Hi, I have been taking MTX for 6 years and my white blood cells have always been low on it however my GP has taken me of MTX due to the risk of infection and Covid -19. The trouble is I am really in a lot of pain now since stopping 2 months ago. I was wondering if anyone else has been advised to come off MTX??
Thank you.
Hi, I'm on MTX and was advised by Rheumatology to continue taking it.
Thanks for your reply. That sounds good advice to me and is very much in line with NHS advice. My GPs advice was based on a lower than normal count but I'm having an awful time at the moment and just want to try and get back to my old 'normal'. Thanks for replying.
I so know what you mean. MTX is causing me a problem with my liver which will probably have to be addressed at my next Rheumatology appointment - but I just couldn't be without it at the moment. Hope you get something resolved soon.
I was on methatrexate 2 weeks ago but was told to stop taking it as I was feeling sick and off my food I also had problems on it months back due to my liver playing up , but since coming off it my shoulders and collar bone is playing up and I'm in agony.. I also take imraldi pen every 2nd wednesday hoping this will sort me out tomorrow . My hospital appointment was due in july but has been put back till september which is to long to wait in pain may have to ring them again.
Hi Babyviolet, I'm sorry to hear that things have got worse since coming off MTX. I know how you feel. Hopefully with a bit of dogged determination those who advise and prescribe will listen to us and hopefully come up with a solution that eases the pain. Thanks for your reply.
Does your rheumy know this Jwill? The general advice is to carry on with your meds but as you have low white blood cells that may be different. I’d discuss it with your rheumy, especially as you are starting to suffer. The virus is going to be around for some time and you shouldn’t be left to suffer.
What is it with these consultants and doctors taking people off their meds and leaving them to suffer?? It is very worrying to hear.
Yes, I agree. It was a bolt out of the blue, usual regular blood test followed by a call from a GP i've never met advising me to stop MTX......Yes, it could be a life saving decision if I was unfortunate to get Covid-19 but I'm in a great deal of pain. Thanks for replying.
Oh dear I’m sorry you’re suffering. Did your GP consult you Rheumy before making that decision. We’re you given other medication?
I really think you need to be getting advice from you Rheumy now.
It was a bolt out of the blue, usual regular blood test followed by a call from a GP i've never met advising me to stop MTX......Yes, it could be a life saving decision if I was unfortunate to get Covid-19 but I'm in a great deal of pain. Thanks for replying.
Hey I am in the same situation. Was on mtx and sulfa. Low white blood cells plus neutrophils taken off first of mtx week later sulfa as well as there was no improvement with bloods. Been of RA meds for 2 months not doing amazing... Only advice I got was to take anti inflammatory meds like ibufrofen for the time being and if that doesn't help to contact them again for stronger anti inflammatory drugs.
All I want is for this pandemic to go away and to be back to my normal treatment so I can feel normal again...
If you can get in touch with your rheumatology team ask for advice if not at least contact your gp and tell them how you feel. They have to do something at least to help you deal with the pain if nothing else.
Yes, I agree. It was a bolt out of the blue, usual regular blood test followed by a call from a GP i've never met advising me to stop MTX......Yes, it could be a life saving decision if I was unfortunate to get Covid-19 but I'm in a great deal of pain. Thanks for replying. Good luck with your own health. I'm definitely struggling these days....
Hi I came off due to low white cells but only off for 2 weeks then they asked me to repeat the blood tests 2 weeks later and things had settled again. Things have been ok again for the last 2 months. M x
I was taken of MTX as a precaution for Coronavirus
Yes, do be determined! What a dreadful response from a doctor to advise something and then leave you to it without help! And not even an appointment for a repeat blood test.
First off, how low is low? If you generally have a low white blood cell count is this significantly lower, or has the GP just not bothered to look at your past record to see what is normal for you? And did they consult your rheumy? As generally it’s the rheumy who should change your meds.
All the advice from authoritative sources like the British Society of Rheumatologists is that you should stay on your meds unless you have symptoms of Covid. And it is also starting to look as if we are generally not as vulnerable as first feared anyway. Yes if you have low white cells you will be slightly more vulnerable - but this is something to discuss with you and explain and come to a shared agreement. Not just say stop!
Thanks HelixHelix, I appreciate your reply. Yes, I definitely need to follow this up. I just want to get back to the old normal which wasn't great but it was so much better than the current situation. Thank you.
I was told not to come off may be it’s just temporary for you. How high was the dose
I am surprised that your GP took you off it. What did your Rheumatologist say. x
Hi Sheila, thanks for your reply. Sadly I wouldn't know what my Rheumatologist said as I have only had a locum one this year. Whenever I try and contact the department there is no one at the end of the phone.....!!!!
I don't think that all GPs know much about Methotrexate... Surely "shared care" should mean that they consult with the rheumatologist before suggesting medication changes but maybe that's harder atm. My GP told me that most of them are scared of Methotrexate which might partly explain your GP's behaviour? My clinic was very clear that no medication should be stopped because of Covid unless you developed symptoms.
I have also had to stop MTX and sulphasalazine due to low white cells and neutrophils but this on advice of hospital not GP. Still having fortnightly bloods and hoping to go back soon 🤞. Taking Celecoxib, paracetamol for pain but not enough. Have you spoken to your rheumatologist?
Thanks Gilliancheche for your reply. Yes, just like you I am popping paracetamol on a regular basis to counteract the loss of MTX. I have some stronger pain meds but I don't like the side affects....plus I'm avoiding doing things that increase pain....
I also have a low white blood count, which is normal for me but last month it was VERY low and my GP took me off MTX for 2 weeks until it went back up, I was then told to start the MTX again.
I too would be in a lot of pain without it, I hope your GP sorts something out for you soon.
Take care x
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