Baricitinib - 7 weeks

[ElizabethW]

After 7 weeks of baracitinib, I still have quite a number of painful joints, but there has been slight improvement. Swelling seems to be somewhat diminished and my general sense of well being is a bit better. However, whatever improvements I have felt over the past weeks have been very gradual. I read that barcitinib takes 2 to 8 weeks to show results. When I started out, I had some silly idea that I would be feeling better after 2 weeks, and here I am after 7 weeks still in pain and having to seriously pace myself. I have to admit I am feeling discouraged. I had by bloodwork done on Friday and the inflammation is still as high as ever. ESR has been 120 for 4 months now. CRP is also high.

I had high hopes for this medication, and I have no side effects, which is fantastic. I so want it to work for me, but seeing those blood test numbers really brought me down. I am still hoping it will work for me because I really dread the prospect of starting again with a new medication.

[sylvi]

Hugs darling. xxxx

[ElizabethW in reply to sylvi]

Thanks. I needed that from someone who gets it.

[Summerrain14]

It must have been so disappointing to see those high levels of inflammation still. I’m hoping that those small benefits start to turn into bigger changes soon. Does you rheumy team contact you about your blood test results with you inflammation still being so high? As we know it can take months for our meds to work and the waiting is very difficult. We all respond differently too don’t we?

I know of people who are on the same biologic as me and had very quick results from it. I am still struggling but had a big gap off my biologic due to infections. I had a couple of months on my biologic before having to stop due to the infections and I was not feeling the benefits after 8 weeks. I am remaining hopeful though and hope that after another couple of months back on my biologic I may feel much better. My rheumy team call me a slow burner meaning it takes a while for meds to work for me.

My inflammation levels are higher than before starting my biologic a few months ago but I expect that may be because of my infections.

I’m trying to be patient as back on my biologic now and trying to taper my steroids.

Thinking of you. x

[ElizabethW in reply to Summerrain14]

Thank you for your response. Yes I was pretty bummed with the blood results. Where I live in Canada we don't really have a rheumy team. I wish we did. I have my rheumatologist, who sometimes calls me when the bloodwork looks bad. Otherwise I can call his asssistant (who I don't think has any nursing qualifications). She is very sympathetic and approachable, but she usually says that he will call me back but I may have to wait 5 days.

It can be worrisome to take meds week after weeks and not see a lot of improvement. Maybe I am a slow burner like you.

I hope you start seeing better results with your meds soon. I know you have been through a lot and you could use a break. Here's hoping.

[Hidden]

Hi Elizabeth any improvement in 7 weeks is good most medication takes 3 months. When I started Baricitnib I too saw slight improvement to begin with then after 9 weeks great improvement. I accidentally missed only 5 days of baricitnib and I deteriorated so quickly. It’s known as a half life drug which means it leaves the system very quickly . 6 weeks later I was still crippled with stiffness etc . My rheumatologist said it will take up to 12weeks before I’m back to where i was . He gave me a steroid injection to help until then. Give it a bit more time but ask for help while it’s getting in your system x

[ElizabethW in reply to Hidden]

Thank you so much. Hopefully I just need to give it more time. Maybe 9 to 12 weeks should be a more realistic goal for me. I hope you are doing better soon.

[Deeb1764]

I am on week 13 and felt more happening on a good way this week in regards to the RA but unfortunately my fibromyalgia has decied to be the new beast as RA retreats behind the drug shield. Stick with it as a few more weeks with doing as max potential is seen 14-16 weeks if I rememer correctly.

[ElizabethW in reply to Deeb1764]

Thanks. It is encouraging to hear that you are seeing more results at 13 weeks. I'm sorry to hear that your fibromyalgia is acting up. I don't know much about it. Do you have different meds for the fibromyalgia? It must be hard somtimes to differentiate RA pain from fibro pain. I hope you feel better soon.

[skinnycappuccino]

Heya ElizabethW - I've just changed from Baricitinib to Kevzara and am in much the same situation! Had my first injection nearly 2 weeks ago and even though I know it won't start working straight away, I'm still quite upset that I haven't improved yet!

Are you on anything else besides Olumiant? Since my very first biologic I've always also been on a DMARD (first MTX, now LEF).

I can't remember how long it took for Olumiant to work when I switched to it from Simponi in 2018 but I think I got a steroid shot/tablets at the time so I didn't notice much then. Maybe this would be an option for you?

Like J1707, I've deteriorated very quickly after stopping Olumiant: it's only been about a week between my last tablet and my first Kevzara shot and my RA is worse than it's been for nearly 7 years so make sure you never miss a tablet!!

I wish you all the best with your new medication - its worked very well for me for the last three years,

Christine xx

[ElizabethW in reply to skinnycappuccino]

Thanks for your input. I really hope your new biologic kicks in soon.

I was on Simponi for 6 months before starting Olumiant. It didn't help much at all, and the effect would wear off after 2 to 3 weeks. I took MTX for years, and did pretty well on it for a long time, but I started to have palpitations and occasional shortness of breath, so I was taken off it. I tried LEF 2 years ago but after a couple of weeks I started having bouts of racing heart and anxiety so I had to stop it. I will have an in person appointment with my rheumy in September so I'm really hoping I start seeing results by then. If I can get 3 good years with baricitinib, I will be happy.

Good luck with the Kevzara

[Slinkyminx]

I’ve been taking baricitinib for nine weeks mow, like you I really wanted to see an improvement in two weeks, or less! However it has been a very slow progress but it is still slowly improving. My bloods were much improved at week five and I’ve had bloods again yesterday and hope they continue to improve. My general well-being is definitely better and my energy has increased. I’ve gained some weight but that could be due to increased prednisolone earlier this year. How are you progressing now?

[ElizabethW in reply to Slinkyminx]

It sounds very promising that your bloods have been improving! I hope things continue to improve for you and that you continue to feel well for a long time.

Like you, I am finding my progress very slow, but if I look at all the joints that were bad when I started out compared to now, there are fewer painful joints now. However, the joints that are worst now are my right shoulder and right elbow, so I am having difficulty doing a lot of things. My well being and energy are a bit better. I have been taking baricitinib for ten weeks now. I am not giving up yet, but I do need to see more improvement. I will have more bloodwork within the week, so I really hope to see some better numbers this time.

I am glad you seem to be doing well and will likely see better days ahead.