Update, no more Baricitinib for me

[Hessie5]

Hi all, just wanted to let you know after 6 days on this medication my consultant called to say STOP. My white blood cells are now lower than low 😐yikes. He said if I get a fever, mouth sores or ulcers to go to the hospital 😬. Next steps, he is looking into another medication. So here we go again! Lots of immune boosting foods for me this weekend. Praying for help with the pain too. Have a fab and pain free weekend all. -Hessie p.s. be sure to get your blood work as I nearly didn’t bother. Had it done yesterday he called me today.

[wishbone]

Crikey Hessie, you weren't a member of the club for long were you! Seriously though, I'm really sorry to hear this and hope you stay fever and mouth ulcer free. With me being prone to infections I already had my doubts about starting baricitinib, and now hearing this on top, it's certainly got me worried if I've made the right choice?? How come you had a blood test so soon after starting baricitinib? I've also been on it 6 days and am not due one for another week.

Hope you get some relief with that pain soon.

[Hessie5 in reply to wishbone]

Hi Wishbone - please don’t be worried as remember we all react differently also I have always always had a low wbc count. I had the same thing whilst on mtx whereby I had to stop my medication. It’s really my makeup so hence don’t worry. I am going to be positive as always and in all honesty felt a bit better on this medication, less stiffness and pain. I decided to do a blood test as I just so happened to have some blood forms left and thought I would go and have my blood tested as an off chance! So glad I did.

I would say check your blood and no stressing 😌 Right now I have to wait for another biologic to be approved praying I remain somewhat pain free and hoping all goes well for you. Keep me posted.

Btw: my consultant did reassure it is a good biologics and has been in use I believe for 8 years - it just didn’t work for me.

Stay awesome - Hessie

[wishbone in reply to Hessie5]

Good on you going for a blood test. I did think there might be a reason for you having one so early. That said, it still didn't stop me going into full-on stress mode. Think I'll need to see my GP for some chill pills if I carry on like this.

Interested to know how you get on so keep posting your updates.

Good luck to you

[Shalf]

Hi, I'm sorry to read this drug hasn't worked for you. I am on day 4. There isn't a lot of information and/or reviews with it being (as I understand) a fairly new biologic. I haven't had any nausea or unusual side effects. Staying positive but a little apprehensive too! The swelling in my hand/wrist has gone down but seems rather quick to assume it's the drug doing its job although I don't know. On 4mg. Will see how things go and will post again. Best of luck with your new biologic.

Suzie x

[wishbone in reply to Shalf]

Welcome to the club.

Early days yet, but I think this drug can act quite quickly. I seemed to be less stiff on the third day.

[Shalf in reply to wishbone]

Thank you! And wow! that is quick. Will keep all posted.

[wishbone in reply to Shalf]

Not as quick as when I was on Enbrel...there was a noticeable difference in my pain and stiffness by day two.

[Shalf in reply to wishbone]

I was on that too but made no difference for me. Just goes to show how difficult it is to find the 'right' medication for every one of us.

[Hessie5 in reply to Shalf]

Thanks Suzie - yes it is new biologics and supposedly a good one too. I had no side effects either so was somewhat optimistic. What I have learnt is too keep on top of monitoring. I shall update on the next biologic. All the best. 😊

[Shalf in reply to Hessie5]

Thanks Hessie - I will do likewise re monitoring and shall update too.

Keep optimistic x

[wishbone in reply to Hessie5]

Regarding monitoring, I next see my rheumy in 3 months time so the only blood test I'll be having between now and then is the one I'm booked in for in a weeks time. Not sure I'm happy with at least a 10 week gap between blood tests. Do you know if there's a way I can have another blood test before then, say in 6 weeks time? Could my GP send me for one or would it have to be done through rheumy?

[Shalf in reply to wishbone]

Hi Wishbone, I'm sure your GP surgery can do a FBC. Just takes bit longer for results. I will be requesting the same as my next Rheumy appointment is end of October.

[wishbone in reply to Shalf]

Thanks Suzie.

