Baricitinib.

[weymouth321]

Since taking Baricitinib 4 mgns for 13 weeks now, my tops and sides of feet have become painful and numb. ( soles troublesome, which is usual and expect ).Walking is still a struggle and still unable to stand in one spot before my body is desperately wanting to sit down.( Diagnosed with RA 10 years ago ). If no chairs by, like some stores have removed them, so I sit down on the floor and when I do it’s sheer bliss. And it’s not a case of pain, it’s to relieve the feeling of general malaise.

Also, have had an outbreak of shingles this past week, which is a known side effect of Baricitinib.

So Baricitinib hasn’t improved things.

Seeing the Rheu Consultant Monday, wanting to ask him to put me back on Sulfalasazine and Leflunomide, hoping my body shan’t recognise them. ( of all the meds, these 2 have been most effective ).

Has anyone had to return to their most effective medication after taking a break ?

[Shalf]

Sorry to hear this Weymouth. I totally get the malaise and the fatigue! I was never like that. Used to literally jump out of bed with a spring in my step. I've been on Baracitinib 4mg around 5 months now. It's not controlling inflammation fully but it's manageable more days than Benepali was. I still have alot of stiffness and right side just won't give me a break. Have to be honest, due to my recent UTI, I have ate pizza twice and sweets! Comfort food I call it when I don't have energy to prepare healthy foods. I get a flare when I consume such foods. I have observed that quite specifically. If Baracitinib is of no use to you then the previous DMARDS seem a good alternative. I also got shingles. Ouch! Hope you feel better soon xx

[wishbone in reply to Shalf]

Shalf, hope you don't mind me asking, but has your UTI cleared up? Presume you haven't stopped taking baricitinib because of it?

[Shalf in reply to wishbone]

Not at all, no problem. Yes it's better, got some antibiotics and still took Baracitinib. Will hand in urine sample Monday to make sure. How are you bearing up re infections etc? Xx

[wishbone in reply to Shalf]

Thanks Shalf, I know that UTIs are not uncommon in females, but would like to know if you've had any prior to this one? I think you know all about my problems with recurring UTIs.

[Shalf in reply to wishbone]

I have had loads. I knew it was a UTI before the result came back. I'm a patient of Urology too. One thing after the other! My right kidney struggles to keep up with its job! I'm a RIGHT nightmare! 😁 xx

[wishbone in reply to Shalf]

I'm aware of you having a number of health conditions, but not this one. You don't have much luck healthwise that's for sure. One more question I'm afraid....do your UTIs respond to all of the common antibiotics or are have they become resistant to any like mine have?

[Shalf in reply to wishbone]

A lot of times my GP has given me antibiotics straight away without having been tested at lab. I know this is to get on top of the infection asap but it's rarely been the correct antibiotic. Once I am given the correct one it normally does the trick. I drink cranberry juice when feeling a UTI coming on. Have you tried that? It's very good for water work problems.

[wishbone in reply to Shalf]

As you probably know, my evil little UTI bug-ger has become resistant to all the antibiotics a GP can prescribe. I tried cranberry juice, including the concentrated type, but it didn't seem to make much difference. I've been taking manuka honey for the last 2 years during which time I've not had a single UTI. Difficult to be sure it's helping though as I stopped taking immune suppressants around the same time as I started the manuka. I'll continue taking it though (I have a heaped teaspoonful in a mug of hot water every night) just in case it is having a positive effect, plus it tastes very nice.

[Shalf in reply to wishbone]

It's expensive but well worth it! Fingers crossed for you to get this resolved. X

[wishbone in reply to Shalf]

It can be expensive, especially for the so called good stuff. Claimed quality can be suspect so you don't necessarily get what you pay for.

Fingers crossed for you too.

[weymouth321 in reply to Shalf]

Thank you for your reply, yes, noted Baricitinib managing more days for you than Benepali was. Good news, yet, do you intend staying with Baricitinib?

( in regards to stiffness and right side ). Would you consider taking Leflunomide with it ?

