Baricitinib? The Last Chapter? : Hello gorgeous people... - NRAS

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Baricitinib? The Last Chapter?

sjhewitt42
sjhewitt42

Hello gorgeous people,

7th week off work.. I have cried and cried this morning in desperation as I just want a little bit of independence back. Can’t drive, feel too poorly to go anywhere or do anything..

Anyway my consultant has agreed for me to stop the Toci I think!!! The nurse I saw on Friday is absolutely rubbish, she has given me wrong med education, wrong dose of drugs and never does what she promises so I’m sitting with bated breath. I saw her in a right state on Friday.. I can’t move my head, my neck and shoulders are in so much pain and the headaches are so debilitating so I presented her with a diary (thank you Biofreak) and broke down.. off she went to consultant who said Baricitinib if I’m seronegatve (I am!) but she couldn’t find it on the system so had my RF tested again!

I called yesterday to cancel tomorrow’s Toci infusion as I thought someone else could use the appointment and they told me that all she had put was continue with Toci on the system!!!!!! What the hell... she is beyond useless!!! I shouted and screamed but obviously they need confirmation from consultant so I’m hoping and praying that someone does their job!!

I’m feeling pretty frustrated and down and just need to know some good experiences of Baricitinib to give me some hope... this lovely nurse told me that if this doesn’t work it’s the end of the road and there’s nothing else they can do!!! 😩😩😩

6 Replies
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Hidden
Hidden

Can't tell you about the drug, as I have no experience of it. But I'm sending you warm thoughts.

Poor you, that really sucks. Hope all goes as planned. So frustrating for you.

sjhewitt42
sjhewitt42
in reply to Hidden

Thanks. I could literally write a book on my experiences of my Rhumy dept.. I even took my mom with me (I’m 43! 😃) to see first hand as it sounded like you couldn’t make it up!!

Sarah xx

I've been on Baricitinib for a year + Methotrexate about 3 years, within a couple of weeks of starting Baricitinib, pain and swelling was almost gone, now I only have a bit of stiffness in the mornings and some pain from damage done to joints. It has been a miracle for me. I hope you get what you need, constant pain is so debilitating

Thank you that gives me some hope as I’m really down in the dumps. Had mtx, Suph, Lef, Cimzia, Enbrel, Abatercept and now Toci so I need to keep faith that something will work. Sarah xx

Pj551155
Pj551155
in reply to sjhewitt42

in new here. dealing with the same problems most of u all have. Sjh did u ever start the baricitnib.? If so how did it work. My doc in the US is going to start me on it next week. I need some hope.

sjhewitt42
sjhewitt42
in reply to Pj551155

Hi Pj

I was really not well before Christmas and started on Baricitinib just over 3 weeks ago. The drug makes me sleep well at night although I’m having lots of lucid dreams and I tend to have a headache most days which I am hoping will wear off once I get used to it. It’s not a thumping headache but more underlying if you can understand that.

That said my neck and shoulders feel 80% better and I am managing to walk my dog twice per day which was impossible before starting the drug. I think it’s helping and I think I was expecting too much to be pain free and full of life and energy.

Let me know how you get on and feel free to ask me any more questions as we’re all in this together. Good luck, Sarah x

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