[Hessie5 in reply to wishbone]

Hi - you can request blood tests through your GP too.

[wishbone in reply to Hessie5]

Thanks Hessie.

[Hessie5]

Hi Shalf - through the GP takes 2 - 3 days for results where I live, whereas my recent test via my Rheumy was next day, which was somewhat surprising.

[weymouth321]

May I ask - did your consultant write you up to take Methotrexate with the Baricitinib ?

[Hessie5 in reply to weymouth321]

No, as I had refused to take the mtx as it didn’t agree with me prior. I was on sole doses of Entenercept then of course the Baricitinib.

[weymouth321 in reply to Hessie5]

Thanks, my first delivery Baricitinib arrives Thursday - likewise, I reacted with Methotrexate prior. I'm a bit worried, as break out in shingles rash on forearm if get stressed.

[Hessie5 in reply to weymouth321]

Stress is the worst thing for RA! It thrives with this action. Although tricky try not to stress. Lots of deep breathing and relaxing helps me. I am a great believer that we can try these meds and the good news if they don’t work we can easily stop. How fortunate we are 😌....Good luck with Bari, keep us posted on your journey.

[weymouth321 in reply to Hessie5]

Thank you - Yes, my sisters are always telling me to stress out for many months now, and, yes, noticed Rheu pain and stiffness is worse when I'm stressed, so booked up for Reflexology few weeks ago, - and it's definitely made a difference. Reflexologist talks to me about any such worries.

Rheu nurse has taught me few Pilate exercises to do as well.

Thanks so much - I'll keep you posted.😃

[Shalf in reply to Hessie5]

Exactly same scenario for me Hessie. - Good luck x

[weymouth321]

May I ask - did your consultant write you up to take Methotrexate to take with the Baricitinib ?

[Shalf in reply to weymouth321]

Hi Weymouth, Like Hessie, methotrexate didn't agree with me at all. I am now on 4 mg Baracitinib only.

Suzie x

[weymouth321 in reply to Shalf]

Hi Shalt,

Thank you - how long have you been taking 4mg Baricitinib ? Are you finding it agreeable / any side effects ? Do you take Omprezole with it to prevent acid reflux ?

[Shalf in reply to weymouth321]

Hi Weymouth, no don't take omeprozole but it is in the HUGE medicine box!! It's day 6 tomorrow of the Baracitinib. Today, I have some mouth ulcers but jeez! is that the medication or just normal?? I don't know!! What I do know is the swelling , heat, stiffness, pain is alot less than it was pre this medication. People can only give their own experiences and nothing more. I have no idea how things are operating in my own body or if it would work the same for anyone else. But as if today, I'm feeling better.

Suzie x

[weymouth321 in reply to Shalf]

Oh thanks, yes, it's good to know you're feeling better since on Baricitinib. Yes, I've had a few mouth ulcers side of tongue only since taking these drugs. Consultant said I'll feel like a new women on Baricitinib. ( He's put me on it, due to Sulfalasazine, no longer effective - it's been my wonder drug for few years ). Though, have had a dry cough for several months, which, like you ; didn't know cause of. Since stopping Sulfalasazine a month ago, no cough. Last week, Rhuemy nurse says little inflammation left lower lung - as I queried Interstitial lung disease, as never had flu or chest infection. Wanted to know cause of breathlessness, as quite pronounced at times over past 2 years - have to sit down to get my breath.

Do you get this breathlessness ? Cough ?

[Shalf in reply to weymouth321]

I do get breathless, not sure if it's any of the drugs, the RA or my age! Could be a combination. I have been on hydroxychloroquine continuously with a range of other DMARDS for a year and a half and stopped just 6 days ago. Only Baracitinib I'm taking now.

I have been told that I will be at a higher risk of infections with this drug. I feel I can't win with this disease! Just got to live in hope that the drug stops the inflammation and damage and that I don't get infections. Make sure your GP has given you all the vaccines. I got shingles whilst on entercept.

Best of luck.

