RA Experience: Baricitinib/olumiant 4mg.

[Ryka]

Hello,10 days ago I started treatment with Baricitinib/olumiant 4mg about.

The rheumatologist has asked me to continue my prednisone 4mg for the 1st week, tapering down to alternate days in the second week. The reason for this is that I was just coming out of a flare for which I started prednisone.

So review after 10 days: (started on 31/12/2022): I don't seem to sleep very well. Brain fog. Can't focus. Continously tired.

First two days nausea. No nausea after that. Very vivid dreams. Started alternate days of prednisone. No flares. Everything looks to be holding steady. So, rather uneventful.

Background: got RA when I was 29. Didn't want to start with such heavy drugs. Tried Ayurveda and paddisons program. Managed to have some kind of reduction. Still got flares and was mostly an exhausted shell of my previous self. And couldn't go to India for ayurveda treatments, so that stopped working. Fast forward 2022, decided to try Keto. The cheese and eggs set off the mother of all flares. Practically hobbled me. So caved and went to a rheumatologist. Got prednisone. Bone scans show that I have been lucky and no bone erosion so far. But rheumatologist says, don't push your luck. So, prednisone and now oluniant.

[KittyJ]

fingers crossed it works for you, you’re lucky you haven’t got any damage, long may it continue that way 😊

[Ryka in reply to KittyJ]

Thank you so much for the sweet words. Yes, I hope the treatments work. Fingers crossed.

[Amnesiac3637]

Sorry to hear your DIY rheumatoid treatment failed but glad you’re under the care of a rheumatologist and all the support that can be given and hope you have a good result with a small dose of Pred and a JAK which, for me, worked within a week and was absolutely a game changer.

Good that you haven’t had any damage to your joints so far - you’ve been very lucky - and if the Baricitinib works you’re on a roll. I found it easier to take it at night so any side effects for the first week or so were slept through. I didn’t have a single side effect whilst on it for nearly three years but unfortunately, as I got Covid last year, it stopped working. Out of all the DMards I’ve been on over 33 years it was the best drug I’ve had.

Best of luck, hope you have a very easy time from now on.

[Ryka in reply to Amnesiac3637]

Thank you so much for the encouraging words. I had no idea I could take it at night. I'll give it a try. How was your covid experience? I have managed to avoid it so far, and turned into a hermit in the process. But yeah, c'est la vie eh? But I doubt it will work for much longer.

When you said it stopped working after covid, did you get a flare? If you dont mind me asking.

What are you now taking?

[Amnesiac3637 in reply to Ryka]

My covid experience was not bad as I was given antivirals immediately so the actual illness itself was over by five days. After that though I wasn’t well and it took me a long time to get over fatigue, fuzzy head and inability to live my life as I would like. I thought I might have developed long covid but it was the Baricitinib not working so I flared massively. It was stopped last June when it was realised it was no longer effective and I went onto Tocilizumab. That didn’t work at all, gave me horrible side effects and I lasted on that for three months.

Have been off everything apart from my usual prednisolone which was bumped up from 7.5mgs to 10mgs last July. Am now waiting for Filgotinib (another Jak) to arrive. Can’t come soon enough as I can barely function and am am flaring all the time. So not a good saga and it’s a shame because apart from either not working after about three years, or poisoning me, paradoxically most of these drugs have given me a reasonable quality of life with severe RA!

[Ryka in reply to Amnesiac3637]

Thank you so much for the detailed reply. It sounds harrowing. I hope the new tablet gets to you soon and works well. Has diet or gut healing done anything at all? Atleast to keep the pain mangable and the flares mild? Stopping dairy has a big impact on my flares. I am now taking 3g of l-glutahione because I read that it helps the gut. Too soon to tell. I was hoping to get pregnant next year. I dont know what that means or if its even possible with RA. I should probably start a entire new topic for that.

[Madmusiclover in reply to Ryka]

there’s info on the NRAS website about pregnancy and RA. nras.org.uk/?s=Pregnancy+

[Madmusiclover in reply to Ryka]

and the NRAS help desk would be able to put you in touch with other people who have started a family and have RA for you to talk to.

[Ryka in reply to Madmusiclover]

Oh thanks. I did not know this. I will reach out to them. 🙏🏽

[Madmusiclover in reply to Ryka]

you are welcome. Xx

[Blodynhaul in reply to Amnesiac3637]

Hi Amn, sorry covid stopped your BAR working. I wondered if it was covid vaccine that stopped my leflunamide working (had been very happy on it). Had awful year with nothing working, including biologics, finally got onto Filgotinib which you say you will be starting. Just to say - it's doing a great job with my RA - inflammation & pain/agony gone (though have bad new chronic stuff, but not sure if it's due to the FIL or could be due to other stuff going on! ). Good Luck

[Amnesiac3637 in reply to Blodynhaul]

Morning Blodynhaul. You sound like you’ve had the same sort of problems with your drugs not working - how very miserable for you too. 😄

Thanks for being positive about Filgotinib. I had such a good experience with Baricitinib and am hoping F will be similar when I finally get it. Was supposed to be delivered before Christmas…..Will let you know how I’m getting on with it. Great that it’s been so good for you!

