Hi everyone, wondering if could ask for advice again.
I’m on methotrexate meto-inject 25mg and sulfasalazine. My symptoms are held at bay with this and I am on the whole well. I was very unwell on 20mg methotrexate and feel grateful that a winning formula, for now, has been found.
However, my wbc count (white blood cell) has fallen to low levels over the last 3 months. It should be 4-11 and mine tended to hover just above 4. It fell right down to 2.2 and is currently 2.8.
I feel fine and have not been worried about this. However my pharmacist is, and has contacted my rheumatologist to suggest stopping my methotrexate for a few weeks. I was horrified as I know from this board that stopping and restarting medication can ruin your equilibrium and you may not get back to the well state you had been in. I have explained this to the pharmacist.
She is now suggesting, through the RA nurse (not consultant) that I drop to 20mg methotrexate (this was ineffective for me) as well as upping my folic acid from 3 to 6 days a week. I have requested (begged!) could we try the folic acids increase first before messing about with my methotrexate. She is contacting RA nurse to ask.
I don’t know why my wbc count has dropped. The only change in the past 3 months has been my diet. I have lost a full stone through healthy eating and increasing my exercise (walking). I feel so well and eat loads less sugar so surely this could only benefit my body?
Has anyone else had experience with this? Also, am I right that changing my medication even temporarily is a bad idea when it’s working effectively? Many thanks. I always get such good advice here.
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Sunshinereturns
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I think you must be guided by your rheumatologist who is the undoubted expert here. We’re good but not that good!
I also have low wbc caused by my JAK, Filgotinib, and am therefore more vulnerable to infection. I have been on and off it over the last three months since starting it but ok once back on it after a couple of weeks’ break. I would always take my consultant’s advice as they have seen these things happen time and again.
Congrats on your weight loss which can only make you better not worse! You may find it’s not as bad as you think if you have to stop MTX for a while and if it's that that’s lowering your wbc then you may have to come off it altogether. There’s lots more newer drugs which, who knows, may suit you better. Hope you get sorted out soon.
I would be guided by your consultant. I’ve had to stop recently after my liver function suffered due to taking brufen for an injury. The methotrexate quickly kicked in again when I restarted. I’ve skip taken 2 week breaks fir the covid vaccines, and things settled quickly. I’ve been on MTX for 7yrs, and never had an issue when restarting after breaks. My WCC is the opposite and always sits just outside the upper range, with very low lymphocytes.
I did have methotrexate as my first drug and it helped the inflammation, but my hair fell out, so I asked to come off it. At the same time they increased folic acid to 6x per week and that was very good. My hair took about 8 months to stop falling out, and has now regrown, but that was pretty upsetting. I now have come off both, and two drugs later things are a bit better with imraldi biologic, except for the tiredness. Good luck with finding your answers
Low WBC count is a serious concern. It puts you at risk of death by infections. I took injectable methotrexate. It made me nauseous for two days each time. It did not work for me as I did not have the psoriatic arthritis that I was diagnosed with.
The sulfasalazine worked for my IBS, and I'm still on it.
You did not say what condition you are taking the MTX to ameliorate, so it would be hard to suggest alternatives you could try.
Having low neutrophils means you struggle to fight bacterial infections . Low total white blood cell counts show you struggle to fight bacteria fungi and viruses. Surely it is a balance. We need a functioning immune system.We need to look at the total picture. My neutrophils are low and I am seeking professional advice.
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