Started Methotrexate today

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BEW_thatwasfast
Regular Member


Date Joined Sep 2011
Total Posts : 51
   Posted 10/20/2011 10:44 AM (GMT -6)   
Hi all,
 
Newbie here.  My rheumie started me on methotrexate 2.5 mg, 4 pills once a week, in addition to the 200mg of plaquenil I take daily.  I also got a cortisone shot in the butt, a script for folic acid, and a pain pill.
 
Does anyone else take methotrexate?  Can you tell me what (if any) side effects you experienced?  I looked at the prescription information page that my pharmacy gave me, and it was pretty scary.  Honest to God, the first sentence starts, 'WARNING: THIS MEDICINE MAY CAUSE SEVERE AND SOMETIMES FATAL SIDE EFFECTS INCLUDING BONE MARROW, BLOOD, LIVER, LUNG, KIDNEY, OR SKIN PROBLEMS'.
 
Is that all?
 
LOL.
 
I'd appreciate hearing from someone who has been on this medication a while, to hear how you are faring and what you've experienced.
 
Thanks,
Brandi
dx SLE 07/2011, OCD 2006, osteoarthritis 2002

Dodd
Regular Member


Date Joined May 2011
Total Posts : 34
   Posted 10/20/2011 7:46 PM (GMT -6)   
My wife has been taking MTX for about 5 months now. Honestly, we are more afraid of the side effects of some of the other drugs she takes. Your rheumy shoud monitor your lab work to make sure everything is ok. She takes hers by injection instead of the pills because it's suppose to be easier to tolerate per her doctor. It might be hard to tell the side effects from the disease but we think it has caused her to have some hair loss (not major) and she has had some mouth ulcers. I think the folic acid is suppose to help with it. She takes her shot every wed night and Thurs she feels more crappy than usual. I've read a lot of good things about MTX but we are disappointed with the results. I don't think it's doing anything. Not trying to discourage you because it dies help a lot of people. I hope it works for you.

BEW_thatwasfast
Regular Member


Date Joined Sep 2011
Total Posts : 51
   Posted 10/21/2011 7:23 AM (GMT -6)   
Thanks Dodd for the feedback. I appreciate hearing how your wife is tolerating the medicine, since I wasn't sure what to expect.

Quick follow up - I took my first dose (10mg) yesterday, and this morning I feel like crap. I am nauseous and tired and feeling run down. I hope this gets better over the next day or two.

:-(

Bleh.

Brandi
dx SLE 07/2011, OCD 2006, osteoarthritis 2002

Dodd
Regular Member


Date Joined May 2011
Total Posts : 34
   Posted 10/21/2011 4:04 PM (GMT -6)   
Hope you feel better Brandi. My wife has this disease very bad and never feels good but she goes back to "normal" two days later.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 10/22/2011 2:12 PM (GMT -6)   
Ive took methotrexate over a year. The only annoying things I get is a tad nasau and my hair thinning out. But I'm a typical female.... i don't wanna lose my hair (again) LOL.

I was on a higher dose, I took 25 mg a week, by shots
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

BEW_thatwasfast
Regular Member


Date Joined Sep 2011
Total Posts : 51
   Posted 10/26/2011 9:19 AM (GMT -6)   
Update:. 
 
Took my second weekly dose of methotrexate yesterday. 
Today I feel like I'm either coming down with a cold or like a car ran me over in my sleep last night. 
Sore throat, extremely tired, sneezing and runny nose, plus feeling cold (I'm wearing a sweater in 76 degree weather today).
 
Brandi

Dodd
Regular Member


Date Joined May 2011
Total Posts : 34
   Posted 10/27/2011 3:31 AM (GMT -6)   
Brandi, sorry you still aren't feeling well. Maybe ask your doctor if you can take it by injection. It's suppose to have less side effects and I think it's suppose to work better. That being said, my wife feels worse the next day and it's not helping her as I stated earlier.

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 10/27/2011 8:18 PM (GMT -6)   
Well this sucks cuz this is my next option since the Prednisone and Plaquenil and NSAIDS haven't worked....UGGH. Hope you get feeling better...you Brandi and your wife Dodd!....If it's any consolation I am not feeling well either....
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-2mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*

BEW_thatwasfast
Regular Member


Date Joined Sep 2011
Total Posts : 51
   Posted 10/28/2011 10:49 AM (GMT -6)   
Hey Lord Walters Lady Bug,
 
I didn't mean to scare you off methotrexate!  We all have different reactions to medication, and you might tolerate this a lot better than I have.  I'm hopeful that I'll become accustomed to it over the next couple months.  I found this excellent article that I wanted to share with you.  Maybe you will get the same reassurance that I did out of it.
---------------------------------
Today, let us focus on Methotrexate; the king of DMARDs. Yes, you heard it right.. The King. It has been crowned the king by Rheumies, Scientists & patients alike.

