Methotrexate - what can you tell me?

[mickeymedic]

Hello everyone!

I was just diagnosed with psoratic arthritis. My Rheumatologist has prescribed Methotrexate. We discussed the benefits and the possible side effects. However, when I went to pick up my prescription I found out that the pharmacy would not fill the prescription because of a potential interaction with Omeprazole. When I looked up info on Methotrexate, it also said that it should not be taken with Doxycycline - another one of my daily meds.

I am waiting for the doctor and the pharmacist to sort this all out. But the more I read about Methotrexate the more nervous I get about taking it. So, I'm hoping to find a few others who have taken it to tell me if they experienced any serious side effects and if the relief they got was worth it.

Thanks in advance for your help!

 

[disfan07]

I am on methotrexate for eczema. I have been on it since February 2009. I take 15mg once a week (17.5 mg when I am having a flare up). We use it to keep my immune system under control.
It is not a drug to consider lightly. I have to get my blood drawn every 6 weeks to check my liver function.

Per my dermatologist and my internist, methotrexate should not be taken with:
Sulfa antibiotics
Penicillin antibiotics
NSAIDS
Tylenol

In addition to my liver function, they also do a full CBC and CMP every 6 weeks. Basically, white count, RBC, kidney function, etc. So far, after almost 1 1/2 years, all good for me.

Also, I am on 1mg of Folic Acid daily to help counter the side effects adn keep my folate levels up.

I also cannot drink. I turned 21 in june and my doctor would not allow me to drink because of the side effects this drug can have on my liver.
I also have to go off of it for 6 months before I even think about getting pregnant. This drug is not compatible with pregnancy under any circumstance (that's a talk my doctors have had with me many many times).

When I started the med. it made me extremely nauseous for about 24 hours after I would take it. My doctor put me on zofran to help with that. I am currently back on the zofran because I am having stomach problems after taking it again.

And it IS an immunosuppresent which means that it can cause you to get sick more easily and/or more often, etc. My doctors are very very cautious with me when I get sick now because I have more problems fighting off infections now.

Taking all of that into account, this drug is a miracle drug for me. It is rarely used solely for eczema. My case is so severe that we have exhausted all other options. For me, my doctors were basically going in blind with proper dosage, how long until it works, etc. But I'm pretty sure that its more commonly used for what you would be using it for.

Up until my derm. started me on this, I was on and off of prednisone for 3 years. This drug is the only thing that keeps me off of prednisone.

What dosage did your doctor put you on? If you are having second thoughts about this medication, you need to go back and discuss it with your doctor again.
My dermatologist who prescribed it for me was at Johns Hopkins. She spent more than an hour with me discussing the side effects, interactions, etc. She wanted to make sure I knew EVERYTHING before agreeing to it.

With this medication, YOU need to be your advocate and YOU need to know what you can and cannot take with it. I have run into many doctors that dont know about the drug interactions and who dont really know anything about methotrexate to begin with, and there have been times when I have gone to urgent care where the doctor prescribes me something I cant take. I cross check everythign with my dermatologist if it is someone other than my normal doctors who prescribed something. But all of my doctors have become very good about checking any medication up against the methotrexate.

Not trying to scare you, but it is a drug that really needs some serious consideration before taking it IMHO. It's not something to just blindly agree to without getting all of the facts.

 

[Escape2Disney]

I'm also take MTX for AS, Psoratisis, and UC. Because of other medication allergies/sensitivities, this is my only option for right now. As a result of taking it, I get sick often, and experience nausea for a couple of days after I take my weekly dose.

That being said, my mobility goes downhill fast when I don't take the medication. It absolutely slows down the progression of my disease, which is very important since I'm showing signs of organ involvement.

I'm with the PP. If you have ANY doubts, you need to be your own advocate. Ask questions - LOTS of questions. There are many doctors who don't know the interactions and inadvertently prescribe things that cause big issues.

Folic Acid is a MUST, and pregnancy and drinking are an absolute NO if you're taking MTX.

I'm sorry you are going through this. Know that you are not alone! If you want to talk, feel free to PM me any time!