[Shalf in reply to weymouth321]

I was on Leflunomide following methotrexate. I was constantly sick, upset tummy with it. Methotrexate was ok for a little while but my Rheumatoid was super active. I was told they had to treat me aggressively. I had pain , stiffness and swollen joints too long before diagnosis. One GP suggested it was the dogs pulling on leads. The dogs were rarely on leads as they had the safe freedom to roam. Oops I'm of on a tangent! Sorry! So for a while I was taking Methotrexate, Leflunomide and Sulphasalazine together. It was horrible! My gut was in bits. The next blood tests showed no improvement and I was moved onto biologics. I wouldn't take Leflunomide again but to be honest, I could do with something else along side the Baracitinib. It's difficult to assess what's an 'acceptable' level of pain/swelling etc with drug controlled RA. I often wonder what level of pain is 'normal' with drugs. People's pain threshold is obviously different. My right hand/wrist and shoulder is just not giving me a break. I got relief in the sunshine but it's back! I won't take steroids due to a bad experience. I am currently just hoping things will improve with the Baracitinib as I would prefer not to take anymore drugs but I am concerned of more damage occurring. Xx

[weymouth321 in reply to Shalf]

Yes, I agree it being difficult to assess what’s an ‘acceptable ‘ level of pain / swelling / fatigue with drug controlled RA.

Thank you again for sharing the side effects of theses drugs ; I’ve decided to ask Rheumy Con to re - prescribe Leflunomide alongside the Baricitinib on Monday.

[Shalf in reply to weymouth321]

All the very best with that Weymouth. It could very well go hand in hand with the Baracitinib. Keep us posted. Xx

[weymouth321 in reply to Shalf]

Thank you Shalf, shall do.

[weymouth321 in reply to Shalf]

Just got back from seeing Rheumy consultant at hospital.

Healthcare worker took ultrasound of feet , showing inflammation.

Con looked at results on screen saying Baricitinib not working as well as expected and asked if I’d been taking them - yes, definitely, even during shingles.

Advised to stop Baricitinib until over shingles.

( Written up 5 day course Aciclover tablets ).

Then resume Baricitinib. And 10 mgn Leflunomide - yes, luckily they can go together. ( so relieved ). Con advises monthly blood tests when taking Leflunomide.

He must be extending his allotted time, as lady before me was 20 mins and I must of been about 15- 20 mins.

Dexa scan results v. good = not prone to fractures.

Follow up 3 months time.

Have you tried Sulfalasazine - it was my wonder drug for few years ?

Shoulder pain is one of the worst pains ever , could it be your rotator cuff ?

[wishbone in reply to Shalf]

Have you tried hydroxy? I've been taking it with baricitinib until around 6 weeks ago when I stopped it to see if it was contributing to my skin and stomach issues. My stomach does seem to have improved a little but the jury is still out regarding my skin. Anyway, this past week or two my RA has got worse, which is probably down to coming off hydroxy. Could be the baricitinib is becoming less effective I suppose, but stopping the hydroxy seems the more likely reason. Might be worth giving it a go if you haven't already. Looks as if I'm going to have to go back on it as my RA is pretty bad, especially my right hand which I can barely use at all. I'll probably try getting by with one tab a day instead of the two I was previously taking.

[Shalf in reply to wishbone]

Hydroxy was the first drug I was on with methotrexate. I remained on that after coming off DMARDS. I was told to come off it when I started Baracitinib. I'm not sure hydroxy did much for my RA. I think the problem with RA and medicines is that everything that goes wrong in the body gets tied to those things. My right hand is the worst too! It's swollen and painful this morning. I ate chocolate lastnight again. Must be my hormones as I don't normally have such a sweet tooth. The sugar is inflammatory for me for sure! I should know better! X

[wishbone in reply to Shalf]

Morning Shalf, I was already on hydroxy when I started the baricitinib. It was the only RA med l could take for the 2+ years before baricitinib. It did not control my RA by any means, but combined with strong pain relief it did help with pain and stiffness, and even though joint deterioration speeded up during those 2 years, I think the hydroxy probably slowed it a little. I don't know about you but I'm fed up to the back teeth with it all! Things start to pick up as happened for the first few weeks taking baricitinib then something never fails to come along and stick a bl***y big spoke in the wheel! Grrrrrr

I have a sweet tooth too, which often gets the better of me though I'm not sure it effects my RA like it does with you.

[sjhewitt42 in reply to Shalf]

Hi Suzie, I can’t tolerate mtx, sulph or Lef for the same reasons as you but I’m taking Azathioprine along with Baricitinib as you know. The Aza is much easier to tolerate. Just a thought xxx

[Hessie5]

...I have been on Xeljanx for about 8+ weeks now. I still experience synovial fluid pain around ankles and fingers, but have had a slight reduction in flares (not totally). Whilst the biologic is not curing the inflammation or pain it appears to be slowly slowing down joint deformities. When in pain I reach for the Anandin joint pain tablet, I would take one to help me walk on a flare day. I do not take them everyday only when in need as didn’t want a steroid injection to mask my pain. Walking down stairs is my angst, as RA has damaged my tendons meaning I can no longer tip toe or run.... but to be able to at least function is a blessing 😊 wishing you well and you shall get better, stick at a good routine!

