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Rheumatoid Arthritis
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Posted 5/16/2009 3:47 AM (GMT 0)
I've been on MTX for a few years now, and two weeks ago I had to go into urgent care for something other than RA.  Anyway the doctor ran bloodwork and it came out that my red blood cell count is low, my neutrophils are low, but my mcv/mch? are both really high and out of range.  I tried to find information on the web and couldn't really find anything but it said some medications can cause it and I'm wondering if it is the MTX? I have an appointment on Monday with my pcp since the urgent care center told me I needed to see my doctor.

 

If you have had this happen, and it was caused by the MTX, how did you fix it? Did you get to stay on the MTX? I have taken so many medications for this RA, and I can't take the plaquinel, and I'm terrified that I will have to give up the MTX and it is the only medication I'm taking.  I have to admit, I have felt really puney the last few months, always tired.  I take the vitamins, folic acid etc, so I'm hoping someone here will have some advice.

 

Thanks in advance

Posted 5/16/2009 4:07 AM (GMT 0)
Your mcv and mch may be high because your rbc is low-this could all be iron defeciency or folate defeciency or low b-12.
Definetly talk to your doc but right after starting mtx I had really low hematocrit two weeks later I had tiny red blood cells-(high mcv). It went away when I took viton C and extra (3mgs a day) folic acid.

Just don't worry too much until you talk to your doctor. There are too many possibilities and many are bening.

You did not say why you went to urgent care but bleeding, an infection, and certain other accute health problems can cause some of these blood results.
Posted 5/16/2009 4:24 AM (GMT 0)

Hi Sj,

I've been on the MTX for a few years now, and a year ago I had the low B12 etc, but then we switched insurance companies and I wasn't able to go back to this pcp, but now we have insurance they accept so I can go back again, crazy I know!

I went to the urgent care for an ovarian cyst, which is the only reason I ever visit them.  I had a 4cm cyst, and the pain was just too much, so I went in for an u/s.  The doctor thought appendicitis and wanted to rule out infection with blood work.

It doesn't make any sense that I keep taking all of these vitamins (b12 etc) and it doesn't seem to work, so hopefully my doctor will have some answers.

Thanks Sj:)

 

Posted 5/16/2009 8:04 AM (GMT 0)
I dont know much about the drug, however, when the doctor wanted to put me on it, he could not due to my liver functions. So I do know it is really hard on the liver, and that needs routine bloodwork management (according to my doctor, he prescribed the meds, had me do labs and called me the next day saying DONT TAKE IT). So I know just enough to say you should be on routine bloodwork while on it.
Posted 5/16/2009 11:18 AM (GMT 0)
I have been on MTX for several months now and have to go in for monthly blood testing. It is so often b/c I take so many other medications that affect my liver. They do a CBC as well as check liver and kidney function (enzymes). A few months ago my kidney function went down a bit, but returned with dietary changes (more water) and my liver function went down, so they adjusted the dosage of MTX and it went back to normal within 2 weeks.
My neutrophils are always low, my hematocrit is always low, regardless of taking iron daily, and my WBC remains high. I can't say what is up with your blood work, but I can say that since you have complicating factors, maybe you should have regular blood work to monitor your status. It just seems easier to fix when we catch it early.
Posted 5/16/2009 3:25 PM (GMT 0)
Hi Christina and Smurfy,

The rheumy does his regular lab work every three months and in the 4 years I have been going there has never said anything has been wrong, so maybe it has to be really bad before he mentions it, who knows.  I know I did have his labs done, and my pcp labs done within the same week that one time and hers were different? Strange! Maybe I will ask her on Monday how that can be possible.

Anyway thanks for replying!

Posted 5/20/2009 1:01 AM (GMT 0)
Mom, the blood work for vitamin and mineral defeciencies is different to the normal blood work for liver function etc. I'm low in vit D because of mtx, so I am permanently on a supplement for that and the low vit D means I am not absorbing calcium so I am also on a supplement for that. B 12 is a common one to be low on with mtx. I think its such a toxic drug it probably needs full blood work every 1/2 year to check out all the vit and mineral levels, because you have been on it so long its probably depleted you of all sorts of vits!!! Go and get checked, can't you take humira? You can really lower your dosage of mtx once you're on it. Good luck , golitho
Posted 5/20/2009 1:44 PM (GMT 0)

Hi Golitho,

I went in to see my pcp and she thinks it is the low vitamin B12  possibly caused by the MTX.  She told me she is going to consult my rheumy and also ordered lab work for the B12 and folate to see how low I actually am..I hope my rheumy won't take me off of the MTX, since it is the only thing I'm taking for the RA right now.  I've never taken Humira, but I was taking the Enbrel for about a year or so but then the copay just got to be ridiculous and I found I could get by without it.

