Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Kolibri contact

Discussion in 'Rituximab: News and Research' started by Frenchguy, Oct 5, 2017.

  1. Frenchguy

    Frenchguy

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    Hi everyone,

    I have seen a thread who speak about kolibri and contact informations.

    As I said in my presentation, i want to try Rituximab phase 3 protocol at Kolibri but I can't contact them.

    I sent an email to each of the following three addresses (found on the forum) :
    post@kolibrimedical.no
    post@forusakuttenkolibri.no
    annette@kolibrimedical.no

    I haven't received a response after two weeks...

    I called the +47 52 69 69 69 and
    as I do not speak Norwegian, it is impossible for me to go further.
    Could anyone help me?
    I saw that Francais had received this treatment, I im not a kolibri (since it is impossible in France ...), if frenchies can send me a pm to explain me, or anybody who have informations.

    Thks, David
     
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  2. LisaGoddard

    LisaGoddard Senior Member

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    Hope someone has some info for you soon! Must be frustrating. Hope you get to try the rituximab.
     
    Frenchguy likes this.
  3. Hip

    Hip Senior Member

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    Kolibri are known to be slow in replying.

    I sent Kolibri a general enquiry a while ago. If you are interested in seeing the information document Kolibri sent me, click on the button below:

    Sent to me by email on 28 Feb 2017 from Kolibri Medical:

    Treatment with RituxiMab

    Who receives the treatment with RituxiMab for ME?
    The diagnosis should be informed at a public hospital or with a specialist. There should not be other diseases that can preclude the RituxiMab treatment.

    The treatment is based on studies of RituxiMab for ME performed at Haukeland University, hospital in Bergen. The treatment contains two courses of RituxiMab which are given two weeks apart. It is followed by maintenance treatment after 3, 6, 9, 12 and 15 months.

    We will have a consultation with a clinical examination and blood test at Kolibri Medical before the treatment can start. If necessary there will also be performed a lumbar puncture. You must bring a copy of your medical records to the consultation. The treatment is not approved by public reimbursement and is experimental. The patient will be informed of the result about 2 weeks after the first examination is completed. You must pay the treatment yourself.

    About RituxiMab: RituxiMab is a immune substance that have been used for treatment of rheumatoid arthritis for over 30 years.

    Side effects about RituxiMab: It is over long time documented safety and side effects for RituxiMab. You can find more about it if you visit www.felleskatalogen.no. It is described some serious side effects and even casualties using this medication. Serious side effects are rare and are described in severely ill arthritis patients. RituxiMab has not been used long enough in ME-patients that we have been registered a complete side effect profile.

    Oue experience is that 75% will experience light reactions as itching, rash, tightness in throat, headache or fever during initial treatment. Side effects disappear when the infusion rate is reduced. Allergic reactions are rare in subsequent treatments. After treatment 25% will notice a transient worsening of symptoms of ME. These usually disappear after 1-2 weeks. You must avoid infections the first weeks after treatment. If you notice any symptoms beyond this, please contact your prime doctor or Kolibri Medical tlf: 52696969.

    Before the infusion starts you have to sign a consent form.

    Prescription on RituxiMab is submitted electronically and can be retrieved at any pharmacy. The medicine should be kept out of light, it must be well packed and can't be stored at room temperature for more than 8 hours. It is recommended that the medicine is picked up at a local pharmacy the same day or the day before infusion.

    It is recommended that you bring a companion to the first treatment.

    It is not uncommon with light side effects due to the treatment with the medication. You are continually monitored by a nurse and the doctor is available during the entire treatment. The treatment rarely cause serious side effects. You will be informed of this during the consultation and during treatment. We recommend close contact with your GP or another doctor before and after the treatment to ensure a good follow-up. If it occurs complications you can contact Kolibri Medical.

    Prices:
    - The first consultation with a specialist cost 5000 NOK [$600]. In addition you have to take blood samples necessary for eventual follow-up examinations.
    - The first treatment with RituxiMab costs 8000 NOK [$950] for the infusion. Follow-up with the doctor costs 2300 NOK [$275] and the RituxiMab costs approximately 25 000 NOK [$3000].
    - The second treatment with RituxiMab is the same price.
    - Further maintenance treatment with RituxiMab costs 5000 NOK for the infusion [$600], follow-up with the doctor costs 2300 NOK [$275] and the RituxiMab costs approximately 12 500 NOK [$1500].