 

[rpbert1]

My son took ill when he was 17, and was diagnosed with severe inflamatory Arthritis.
He was extremely ill and mobility had issues with getting about.
They put him on Methyotrexate, but had to come of it because his liver fuction test was abnornal, he went on it again with another Consultant, and has been on it for about 6 years now, has managed to get back into work, and his mobility is very good now considering what he was like. He is off it now, as they are trying for another baby, and will go on it again when his DW is pregrant, but is suffering at the minute , so it really does work for him, and he has had no side effects when taking it

 

[bevgray]

This is very nasty stuff. It is an old chemo treatment so it can really mess up your system. If at all possible, try to see if the doctor can prescribe something else. From the potential side-effects (terrible chronic exhaustion, loss of hair, deep depression, etc.), it really can be a case of the cure is far worse than the disease.

 

[Galactic Hero]

I have been taking 20mg of MTX each week for over 5 years (I was diagnosed with RA when I was 35). Like a PP said, I take 5mg of folic acid on the other 6 days to counteract some of the side effects (such as mouth sores etc). Initially, I would have to put myself to bed after taking my dose, and I experienced quite a bit of residual fatigue and nausea. Now, I have some stomach upset on the day I take it and that is about it. I have not experienced any other side effects, and have my blood taken once per month to make sure crazy stuff isn't going on.

I couldn't function without it... and with two young sons, a full time job and a very busy life, that is not an option for me. Before taking MTX, I couldn't even hold a hairbrush or pull on my socks ... now I am a fully indepenent and functioning person. My Rheumatologist prescribes MTX first, because it has been used so effectively for so long, and both results and side effects are well known. It has been very successful for me, as it was for my Mom who took it from the late 1970's until her death in 2008. It dramatically improved her quality of life too.

 

[pumpkinfish]

I also have been taken methotrexate since I was diagnosed w/RA. I hate it It makes me nauseous and I feel rundown a little afterwards. It stopped being as helpful last year and my RA switched me to injections instead of the pills. It works much better that way for me. BUT, even though I hate it I wouldn't be able to live w/my RA without taking it.
Good luck to you . Hope you feel well again quickly!

 

[disneyfan55]

I just recently have heard of this terrible drug. It almost Killed my Aunt who had been taking it for about 30 years for RA. I couldn't believe it when I heard about what drove her white blood count to almost unmeasurable levels. She is completely off it and other nasty drugs and is doing fine. She recovered luckily after 3 weeks in the hospital and weaning off this and steroids. These drugs mask and destroy your body. PLEASE have vitamin D levels checked. So many diseases are related to low Vitamin D levels including all the auto immune diseases. The level s/b 50-70 not just over 32 as the test range of normal states. Read about this drug before taking it's a cancer drug as well. I can't believe they prescribe this for anything. The drug companies are really something else.

 

[disneyfan55]

I also have been taken methotrexate since I was diagnosed w/RA. I hate it It makes me nauseous and I feel rundown a little afterwards. It stopped being as helpful last year and my RA switched me to injections instead of the pills. It works much better that way for me. BUT, even though I hate it I wouldn't be able to live w/my RA without taking it.
Good luck to you . Hope you feel well again quickly!

please read my post below yours. My aunt after taking this for 30 or so years for RA felt the same way until it almost killed her by weakening her immune system. She is off it completely now and feeling better, yes, still pain but not much more than when taking this drug. Make sure your Vitamin D levels are high. I have read a lot on Vitamin D and autoimmune diseases and it seems many that have one of them are very low in Vitamin D.

 

[disfan07]

A lot of the possible side effects depend greatly on the dosage.

My dose is only 15mg once a week. The higher the dose, the more side effects possible. It really is a personal decision but you need to be fully informed about what could happen.

For me, I could not live without it. It greatly improved my quality of life and the possible risks are worth it to me. I spent 3 years of high school basically constantly drugged up on prednisone and benedryl and couldnt even function. In addition to that, I was hospitalized 4 times for infections related to my eczmea. Since starting the medication, no benedryl, no constant prednisone adn no hospitalizations for my eczema so I say it was worth it.

