RoActemra...........anyone on it??

alanweir
alanweir Member Posts: 4
edited 29. Dec 2012, 11:03 in Living with Arthritis archive
Hi

Just joined and first post so be kind to me!! :-)

I have just started on methotrexate so I am keeping fingers crossed that it helps. When I was told I was going on it then I did the usual research bit to learn a bit more. Pretty scary in some respects however I have got to give it a go!

One thing that I did see was what was called a "new powerful arthritis drug" called RoActemra and wondered if anyone had heard of it or was on it? It stated in the news article that it was 6 times more effective than Metho so obviously grabbed my interest. Had raised it with my Doc but he had never heard of it so awaiting my next appointment with my Rheumatologist to ask about it that is if that appointment ever happens. Is it only me or do others have real issues in getting to see an NHS rheumatologist??

Anyway I am digressing from the point which was to ask if anyone had heard of or was on this drug?

Thanks

Comments

  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    RoActemra, as known as tocilizumab is a new biologic drug used to treat moderate to severe RA. It is only available after the patient has failed at least 2 DMARDS including methotrexate and the Anti-TNFs. It works by blocking Il-6 and preventing the cells from sending messages to each other. It is given by infusion once a month and works best in conjunction with methotrexate, although it can be used without if the patient does not tolerate MTX. It is very new and was only licensed in this country in 2010.

    I'm waiting to see if I'm going to get funding for it. I've failed 5 DMARDS, 2 anti-TNFs and rituximab, so I don't qualify under the current rules, as I've used up my biologics funding. My rheumatologist is appealing to the PCT and we're crossing our fingers.

    Due to the way the NHS works there is a drug hierarchy and you have to jump through certain hoops before you get to others. If you're just at the beginning of your journey there are many drugs to try and hopefully they will work for you. Don't be too hasty to skip ahead. There are only so many drugs, so much money and you probably have this condition for the rest of your life.

    Rheumatologists (RD) are hard to see because there aren't enough of them and not many junior doctors choose to specialise in rheumatology. The waiting lists are long.

    I hope you see your RD soon and that MTX helps you.
    Scat.
  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    Some excellent info there from scattered, as usual. I'd certainly agree on the 'not jumping ahead' front. Meth is tried and tested and helps many of us a great deal with no side effects worth mentioning. I hope you find that happens for you, too. You'll be very well-monitored while on it.

    It's not really surprising that your GP didn't know about it. GPs can only prescribe DMARDS, anti-tnfs etc under the instructions of rheumatologists so most of them will never have come across the very new ones.
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hello Alan
    And welcome to the forum
    I see that scattered has given you some good advice, sorry I cant add to it has I have OA, but yes people do struggle getting appointments and not just with Rheumys...it can be so hard being taken serious with our GPs ..so it can be a long journey.
    I do hope you stay with us ..its good to talk.. :D x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Tremendous words of wisdom from Scattered (as per usual, crikey that girl knows her stuff) and although the thinking on when the biologic drugs can be tried you do need to try some of the standard stuff first because that may work. Although the meth side efects sound scary they are not guaranteed to crop up (I'm on the injected stuff and have very little trouble with it) and compared to the possible side effects of the biologics the meth ones are are mere children. :wink:

    GPs know a little about a lot, rheumatologists know a lot about a little. My GP deals with my osteo-arthritis and leaves the auto stuff to my rheumatologist. Over the years I've tried many drugs without any startling degrees of benefit being achieved (well, what I would term benefit!) but no matter, I'm sixteen years in now and used to it all. Be patient with the meth, ensure you have your bloods done regularly - that is so important - and keep talking to us about it because we do know what it is like. I wish you well. DD
  • alanweir
    alanweir Member Posts: 4
    edited 30. Nov -1, 00:00
    Thanks all for taking the time to reply. Always great to get some info from people that have experienced this and are dealing with it. As I said hopefully the MTX has similar results to what some have had and helps the rheumo. Just to add to the mix I have osteo in my ankles and knees from playing too much football but you seem to get more used to that over the years.

    Anyway thanks again for the replies and already I am glad I signed up for the forums. I am sure you will all be a great support in the future and I hope I can play my part in that as well!!

    Have a great day!!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I too have OA in my knees and ankles thanks to the joint damage caused by my other arthritis. The meth etc that I take doesn't affect that at all but then why would they? It's a very different beast! So, footie eh? That's been the ruin of many a young boy. :wink: DD
  • alanweir
    alanweir Member Posts: 4
    edited 30. Nov -1, 00:00
    Well I am certainly paying for my football days now!! Would I change it?? You know something I probably wouldn't!! Playing gave me so much enjoyment for years and made a lot of good friends through this and then doing a bit of coaching when I had to stop.

    Ask me that same question on one of my bad days though!! :D

    Keep smiling!!!!

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