Keep in touch

Suzie x

[weymouth321 in reply to Shalf]

Did your consultant put you on Baricitinib due to hydroxychloroquine and other DMARDS being no longer effective ? Yes, I've read risk of raising blood cholesterol. Rheu nurse says no evidence of weight gain - I guess that's something, but still risk of infections. GP hasn't mentioned anything about vaccines - this is news to me.

Jessie x

[Shalf in reply to weymouth321]

Hi Jessie

Yes, I have been on every dmard and a combination of them but none controlled the inflammation.

I have damage to my shoulder, wrists and hand joints. The entercept injections weren't effective either so fingers crossed for this recent drug.

My GP via my Rheumatologist arranged vaccines for flu, shingles and pneumonia.

Suzie x

[weymouth321 in reply to Shalf]

Hi Suzie,

Sorry, I've just come back to you - how is the Baricitinib going ? Are you on 4 milligrammes per day ? I hope it's working for you. Thank you for advising on vaccines - I'm seeing GP nurse Tuesday for removal of clips, after Abdo Hysterectomy Monday. ( So unable to start Baricitinib for another 2 weeks, due to Rheu Meds inhibit wound healing - though, Gynae Con say 6 weeks.. )

Shall love to know how you're doing.

Jessie x

[Shalf in reply to weymouth321]

Jeez Jessie! You are certainly going through it all just now! A hysterectomy is a big op so you take it easy and allow the time it takes to recover. Very difficult I know! I had an operation to remove two discs from my neck early this year as they were crushing a nerve running down my arm - very painful. I also had to come off RA drug for a few weeks to heal. It's a pain in the neck! ( Pardon the Pun) but now I'm feeling better and that is what matters. I am on 4mg Baracitinib daily. So far so good. If you are getting the opportunity to have it then I would encourage you to take it. The drug works faster than most so you will know quickly if it's doing you well.

Take care and keep us posted.

Suzie x

[weymouth321 in reply to Shalf]

Thanks Suzie,

Oh, how is your neck and arm now ? Yes, very painful ; anything with nerves....

Thank you for telling me how you had to come off RA drugs for few weeks - how did you cope during and afterwards ? Is the Baricitinib easing the fatique ?

Jessie x

[Shalf in reply to weymouth321]

Hello again Jessie - nice to hear from you.

Yes, the nerve pain was awful and surgery had to be done - no choice really. It has been successful. The pains/sensations on movement and the knock on effect of muscle wastage around shoulder, upper arm, back was too much! Physio time now to hopefully strengthen up and gain mobility. I was getting g RA pain post surgery and swelling and fatigue. Got steroids as a temporary fix. The healing was good, no infections. We ( gp, Rheumy team) have come to the conclusion that the fatigue is related to the fibromyalgia rather than RA although it could be part of it. I definitely need more rest anyhow. The Baracitinib is working for me so far

Suzie x

[weymouth321 in reply to Shalf]

Hi Suzie,

So pleased the Baricitinib is working for you - how is the physio going ?

Can you lie down on one of those benches, on your back, with light weights in each hand ? Stressless on back and spine.

Already 9 - 10 days since hysterectomy - staples out today - hooray ! My first time outdoors !

Can start Baricitinib this Monday. ( 4mg ).

Jessie x

[Shalf in reply to weymouth321]

Hi Jessie, Great to read your up and about -Amazing really! after such a big op. I do know hospital docs/ nurses/physics etc like to see patients on their feet pretty quick after operations if all is going well.

I unfortunately cannot lie on a bench holding hand weights at this time. The visual thought made me laugh though The physio is tough but as the saying goes - no pain no gain and he makes sure he gives me plenty homework too! I had a flare on Sunday morning and my hand/wrist joints are still quite sore although not as bad as yesterday. I could have cried! Was doing so well on Baracitinib. Think too many Turkish delight bars! Been pushing my luck!