It would not surprise me if I am depleted of all sorts of vitamins! The MTX is so toxic as you mentioned and I do worry about that, but it does work for my joint pain.. I also have low blood calcium and have to take high amounts of calcium.  It seems that the folic acid and vitamin B12 etc that I take daily aren't working.

I'm hoping for the B12 injections, because I am so tired all of the time, she said it could be the reason for my low blood pressure which has been around 90/60.  So I guess I will wait and see what they say with the lab work. 

Thanks!

Posted 5/20/2009 4:55 PM (GMT 0)

Hi Mom

I havent posted in awhile, but found out yesterday I have an enlarged liver.  I have been suffering severe pain in that area and assumed it was my gallbladder.  Went on the gallbladder diet and had immediate relief.  Then the doc scheduled me for an ultra sound and you can imagine my shock yesterday finding out about my liver.  I am on MTX too, and I am thinking that is the cause.  I dont have the blood reading stats yet, but I will post it when I get it.

I think you will remember tht I have complained alot about MTX, making me feel so ill for days and now this!  The pain I have been having is scary to know now..that it is actual liver pain. :(

Anyway, I hope you are feeling better today, and I will bring my results here when I get them.  Some love MTX and do well on it....but not me.

Posted 5/20/2009 5:35 PM (GMT 0)

Ericsmom,

Oh no! That is awful :( Does your rheumy know about this? The MTX doesn't make me sick exactly, not like when I first started out on it..but lately I just feel awful.  Will you go off of the MTX? The pain I had was from an ovarian cyst but I just haven't bounced back from it like I normally would so I'm not really sure sad

That is scary to know it is your liver! MTX is toxic and I have heard a few people mention it has bothered their liver.  Please let me know when you get your results and how you are feeling and what they are going to do to get you on the mend.  You need to get your liver back to normal but still keep your RA in check.  Keep me posted.

Posted 5/22/2009 1:14 AM (GMT 0)
Hi Mom and Eric's mom, I read somewhere that hormone imbalances affect RA so be careful Mom with ovarian cysts. I suffer from the cysts too, had 2 removed, I'd love to get the ovaries removed to just stop them forming but of course they don't do that to healthy ovaries!!! I worry about the mtx too, I'm on 20mg as well as humira because the humira on its own doesn't seem to be enough!!! Lately I'm still flaring, I'm waiting for that magic plateau to happen and its been three years nearly of continual decline.... but back to mtx, it seems to wipe out your ability to absorb calcium and vit D obviously in your case B12 too. I've been on supplements for nearly a year and I'm still low in Vit D. I feel ridiculous living in Australia with so much sunshine being low in Vit D!!! It really helps me though and I no longer feel nauseous on it either, I also started taking nexium because my stomach was getting upset with the NSAIDS. Eric's mum what will they do with an enlarged liver? Have you tried humira? Or is that no good for fibro? I feel like I'm in this turmoil stage of whether to go back to the rheumy and try yet another rheumy drug on top of all that I am taking or whether to just live on pain killers or whetherto go alternative and try to detox myself as well. Mom, how is your vit D level?

Posted 5/22/2009 2:04 AM (GMT 0)
Am I the only one who's rhuemy does a complete metabolic panel and a cbc every 6 weeks?
B-12 is often poorly absorbed-if you are swallowing a b-12 pill it is likely doing nothing. You need to be taking it sublingually and for some people only injections will work to get the b-12 levels up.
Posted 5/22/2009 2:47 AM (GMT 0)
Hi Sj,

I guess so! I go about every 3 months or so.  Then I have the CBC, creatinine and something else but can't remember, but it is not a metabolic panel.  I've been going there for close to 4 years and never once have they ever called me and said anything was out of whack, not even last year when my levels were low...so I've went an entire year with low B12 sad I know it doesn't check for B12 specifically because that is a different test, but sheesh it should have shown the mch/mcv ect, because that is part of the CBC?

I don't think he is on the ball because the last time I went in, I had to fill out a form asking some questions since I had not been in for quite some time, and he never even glanced at it!