  • Rheumatologists- it is the most frequently prescribed DMARD for Rheumatoid Arthritis (RA) across the globe.
    Scientists – Most studies of biologics include patients who are not responding to Methotrexate, underlying its role as the most important DMARD.
    Patients- Studies have shown that patients continue Methotrexate longer than any other DMARD; thus making it the most tolerated DMARD.


So, if you have RA & are on Methotrexate, be rest assured that you are with the King. You are taking the world’s most trusted DMARD.  For the newly diagnosed, someone may scare you that Methotrexate is a cancer medication. Yes it is; but in a very high dose as compared to that for RA. Just the way salt is used in many dishes, even drugs like Methotrexate are used in many different conditions. And, mind you, RA is akin to cancer. The swollen rogue synovium proliferates like a cancer tissue & eats up the cartilage & bones. Methotrexate works against these rogue cells, be it cancer or RA.


dx SLE 07/2011, OCD 2006, osteoarthritis 2002

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5414
   Posted 10/28/2011 11:10 AM (GMT -6)   
There are 3 "big guns" that rheumies usually try with LUPUS patients, as we all react different to each one. Lupus is mysterious enough that it's mostly a trial & error experiment, no way to know which if these might work best for an individual patient.

These are Cellcept, Imuran and Methotrexate (MTX). Each of these has some rather serious side effects possible -- but remember if it happens to even 1 person out of a 500 person trial they have to list it. If you have a strong preference as to what order you want to try these in, talk to your doctor -- although you might get different results depending on doctor, country, etc -- not all drs are very flexible.

I know Lupus patients who have had good results with each of these 3, others who have had no results from the same 3, and any other combination you can think of. Which order to try them in is usually just up to your particular doctors opinion.

For me, I started with Imuran for 6 months -- it did no harm, but didn't seem to help any either. Then we tried Cellcept - for me, this was my miracle drug that saved me from serious cognitive dysfunction and seems to have sent my Lupus into a 'quiet' state. I'm now off of Cellcept, even off of Prednisone, and am maintaining well on Plaquenil.

Also, note that the previous post about MTX being the 'king' doesn't have any references to indicate whether it came from a scientific journal or personal opinion, and that it refers to how MTX works with RA -- RA is significantly different than Lupus!

Feel better soon!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 10/29/2011 9:36 AM (GMT -6)   
Thanks to you both for the posts and for the record, I was not scared out of MTX at all...just kind of disappointed the prednisone didn't work...but oh well..like you said Lynnwood, we are all different and react differently. Guess this is just another trial to test out(MTX)...we'll see how it goes. Thanks again. Hope you feel okay. -Brittanee
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-2mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*

BEW_thatwasfast
Regular Member


Date Joined Sep 2011
Total Posts : 51
   Posted 11/2/2011 8:32 AM (GMT -6)   
Update: third week of methotrexate. I seem to have adjusted! No vomiting, very little nausea, some upset tummy. The only thing that stayed about the same was my level of fatigue.

I am feeling quite relieved! I was worried the side effects would stay that miserable.

Cheers,
Brandi
dx: SLE 07/2011, OCD 2006, osteoarthritis 2002
rx: plaquenil 200mg/day, methotrexate 10 mg/week, NSAID for pain, zoloft 200 mg, folic acid

DAZZ
New Member


Date Joined Jun 2011
Total Posts : 6
   Posted 1/13/2012 8:01 AM (GMT -6)   
I was diagnosed with Lupus in 1990 and took Plaquenil until 2011, partial loss of vision behind my retina, due to inflammation, switched to Imuran and started breaking out with warts and going to dermatologist every two weeks for treatments. Stopped the Imuran for about 5-6 weeks now, warts are gone but feel I'm getting pleurisy and have extreme joint pain. Calling my rheumy today to start methotrexate. Plaquenil 200 mg 2 times a day worked so well for me , Imuran all blood work looked excellent but even taking it at night I had nausea and the warts, though an ugly inconvenience, turned up in my cervix due to hpv. Hoping methotrexate will help like Plaquenil, have to wait and see.

Fingers crossed,
Dazz
__________________________________________________________

dx: SLE 09/1990, Fibromyalgia 2000, osteoarthritis 2005
rx: NSAID 800 mg 3 x day; Vocodin, Zoloft, & ketamine nasal spray (for Fibro)

BEW_thatwasfast
Regular Member


Date Joined Sep 2011
Total Posts : 51
   Posted 1/13/2012 11:32 AM (GMT -6)   
Good luck Dazz!
 
(((hugs)))
 
We all react differently to these medications (Thank You, Lupus), but I hope you tolerate this well and see a reduction in your symptoms. 
 
