Baricitinib

[linziej]

Hello

I was just wondering if anybody else was on baricitinib and how they have responded.

Many Thanks

[Mistydawn]

Hi Linzij

I have been offered this drug and am thinking about it. I understand it is a JAK inhibitor in a daily tablet form. Very new, only been available in UK for the last 2 months. It has a very short half life of just 12 hours. I too would like to know more about patients experience. However, not sure if this is going to be available as it is such a new drug unless any of our US members can help where it has been available for a year.

Misty x

[linziej in reply to Mistydawn]

Thank you Misty.

I started it a week ago. Just wondered how anybody else has responded. Felt a little nauseous first few days. Fingers crossed it’s a success.

[moomie]

I may also be starting on this drug. Have to go on the 28th to have my second das score done. The Nurse gave me the leaflet and did all the blood work. I am at present on triple therapy that she says is not working. Flaring now trying to stop steroids.

I will be interested to know how you are going on with this drug. My Nurse says you should notice it working within a couple of weeks.

Hope it works well for you.

[linziej in reply to moomie]

Hi Moomie

Thank you. I don’t have a leaflet as my consultant didn’t have any. That was what I wasn’t sure of. When you would start to notice a difference. Fingers crossed.

[moomie]

Our new Nurse has a research background so was brilliant. She said it works quickly but did mention taking a tablet twice a day. More will be revealed in a couple of weeks if I am accepted for it. Fingers crossed I can and that it works well for you.

The only thing I couldn't see in the booklet was if you are allowed any alcohol. I do have a drink at the weekend but not much.

Best wishes Moomie

[linziej in reply to moomie]

Thank you for that. I am on 1 x 4mg tablet every morning.. So hoping it works. It’s fine not having to inject. I haven’t been told all that much, just researched it and got a little ticket from consultant. I also travelled 3.5 hrs to see a specialist in Glasgow and he too highly recommend it.

They rushed through special forms for me and I was able to start a little quicker.

[Mistydawn]

No, I wasn’t given a leaflet. I’m just prnewswire.com/news-release... about the results of a clinical trial

[linziej in reply to Mistydawn]

Oh right. Yes I saw that. Fingers crossed we both have success on it.

[moomie in reply to Mistydawn]

I will look that up.

[moomie]

Just wondered if you are feeling any benefits yet from the drug ? My days score was high enough today so I can have it. The nurse gave me a prescription there and then. Unfortunately pharmacy need to order more so it will be a couple of days. I do hope you are both seeing improvements.

[linziej in reply to moomie]

Hi

Yes I am 2 weeks in and have been able to start reducing my prednisolone. This is the first drug that has worked for me in years. No side effects either. It will be interesting to see my platelet levels as they have been sitting at over 900. Good luck with it. Yes I have to give 2 weeks notice when I need a new prescription. In Scotland I’m classed as early release so hopefully when it’s fully out it will be easier to get.

[moomie in reply to linziej]

That's brilliant news so pleased for you. Long may it continue.

I thought realistically I wouldn't be able to get the drugs yesterday but they said maybe a couple of days. We are off to Northumberland at the weekend so hoping I can have them before then but It will take as long as it does.

Did it calm down flares .? Had a depot 5 weeks ago but my knee is really swollen and shoulder not moving.

I have only had dmards before so all new to me. When I was first put on sulphasalazine it worked really well but that was 7 years ago now and on 6 tabs a day and not working. Do you still take mtx ? I can stop sulpha and hydroxy but stay on mtx.

All sounds good. Again really pleased you have found something that works for you xx

[linziej in reply to moomie]

Hi

I don’t tend to have flares. Mine just stays inflamed all the time. But seeing a difference already. I only take a small amount of methotrexate because it makes me really sick.

Definitely showing great results already. I have tried many biologics and d Mards so this is fantastic news.

Good luck with it. Enjoy your break.

[moomie in reply to linziej]

Great positive news. Thank you it's good to hear from someone who is on the drug. Never thought I would be excited about taking drugs lol. And to ditch 7 that's that is good.

Girly weekend but I am taking the Westies . Hotel looks over the harbour and farne islands. We dont do much but it is good.xx

[Mistydawn]

Hi Moomie, I have seen my rheumatologist since I posted and decided against Baricitinib and opted to either stick with Abatacept(at a reduced dose frequency m) or move to Benepali. Waiting for my rheumatologist to confirm.

Wishing you all the best

Misty

[moomie in reply to Mistydawn]

You have to go with what you feel is right for you. I do hope it works for you.

Best wishes xx