I'm back with questions about mtx

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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/1/2009 7:16 PM (GMT -7)   
Hello everyone.  It seems like forever since I've been here - I can't even remember when I last posted.  I feel bad for just kind of disappearing like I did.  My life got so busy and I was dealing with lots of ups and downs of lupus.  For a while I just tried to ignore being sick, but that didn't end up working too well.  Things are still really busy with my kids and their activities which I really enjoy, but things have slowly been getting worse with my lupus.
 
My rheumy and I have been trying to put off using any imunosuppressant drugs, but I'm just dragging through my days now and don't feel like I've had a good day in a long time.  At my appointment yesterday, he said he thought it was time to try methotrexate and that hopefully over time it would allow me to get off of prednisone which would be great.
 
I'm nervous about starting a new med and about how my body will react.  I think he's starting me at 10mg and I'll stay there for about 2 months and maybe increase it some then.  I'm going to take my first dose Sat evening so I can rest on Sunday if I feel sick since my hubby will be able to take care of the kids.  I was just wondering what I should expect when I first start taking the mtx and what other people's experience has been.
 
I've missed all of you.  I'm not sure how often I'll post, but I have a feeling I'll be around more often again.

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 9/1/2009 8:13 PM (GMT -7)   
Hi. I am so sorry that you are having a rough time. Enjoying our kids and their activities should not mean that we have to suffer. This disease is so frustrating.
I have never tried methotrexate. . However, I have been on the generic CellCept for about 4 weeks, now, and the difference is amazing. It, too, is an immunosupressant. I did have an allergic type reaction when I first tried it. So, I stopped and then gradually restarted. This seemed to do the trick. The pain and joint swelling have really decreased. I did not realize how bad I was getting! My "fatigue factor" has greatly improved. And the best part is my "brain function". I am so much clearer, now, the "fog" is gone.
Hopefully, you will have the same positive response to the mtx. Good Luck!!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.

Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept

Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 9/1/2009 8:37 PM (GMT -7)   
Hi, Good to see you Hippi! We've missed you!
Glad you are trying something different when the old stuff doesn't work!

Sorry I don't have any MTX experiance to share, my dr started w/Imuran, then Cellcept, I think MTX would have been his third choice but the Cellcept helped me out.

I know there are several MTX folks on here, I'm sure they'll come along soon,
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/1/2009 9:30 PM (GMT -7)   
Thanks Lynnwood and Fran. I'm starting to have a lot of anxiety about it, but I know some of that is because it's late and I'm tired. I have just read some stories online about people who are sick for days from side effects and I need to be able to function since hubby is not home enough during the week to help get kids where they need to be. The flip side is that there are plenty of people who take it with minimal side effects, but of course, I focus in on the negative experiences and freak out :(

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/1/2009 10:13 PM (GMT -7)   
hey hippimom, I haven't done mtx I have done cell cept but only for 3 months and have long term experience with imuran which has literally changed my life. I hope it goes really well for you. I too haven't been able to post much, something has gotten in the way. I try to keep up with everyone though and have been wondering about how you are doing.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 533
   Posted 9/2/2009 6:07 AM (GMT -7)   

Hi Hippi,

I've been taking Mtx for about two years now.  I know how you feel and I definitely prepared for the worst when I first took it.  Made sure I had seven up, soup, ginger cookies on hand for nausea.  But, guess what?  I have never really gotten sick in all this time.  I usually take it Friday nights so I can rest on the weekends with it.  I have had maybe 3 or 4 times when I can say I experienced a little bit of nausea.  It wasn't bad enough to really make me sick though.  On the good side, I can say I defiitely feel better taking it and can tell when I haven't.

I hope this helps calm some of the uneasiness you are experiencing.  Let us know how it goes.

 


 
** MCTD,Fibromyalgia,Raynaud's June 2005
**Pulmonary stenosis, High blood pressure, IBS, degenerative disc disease, vertigo
**Meds:  Plaquenil, MTX, Lyrica, Folic Acid, Metoprolol, Lotrel, Vicodin
 "No matter what happens, God is in control.  He is God, I am not, what a relief!"


