After taking dmards for many years do people have to ... - NRAS

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After taking dmards for many years do people have to stop taking due to wbc problems?

gnstric66 profile image
16 Replies

Wbc count low for the second time, been on methotrexate for 23 years. Do people finally get immune and not able to take any dmards?

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gnstric66
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16 Replies
Matilda7 profile image
Matilda7

If in 23 years you’ve only had a low WBC twice I’d say you’re doing very well! Or are you being told it’s so low you have to stop the MTX?

gnstric66 profile image
gnstric66 in reply to Matilda7

I have had to stop taking methotrexate now due to count being 2.8.

Matilda7 profile image
Matilda7 in reply to gnstric66

A few questions:

1. Who has taken you off the MTX? GP or consultant?

2. I’m assuming that you’ve been given some advice and not just told to stop the MTX?

3. How long have they said you should stop the MTX for?

4. Has it been suggested that you take a lower dose of MTX?

5. Have you been offered an alternative drug?

gnstric66 profile image
gnstric66 in reply to Matilda7

I am being seen by a rheumatologist, he told me to stop the meds for two weeks then come back in and have the white blood count retested. I am currently not taking anything for ra

Matilda7 profile image
Matilda7 in reply to gnstric66

It sounds as if he’s hoping you’ll be able to go back onto the MTX as it’s suited you well for so long. However if that’s not possible I’m sure he’ll have some good suggestions for you when you see him again. There are so many different drugs now for RA. You don’t need to worry that you’ll be left without any effective treatment!

Tibatha profile image
Tibatha

Hopefully not

KittyJ profile image
KittyJ

I haven't found that to be the case for me...............yet 😊but that doesn't mean it can't be the case for you. Is this what you are being told by your rheumy?

charisma profile image
charisma

I had MTX for 2 years and 6 months approx; during that time, I had to stop the MTX several times due to low neutrophil count.

With RA, sudden changes in drug effectivity or tolerance seems rather common. So you have been very fortunate if only experiencing lowered WBC twice in such a prolonged time. 🙂

gnstric66 profile image
gnstric66 in reply to charisma

Yes I have had great success with this regiment so far until wbc becoming too low, I guess I am worried that it will continue doing that and I will have to go off all dmards and that's really the only help for ra

KittyJ profile image
KittyJ in reply to gnstric66

What is your rheumy saying gnstric66? Have they taken you off mtx? They won’t just leave you with nothing there are others that you can try so try not to worry.

gnstric66 profile image
gnstric66 in reply to KittyJ

Yes he has taken me off for 2 weeks to be retested after that and hopefully I can start the meds back if they white blood count has gone back to normal

charisma profile image
charisma in reply to gnstric66

Hi gnstric66

As kitty already said, there are plenty of other options. But definitely best discussed asap with Rheumatology specialist. 🙂

gnstric66 profile image
gnstric66 in reply to charisma

Thank you yes I am hoping there are other dmards that would help and not cause white blood count to be too low. Just worried that all meds may cause low readings for me

StormySeas profile image
StormySeas

I've been on MTX for about 6 or 7 years and have had to stop a few times due to persistent neutropenia. When I was on a higher dose of MTX it was more frequent, now the dose has been reduced for a few years and my neutrophils and WBC both seem to have recovered and are higher than they've been for a while.

When the WBC was extremely low I had to give up MTX for a while, but generally the rheumatologist accepted that my consistently low readings were normal for me....

gnstric66 profile image
gnstric66 in reply to StormySeas

Thank you that's good to know there are others that have had issues and they have been resolved, hopefully will be the case for me too. I may just need a lower dose all the methotrexate also

StormySeas profile image
StormySeas in reply to gnstric66

Sometimes they just reduced the dose temporarily and then resumed once the WBC level had risen. Hope you can sort it...

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