[weymouth321 in reply to Hessie5]

Thank you, I’m going to ask the Rheumy Con to re - prescribe Leflunomide again, to enhance the Baricitinib. Hope combination is agreeable !

Yes, I need a good routine to stick to.

[Hidden]

Sorry to hear your experience is so disappointing with Baricitinib. It seems that there are hoops to jump through, and a fanfare of trumpets when you are put on 'special' drugs, so it must be very disappointing when you don't share the enthusiasm of the Consultant. Listening to the Nras webinar on monday, the Consultant talked a bit about the risk/benefit issues and did mention shingles with Baricitinib. He also talked enthusiastically about Sarilumab, which I think is a new one, and how as well as being more effective than Dmards it had been shown to improve mood and wellbeing. Another bonus was improved blood sugar levels. Not for people with diverticulitis though. So, if your previous Dmards weren't sufficiently effective and continuing on Baricitinib isn't a goer, maybe something else will be better for you. I hope whatever you decide, or are advised, that you feel better soon.

[weymouth321 in reply to Hidden]

I’m going to Google Sarilumab, as reads very promising. Thank you for your reply.

[wishbone]

I've been on baricitinib for over 4 months. Because of recurring infections, I'm taking 2mg daily instead of 4mg that most folk seem to be prescribed. I'm a long way from remission but it has helped some with pain and stiffness for which I'm very grateful. I too have experienced serious fatigue, which seemed to begin not long after I started the baricitinib. Unfortunately this past week or two the pain and stiffness is getting worse, though I think this is more to do with me stopping hydroxy because of skin and stomach issues. That said, I think I might have to restart it as things are beginning to get a bit grim. Think I need to see a rheumy, unfortunately my rheumie retired in august, sooner rather than later by the seem............

[Hidden in reply to wishbone]

It seems like a minefield doesn't it? I think my OH is less fatigued on Baricitinib. I rather cautiously say he is doing well. I hope you have a really wise new Rheumy and feel improvement soon whatever it takes.

[wishbone in reply to Hidden]

It sure does! I should have had a routine appointment more than a month ago but things appear to be up in the air for the time being. I did phone the helpline about an appointment a week or two ago, but haven't heard anything as yet, and things ain't getting any better that's for sure. I'll phone again monday and ask the nurse about going back on hydroxy, perhaps half the dose I used to take.

[weymouth321 in reply to wishbone]

Thank you for sharing how you’re getting on with Baricitinib. Rheumy Con prescribed me Hydroxy with MXT and one other can’t remember name of when first diagnosed 10 years ago. I’ve mainly seen the Rheumy nurses, as get 30 minutes with them, and merely 10 with RA consultant. Not sure whether Specialist RA nurses have authority to write drug prescriptions.

[wishbone in reply to weymouth321]

I'm not sure either. The nurses have contacted my rheumy a couple of times when I've asked about certain things...can't recall what I asked them though.

[physicalwreck]

I am having similar problems . Was on sulfasalazine before and thinking of asking to go back on it . Not sure what to do

[weymouth321 in reply to physicalwreck]

Hi, Baricitinib didn’t suit me - took it from 12th August to 12th Nov ‘18, read my past posts if it helps. Immediately started Ibuprofen ( 400 mgs daily ), with 10 mgs Leflunomide and 10 - 20 Omeprazole daily. And paracetamol as and when needed. ( the only pain I get is intermittently - in my right hip ). Saw Rheumy Biologics Nurse 2 days ago, saying am in remission, where she gave me a choice of going back on Sulfasalazine, but I chose to remain on the above + up the Leflunomide to 20 mgs daily, which she did. Seeing her again in 3 months. ( where possibly go back on Sulfalasazine ).

I’ve lossed 1 kilo , though, haven’t really been trying, am 66 kilos. Want to get back to 10 stone, so reading Dr. Micheal Mosley books. Ring the RA hospital Helpline for appointment. Hope this helps.

[physicalwreck]

Hi weymouth thanks for your reply. Was on Leflunomide years ago . i agree it is a good drug i did well on it and apparently you can lose weight on it . What more can a girl ask for . But sadly was taken off the drug after developing lung nodules . I see my con on Monday i wont be fully recovered by then as i am still in bed with this chest infection . So no doubt the decision shall be out of my hands. wish me luck

[weymouth321]

Hi, I’m sorry you have this chest infection, possibly miss seeing your con , could he ring you on Monday, following it up with an appointment when you’ve recovered ?

Yes, I’ve read Leflunomide can help to lose weight too. Together with Dr. Micheal Mosley advice hope to lose at least 7 lbs.

Yes, I wish you well and luck for Monday.