Continuing to be an enigma...: Where was I? MTX for... - NRAS

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Continuing to be an enigma...

elrose profile image
15 Replies

Where was I? MTX for 6 months - no change, Ciprofloxin - headaches and vomiting, Hydroxychloroquine - ongoing. 3 weeks ago my Haematology consultant prescribed a G-CSF injection (nothing else has worked to combat my white blood cell count) and whether it was the placebo effect or something I was actually feeling perkier than had in a while. Crushingly came in from work on Friday to find a GPs message on the m/c saying once againe my WBC had plummeted and to collect my (now standard) script for antibiotics and antifungals....gutted, back to the drawing board.

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elrose profile image
elrose
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15 Replies
heatherp profile image
heatherp

have you tried prednisolone, as I find it's the only thing that gets my white count to within normal range!

yes Prednisolone raises wbc, Iam concerned as hydroxychloroquine and mtx can both affect blood count and can cause blood disorders as side effects. are these the best medication for you?

gigi5 profile image
gigi5 in reply to

Can you tell me how this will effect people, for I am also on hydroxychloroquine and mtx with many other meds. I have asked my pharmacy if they will be able to tell me if any of my meds should not be taken together from computer and they said they should, just concerns me now. Thank you for any answer you can give me.

elrose profile image
elrose in reply togigi5

from all my own research lots of combis are the norm, mtx and hydroxy, etc. none that i have come across are contra-indicated, but figure it depends on ur circumstances. Given that my immune system is already compromised most are tricky for me but in general are good for RA alone (and mebbe fibro) it makes sense that different cocktails would would be required as we are all individuals...as long as you continue to take an interest in what ur prescribed and listen to what ur body is telling u about how it is working for u should be fine, hope this helps, stay well xx Elrose (linda)

gigi5 profile image
gigi5 in reply toelrose

yes, thanks!

elrose profile image
elrose

I have been on prednisolone for 2+ years, this predates my Feltys (or at least my diagnosis anyways) my haematologist is reasonably savvy, I take a whole raft of drugs but was just giving the broadstrokes. Apparently the best way to deal with Feltys is to get the underlying RA under control - hence the MTX, etc.

sylvi profile image
sylvi

Elrose, i amsending cyber hugs your way as from what your saying you need an extra bit of tlc. Love sylvi.xx

elrose profile image
elrose in reply tosylvi

Thanks Sylvi hope ur recovery is going well x

sylvi profile image
sylvi in reply toelrose

Getting there elrose albiet very slowly, i find recovery very frustrating as the op is over and now i want to up and moving,it doesn't work that way though does it.xxx

elrose profile image
elrose in reply tosylvi

Best to take the time than undo good works...be well xx

Elrose, I am concerned, or interested in why he is giving you a broad spectrum antibiotic and anti-fungal drug. Were cultures ever done to identify a bacterial infection or a fungal infection somewhere?

That would be very difficult to deal with along with the decreased WBCs of using MTX and other DMARDs. Usually they tell us to stop MTX when taking an antibiotic. Just wondering Lxxx

elrose profile image
elrose in reply to

My WBC (specifically neutrophils) is generally low anyways, they know/accept that the drugs to tackle the RA suppress the immune system anyways but the aim was that in getting control over the RA it should settle down the Feltys. Typically if it falls <.5 they prescrive the broad spectrum stuff as a prophylactic measure. The problem is I dont seem to be responding to anything, MTX had no effect and the G-CSF injection (confirmed by consultant today) was also ineffective..she is now at a loss as to what to do with me and for the moment preventative is all they can do..

in reply toelrose

Thanks for explaining that. Felty's is such a puzzling phenomina, I can see where Preventative action is necessary. Have they used Steroids of any kind? Or is that what the CSF injection was?

How do you feel on a daily basis? Are you able to get around, mobility-wise? Hope my questions are not annoying, just want to learn what I can. Thanks, Loretxx

elrose profile image
elrose in reply to

Have been on Prednisolone for 2-3yrs. The GCSF injection is supposed to 'force' ur bone marrow to produce white blood cells (which it does) but in my case my body destroys them just as fast lol. Fortunately my RA is okay-ish (feet and hands the worst, familiar story) I can get about okay, my feet hurt but am used to that (havent taken a step I havent felt in the last 15yrs) worse is the tiredness - but there isnt much choice but to keep going till you fall over..

gigi5 profile image
gigi5

I hope you feel better soon. I feel your pain and fatigue is the worse and no one can see how bad you feel.

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