    Kolibri Medical November 2015
     
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  4. Wonkmonk

    Wonkmonk Senior Member

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    Germany
    @Hip: Many thanks for posting the information, very helpful as usual.

    Do you happen to know how much mg of Rituximab it is in the first and second treatment and the follow ups?

    I remember the 1st and 2nd infusions being 1000mg and the follow ups being 500mg each.

    Then I am wondering why Rituximab is so much cheaper in Norway ($3000 for 1000mg) as opposed to ~€4000 (=~$4500) for 1000mg in Germany:

    https://www.medizinfuchs.de/preisvergleich/mabthera-500mg-1-st-roche-pharma-ag-pzn-8709904.html

    Perhaps @Benji can say something here?
     
    Benji likes this.
  5. Hip

    Hip Senior Member

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    I don't, but would guess it is the same as the Fluge and Mella protocol, which is described here as:
     
  6. Wonkmonk

    Wonkmonk Senior Member

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    Germany
    echobravo likes this.
  7. Gingergrrl

    Gingergrrl Senior Member

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    My doctor (in the US) said that if I were to do Rituximab privately (if insurance denied me which so far they have not), it would be approx $4500 for the Ritux, depending on the dose, and approx $1250 for the infusion costs. Since we got insurance approval, I just pay my infusion co-pay which is approx $300. I am hoping to get the entire year of Ritux covered by insurance but no idea if this will truly occur. Not sure why there is such variation in pricing.
     
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  8. Wonkmonk

    Wonkmonk Senior Member

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    Germany
    @Gingergrrl And I assume the $4500 is for 1000mg, right? Then it would be about the same as in Germany.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    I assume so b/c this is the standard dose but don't quote me on that! My dose is 600 mg (autoimmune protocol using body surface area formula) so I suspect the price would be a little bit less but we never discussed it since (so far) I have gotten insurance approval.
     
  10. Benji

    Benji Norwegian

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    Hi!

    Yes, it is 1000mg the first and second infusion, and then 500mg months.
    The prize is already here I see.

    This is the mail I am using at Kolibri
    IngerKristin@forusakuttenkolibri.no

    I am happy to help. I also speak French.
     
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  11. Benji

    Benji Norwegian

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    Also; everybody in Norway speaks fluently English, using English language should work very well.
     
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  12. Frenchguy

    Frenchguy

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    Thanks for your help guys,

    I haven't updated this post, but I received an email of Kolibri.

    My wife works with a dentist, her father is biologist in Marocco, and her sister is hematologist and they are looking for me to have rituximab in clinic. We think that the cost is better than Kolibri.

    I currently work with my physician to exclude other potentials causes. I have high hemoglobin 18.1 g/dl, and the Moroccan biologist say that I could have blood letting to see if my symptoms improve.
    Also, he recommand to have a pneumo vaccine test to see my response.

    After a year after stopped prednisone, i still have hypogammaglobulonemia
    Before prednisone :
    Gamma globulin 7.3 g/l (7.4/14.3)
    After 6 months of prednisone 5,9 g/l (7.4/14.3)
    1 year after stopping prednisone 5.9 g/l (7.4/14.3).

    Do you think it's normal that the gamma globulin level stay the same 1 year after stopping ?

    My physician say that my hypogammaglobulonemia is not a problem for rituximab infusion. I send him the rituximab study phase 2 about cfs and he say that he can't prescribe it off label at the moment. He say that if the phase 3 follow the phase 2 in term of results, I eventually could have rituximab in France off label.

    David
     
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  13. Kenny Banya

    Kenny Banya Senior Member

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    Australia
    Yes, that will be the case in Europe, until it is listed by the European Medicines Agency
    I assume that after its listed, it will be subsidised by the French health system, hence no longer off label
     
    Last edited: Oct 28, 2017
    Gingergrrl likes this.

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