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Posted 5/6/2007 2:31 AM (GMT 0)
Hi! I am starting methotrexate for my lupus and I was just wondering what to expect?? Please share your stories with me.

Hugs!

Cathy

Posted 5/6/2007 3:06 AM (GMT 0)
Hi Cathy:

I take methotrexate and have been on it for over 1 yr now. In the begining a had a little nausea, and I was tired the next day after taking it Now I don't even notice that it affects me. It can cause mouth sores, so some docs prescribe folic acid with it. You need to make sure that your liver function is tested at a minimum every month, to a maximum every two months. I believe the biggest dose that you can take orally is 25mg anything over than you will do injections.

Some people do better with the injections, I've heard that the side effects aren't as bad. I look at it like it's relavant to what you're used to. I took cytoxan orally and then IV and that caused a lot of side effects for me, so the methotrexate is mild to me.

I hope that it helps you and you begin to feel much better soon. Good luck and I hope some other members come along and share their experience with you. This is my second time on methotrexate, I have to say, I really don't think it's doing much for me. However, I'm dealing with the MDS too, I think the two diseases are feeding off of each other. Keep us updated on how you do with the methotrexate.

Take care,
Barbara
Posted 5/6/2007 12:23 PM (GMT 0)
Cathy, I haven't taken mtx, but quite a few of our members have taken it and I think quite a few of them have had good results. One of our old moderators got quite a bit better and was actually enjoying a pretty good quality of life last time I was in touch with her. I hope the mtx works well for you with limitted side effects. Take care and keep us updated on how it is going.
Posted 5/6/2007 1:42 PM (GMT 0)
I've been on it over a year now. It took several months and getting to my current dosage for me to really tell the difference. I wouldn't say I'm back to my old self, but I am certainly much better. No real side effects to speak of. I did get one mouth sore. My rheumy upped my folic acid by way of Metanx which is a folic acid/B vitamin combo and I haven't had another since. I take it on Sunday nights with a high carb snack to avoid any queasiness.
Posted 5/6/2007 5:54 PM (GMT 0)
Hi Cathy,

I too have been on mtx for over a year now and I have had great results. I started out using the pill form, but then changed to the injectable, because it upset my stomach. In the begining I had nausea, and fatigue, but your body seems to adjust to it and the side effects seem to lessen with time. This med has helped me with my joint pain etc. I sometimes have periods where I forget that I have lupus, which is a great thing!

Good Luck,

Karen
Posted 5/7/2007 12:57 AM (GMT 0)

Thanks guys for all your support!! I have been scared to death to start this med cause I heard fatal lung infections etc and I have COPD so it scares me. However the lupus has attacked pancreas, kidneys have cysts on liver and am having CNS symptoms so I have no choice as Immuran didn't work out for me and was sick all the time with one infection after another. My doc gave instructions to take it once per week I start on 3 (2.5mg) untill I get up to 6 pills per week and stay at 6. I increase a pill each week. He also instructed me to take 2 400micromg of folic acid each day. Labs after my 3rd dose then 2 months thereafter. At least I know theuniversal DX code for SLE lol it is 710.0 as thats what it states on my papers and lab orders.

I noticed it states may cause dizziness is this true?? Some have said you lose hair which I don't care if it works as I feel like I am dying everyday!! Do you people have skipping heart beats??

Thanks again you all may have just made me brave enough to try starting this tonight :)

By the way did you check out my designs?? http://www.cafepress.com/cathysue  I know they may not look the best but I done designs myself :)

Any of you have any ideas for other designs let me know

Huggers!!

Cathy

Posted 5/7/2007 12:27 PM (GMT 0)
Hi Cathy, I have been on Metho for two years now and have had no problems with it, other then losing my hair. As long as I take it with food then I am ok. I take mine every Wed. morning with my breakfast and forget about it. Hopefully you will have no problem with it neither. Good luck.

 

Connie smurf

Posted 5/8/2007 10:51 PM (GMT 0)
Hi Cathy.  I've been on mtrx for 7 months.  After the first couple of months my hematocrit dropped from 37 to 29 (anemia), but it rebounded within a few weeks.  It also made me very tired at first, nausea, and hair loss, but I have had many days in the last 7 months that I feel my rheumy has given me a life back.  Although I haven't been doing well the past few weeks, those good days were wonderful and I continue to have some okay days.  I hope you also find some relief and smiles!  Hugs

Posted 5/8/2007 11:36 PM (GMT 0)

Hi Cathy,

   I took MTX about 12 years ago and felt great while taking it. I had no side effects and worked full-time. I did have to come off it due to abnormal liver function tests but, I hated to come off it since I was feeling so good.

  I hope this works well for you and you tolerate it well also. Keep us updated and take care. Good luck. You will be in my thoughts and prayers.

                                                                   Babs

Posted 5/9/2007 2:51 AM (GMT 0)
Cathy, how does the sle affect your pancreas? The reason I ask is I have tumid lupus & my last serveral doc appts they tell me they believe it is turning into sle. I also have alot of problems with hypoglycemia. My last doc appt they wanted to change my med (plaquenil) but I told them that I would like to give it a good try before I changed.
Posted 5/10/2007 12:22 AM (GMT 0)

Hi! Well several years ago I started having bouts of pancreatitis for no reason I am a non-drinker etc.

Then my sugar would go very low sometimes high. Then in last few months constant gut pain bouts of either constipation or the other way. C-peptide test showed pancreas wasn't making insulin despite low sugar readings so just had an mrcp and mri that showed chronic pancreatitis and my rhuemy said it was auto-immune from the sle. i also have benign cysts on liver.

Also to all that have given me encouragement about the MTX I guess tonight is the night I will start. Im nervous but hope it works. Thanks for all your support and kindness.

Just Sunday night I ended up having blister/ bumps in roof of my mouth so I best get meds started lol

Thanks again and I hope it was helpful in regards to pancreas.

Huggers!

cathy

Posted 5/10/2007 12:24 AM (GMT 0)
Just wondering if besides the folic acid I must take with it would it be ok to take B-12 under my tongue as well??
Thanks!
Hugs!
Cathy
Posted 5/10/2007 12:49 AM (GMT 0)

Hello Cathy,

I have been taking methotrexate for about 13 years now and I haven't had any problems with it.  The only time I did have a problem was when I tried to stop it.  I had a lot of pain and inflammation then but I can't take NSAID's so I was in a bit of a mess.

Don't forget your folic acid though.  This is most important.  I take 5mg per week, two days after my methotrexate.  Never take it on the same day as you take the methotrexate.  Some dr's recommend different amounts of FA.  I used to have 5mgs per day until about 3 years ago.

Don't know about B12 though, I have never taken it.

Thing is about side effects is that there are normally 3 categories - rare, very rare and very, very rare - for want of a better way of putting it.  Again as with all medications, what affects one patient might not affect another. Of course if you have any adverse effects at all, tell your doctor.  If you go ok with it, I wouldn't worry about what "might" happen.  I do so hope it works for you.

Take care.

goldenwings  yeah

Post Edited (goldenwings) : 5/10/2007 6:00:14 AM (GMT-6)

Posted 5/10/2007 10:21 AM (GMT 0)
Hi Cathy, I hope you have no problems with the Methotrexate. Take it with food and make sure you take a folic acid with it as well. Good luck and keep us posted on how it goes for you ok??

 

Take care,

Connie smurf

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