Baricitinib again!...: After several months of... - NRAS

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Baricitinib again!...

wishbone profile image
28 Replies

After several months of indecision I have taken the plunge and started baricitinib today. Thought I'd made up my mind not to start it, but after talking with my rheumy last thursday, for better or for worse, I've decided to give it a go. Just hope I'm not opening myself up to a serious infection again as I've not had one since stopping all immune suppressants nearly 2 years ago. Even more of a worry, according to my chest consultant, is there's a possibility that baricitinib could further deteriorate my already RA damaged lungs. On a more positive note, and again according to my chest consultant, there's research going on that JAK Inhibitors might be beneficial for people with asthma and COPD...all digits crossed on that one!

You can probably see why starting baricitinib has been such a difficult decision for me to make, ie. do I put up with constant pain (not much fun but I can handle that for the most part) and further joint deterioration..my hands and feet are already pretty bad. There's also a risk that my raised inflammation levels could also cause my lungs to deteriorate, although there seems to be some uncertainty about this and they could deteriorate whatever the case. In fact, the more I find out about this awful disease the more I realise how much uncertainty exists.

Back to the BARI, rheumy has prescribed one month's supply of half the max dose - 2mg tablets, which are odd shaped pinkish little things. Next step is to report to the rheumy sec in two weeks time to let her know how things are going and whether or not to prescribe more baricitinib.

edit...forgot to add that around the same time as I contact the rheumy sec, I have a FBC taken, plus a blood test for HIV.

No doubt after reading the above you can tell how anxious I am, so wish me luck, plus keeping as many fingers crossed for me as you can won't go amiss either. :-)

28 Replies
Nsmith13 profile image
Nsmith13

🤞🏻

wishbone profile image
wishbone in reply to Nsmith13

I like it. :-)

Gnarli profile image
Gnarli

I've got everything crossed for you that will cross. I'm sure you will be absolutely fine and I'd love to hear how you're getting on. Hugs

J

wishbone profile image
wishbone in reply to Gnarli

Will do, thanks Gnarli.

Hobbledehoy profile image
Hobbledehoy

Hullo Wishbone. I have COPD + aggressive RA and started Baricitinib 4 mgs at the end of March. So far, so good! I am very grateful. No problems. The odd hot flush. I am careful about diet, exercise and rest, and especially cross-infection as we are very vulnerable there. I take supplements: slow-release Vit C with Zinc; Vit D v important; Magnesium; all Boots. Good luck. Continue to fight the good fight!

wishbone profile image
wishbone in reply to Hobbledehoy

That's good to hear, thanks Hobble. Long may it continue to work for you.

How long did baricitinib take to start working for you? Also, did any of your docs say anything about baricitinib affecting your lungs?

I take a multi vitamin and my Vit D level is fine. I also take manuka honey to help prevent UTIs which I'm prone to ...hence my infection worry. Not sure if it's helping as I started taking it around the same time as I stopped immune suppressants. Though it had better be as it costs a bomb!

Hobbledehoy profile image
Hobbledehoy

I was lucky, it seemed to get going quite quickly in me - I didn't have another flare-up before it took hold. My then Consultant, who saw me as an emergency arranged by the specialist RA nurses because I was so ill, recommended the drug to me and I was terribly pleased because I had privately chosen it for myself as a low-effect on the lungs.

You know that a booklet detailing all the drugs are obtainable from our marvellous NRAS..? But the body so often doing its' own contrary thing, I am just hoping & hoping that it continues to work - my inflammation markers have reduced to very low indeed from being always very active - and I count myself extremely fortunate to have such a newly-released, expensive, cutting-edge drug.

wishbone profile image
wishbone in reply to Hobbledehoy

Fantastic that it's helped you out of such a bad place, I'm really happy for you.

Interesting what you say about it having a low-effect on the lungs as I don't think my rheumy was aware of any negative effect. There's nothing definite anyway so we'll just have to keep our fingers crossed on that one.

It will be interesting to see what my CRP is when I have my bloods done in two weeks time. It wasn't very high, about 60 I think, when I had them done a few weeks ago. My RA was pretty calm back then though, as indeed it is now. So I'm hoping the baricitnib will start working pretty sharpish like it did with you and I can avoid another flare, which I think I'm about due for.

Thanks for replying to my posts, Hobble. I am a bit of a worrier, though probably with good reason when it comes to RA meds, and your posts have helped reassure me some.

Good luck to you.

Hobbledehoy profile image
Hobbledehoy in reply to wishbone

I didn't mean that it WILL have an adverse effect on the lungs, I don't know that; I only know that it is very much less likely to do so than some other drugs might.

I am happy to reply to you anytime, Wishbone, and you are welcome to keep in touch if would like to.

RA can be such an extremely painful condition that I don't wonder you worry. As I say, we are on a top-notch new treatment, so there is every chance that it will help us without the dreaded bad side-effects.

Good luck and God bless.

wishbone profile image
wishbone in reply to Hobbledehoy

I know you didn't, if you did then I'd be a very worried man! :-) I didn't explain myself very well, sorry for the lack of clarity.

It will be good to keep in touch, especially as our conditions are not dissimilar. We can update each other from time to time...hopefully with some positive news. Might be best to do so by PM if that's ok with you?

Take care.

Hobbledehoy profile image
Hobbledehoy in reply to wishbone

sorry, am v tired - wot's PM..?

wishbone profile image
wishbone in reply to Hobbledehoy

Private Message.

