Baricitinib and sweating

[Darwin]

Hi is it just me or is anyone else on baricitinib sweating all the time. I must be the only person I know that is wearing t shirts in winter. I am absolutely boiling and sweating profusely all the time. I can’t find any information that this is a side effect but it’s driving me mad. I don’t have covers on me at night in bed and have to use a fan ☹️

[sylvi]

I pray its not a side effect as i am going on that drug when i finish this three month course of antibiotics.xx

[wishbone]

No problem with sweating here. Can't say I've heard anyone else taking baricitinib complain about it either. Might be a good idea to go see someone.

[oldtimer]

I'm not on baricitinib but I get the sweating anyway.

When I've asked about it I have been told variously that it's the disease, the medication, or my age...but no suggestions of how to deal with it.

I just wear layers, and open windows if I'm on my own.

[bernese1225]

I’m hot all the time 😞 My central heating is either off or on very low. I have a slumber cool mattress topper, thin cotton bedding and a fan but I still wake up in the morning feeling like I’m burning up with fever. I wear thin clothes and don’t feel the cold. In the summer it’s awful as my face develops rosacea and I just can’t cool down. My GP puts it down to menopause and long term steroid use. Once the weather cools my face goes back to normal but I still have the other symptoms.

These symptoms started around spring 2017 and I was on Actemra (Tocillizumab) I hoped they’d go once it was out of my system but they didn’t. I started Baricitinib in December 2017 and its been brilliant for my RD, I still have the body heat problems and I’m really not looking forward to warmer weather but I don’t think Baricitinibs made it worse.

[Leics]

Hi I’m on Baricitinib but I don’t have problems with sweating maybe it’s your other meds or previous ones that have mucked up your hormones perhaps go and see doc and get a hormone profile blood test to be sure might be you just need a hormone replacement patch or tablet. I’m on HRT because I had a hysterectomy in my 30’s so perhaps that’s why it’s not a problem. I have noticed though as I’m on low dose penicillin v as well as Baricitinib it does say penicillin can affect oestrogen levels. Go get a blood test at least you’ll know one way or another.

[bernese1225 in reply to Leics]

Hi Leics, I had an hysterectomy when I was 36 and I’m now on a low dose HRT. I think I’ll take your advice and request a hormone profile and see if anything’s changed.

Can I ask why you are on penicillin as well as Baricitinib? I was told to stop Baricitinib when on antibiotics. I’m only asking because I think I have an ear infection at the minute and hoping it will sort itself out as I don’t want to stop Baricitinib and go on antibiotics.

[wishbone in reply to bernese1225]

bernese, I receive my baricitinib prescription in the post directly from rheumy. Is it the same for you, or do you get your prescription the usual way via your GP? Also, there's usually a note enclosed reminding me to stop the med at the first sign of an infection though I'm not sure if this is particular to me as I'm prone to infections or if it's done with everyone on baricitinib?

[bernese1225 in reply to wishbone]

I pick my prescription up from rheumatology department at the hospital. I think everyone is told to stop the med at the first sign of infection because it dampens down the immune system.

[wishbone in reply to bernese1225]

Ok bernese, thanks for that.

[bernese1225 in reply to wishbone]

Wishbone, I remember my rhuemy had to apply for it as I was the first person to go on it in the area. It took about a month before I heard that the application was accepted. I asked if I could get it from my GP but they said no.

I’m not sure if it has anything to do with cost as NICE states: “baricitinib is £805.56. Each dose is also available in 84-tablet packs at a pro-rata price. The average cost per patient per year is estimated at £10,501 based on the list price. The company has agreed a patient access scheme with the Department of Health.”

I’m praying it isn’t affected by Brexit and have written to my MP via the NRAS campaign.

nras.eaction.org.uk/brexit-...

[wishbone in reply to bernese1225]

It's pretty expensive stuff that's for sure, and cost was the reason why I could not have my prescriptions from my GP.

I was told to phone the rheumy secretary for a new prescription when I was down to a fortnights supply of tablets. Of course thicko here forgot to phone the first time and only remembered to when he had 5 days worth of tablets left! Think I went 4 or 5 days without baricitinib waiting for the prescription to arrive. I started feeling the effects of not taking it too! So it does seem like it leaves the body pretty rapid, which is obviously a good thing if someone gets an infection.

[bernese1225 in reply to wishbone]

I did the same when I first started 😊 now I have an alarm in my phone to remind me.

[wishbone in reply to bernese1225]

Great minds as they say!.............

[Leics in reply to bernese1225]

I’m having to take penicillin v 2x250 mg because my immune system is in my boots and won’t ever recover so it’s for prophylactic purposes. Rheumy is trying to get immunoglobulin therapy but can’t get funding and massive shortage. So antibiotics are to cover me from every infection known to man lol. I think as it’s very low dose that’s why I can take antibiotics and baricitinib at the same time. But if I develop a full blown infection I will be taken off it for a while too. If you think you have an infection though I’d go get it sorted because it will probably only be for a week unless it gets really bad.

[archieparch]

my husband is on baricitinib with no side effects, it has also stabilised his lungs with fewer infections, the sweating could be caused by steroids if your also on those, you need to see your rheumatologist and check it out