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Any others starting Methotrexate? I'm SCARED!

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Posted 4/22/2008 6:30 PM (GMT 0)

Hi Pars,

Just wanted to welcome you to the forum,  I'm so sorry you are having such a tough time of things!  You've come to the right place for help and support though, the people here are the best!   I don't take mtx at the present, however I was on it for about 8 months.  I didn't have as bad a time as some did, but reading what the others have said, have to agree with them 100%. It does get easier with each dose, even though it may not feel like it at the time!  However, it sure couldn't hurt to give your doc a call and let them know how badly you feel.  Perhaps, like sj said, they could cut back your dose so that the side effects wouldn't be so unbearable.  

Take care,  Jody

Posted 4/29/2008 8:42 PM (GMT 0)
Well, midway into week three and I am back up to three pills. Since I started taking the iron I am not quite so sleepy. I know that theoretically it is too soon for the mtx to be helping but for four months I could not get rid of the inflamation in my left shoulder and neck even by taking more prednisone then the doctor wanted me on (I had permission but she said if I needed that much pred I reallly needed mtx). Anyway three weeks into this the neck and shoulder feel normal-no pain or stiffness at all.
However I am now looking with nostalgia on those days of every 8 weeks appointments. Now I see my Rhuemy every 4 weeks with a trip to lab corp for blood work midway through. So, the vampire is well fed.
Anyway I appreciate the support everyone gave me in the weeks leading up to that very scary first dose.
Sj
Posted 4/30/2008 10:30 AM (GMT 0)
Good Morning Fellow MTX'ers!

We started this thread on February 12th and have kept the information flowing. I'm most grateful to read about your experience, advice and progress.

Since February I've kept the vampires at Quest Diagnostics happy once a month too. I've moved from .5 to .7 injectable and am finally getting some freedom from pain. Guess I'm one of those that needs the full 8-10 weeks for full effect.

Luckily I've dodged most of the nausea, tiredness, hair-loss side effects. I inject on Friday afternoons and can sleep off most of the side effects, I guess.

I was discouraged up front thinking I'd not get relief but I was wrong. This seems to be a good course of treatment for my UC related joint pain. Rheumy doesn't want to see me for 4 more months (though I'm still stuck with bloodwork once a month) and my GI has tucked me out to once every 3 months.

This feels like freedom in the great scheme of things! It's so much better than I felt over the holidays. I actually went river rafting on the Colorado last week.

MTX gets high marks from me.

Hang in there. The negative side effects will subside and if you are like me it may just take that full 2-3 months to do its thing.

THANK YOU boardies for keeping the lines of communication open! You are appreciated.
Posted 4/30/2008 11:37 AM (GMT 0)
I am new, and checking this format out to see how others cope with their pains and conditions. I have dealt with my condition for 40 years, and feel pretty in touch with my body and its issues. I've grown skeptical of what the doctors suggest, realizing they mean well, but also realizing they are usually familiar with prescribing medications as their solution and approach. We all understand the 'side effect' problems, and there is the problem. After 40 years you tend to see the results of prolonged usage. I have looked for alternatives; more natural the better. The last three years I've managed quite well without NSAIDS; buffering occasional flareups with some Tylenol. I seem to understand the rules here, so I can't mention what I use, because I am so impressed with this product I decided to become a distributor, and share the information to those that may need it. I understand the reasoning behind such rules, but am curious that you give free reign to the drug manufactures, and in the process they are making millions. I read the lists of drugs that many of you take and I am blown away. Do they all work? What are they all doing to your bodies? skull I wish you all good luck and hope it works out for you. I'll check back for any input.
Posted 4/30/2008 11:54 AM (GMT 0)
Hi Journeyman,

I'm a vintage model too who has tried herbals, otc's, homeopathic, studied neglect, avoidance, diet, you name it.

My old body finally said STOP THE MADNESS. Seek western medicine and toe the line.

I'm so there now and this old body RAFTED THE COLORADO last week.

Call me a convert.

Call me blessed to have found something that lets me love my family, do my job and enjoy my life.

BEST of luck on your journey.