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/2/2009 6:44 AM (GMT -7)   
Hi Hippi, I post here and on the fibromyalgia forum

I started taking methotrexate in April. I take it on Mondays right after I have finished my
evening meal. I am lucky that I never had any bad side effects. My bloodwork is monitored
closely and one time my liver enzymes were elevated slightly, but went down by the next
check.

Honestly I can't say I have seen any noticable differance since I started taking it. I
started at 10mg. My rheumy lowered it to 7.5 mg after he put me on Savella, med I
take for fibromyalgia. I have been flaring, so I don't know what is up.

Initially I was nervous about starting the MTX, there is always a risk with any med you take,
but it helps to know they monitor you closely while you are on it.

Hope it works for you

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/2/2009 10:48 AM (GMT -7)   
Hi Hippi:
 
I'm so sorry that you've been having such a hard time.  I've missed not seeing you and today when I spoke with Carol on the phone she and I were wondering how you were doing. 
 
I've been on Mtx for almost 1 year now and I take the max oral dose of 25mg per week.  I normally don't have any nausea from it a bit of fatigue the next day but over all no real side effects from it.  Ocassionaly, I'll get some mouth sores from it but Folic Acid helps with that.  I also took Mtx back in 2002 and again at the highest oral dose and I really didn't have to many side effects.  It can take a bit of time to adjust to but I never had vomiting or anything that serious.  I'd suggest you take it Friday night go to bed and if you'll have any side effects, hopefully you'll sleep through it.  I hope on Saturday you feel alright and just give yourself time to rest.
 
If you have any questions I'll be more than happy to answer them for you.  You have my personal email so you can email me or leave a post here.  I'm not doing to well and it looks like I'll be going into the hospital tomorrow for some IV fluids.  I'll email you my cell number and if you need give me a call and I'll be more than happy to put your anxieties to rest.
 
So glad to see you back.
 
Hugs,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 9/2/2009 2:22 PM (GMT -7)   
Hi Hippi, we've been missing you!!!! Sorry to hear your lupus is acting up.

Methotrexate has been really good for me and my joint pain, especially in my hips and lower back. My rhuemy started me on 3 - 2.5 mg tabs a week in Feb 08 I was doing ok, maybe just a little tired here and there until she increased it to 5 tabs in July and my body hasn't reacted well to that. Of course it could also mean I'm in a flare since I'm working 35 hrs (5 days) a week instead of 32 hours (4 days).... who knows eyes

Be sure to take your folic acid and with plenty of food, in fact your biggest meal. Your doctor should also monitor your labs every couple of months or so, I have mine done every 2 months. Please let us know how it goes.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/2/2009 3:15 PM (GMT -7)   
Hey Hippie,
 
I am sorry to say that I had to stop Methotrexate because of  side effect that caused me to have really dark depression.  this side effect is rare however, so probably you will not have it.
 
EXcept for that depression, methotrexate was wonderful.  especially not having the  lupus fog, no diarrhea, had so many good days, it was wonderful.
 
Hester
Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


christine_rightbrain_writesjunk
New Member


Date Joined May 2009
Total Posts : 17
   Posted 9/2/2009 3:53 PM (GMT -7)   
I have been on methotrexate for about two months. I was so nervous about taking it as well. I was slightly sick the first few doses. I mean slightly..but nothing I hadn't experienced with my illness...nothing even close to as bad. And it made me much better. As a matter of fact, right now I feel it is not working as well (I am still on 10 mg). I do not get sick when I take it at all, but I am also having flares of my illness. It does help a lot with pain and fatigue for me. I am glad I did it and hope my blood work continues to allow me to take it. I have had a few stomach bugs and wonder if it is because of the ability to catch germs quicker. Be careful about washing hands and what you eat....all common sense stuff. Good luck.. Christine
CTDU/Probable SLE- Peripheral Neuropathy, Partial Complex Seizures, Severe and chronic joint pain/fatigue, Sun sensitivity, butterfly rash, vitamin D deficiency, skin rash in sun, Skin rashes, mouth, lip, nose sores, Hair loss, head sores, some muscle pain, Muscle cramps, Vascular: Raynoids syndrome, Hx of Pericarditis x 4, Severe Dry mouth, persistent, Thyroid Disease, hx of moderate asthma, lung inflammation at onset of illness, hx elevated RF, recent protein serum elevated. No positive ANA yet


