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Scleroderma & Raynaud's UK (SRUK)

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constant abnormal blood results on Methotrexate

Melarky profile image
6 Replies

bloods have been abnormal pretty much every month for over a year now. Been on methotrexate 20mg since 2019 to treat mixed connective tissue disease. Symptoms have been pretty stable for nearly 3 years. Bloods however have shown low white blood cell count e see knots every blood test. Consultant/ nurse specialist advises GP to continue prescribing. GP is worried that results continue to show abnormalities! Currently I don’t feel unwell but do struggle with tiredness. Some hand joint pain and mild inflammation. Head itches/tenderness. Red itchy knuckles, dry cracked split skin on fingers. Ongoing raynauds hands and feet.

Can anyone advise me if perhaps I need to stop or reduce my mtx now?? I wonder if this is why I’m getting regular abnormal blood results?

I’m going around in circles with my GP and specialist team and don’t know what to do for the best?!

PS Liver results are all good. 😊

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Melarky
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CLSH profile image
CLSH

I’m under the impression that the low white cell count and low lymphocyte count should be below reference level if you are on any type of immunosuppressant. It shows they are doing what they need to. It is when your neurophils are too low that consultants are concerned about. I’d be interested to see what others think…

OldTed60 profile image
OldTed60 in reply to CLSH

That’s an interesting perspective - I’ve wondered same myself on Mycophenolate. Since my dose was dropped my WBCs have gone into normal range and yet I feel less well and much more MSK pain with Raynaud’s flares lasting longer.

Melarky - I was on methotrexate for a few years. My GP never liked it because it often raised my liver bloods. My rheumatologist couldn’t work out why my GP cared about a relatively mildly elevated ALT but he did care because he said it would have lomg lasting effects after a while especially when the dose was raised. Finally I had to come off it even by injections because it made me feel so sick all the time. I’ve had no problems at all with Mycophenolate - WBCs were very slightly under range when I was at highest dose but now 2g daily and they are back in range. I felt better when on the higher dose but the scleroderma dr lowered it saying it might be worsening my dysmotility and causing malabsorption issues. I don’t think it was the cause as still got these but otherwise I feel it’s been my miracle drug. Might be worth asking about for you?

Melarky profile image
Melarky in reply to OldTed60

Thank you. I’ll explore this with the consultant when I see him in March.

Glad you’re doing so well on your treatment. Best wishes

Melarky profile image
Melarky in reply to CLSH

Thank you

mor21ank profile image
mor21ank

Hi Melarky,Like yourself I'm on a relatively high dose of Methotrexate (25mg/weekly) since late 2019 with no blood problems so far and I've responded extremely well to both the Methotrexate and Plaquenil that have been prescribed for me. I too get tired easily and have a few niggling things going on but I'm so much better than I was before being prescribed these medications.

Methotrexate does lower the white blood cell count in a lot of cases and a lot of autoimmune diseases like scleroderma cause the body to attack and destroy white blood cells. I would talk to your specialist team and ask about reducing the dose of Methotrexate that's being prescribed for you, I certainly wouldn't stop or change the dose without asking them first.

Your GP has your interest at heart and is rightly concerned about your future health but your consultant whom I presume is a rheumatologist would know a lot more about Methotrexate and its side effects.

Melarky profile image
Melarky in reply to mor21ank

Thank you. Hope you remain well on your current treatment. Best wishes

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