Anyway, he is the only one close by rolleyes

Posted 5/22/2009 2:47 AM (GMT 0)
I think so sjkly, its not my rheumy but my GP(PCP) who tests my blood for everything. Rheumy is only interested in liver, white blood cells etc.. I'm not exactly sure what she checks but I know it doesn't show up vitamin and mineral deficencies. You love your rheumy for a good reason!
Posted 5/22/2009 2:38 PM (GMT 0)

Golitho,

I missed your post about the pesty ovaries! I have had a cyst removed, and then scar tissue removed becacuse of the cyst and fibroids as well, what a mess.  I didn't realize that all of that could make the RA worse..I still have the one from a few weeks back and if it is still hanging around next month, I will go to the ob/gyn and get another opinion.  But then there is the MTX, and what to do with it if I need surgery. How long do I need to stop it before etc.

At one point I had a nurse practitioner tell me to have both removed? uh no..I'm not ready for menopause! I haven't had my vitamin D checked since I was diagnosed with the stomach paralysis, and that was not that long ago..I hate to give up the MTX, it is really evil, but it sure works!

Posted 5/22/2009 11:47 PM (GMT 0)
Hi Mom. I think I read it in a natureopathic type book, in relation to hormone imbalances can flare arthritis , so hopefully its not true!!! I read so much at times on that dream of finding just the right combo of alternative plus western treatment to bring some sort of relief. Cysts are the pits, I use to have severe endometriosis and cysts went with the territory but after my 3 kids it seems to be in remission but scans show my ovaries are now polycystic!!! I have these dumb radiologists that say oh you are so lucky to have 3 children when you have polycystic ovaries and don't seem to believe me when I say they're new! After years like the last 20 dealing with "women's problems" I'm over it. Now its sero negative arthritis, I feel like haven't I learnt enough about pain and suffering to now have this one thrown at me! But you must be feeling the same and with a stomach misbehaving to boot. Don't tell me thats drug related? I've just been put on nexium as I have stomach cramps with my NSAIDS, its some sort of drug to stop stomach ulcers! Is there any treatment for the paralysis? Are you stuck on the liquid diet forever?
My next course of treatment is hydro-therapy? Have you tried that? I've been getting severe numbness in my hands, mainly my left one and they think its from my neck!!! Affecting my thumb and first 2 fingers plus elbow. I'm so sick of all this inflammation, sorry for the rave...golitho
Posted 5/23/2009 1:46 AM (GMT 0)
My PCP never orders labe. My rhuemy is keeping vampires in her closet. Even when she lets me go three months between appointments I have to go to lab corp half way through to get a CBC and CMP.
She has called me a few times when things were not exactly right. She does SED and CRP everytime I am in her office which means every 8-13 weeks depending on how my health has been.
I love her more now.
Posted 5/23/2009 8:44 PM (GMT 0)
Hi Golitho,

Go ahead and rant! After my first cystectomy/myomectomy it was all downhill from there.  After that I went in a couple of years later for a lap to remove adhesions, only it was such a mess that it turned into a lapraotomy (sp?) and a six week recovery time.  Now it has been the right ovary with chronic cysts, and I'm pretty certain more adhesions from my last surgery.  I would like to have the ovary out, and it is possible since I have a history of cysts and I'm 38, it is just the MTX, I would have to stop it, but for how long etc.

I'm pretty sure that my immune system was starting to go haywire before I was diagnosed with the RA because I was going through infertility treatments, and when I first started out, my FSH level was 5 at age 30, and then at age 33, it had spiked to 35 which I was told was the number of a 50 year old woman, how encouraging! My doctor diagnosed me with premature ovarian failure. No matter how much medication was used, my ovaries weren't going to cooperate, and I had already had 3 children without help, so it was just one of those things like the RA that there wasn't an answer for.

After the RA, the inflammation seemed to show up in my bladder, with the interstial cystitis, and I have the Elmiron for that, but gee at 4 pills a day, I gave up and decided to stock up on AZO :-)   As for the stomach paralysis, no cause was found and the first medication gave me horrid headaches, so I just decided to be careful about what I eat, and go that route.  The other medication isn't FDA approved and I would have to have my heart monitored, that is scary to me, so I decided against that one as well.

For your PCOS..do you take Metformin? (Glucophage) That is frustrating, because sometimes our bodies just don't work like they did when we were younger!

It's nice to know someone else is in the same boat with the horrid cysts, thanks for sharing!