Methotrexate, 2.5 mg (4tabs 1x a week) Folic Acid (1mg daily), Plaqunil 600mg day, Topomax 200mg day (neurapathy), Ultram 100mg (prn) pain, flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, lexapro 5mg, (mild anxiety),

~nothing is impossible~


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/2/2009 6:16 PM (GMT -7)   
Wow, thanks for all of the replies. It helps a lot hearing how the mtx has affected others. I'm mostly scared of feeling really sick, but it sounds like that is not happening for a lot of you who take it with folic acid and a good meal. I know there is always the chance I could react poorly to it. I wish wasn't so anxious about it. I hope I respond well to it and that I can eventually get off of prednisone.
 
I want to catch up and post more.  I have been doing a little bit of substituting at my kids' school and I subbed today so I am completely worn out.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/3/2009 6:47 AM (GMT -7)   
Hipppi!!!! It's good to hear from you.

My experience with Methotrexate was about 4 years ago. I don't remember getting sick from it, but it did cause me to be more tired than I already was so I discontinued it after a few months. That was the beginning of our attempts to find just the right meds for me. The one thing I've learned here is that we all react differently to meds and I hope this will be the magic pill for you.

((((Hugs))))

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 9/3/2009 12:25 PM (GMT -7)   

Hippi,

I did not read everyone else's post, but I wanted to quickly let you know that I, also, was very scared to try mtx.  When I finally made the decision to do it, however, it made a signficiant difference in just a few months.  Now, i can't imagine what I would feel like without it.  I was started out on 7.5 mg/week (which is low), but I didn't start feeling anything until it was raised to 15mg/week.  Starting you at 10mg/week is probably a good idea.  When I first started taking it, I found that it made me a tad bit queasy (honestly, not as bad as plaquenil did), and very tired for a day or two after taking it.  AFter being on it for a few months, however, I didn't experience any side effects.  I also take enbrel for my joints, but if I had to choose between them I would go with mtx hands-down.

 

It's not as scary a drug as it's made out to be (IMHO).

Best of luck on your decision,

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Lupus
Current Meds: Enbrel, Methotrexate, nexium, tramadol, nasonex, Nifedipine, Folic Acid, Tylenol PM


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/4/2009 3:44 PM (GMT -7)   
Thanks everyone. I talked to my rheumy about it again today and he was very reassuring and spent a lot of time talking to me about my fears. Just to ease my anxiety he said I could start out at 5mg and increase it each week by 2.5 until I am at 10mg. After my first round of labs in a month he will probably increase it again. I'm still anxious but I'm not freaking out anymore.  I'm going to take my first dose tomorrow night.  Wish me luck.


dx: UCTD (lupus)
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 9/4/2009 8:36 PM (GMT -7)   

Best of luck, Hippi!  I really understand the anxiety issue with a new med.  I put off taking Plaquenil for so long because of it - and turns out my fears did not materialize.  Hope the same happens for you and you get all the benefits. 

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/5/2009 8:08 AM (GMT -7)   
It was absolutely a wonderful medicine while I took it.  eliminated lupus fog, and found myself having motivation that I had not had for a long time.
 
Hester
Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,   Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, simvastin, Lasinopril, Aggrenox, promethazine, Folic Acid, Restasis  


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/6/2009 7:33 AM (GMT -7)   
Well, I took my first dose last night and I seem to be tollerating it okay. I think starting at 5mg was a good idea. I don't think I'll be so anxious about taking it anymore.
dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 9/6/2009 7:39 AM (GMT -7)   
Good you - getting ready for that first dose is the biggest hurdle. Hope you see good results with little or no side effects!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.

Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept

Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

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