Rot Gut
Posted 5/3/2008 1:35 AM (GMT 0)
Dose 4 tonight. For some reason it was difficult for me to convince myself to swallow this one. Maybe because I am back up to my original dose of 4 pills again and that first dose of four pills did not end up going so well. Maybe its because I have to work tommorrow and I still get pretty sleepy on the day after a dose. Anyway I took the stuff. This last week hasn't been so bad so maybe even at 4 pills I will be okay. I should be getting used to the stuff and not reacting so weirdly by now.
Anyway I hope that all the rest of you on mtx are doing well and seeing great results.
Sj
Posted 5/9/2008 12:37 AM (GMT 0)
Okay, some of you have been following my whining on the moaning thread. The mtx has made me very anemic and tired. My rhuemy just told me to increase my iron to two pills and to stop taking my NSAID.
From what I have read the anemia is more likely to be caused by lack of folic acid rather than simple iron deficiency so what I would like to know is how much folic acid are you guys taking. (I would really like to know what your doc recommends you take as well as what you actually take). I know some of you have recommeded the L (I cant spell) rescue but since I don't have a script for it how much folic acid is too much. I currently take 1mg per day plus (and my doc does not know this yet) 1 mg extra the day of.
Thank you.
Sj
Posted 5/9/2008 3:48 PM (GMT 0)
Hi Sj,

Yep some of us have recommended the Leucovorin and all you have to do is call your doctor and get a script for it..the MTX can get toxic in your system and that is what makes you so tired, the Leucovorin counteracts it and was made especially for the MTX and to work hand in hand with it. If you are taking the max dose of folic acid that you are supposed to, and still feeling puney, maybe you need the "L".. :) For me the folic acid just wasn't enough and that is what is sounds like for you. You can only take so much folic acid, I hope you feel better soon.
Posted 5/13/2008 12:33 AM (GMT 0)
Momto3,
I know your right but I feel like sucha a nag when I call m doctor in between appointments-I already see so much of her. I see her again in two weeks and will ask about the L-rescue then.
Until then I looked up folic acid/methotrexate on google and found out I could take quite a bit more of it than I have been so I am now taking three milligrams, the iron and B-12 and I feel much better-not so logey. I took 5 pills this week-only one more planned dose increase. Then maybe a few weeks of stable meds before another pred taper.
I hope to get off of the pred this time I am not having any inflamation and haven't taken extra doses since starting the mtx.
Hope the rest of you on mtx are doing as well.
Sj
Posted 5/13/2008 1:57 PM (GMT 0)
Sj,

I know you hate to feel naggish :-) and if you find taking more of the folic helps then thats great! I only needed the L for awhile and I haven't taken in a few weeks and don't seem to need it.  I find if I forget to take the folic at all then I end up with the mouth sores in a few days even though my multi vitamin says it has the same dose of folic. So I seem to take more of it too.

The MTX works but Saturday after I took my dose I felt weird and fluish with body aches but by Sunday I was fine..sometimes it just reacts that way.

Glad you are feeling so much better :-)

Posted 5/29/2008 9:13 PM (GMT 0)
I am new to reading forums and joining in. I have recently been diagnosed with RA. It is effecting my hands and wrists. My RA
Doctor wants me to start on MTX. My blood titers are high and I guess I will have it bad eventually. My mom was a severe RA person. How does MTX alter your life style?
Posted 5/29/2008 10:16 PM (GMT 0)
Hi Bonnie Sue,

Welcome to Healing Well and especially this link. The great folks who have kept it going will have lots of suggestions for you. I've now been taking MTX (injectable) for 16 weeks and have begun to feel better. I'm moving from .7 to .8 tomorrow hoping to hit that magic point where I feel really good every day.

I'm NEW at this too having only been diagnosed in January. Colitic Arthropathy and Fibromyalgia

Spend a LOT of time reading about your condition. Hit up your public library and tuck the book into your purse to read at odd moments. The more you know the better equipped you are to have REALLY MEANINGFUL dialogs with your rheumy. This skill eluded me for quite a while.

My rheumy's first language isn't English so I finally wrote it all down. I faxed the document that specifically outlined what my symptoms were, where I'm hurting, when it's the worst, and how long it takes me to loosen up in the morning.

