month 9: 500mg
month 12 or 15: 500mg

 

[sparklehoof]

Thanks

 

[nandixon]

I made a phone appt to go over my concerns with my ME dr, but the most helpful thing was that I got to talk with someone at the office that administers RTX and I got a good feeling. They said that if Medicare was going to deny
the claim, that it would have already happened so I will have part of the tx covered.

Just to be clear, Medicare would be covering rituximab treatment for you by virtue of a diagnosis of rheumatoid arthritis, rather than any sort of ME/CFS diagnosis... is that correct? I can't imagine Medicare paying for rituximab for ME/CFS at this point.

 

[ghosalb]

Hi Sparklehoof - thanks......you are providing lot of good information for us. I am also giving up on OMI because of cost and distance. Someone mentioned before that Dr. Levine is working with one doctor in Florida to pursue RTX treatment for her ME patients....do you know anything about that ?

 

[Seven7]

What??? No parvovirus or herpes???? That is bad for me (hh6v) can somebody confirm this pls? And I assume is just recent / active infections only?

 

[IreneF]

My understanding now is that OIM and Dr. Montoya are the most experienced with RTX for ME.

AFAIK Dr Montoya does not use rtx.

 

[bthompsonjr1993]

I pretty certain that OMI uses the same schedule as Haukeland:

day 0: 1000mg
day 14: 1000mg
month 3: 500 mg
month 6: 500mg
month 9: 500mg
month 12 or 15: 500mg

Just for the record I emailed them asking if they use the same protocol and this is how they replied,

"Hi Brian,

Our protocol is similar to the one in Norway, but not exactly the same.



Open Medicine Clinic
Dr. Andreas Kogelnik, Dr. David Kaufman,
and Dr. Bela Chheda
2500 Hospital Drive, Bldg. 2
Mountain View, CA 94040
P: 650-691-8633
F: 650-433-5871"

Not saying you are wrong, just wanted to contribute that to this thread since it is being discussed.

 

[Rlman]

Thanks

Hey @sparklehoof, have you ruled out Lyme disease? It can often create RA like symptoms and imaging results I think. its not easy to diagnose lyme. btw, the blogger at phoenixhelix.com has put her RA symptomsinto remission with an autoimmune diet. Wishing you all the best!

 

[sparklehoof]

Update: I moved to NY about 10 days ago anticipating that I would begin treatment with Rituximab today. The dr had her assistant call me today (which I thought was going to be my first day of treatment) and tell me that the doctor cancelled the treatment. My appointments had been rescheduled a couple of times, and then I was asked to have my rheumatologist re-evaluate me, then instead she wanted my medical records from 2007 (but my doctors from 2007 don't keep records from that long ago). The doctor hasn't called to speak with me personally to explain what happened, nor has she replied to my ME/CFS dr to tell her why she changed her mind. I packed up my apartment and moved this afternoon. My ME/CFS dr said that was the only treatment option that she knew of that could help. So... I'm rejoining the club of mostly bed bound and waiting on science. I'm sorry I wasn't able to offer any insight to anyone wanting to try this treatment. All the best.

 

[sparklehoof]

Hi Sparklehoof - thanks......you are providing lot of good information for us. I am also giving up on OMI because of cost and distance. Someone mentioned before that Dr. Levine is working with one doctor in Florida to pursue RTX treatment for her ME patients....do you know anything about that ?

I'm not certain if she is going to work with Dr. Klimas regarding RTX. She seemed interested, then not, then interested again, but I don't know if what happened with my treatment cancellation will in any way affect her plans. Hopefully she won't be swayed and will find another way to help us.

 

[sparklehoof]

Hey @sparklehoof, have you ruled out Lyme disease? It can often create RA like symptoms and imaging results I think. its not easy to diagnose lyme. btw, the blogger at phoenixhelix.com has put her RA symptomsinto remission with an autoimmune diet. Wishing you all the best!

I had a Lyme dx for 10 years and saw many LLMD's who believed that was the correct dx and continued to treat me, but ran out of options. I wish I had improvement with diets. I like the idea of being able to at least psychologically believe that I'm actively pursuing improved health when other healthcare professionals couldn't help, but I generally feel worse physically and emotionally. If I noticed an improvement in my health from a diet I think I would have the will power to sustain it, but usually I feel weak and tired on low carb diets and struggle to get out of bed to grocery shop and cook. I'll keep trying

 

[sparklehoof]

Just to be clear, Medicare would be covering rituximab treatment for you by virtue of a diagnosis of rheumatoid arthritis, rather than any sort of ME/CFS diagnosis... is that correct? I can't imagine Medicare paying for rituximab for ME/CFS at this point.

Yes.

 

[ghosalb]

Hi sparklehoof - very sorry to hear what happened...this is so strange....should have been a personal meeting to explain the reason.
FYI : I have switched to a high nutrient green and fruit vegetarian diet and it has helped me with my mood, weight and not feeling hungry all the time. I saw this on PBS channel for immune improvement and weight loss and thought I would give it a try for a month. Now I wish I started it even when I was healthy.