Thought it would be more appropriate, but it looks like there's more people interested in this thread than I thought. So perhaps best to stay public?

Hobbledehoy profile image
Hobbledehoy in reply to wishbone

Just as you wish. And if you feel that you could talk better via a PM, we can do that; though how, do you mean e-mail? I suspect there's a way of doing it on-site - I'm awfully stupid! As you say, a surprising no. of others are chipping in, and as it's such a new drug, maybe we can indeed help each other. I'll leave it to you, Wishbone. x

wishbone profile image
wishbone in reply to Hobbledehoy

That's what I was thinking, so best we keep things as is. We can always change at a later date if we want.

PM is easy...click on Chat at the top of the page...click compose...type in the member's username you wish to speak to, and away you go.

Hessie5 profile image
Hessie5 in reply to Hobbledehoy

Thanks for sharing your story although we all react differently with meds, it’s great to share our experiences. I am on day 4 with this biologic and so far I have noticed a bit less stiffness and pain, still early days I know. I am in 4mg hope to reduce to 2mg. Here’s to positive health we deserve it!

wishbone profile image
wishbone in reply to Hessie5

Think I must have overlooked this reply.

Funnily enough Hessie, so have I. I'm also on day 4 and have noticed slightly less stiffness since yesterday. Thought I might be imagining it, but now you have said!..............

Banksian profile image
Banksian

I wish I could try it.

In November I was promised that I could start it in February, I have tried nearly everything else. Went for appointment, no treatment change as my RA of 8 years could just be just Fibro so I should get the Fibro pain treated and then I should be able to stop the prednisolone, (at the moment it’s only the prednisolone that is keeping me mobile)

Then next I get a letter to say it could be gout. I haven’t any gouty joints. My GP couldn’t believe the letters from the clinic. I have a clinic appointment this month and I have a £5 bet with a friend that they will try and blame PMR or Lymes Disease next. I can’t afford to pay for it myself.

My health trust is in financial difficulties and under special measures.

Is anybody else out there having trouble getting the treatment they need. Are we back to the “Post Code lottery” problem?

Sorry for the moan, but I have just had enough.

wishbone profile image
wishbone in reply to Banksian

Sorry to hear this, Banksian.

When I hear cases like yours I realise how fortunate I am having a good rheumatologist and access to expensive medication. It's so unfair how some areas can get certain treatment and others can't.

Hope you get some proper treatment soon.

Banksian profile image
Banksian in reply to wishbone

Thanks

Hobbledehoy profile image
Hobbledehoy in reply to Banksian

Oh, moan away! That's what we're here for too! Sorry about your difficulties. What part of the country are you?

Banksian profile image
Banksian in reply to Hobbledehoy

Isle of Wight

Hobbledehoy profile image
Hobbledehoy in reply to Banksian

Hullo Banksian. There was no message in your reply! Or perhaps you just want to let me know where you are, re- your health trust... Best wishes.

Banksian profile image
Banksian in reply to Hobbledehoy

Sorry I did try to reply but it disappeared. My area is the Isle of Wight. Only have choice of one clinic and one Doc, unless I go private and go over to the mainland, so no choice.

The eye clinic here is just as bad. I have glaucoma as well. Last year they didn’t have a glaucoma specialist for the whole year and my right eye lost a lot of the peripheral vision according to the new specialist. Don’t come and live on the IW if you want decent hospital health care. My GP helps me with all that she allowed to and is a good listener.

Hessie5 profile image
Hessie5

Hi Wishbone - join the club! I started Baricitinib too on Sunday. I am on 4mg a day. I didn’t want to take it but hoping strong dose could deal with this inflammation in my foot and then hopefully reduce the dose. I like the way your consultant is so pro active, mine just switched me from Enbrel Injections - then said I don’t need to see you unless you want me too in July 😒..... I am going to trial because I don’t want to become dependent on these drugs. I am hopeful to find a better route. So far It’s okay. All the best to you, Hessie

wishbone profile image
wishbone

A rather exclusive club by the seem after reading Banksian's post.

She, my consultant, is great. I've been with her for nearly 5 years now and we get on well together. Due to my infection risk we've decided it best to start with 2mg and see what happens.

After a 2 years of infection free immune suppressor abstinence, it's a big step starting back on them. Hobbledehoy has reassured me some about the risk to my lungs, but I can't help having this gut feeling that I'm going to be hit with an infection before too long. If this does happen then I think I'll be taking my chances immune suppressant free. One good thing is should I get an infection then baricitinib leaves the body pretty quickly. Can't recall how long my rheumy said, but I believe it's significantly faster than any other RD meds.

Good luck with your foot.

Hessie5 profile image
Hessie5 in reply to wishbone

Good to know that it leaves the body quickly - that was one thing I omitted to ask my consultant. Have a good day ☀️

Canada3 profile image
Canada3

Hi, wondered how you are doing on Baricitinab? I am about to start on 2mg dose and have had numerous failures with other anti TNF's and the barrage of DMARDS... cortisone works wonderfully.... but.... do we really want to take so much cortisone? fingers crossed for you

wishbone profile image
wishbone in reply to Canada3

Still doing ok pain & stiffness wise, and more importantly for me - I'm still infection free. No plans on increasing my 2mg dose to 4mg...don't want to push my luck.

Is there a reason why you are starting on 2mg instead of the 4mg most people seem to start on?

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