Saw Rheumatology Consultant Thursday - Says switching from Sulfalasazine 2 ,000 and Leflunomide 20 mgs per day, to Baricitinib next month, due to current tablets no longer effective. ( I've felt highly unwell - been to GP X 2 - blood tests all normal, except raised inflammation level ).
I've never heard of it before, but he says I'll feel like a new woman.
Disappointed, as only 10 minute allotted appointment - Rheumatology Manager tells me it's correct, as questioned it. ( Thought, it was 20 minutes ). Rheu Nurses are 30 mins per appointment she informed me.
After reading the booklet for Baricitinib, see it says tell your Doctor or Pharmacist if you have had a shingles infection. Well, whenever I get stressed, I can sometimes get a shingles rash appear on my forearm. It's always in the same spot and very itchy - scabs - heals. ( Over a week ).
Has anyone tried Baricitinib and were screened upfront ?
Many Thanks,
Jessie.
Written by
weymouth321
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Glad your bloods are good to start Baricitinib, and hope that shingles thing doesn't prove to be a problem.
My bloods are also good to start Baricitinib, hopefully soon after my rheumy appointment at the end of the month. Although I do still need to have my cholesterol tested.
If you don't mind me asking, was/is there a particular reason why your consultant chose BARI for you rather than some other biologic? The reason I'll be going on it is because I'm prone to infections and they think there's less chance of me getting a serious infection with BARI than there is with any other RD med. Just hope they're right.
Thank you - Well, he didn't say why / chose Baricitinib. His first words were " It's been a long time since I've seen you " - Must be few years, as I've always seen the Rhue Nurses and been quite happy with them. Then ; " your hands are the worse I've seen " -( I don't think he meant ever seen, well, I hope not ). I reassured him I'd been taking the Sulfalasazine and Leflunomide continuously. He then asked whether I'd tried Methotrexate and I said ,yes, it didn't suit.
Unable, to remember why, until I got home - shingles.
But, thinking why he chose Baricitinib - He did a quick ultrasound on my hands which glowed with inflammation.
I guess he chose Baricitinib due to Sulfalasazine no longer effective.
Last weekend, I went to A and E as having chest pains and breathing - could only take very short breathes + feeling so unwell - so, so tired - the worst I'd ever felt in all my life. I'm 61.
Staff took more bloods, chest x-ray and listened to my chest. Diagnosed acid reflux and gave IV Omprezole as well as Gaviscon. Felt bit better. I told them I'd let off the Omprezole in recent weeks. They advised to return taking it , as Sulfalasazine and Leflunomide are pretty harsh tablets.
Rhue Consultant told me to stop taking Sulfalasazine ( I'd already done so at the weekend ).
But continue taking Leflunomide and Omprezole until next month when starting Baricitinib.
You ask about infections - no I don't have any history infections - .chest.
Read in the booklet - mentions Cholesterol - mine was 5 something years ago. Poor eating habits now, so not surprised if raised.
I was sort of hoping the reason he was putting you on BARI was similar to mine. Not that I wish infections on you or anyone else, but if your consultant had put you on BARI because you were getting infections then it would have given me a little more confidence that it might do the trick...a case of great minds thinking alike if you know what I mean. Being the eternal pessimist that I am, plus my past experiences, I can't help having doubts.
Anyway, results for BARI so far appear to be pretty positive. Let's hope your consultant proves to be right and we'll feel like a new man/woman once we are on it.
No, I understand you'd like to know why R. Con. chose Baricitinib particularly - I would too -only that Sulfalasazine was no longer effective. It's been my favourite of all for 4-5 years, maybe bit more. He spoke of it having great results = Bari.
Naturally, I googled it and found it costs about £ 10,000 per year ! ?
R. Con says a nurse shall call out to you at home, and go through everything with me.
Why ? When it's one tablet per day ?
May I ask you how much fatique you get , and how you deal with it , as major difficulty with me and breathlessness ?
Yes, it's not exactly cheap is it. If it wasn't for my infection issues I would already be on some other, no doubt less expensive, med. I'm currently taking Hydroxychloroquine but it's gradually losing effect resulting in progressive joint damage... my feet & hands are already significantly deformed and getting worse. No one has said anything about a nurse coming to the house, which does seem a bit odd for tablets, but they may do when I go for my appointment.
I do get fatigued, especially after I've exerted myself or been out somewhere, but don't find it a major difficulty as I'm retired and have an angel of a wife who is a BIG help. It would be a different story if I was on my own. I also suffer with some breathlessness as I have RA related lung disease, which is another reason why I need to control my inflammation levels as there's more chance of it kicking off again if I don't.
For some reason, I thought you female - I don't know why, but just assumed.
I took Hydrox few years ago -for not sure how long. When one reads the side effects, it's rather daunting. Thank you for answering re fatique and breathlessness. Yes, I get breathless walking up the stairs - not every time, but few times a week. A dry cough, and try to get any jobs done during the mornings as fatiqued and no good in afternoons.
It's good you have your lovely wife to help you. My sister - Diane lives close by and on hand, yet I don't like to ask for help, as single parent - though, she's always offering. Her daughters are 16 and 18.
Our mother passed away - end January - suddenly collapsed one morning - had ischemic heart disease. So we're clearing the house. She was 86 - good life with Dad. 60 odd years together.
Haha, my wife reckons I'm well in touch with my feminine side. I always thought she was talking a load of tosh...perhaps not!
Good that your sister lives nearby if you should ever need her. I know how you feel about asking for help, but there comes a time for many of us when we can't manage without it. Being a male, albeit with a prominent feminine side, it is no fun at all having to ask/watch my wife do maintenance jobs around the house that I used to do.
Yes, when I can't open a jar - despite these aids - I almost throw the damned jar at the window. One time I was so angry I threw several pieces of cups and saucers on the hard tiled floor. It felt so good - then I had to pick it all up !
It's lovely and sunny - sister just rang to suggest I do something for myself ( after looking out to Mum ). So looking at Volunteering Website.
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