On my next visit he was actually excited to see me because he had a better perspective of how to approach my problem. Keep your journal, look for patterns, take your medication, and EXERCISE (eeewwww!) regularly.

You're smart! Early aggessive treatment is the key! You go girl!

Rot Gut
Posted 5/29/2008 11:25 PM (GMT 0)
Bonnie Sue,
I am on week seven of oral mtx. I was terrified of taking it because I am very sensitive to most drugs. To top it off I had the reaction that I most did not want to have (by blood levels went wacky because of NSAID/mtx reaction). That reaction is rare and most people on mtx can take NSAIDS if followed closely by a doctor.
I started taking 3 mgs of folic acid, stopped the NSAIDS and at week seven I feel great. The nagging inflamation in my shoulder which is what finally convinced me to take the mtx is gone. I no longer get tired on the day after my dose or have any other side effects. I am tapering off the prednisone and so far (only day two of the taper) the inflamation has not returned. (I tried this the week before starting mtx and was miserable by day 2.

When you first start the mtx you might want to choose a day of the week when it won't matter if you don't feel your best the next day. Take the folic acid. Drink lots of water. And report anything unusual to your doctor. Other than that I would say that for most people the first dose is the worst (usually you will start on 4 pills and work up to 8). After the first dose I had to go down to 2 because of the wacky reaction but then added a pill a week and am now at six where I will stay for a while.

I think you will do fine on mtx. It can protect you from long term joint damage.
I hope you feel better soon.
Sj

(for everyone else following this post-what a difference seven weeks makes-I was a complete wimp about this)
Posted 6/3/2008 12:34 AM (GMT 0)
I'm thrilled to finally read what real people are experiencing with MTX. I take 20 mg (8 tablets) weekly, plus 2.5mg of prednisone daily and folic acid. I haven't had any nausea, hair loss, etc. and my RA symptoms seem under control. BUT I've had five colds in the past 9 months. I work in a grade school library, so am obviously exposed to a lot of germs. I wash my hands til they're raw and take a multi-vitamin daily. Anybody else out there have similar problems? Anything I can take or do (vitamins, supplements, etc.) to cut down on these constant colds?
Posted 6/3/2008 12:59 AM (GMT 0)
Hi 3M,

How long have you worked in the library? If it's a short period of time you are probably catching everything from the Kindergarten Plague (chicken pox) to the 6th Grade Cooties (mono).

As of tomorrow I'm a 30 year veteran of our county's public school system. GO ROT GUT! I get to go to a celebration and shake hands with our superintendant tomorrow night!

I work as a computer network administrator and touch every cruddy, sticky keyboard in the entire school of 1150 kids and 85 teachers. Let's talk Germs!

I haven't caught anything in the last 12 years except a one time incident of head lice. Yeah, gross! I boiled my HOUSE!

You are REALLY taking your folic acid, right? You're getting enough sleep? Go ahead and wash those hands and then follow up with the Neutrogena hand cream that comes in a tube. It will tame your sore hands.

I'm not a believer anymore in hand sanitizers. Now I think we are supposed to be exposed to germs and overcome them.

Are you tapering the pred? Once that's out of your system you might just start feeling downright PERKY.

AND school's almost out for the summer! YEAH SUMMER!

Welcome to the board!

Rot Gut
Posted 6/3/2008 1:47 AM (GMT 0)
3M,
Welcome to the forum. Make sure you really are taking enough folic acid. I also find that vitamin C and Zinc help prevent and shorten colds-be careful with the zinc taking too much can cause side effects.
I am on week 8 and other than the alergy symptoms I have not had any colds. The other side effects I had pretty much disappeared when I took more folic acid. Now that I am on a steady dose I am doing quite well.
Sj
Posted 6/16/2008 1:49 PM (GMT 0)
Hi. I'm new here, but I thought I'd give the forum a try. I was diagnosed with RA last November and have been taken methetrexate (20 mg weekly) and 10 mg of prednisone daily. I am feeling quite good, although I'm having trouble weaning myself from the prednisone.

