Stopping mtx

[Longlocks]

If just had a call from the rheumatology pharmacist. I’ve got to stop all meds as my neutrophil level has dropped to very very low. I feel fine and thought I’d got this disease licked. Never mind back to the drawing board I wonder what my Rheumy doc will have planned. Please please not another bone marrow biopsy as that was HORRIFIC!!!!!!!

[Pippy25]

Sending you some supportive wishes. RD is a complex disease and I think it likes to keep us on our toes. Wished it didn't though.

[Stowe]

Hello Longlocks,

Sorry to hear that your having problems, sorry for my ignorance but what are neutrophil levels. I hope the consultant can get you started on another medication quickly. Sending hugs. X

[Longlocks in reply to Stowe]

Neutrophils are the infection fighting cells in the body. Mtx lowers them and I had low levels before going on it. They’re not sure why mine are so low, I’ve had a bone marrow biopsy which was the worse experience of my life. Hopefully they can find something else for me but fortunately I’m doing ok with the RA at the mo x

[Stowe in reply to Longlocks]

Oh gosh, that's not good, it sounds like you really gave through it. Hoping everything is sorted for you very soon. X

[ann_martin37]

When my neutrophils were los, I was told to stop the meds for a few weeks and then retest. My levels improved and I was able to restart. I think my body got used to the meds as it hasn’t been a problem for a while.

[ann_martin37]

Sorry, I mean levels were low.

[oldtimer]

Occasionally also Rheumatoid Disease can attack the bone marrow, that's presumably why you needed a bone marrow test, as well as to rule out other problems. I had problems with that too, but didn't find the bone marrow test too bad - perhaps it was just done more skilfully? Or maybe I was just feeling so awful it didn't really matter...

[nomoreheels]

You’ve had issues with your white blood cells & neutrophils since diagnosis haven't you? Was that only found whilst doing your diagnostic tests? Also I would think your team have been keeping an eye on your bloods, I guess they were doing your MTX drug monitoring ones fortnightly initially & saw the fall in values. It makes sense to halt the MTX whilst they determine what exactly is going on with your blood. Have they said if they think it's RD related or another issue or is it too early yet? Either way I wish you a quick recovery so you can either restart your MTX or discuss other meds options with you. No, bone marrow biopsies aren't painless even though they numb the area.🥴

[Longlocks in reply to nomoreheels]

You are right in what you say. My low count was found in early diagnosis hence the biopsy. After all tests the can’t find a reason for it so suspect it’s just me naturally lower and RA lowering more. They did start to recover slightly I even got up to nearly 1 but now dropped to about 0.3. Mad thing is I feel fine. Seeing my Rheumatologist next week so I’m sure we will find a plan x

[nomoreheels in reply to Longlocks]

That is very low. Hopefully your Rheumy has answers & a plan forward for you. 🤞🏼