Shutdowns: Hello everyone, I wonder if anyone else has... - NRAS

NRAS

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Shutdowns

Goldsky profile image
15 Replies

Hello everyone,

I wonder if anyone else has this problem. Between ten days and a month apart, I suddenly feel very sick, then freezing cold(can’t get warm), then have to go to sleep. I then sleep or doze from between 36 and 48 hrs. I have had my bloods done while in this state and all infection markers are up, though I don’t have an infection.

Is it just me🥴

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Goldsky profile image
Goldsky
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15 Replies

No this happens to me usually after MTX injection can’t predict it.

Goldsky profile image
Goldsky

Thank you for that J1707, pleased I’m not the only one, but feel very sorry for you. It’s weird isn’t it.

in reply to Goldsky

I got that on MTX and Lefl

Goldsky profile image
Goldsky in reply to

Ok thank you Deeb.

in reply to Goldsky

Yeah... I had a MTX a 4 week break ( on Rheumy recommendation) in April as I slept a solid 36 hours after injection and then restarted on a lower dose and increase over a few weeks. I’m going to experiment. I started baricitnib in December and doing ok but I’ve noticed since September that the knock out effect of MTX is increasing so I’ve missed this week and will take next week and so on just to see if it makes a difference.. was hoping to speak to Rheumy next week but not heard if I can have appointment so will trial it 🤞

Goldsky profile image
Goldsky in reply to

Well good luck, hope it helps J1707

Elephant100 profile image
Elephant100 in reply to

What doze of methotrexate you on I'm also on baricinib started on 4mg had to stop cause of gastric problems and 20mg mtx only 2mg of baricinib.awaiting shoulder and elbow replacement was told was on top waiting list who knows in this current climate,Anyway sorry detracted a bit hope meds work for you this my first Jake inhibitor had influxomamb entanercept and cimzia do there Job for a few years then stop

in reply to Elephant100

I’m on 15 mg of mtx now can’t tolerate much higher I turn into rip van winkle 😁. I know what you mean about gastric problems and Baricitinib. I normally have a cast iron stomach but must admit I’m struggling with my one and only side effect but persevering as it’s definitely making a difference. Tried entanercept but caused more problems than solved.

Good luck with shoulder and elbow replacement .. gotta feeling it might be awhile till your op 🥺

Elephant100 profile image
Elephant100 in reply to

Thank you so much for quick reply it's not easy sounds like you're a veteran to this disease can I call it that is it PC wish family could walk in our shoes just for one day song in there someplace hahaha chin up and carry on 😇

Niao profile image
Niao

I've not been on MTX tablets very long but am having about 2 or 3 days like this quite often. The Gp told me my white blood cell count had been high, but we were not sure if it was the prednisolone, which I understand can do this , or an infection, or the MTX!

Goldsky profile image
Goldsky in reply to Niao

Hi Niao, it is strange isn’t it. I am not on MTX or prednisolone, so can’t be that in my case. I will let you know if my Rheumatologist comes up with any ideas. Do take care.

Niao profile image
Niao

Thank you, appreciate that. Sorry I don't know what made me think you were on these, but I see from your profile you also have Fibromyalgia and Osteoarthritis like myself. I find it incredibly difficult to know when hit with severe fatigue just what on earth is causing it as there has rarely been a day go by for many years when I haven't had some level of fatigue! I would also get extreme 'cold' days with Fibro too, hot too. It's just so darn confusing! All the very best.x

Goldsky profile image
Goldsky in reply to Niao

So it could be the Fibro then Niao. Very best wishes

Deniseelk profile image
Deniseelk

I have had episodes of being freezing cold and just cannot get warm , totally exhausted and fall asleep deeply very easily but has always occurred whilst ( I can now see) whilst I am having a flare and quite possibly related to some type of virus as usually end up at the GP’s as the symptoms go on for some time but by the time I have bloods taken nothing shows up! I have stopped Methotrexate many years ago and these symptoms have occurred over the years on various medications. I will say I am now much better controlled ( I have been on Benepali for some years) and I feel it is more likely to occur when the disease is not well managed on medication. Hope you get some relief very soon.

Goldsky profile image
Goldsky in reply to Deniseelk

Thank you Deniseelk. It is strange because my RA is controlled well, I am on Abatacept and it has slowed/stopped the progression. Do hope you stay well.

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