1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

Rituximab in Europe?

Discussion in 'Rituximab: News and Research' started by tommykazim, Sep 17, 2012.

  1. tommykazim

    tommykazim

    Messages:
    12
    Likes:
    1
    london, uk
    Hi, I am London, England based and wondered if anyone knows of any doctors in Europe administering Rituximab for CFS? Also does anyone know whether the doc in California treating with Ritux is having the same success as the Norwegians? I'm seriously considering giving it a go.
    Thanks, Tom
    andy likes this.
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,123
    Likes:
    1,362
    London
    I only know of the Norwegians in Europe. The ME Association in the UK hasn't been able to put together a study as yet.

    You will find a couple of threads here on this forum from patients being treated by Dr K. Too soon to tell about the USA doctor as he has treated so few patients and it is early days for most if them.
  3. tommykazim

    tommykazim

    Messages:
    12
    Likes:
    1
    london, uk
    Thanks for reply. Yes and I doubt the Norwegians or any European docs will offer it privately until at least phase III shows benefit. The UK i doubt will ever put on a ritux trial, too gung ho for our CBT indoctrinated docs! I can't afford heading over to the US but may have to make it happen as the only relief I've ever had from my CFS has been from antidepressants, and just two and in the process have got through most of the BNF menu now so at a dead end!

    With what seem to be a number of subsets of CFS ritux I imagine won't work for everyone. And i'm not aware of any blood results or clinical onset that suggest one is more likely to benefit. So it is quite an investment one has to make not just financially. But you've gotta be in it to win it (health) even if it might be a gamble!
  4. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

    Messages:
    623
    Likes:
    204
    US
    etanercept (TNF blocker) might be along eventually
  5. daisybell

    daisybell

    Messages:
    39
    Likes:
    61
    New Zealand
    I saw today that rituximab has now been approved for sub-cut administration in the EU. If it does turn out to be as useful for us as we all hope, the fact that it can be given sub-cut rather than IV must be a great thing in terms of cost-saving and therefore availability.....
    Sasha likes this.
  6. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    220
    Likes:
    965
    I actually have some misgivings about subcutaneous rituximab. When rituximab was first used there were some serious reactions and it is generally agreed that these are largely avoided by careful monitoring of the rate of IV infusion and discontinuation of administration if a reaction becomes worrying. The problem with subcutaneous administration is that once you have given it (in five minutes) you cannot stop giving it or take it away. Reactions probably occur over a longer period so if there is going to be a severe reaction I am not sure how you can prevent it if the drug has been given subcut. Subcut may sound simple but it is much less controllable. The results on safety so far look OK but another similar drug gave a lot of reactions some time after the drug had been given subcut. Moreover, if we are wanting to avoid severe reactions in 1 person in say 200 then there would need to be a trial with several hundred patients in each arm to show that was no increased risk. IV administration is not really a problem either in terms of cost or availability where there are convincing trial results and for the foreseeable future I would not be keen to change the route. I have a strong suspicion that the main reason for trying a new formulation is getting a new patent position.
    NK17, Roy S, rosie26 and 2 others like this.
  7. Kati

    Kati Patient in training

    Messages:
    1,716
    Likes:
    657
    Essentially, it is a "kids, do not try this at home" kind of drug. I was a chemo nurse before I got sick and I know what a drug reaction looks like and how it needs to be handled. Knowledgeable staff and access to anti-histamines and steroids are a must.
    NK17 likes this.
  8. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,166
    Likes:
    1,424
    Australia
    The benefit of subcutaneous administration is those who have needle anxiety/phobia don't have to have a several hour infusion...

    I do have a question for you Jonathan Edwards, how do you handle patients who have serious phobias of such treatment, but want to go ahead anyway?
  9. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    220
    Likes:
    965
    I think the subcutaneous injection would be felt just as much as the IV and probably quite a bit more. I honestly have had no experience of adults with needle phobias in my rheumatology practice but for children it is standard to use a sedative. The usual premed for rituximab includes a mild sedative in the form of an antihistamine. I see no reason not to use something a bit stronger. It ought to be possible to set things up so that the patient need not see any of the drip set up. All they would feel would be the single needle prick, which in my recent experience is usually no more than one gets from the flick of an elastic band at worst. Once the drip is set up you cannot feel anything.
    Snow Leopard likes this.
  10. Kati

    Kati Patient in training

    Messages:
    1,716
    Likes:
    657
    Needle phobia: you need to know that once the IV is started, the needle is removed and the tubing is connected. There is only a plastic tube remaining in the vein. Once taped on the skin, it should no longer be painful. The most phobic patients usually ask to have the IV site covered and wrapped with gauze, while some will require Ativan but it's rather unusual.

    In contrast, the SubQ needle remains until the end of the injection and due to the stinging nature of what's being injected the volume of it, it will irritate the surrounding tissues.

    That's the skinny. IV is not all that bad.
    Last edited: Mar 19, 2014
    NK17 likes this.
  11. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    220
    Likes:
    965
    That's your professional answer Snow Leopard!
    Kati likes this.

See more popular forum discussions.

Share This Page