Hi guys, I don’t usually post but thought I’d briefly share my experience in case others might benefit, also to hear your views. In a nutshell:
Was on MTX 15 mg. WBC count dropped to 3.0 so my Rheumatologist stopped me. Went to a Hematologist who wasn’t fazed by WBC but instead found that I had anemia. Had 2 iron infusions & 2 Vit B12 injections & was started on a daily Vit B12 tablet. During this hiatus from MTX my WBC count improved to 4.0 but RA symptoms worsened so must restart therapy, Will be seeing my Rheumatologist tomorrow (face to face) & I know she wants me to stop MXT & go onto Sulfasazaline or a biologic, but I prefer to continue with MXT, with even closer surveillance of my WBC count + kidney function. Both my Hematologist & Primary doctor agree with this approach. Apart from two stints with Plaquenil, I’ve followed the MTX regime exclusively since diagnosis over 20 years ago and am very reluctant to change. Has anyone had a similar experience and would like to share it?
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Jollyjill
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Hi, I haven't had your experience - I hope you can find a positive way forward. I have had drops in my blood results though and I do have MTX, a Biologic and Sulfasalazine Biologics aren't so bad though if you have to try them out. I wouldn't have thought that sulfasalazine alone would have much if an impact, but I'm not medically trained, so it's just an opinion. Maybe MTX has run it's course for you?
That’s a possibility but it has worked ver ywell over the years apart from recent issues. I even went into remission. I guess it’s a case of “known evils are better!” I’m very conflicted!
Hi Jollyjill, a real conundrum then. I am on MTX since 2009 and get on alright with it, but the biological was the one that helped me get into remission. The new medications are using many different ways to help with RA. The NRAS website has a detailed section about all available RA drugs and how they work. Maybe worth a read before you see your Rheumatologist? Good luck.
The information is contained in booklets that you can order for free or download as a PDF. The process is like any online shopping, but a bit cumbersome. I have downloaded them as I find it more convenient to use. I can't attach a PDF here and probably not in a private message, so you'll have to do it yourself. Please don't hesitate to contact me if you should encounter a problem. All the best.
I bought the booklet. Thanks. I read that MTX is still the gold standard for RA despite emerging treatments some of which are only prescribed for serious, non-responsive RA which doesn't apply in my case. My gut feeling, reinforced by both my Hematologist and Primary Care doc, is to stay on MXT, but my RA doc wants me to change. I know the low WBC count bothers her but there are available therapies to counteract that and one can also go on a drug holiday and let the count stabilize. When I went off MXT for 5 months the count went back to normal; admittedly not without a resurgence of symptoms but they were mild and manageable. I'm prepared for that eventuality, I just want her to give me some more definitive reasons why I should discontinue MXT.
I also have problems with my white blood cell count. The MTX seems to be less effective for me now than when I started two and half years ago. I'm on MTX 15mg and have been told this can't be increased and that I won't be started on another DMARD - and that I may not qualify for a biologic ! Hydroxychloriquine was added 12 weeks ago, not making any difference yet so I've been advised to increase the dose of this and have a F2F appointment in 3 months time. The consultant I had the telephone appointment seemed to think that the white blood count pretty much determined choices about medications.
It is tough when options become more limited because of another problem caused by the medications themselves. I hope you find a way through.
Perhaps you need to find out why your current dosage can't be increased! I do hate when your doc gives caveats without clear explanation. I also went on Plaquenil which is very mild and takes a while to kick in, also I experienced some unwelcome side effects. See how it goes with you. I've been checking around and found that most RA therapies including biologics affect your WBC count so what the heck? Anyway, in my exhaustive research to get to the root of all this, I heard about "Glucosides of Paeony" which reduces Leukopenia (severe low WBC count) also hepatic adverse effect from some RA drugs. You might want to check this out. The article is on the Rheumatology Network website. Still in early stages but who knows? I'm reading further. All the best to you!!
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