Keep us posted

Suzie x

[weymouth321 in reply to Shalf]

Hi Suzie,

I apologize for suggesting the weights - I hope the flare has passed and you're feeling better ? Wish I could go back to yoga, but don't feel my hands are up to it. Most popular Pilates teacher here, is fully booked, so shall ring again, end of summer.

Thanks, taxi to GP surgery to remove staples ( 13 ) - nurse questioned not being 10 days, I said Gynae doc said 7, and it's 9. Pleased she was old school, and agreed they were reacting with staples making angry red marks on skin. Instant relief when removed ! And staple marks much faded and calm this morning. 😀

When asked any allergies pre op, I said Mefix, plastic tape, but forgotten my skin reacting to metal watch few months ago; Christmas gift from boyfriend. ( Friend told me often use staples as quick ....).

How are you coping in this weather ?

Jessie x.

[weymouth321 in reply to Shalf]

How is the Baricitinib going ?

Jessie x

[Shalf in reply to weymouth321]

Hi Jessie, how are you?

It's been a wee while. How is the Baracitinib going? I am almost 6 weeks now ( I think - or nearly) . First two weeks - much better! Then a flare over weekend. ( Think over indulgence on chocolate and silly foods) but don't know for certain. Moving forward, my right hand/wrist and both shoulders still reminding me it hasn't gone away despite the drug battle! The stiffness, pain and swelling is coming and going. Less severe but still making sure I know it's there!

Suzie x

[Hessie5 in reply to Shalf]

Hi Suzie - lovely to hear from you. I am coping so so.

I have been off meds as awaiting my new biologic tablets as Baracitinib didn’t work for me, so it has been flare days coupled with better days mixed in. I too blame my flares on eating certain foods, just have to enjoy life knowing knowing I shall pay the pain price later. I kind of know the pattern now, although at times unpredictable.

Interesting Re your biologic, as surely you shouldn’t have any pain, worth checking with your Rheumy? Perhaps these drugs just dampen but RA still rears it’s ugly head.

I shall post again when I start my new biologics.... All the best, Hessie x

[moomie]

Sorry I have not been on here for a while. Sorry the drug didn't work for you Hessie. I started it in Nov and noticed improvement after 9 days. Unfortunately I fell inn my knee which has caused problems.

The rest of my joints are good. Been going to the dental hospital re dry mouth and ulcers. This has also improved. I have problems with my back osteo and disc bulges. Again this has improved.

My white cell count does go down but not so it causes them to worry. I have had to start taking a staton recently maybe due to this.

For me this drug is great not had any biologics just triple therapy. Still on mtx injection 25mg.

Hope this helps you new people starting this drug.

[Shalf in reply to moomie]

Helpful - Thank you x

[lucymead]

hi Hessie sad to hear your troubles, I am on and off with Benepali at the moment. I also take Leflumonide daily. When you say immune boosting foods do you have a list? I have ulcers in my mouth and gullet all the time.

[Hessie5 in reply to lucymead]

Hi - thanks for your message. I didn’t seem to get the mouth ulcers when I was on Benepali more so the mtx. Just some of my personal eating is made up of lots of the organic green veg and lots of berries, kiwis, nuts (not too many), bananas, sweet potatoes, ginger, turmeric, garlic, onions and vitamins A, B6, B12, C, D. Zinc, Magnesium, Glutamine, fish oils and very key for me was Lysine as I was getting cold sores far too often. So I decreased my nut intake and added Lysine. Of course drinking filtered water. I do not eat gluten or dairy. That’s somewhat of a snapshot .... again it’s personal to me. Wishing you well. Hessie 😊

[lucymead]

Thankyou that is almost the same as me. I also have Spinach and Kale. My Mouth ulcers started when I was on Sulfasalazine and continued to get worse on MTX then Leflumonide.

[Hessie5 in reply to lucymead]

Yes, I eat those too almost everyday. Re the ulcers It was part of the reason I didn’t like mtx. Not ideal but I use to try and protect my mouth by eating a spoon of coconut oil. I do feel for you and can so relate. Wishing you some form of relief, stay strong. Hessie 😊