I actually switched to CellCept about 2 months ago and have been doing awesome on it, but it took trying 2 or 3 different meds before my rheumy and I found the right one.  Just be patient!!!
 
wink  
 
Brandi
dx: SLE 07/2011, OCD 2006, osteoarthritis 2002
rx: CellCept 2,000mg/day, NSAID for pain, zoloft 200 mg

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 4/12/2012 10:48 AM (GMT -6)   
Hi all...I had posted on here a few weeks back...My rheumy started me on Methotrexate. I've been on 5.0mg because of my weight(96lbs...i'm underweight and we don't know why and I haven't been able to gain anything despite everything I've tried.) I was really out of it yesterday but I can't tell if it's from Lupus or the med. I took my first dose Tuesday night this week. I'll take another 5mg next week, get a good bit of labs done and then the 3rd week I will add the 3rd pill to go up to 7.5mg. I am on the folic acid 1mg/day and have been taking that at night as well for a while now so perhaps it will help with the side effects. I like so many others was preparing for the worst. I've had a headache and had chills and a low-grade temp(99.3)yesterday and rash from sun through my windows...ridiculous...lol.... I'm just wondering if the side effects are slow to react like the drug outcome is or if what I feel now on the 5.0mg is what I'll feel on the 7.5mg or a higher dose? This stuff is confusing! LOL

By the way, my rheumy also said she thinks when I try to come off Prednisone I am having adrenal insufficiency(I had a low cortisol level one out of the 3 failed attempts at tapering), Steroid withdrawal and Lupus inflammation. So I'm a winner all around! lol I was told my labs over time continued to show low complements and disease activity despite having just been on a high dose of prednisone( 125mg Solumedrol shot and 40mgs Pred for 5 days) and that my last ANA was higher than it ever has been and the pattern was now just Homogenous rather than both that and Speckled. I know after MTX there was mention of Benlysta so we'll see what this brings! Hopefully I can get off Pred because I'm already at an increased risk of diabetes from it. My Rheumy is referring me to an Endocrinologist to see if they can give me a different formulation of the Prednisone to try and get my body to cooperate. Our immune systems have a mind of their own!

P.S. How many people have had problems with MTX side effects like bone marrow suppression and/or the liver complications, hair loss, vomiting, etc? Is it really all that common?

Thanks. Take care and God Bless.
-LB
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-1mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Lyrica 50mgs 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*

heathermnrd
New Member


Date Joined Dec 2011
Total Posts : 16
   Posted 4/17/2012 10:17 PM (GMT -6)   
Hey Lupie Britt and everyone else.
 
ive been on MTX for about 3 months now and really the only side effect ive had is being more tired.  I generally take it before bed and will sleep for atleast 12 hrs, usually more.  So i just take it when i dont have to work the next day lol.  as for other symptoms i think im starting to notice a little hair loss but im not sure if its from the medication or the lupus cuz that was one of my big original symptoms.
 
good luck!! so far i like this med other than the fatique and not being able to drink my swelling and joint pain have really gone down.
Heather.

12/2010- Dx Crohn's Disease
04/2011- SLE.

Currently taking:
-Apriso
-Prednisone (5mg every other day)
-Methotrexate
-Plaquenil
-Folic acid

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 2/11/2013 12:30 AM (GMT -6)   
I took my first dose of MTX last weds. After being on 400 mg og Placqunil for a yr the dr decided it was time to switch because symptoms of Lupus were getting worse and I had a second flare within a week's time the second being totally unbearable. I take a total of six pills (15mg total) in addition to now taking 20 mg pred daily and 1 mg folate daily along with 1200 mg gabapentin daily. This also followed having solumedrol iv infusions for three days . I'm not sure if how I have felt following taking first dose is r/t MTX or the flare but I hurt all over to pint I could not even touch any part of my head, neck, chest, back. I'm hoping to return back to work this week. Any ideas?

bluejeans
Regular Member


Date Joined Dec 2012
Total Posts : 266
   Posted 2/11/2013 5:52 PM (GMT -6)   
I have been on 200 mg plaquenil since 2005. and 10 mg predisone for the last 18 months. Joint pain, fatique etc worse since Thanksgiving. Dr started me on Rituxan infusions in Jan. My joint pain is much better and so is my energy level. My eyes are not as dry and neither is my mouth, hopefully is may have some effect on the sjorgrens.
Post lymphoma, Spleenectomy, Lupus, Sjorgrens, RA, Anti-phosphoid syndrome, Fibromyalgia, GERD, short bowel syndrome, scolisis, arthritis of spine, spondylosis, splondylesis, DDD,DJD

Faith in God, the love of my family and a good attitude keeps me going.
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