Posted 5/26/2009 12:29 AM (GMT 0)
Yeah I really hate the cysts, I had an ectopic pregnancy because of a large cyst on my right ovary stopping the peristaltic action of my tubes. So had the same laparotomy as you! Not fun at all! Plus I was in a bed next to this hilarious woman who made me laugh all the time, it hurt so bad. Funny looking back on it now but I remember crying with the pain! Had 2 smaller cysts removed by key hole sugery, then suffered from adhesions and had them lasered off by keyhole too. Currently I'm an ostrich, ignoring all abdominal pain as long as its familiar I figure its just the cysts. I've been told to watch out for shoulder pain as it can indicate burst cysts bleeding internally...great! You sound so like me with all this inflammation everywhere!
I've tried to de stress this year but with 3 kids its not easy. I'm a naturally busy person I fnd it hard to slow down, this arthritis is really getting me down. As I am an artist I'm glad it seems to be mainly concentrated in my left hand, the right only an echo of the pain and numbness. My knees seem to be swelling again too especially after a day of teaching, plus I have developed bursitis in my hips. I really don't want to develop arthritis in my back too.
What is PCOS? I thought metformin was for diabetes?
How is your daughter now? Did she ever get over the knee and elbow pain? Its great to know someone else out there with these overlapping conditions, if its not my ovaries its my chest or its my sero neg arthritis!!!
Posted 5/26/2009 2:54 PM (GMT 0)

Hi Golitho,

I'm so sorry to hear about your ectopic pregnancy..I have heard of cysts interferring with the tubes and causing all sorts of issues.  I remember with my myomectomy the nurse wanted me to sit upright to get out of bed and it felt as if someone was stabbing a knife into my stomach, I don't think she had ever had such a surgery? Anyway, a very nice nurse aide who mentioned she had had a surgery similar to mine showed me how to turn over onto my side and get out of bed that way.

I guess over here we just shorten the poly cystic ovarian syndrome to PCOS? and yes, the Metformin is used for diabetics but it is also used for ladies with PCOS, at least here anyway.  I've never heard of the keyhole procedure? unless it is something new? I haven't had any surgery since 05, is it like the laprascopic? less invasive? I have to admit any of those surgeries do not sound the least bit appealing! I didn't do well on the last one and ended up having some strange reaction where I swelled up like a balloon to the point I had to have my wedding ring cut off and a high fever, it was a strange recovery to say the least!

I seem to be having inflammation everywhere for whatever reason, and even my husband commented that I'm flaring because I felt really warm this morning..this is not the way I wanted to start out my summer break..feeling puney and flaring rolleyes   This is supposed to be my spring cleaning time, and it is slow going! I decided to start back on my Elmiron for the IC, hoping that would get rid of that issue at least. I feel like an old lady and pretty soon I'm going to need one of those Monday through Sunday containers to keep track of all my meds :-) I went and got the B12 shot last Friday and for whatever reason thought I would have this miraculous change and would be energetic and full of life tongue  I'm a bit dissapointed sad Although someone posted and mentioned that it took a couple of months so there is still hope for that one!

How old are your children? My sons are 15 1/2, almost 17 and my daughter is 12, so I know it can be difficult to stay de-stressed with family and a hectic schedule.

Time for another cup of coffee, I actually stopped drinking it for awhile, but in the last couple of weeks I really need it to get going!

Posted 5/27/2009 3:16 AM (GMT 0)
Hi Mom, oh stupid me, of course, I don't have the syndrome just the polycystic ovaries!!! So no treatment just cyclic pain! My kids are 15, daughter super sports women!!! 13, son soccer mad with a bit of athletics (javelin) plus youngest son 9, he's my handful. A true drama queen, loves anything creative, dancing, acting, art plus music, but he is also in a great soccer team, undefeated this season!!! I knew nothing about soccer when they all started and now I'm one of those soccer mum's shouting encouragement from the sidelines! I love them all and spend most weekends driving them to sporting venues or carpooling training.
This year I got a lot of afternoon classes so I hired a nanny. It's been great, she's done all the running round, even if it does take a huge chunk of my pay its been a lot less stressful for me and well worth it. I'm on my last 2 weeks of teaching before our winter break, can't wait as my body has really struggled this term.
I start hydrotherapy next week to help my hips and back, I'm feeling so unfit, its hard to walk far and walking has been my main source of exercise. I feel flabby and out of condition. I have trouble sleeping (hips and knees) and use coffee to keep me alert during the day. Tried different cures but the side effects proving too much so I'm back to pain killers again!!!
Did you get the results of your blood tests? I'm sorry the B12 didn't work instantly, but goodluck with the treatment, I feel better on the D's and calcium. Lets hope you become super women over the next 2 weeks!!! Golitho
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