BUT, you also have to have a medical team that you can fully trust. My dermatologist, my pulmonologist and my internist are amazing. My dermatologist is on top of everything. If there is even the slightest possibility that anything could be going wrong she orders blood work immediately. All of my doctors are very cautious about eveyrthing. The slightest fever, ache, respiratory problem, etc, they jump on treating it right away so that they catch it before it gets worst. I trust them 150%. If I did not have a team of doctors that I trusted that much, I dont know if I would stay on it.

 

[disfan07]

I can't believe they prescribe this for anything. The drug companies are really something else.

Because not everyone reacts to it like your aunt did. Yes it can cause terrible side effects for some people but for many, it is a last resort option and it is one that works for them.

It is an immunosuppresent. So for those who have something caused by an overactive immune system, it can work very very well. We had tried 4 other systemic drugs before this. Believe me, we tried other things. None of them worked. For the first time, my immune system is finally reasonably under control.

And it's not the drug companies. The doctors are the ones who prescribe it. My doctors believe that as of now, the benefits outweigh the risks. If that ever changes, they will take me off of it. But for now, it is a miracle drug for me.

I was on prednisone for 3 years because of my eczema. I gained 60lbs on that. I was tired and cranky all the time. I caught every infection imaginable. My blood sugar was constantly out of whack because of it and my WBC was always high.

I had a choice. Methotrexate or Prednisone. Personally, Methotrexate is the better option.

 

[noahcarter]

I was on Methotrexate on and off for the past 8 years. I have lupus and it really helped control the disease. My dosage ranged from 12.5- 15 mg. Yes you can't drink and you should use back up birth control. Also, it can cause sun sensitivity, so make sure to wear good sunscreen. I also had monthly labs done and took folic acid and leucovorin. The leucovorin was to help with the stomach side effects. I too was very nervous at first. I started with a small dose and graduallly increased it. I had no severe side effects. Unfortunately the drug stopped working for me about 6 months ago and now I am on a stronger drug. Good Luck with whatever you decide.

 

[LilyWDW]

please read my post below yours. My aunt after taking this for 30 or so years for RA felt the same way until it almost killed her by weakening her immune system. She is off it completely now and feeling better, yes, still pain but not much more than when taking this drug. Make sure your Vitamin D levels are high. I have read a lot on Vitamin D and autoimmune diseases and it seems many that have one of them are very low in Vitamin D.

Just because your aunt had a bad reaction, doesn't mean no one else can benefit from the drug. That is why they test drugs. Different people will have different reactions. I'm sorry about your aunt, but one experience with the drug doesn't mean much. If they took all the drugs off the market people had bad reactions to then we wouldn't have any medications out there at all.

 

[mickeymedic]

Thank you everyone for your responses. I appreciate the varied experiences shared. I started taking Methotrexate today. My doctor will be closely monitoring my bloodwork. At this point I think the potential benefits outweight the risks. I can always change my mind at a later date - but I at least need to give this a few months to see if it is going to work.

 

[cm8]

Thank you everyone for your responses. I appreciate the varied experiences shared. I started taking Methotrexate today. My doctor will be closely monitoring my blood work. At this point I think the potential benefits outweigh the risks. I can always change my mind at a later date - but I at least need to give this a few months to see if it is going to work.

Here's to hoping that you have a great outcome with methotrexate

 

[slenderella]

There are more medications available on the market that have the same effect. Unfortunately, methotrxate is a wonderful drug for specific autoimmune diseases like lupus and RA. The side effects are awful, but with that being said, as some other posters have mentioned, the good outweigh the bad. So it is worth a try. If it doesn't work or the side effects are too bad to handle, talk to your doctor and try something different. I have lupus and am currently in remission. I was fortunate enough to not have been on this particular medication. I was, however, on a catagory X medication, which causes severe birth defects in the unborn fetus. Needless to say, my baby days came to an abrupt hault once I started it.
Good luck. I wish you the best!
Jonna