New Medication Trial - Do I do it or not?

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Fruitbat1981
Fruitbat1981 Member Posts: 11
edited 4. Dec 2020, 14:33 in Living with arthritis

Hi all,

I don't think I have ever written a post before and the amount of time I have contemplated writing it but I didn't know how to start it. When it comes to general talking about nothing whatsoever then I can talk for England, and helping other people and listening to them no problem. When it comes to myself talking about what is going on in my life in regards to health wise then that is a different matter.

I have had Rheumatoid Arthritis for about 10 and half Years. I have tried many medications but due to underlying conditions I either haven't been able to take it because it clashes with another medication, I am taking for something else or it didn't actually agree with me.

I have been on Co-Codamol and Pregabalin for ages so it is really all the pain killers I know. They have tried others into the mix but unfortunately, I have tried all the other ones higher except morphine. That is one of the ones that I am not allowed. I have also been on Prednisolone for about 6 years. The highest oral dose I have been on is 40mg. I am now on 5 mg and have been asked to try a "NEW" drug. It is called Baricitinib. I was wondering if anyone had heard of it, is on it, has been asked to use it and said no? If you said No then why did you say No?

Apologies for the long post but apart from my consultant I honestly don't have anyone else to speak to (not that will understand properly) I am feeling so alone, helpless and on my own. I am no good at talking to anyone about how I feel. I just smile and get on with the day. I am in constant pain because I have reduced my steroids so much but for me to have this new medication, I have to stay on 5 mg at the moment but once started it I will be coming off the steroids completely.

Thanks everyone and once again apologies for the long post. See I told you once I get started talking I can carry on lol

Stay Safe Everyone!

Fruitbat xxx😎

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  • Ellen
    Ellen Moderator Posts: 1,628
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    Good morning @Fruitbat1981

    I know I've said it before, but I do love your name it makes me smile!

    AS you will know there isn't a great deal of information about Baricitinib is there? Even on the Versus Arthritis site. I know it is a JAK-inhibitor and as such has similar risks to other medications in the same category.

    I do hope someone else has either been offered or is on this medication who can give you better support than me, but in the meantime I will attach this link:

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/baricitinib/


    https://community.versusarthritis.org/discussion/52654/baricitinib-advice


    and Fruitbat if you do go ahead you know everyone will support you and would be very interested to hear how you get on with it.

    Best wishes and stay safe yourself.

    Ellen

  • frogmorton
    frogmorton Member Posts: 29,419
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    Hi Fruitbat.

    I love your photo - is that you on your wedding day?

    Chat away we don't mind🙂 If you have to think something through there's no place better.

    In my (un)professional opinion it might be worth a try. You will be monitored very closely won't you? I had a look at the comments in previous threads and it looks promising. Keep posting girl!

    Take care

    Toni xx

  • Fruitbat1981
    Fruitbat1981 Member Posts: 11
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    Hi Toni,

    Well, I have had the first lot of blood screenings done and the chest X-Ray so fingers crossed it comes back ok. Then it is just waiting for the funding and then they can try me on it.

    I have spoken to my Heart Failure/Heart Consultant and she said it should be ok, but I think they were all mainly over the moon about the fact I will be off my Prednisolone altogether.

    And so the saga continues......

  • Mike1
    Mike1 Member Posts: 1,992
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    Personally I would try anything that gave me a chance of being pain free!

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