[Blodynhaul in reply to Amnesiac3637]

Thanks so much Amnesiac. Wish you all the best - & yes look forward to your feedback sometime! Go Well x

[HilaryWB in reply to Blodynhaul]

just to ask you about your post. I was on Barcitinib Jak 2 inhibitor) for 8 months, it kicked in very fast (within a week!)and little or no side effects but it did raise my platelet count although it was stable. Now changed Rheumatologist and she has decided that Filgotinib (JAK 1 inhibitor)would be better for me. Been on it about 2 weeks, doesnt seem as effective as Barcitinib , also bloods showing potential problems though platelet count better - some pain but nausea a big problem. Can you relate to any of this, and how long before I see a change for the better if I stay on the Filgotinib? Many thanks

[Madmusiclover]

bless you. I love my Baricitinib as do many others.

[Ryka in reply to Madmusiclover]

Thank you so much. Its so comforting to hear that baricitinib has work well for so many of you. 😊🥰 fingers crossed

[Deeb1764]

it has been the only drug I could tolerate and nearly done 18months on it now. So I saw a Professor last year for a 2nd opinion and he raved about this drug and said many good results so far! So keep going. I still take 5mg of pred a day due to other autoimmune diseases and respiratory issues. But if you can get off it great but use for flares if needed then in my head not a medical head so be it! No point being in pain.

[Ryka in reply to Deeb1764]

Thank you so much! This really gives me hope!

[Ryka]

Thank you so much for replying. You've all been so encouraging and sweet. I am tearing up as I write this. This disease can make you feel so alone. And its so hard to talk about.

[Madmusiclover in reply to Ryka]

You are never alone here. Share away. We understand. Xx

[Ryka]

💜 thank you 🙏

[Minah]

I started this after trying many other medicines which did not help me at all and put me almost on bed so hope it will also work for you and in first two months I had to take anti sickness due to nausea but than stopped I still sometimes have this problem addition with brain fog or dizziness but than it disappears but I was tolerating it as much as I could because of its benefits but now from last 20 days skipping it because of kidney pain and backache with nausea also suffering with uti now my Gp gave me antibiotic course and referred me for scan because symptoms showing as it could be kidding stone now I am exhausted with pain and horrified what if baritinicib had to stop during the kidney problem how will U able to manage it when I am already unable to tolerate any painkiller except paracetamol .Sorry my purpose is not frightening you I just shared my feelings .Hope for the best and Plz discuss your symptoms with your consultant because though we are suffering almost with same disease but having other different issues too

[Ryka in reply to Minah]

I am so sorry to hear about the difficulties. Thank you for writing about them. You didn't frighten me at all. Forewarned is forearmed, right? I prefer to know as much as possible as to not be caught off guard. I hope your kidneys are OK and the RA doesn't flare. Sending goodluck.

[helenlw7]

You are so lucky not to have had any joint damage. I do hope Baricitinib and steroids work for you. I’ve been on it since February after about 15 years of biologics. The Baricitinib worked very quickly for me along side methotrexate and prednisolone although I was never totally pain free, but unfortunately I’m now back to serious joint pain. I wish luck on your journey.

[Ryka in reply to helenlw7]

Thank you Helen. I think I have not yet fully grasped how lucky I have been for not having joint damage. I hope the treatments will keep it at bay. Do you have an idea of why you have severe joint pain now? Did Baricitinib stop working, like it happened with Amnesiac3637? (See above)

[helenlw7]

I think the Baricitinib isn’t working as well. My pain isn’t as bad as it was after my second biologic stopped working but it’s still painful. I have a high pain threshold but I’m still having to take co-codomal, 8 a day, and 2-4 ibruprofen, depending how much pain I’m in in the morning.

[Ryka]

Oh no. That sounds bad. Is there some prospect of a new medication? Surely this cannot go on?

[Blodynhaul]

Good Luck with your new treatment!

[Ryka in reply to Blodynhaul]

Thank you! 😊

[Wannabeabago]

How have you gone with the Olumiant if si can ask as I’m about to start it.

[Deeb1764 in reply to Wannabeabago]

Been the best drug for me so far . I had a rough start with RA meds and this is the only one I could tolerate and no side effects.

[Wannabeabago in reply to Deeb1764]

Great, thanks. No gut issues?

[Deeb1764 in reply to Wannabeabago]

no I was so bad on all the others so it was bliss to be on a drug with no side effects and worked quickly too