My biggest annoyance is a funny sensation in my throat for the past 7 weeks (the sensation began a month after the MTX dosage increased). It feels like I have a the skin of a grape stuck on one side of my throat. Sometimes the sensation moves from one side of my throat to another. I feel fine in the morning but as the day goes on the sensation gets more and more annoying. While I'm eating, my throat feels great. But it immediately comes back once I finish eating. Eating popsicles is about the only thing that seems to soothe my throat. I've been to an ENT who found nothing, and I've had an endoscopy done which showed gastritis--but I've had gastric reflux for a couple of years and that has been under control with Protonix. I keep wondering if I have thrush way back in my throat but no doctor has commented on seeing any sort of white patches.

Any comments? Anyone having a similar problem? Thanks in advance!
Posted 6/19/2008 10:29 AM (GMT 0)
Hello MTX Boardies,

I like to pop in and out every few weeks to give an update and encourage those who, like me, are freaked out at taking Methotrexate.

Obviously I've gotten over the initial trepidation and certainly MTX has worked out to be the correct drug for me though it took 4 months to really do its work.

Since January I've gone from hobbling around on really painful knees, hips, and feet to living my life to the fullest (for a gal my age)!

Rheumy addressed the sleep issues at our last get together. When I don't sleep I don't feel my best. He said I will not become a drug fiend if I take a sleeping tablet.

SO! I'm sleeping and wake feeling rested and wonderful again. I wake up feeling really, REALLY good!

I'm sincerely back to being the old Kathy instead of being a Gimpy Rot Gut.

Guess who bought a 250cc motorcycle 3 weeks ago and is heading out to take the required riders skills test on Wednesday? Yep, it's the same old gal who wandered in here in February thinking about retiring from my job.

MTX and truly careful care from my Rheumatologist / Gastro Doctor has set me back on track. MTX is also a great addition to my arsenal for Ulcerative Colitis. I had my semi annual Colonoscopy last Tuesday and got a B+ with very little active disease. It had been all up the left side. I can trim back some of those medications!

And yes, my hair is all still there and looks great.

I wonder what else I can do with my Golden Years? I'll keep you posted!

Kathy (formerly Rot Gut)
Posted 6/19/2008 5:12 PM (GMT 0)
Hi kathy,

That is great that MTX works so well for you! I wish I could depend on just my MTX but mine stopped working and I was forced to add the Enbrel.  I'm not sure if the MTX makes the hair do funky things maybe its the plaquenil I take, anyway glad to hear you don't have to resort to the cocktail of meds to keep your symptoms under control, I hope it stays that way!

Posted 6/19/2008 9:37 PM (GMT 0)
Well, I think I am at week 9 or 10 now. I am completely off of Prednisone and doing great on Plaq, MTX and Folic Acid-I take 6 pills of mtx with no plans for an increase and 3mgs a day of folic acid. I have had no joint inflamation and now have no side effects from the mtx.
Kathy, I would not have dared the bike even before RA but good for you and have fun.
Sj
Posted 6/20/2008 3:10 AM (GMT 0)
Awesome news Kathy! Good for you! my hair, luckily, has stopped falling out! I am on 8 pills a week.. I take 4 in the morning and 4 at night.. it helps me to not feel like poo the next day! :) A motorcycle huh? Wow! You be careful out there, and let us know how your first ride goes! :)
Posted 6/20/2008 8:32 PM (GMT 0)
I have been taking methotrexate since January 2008 I have psoratic Arthritis I go once a month for bloodwork due to the fact that the meds can mess up your liver I have been on 3 pills 4 pills 5 pills and now 6 pills a week once when my bloodwork was checked they said my liver was swollen and they reduced but now its at 6 pills per week I have been feeling so so I still have lots of swelling in my fingers and mainly in my ankles and feet where it hurts soooo bad to walk and I also get

remicade infusions every 6 weeks  and I have been feeling really nauseated, I always feel like my skin is really hot so I get sweaty and I have been feeling dizzy and I have the worst headaches every day  and my heart beats soo fast sometimes  i'm kind of worried because my last infusion they told me my blood pressure was a bit elevated maybe that's why I feel so sick besides the pain and inflammation. I hope that the Methotrexate works for you and that you feel better soon or atleast more like yourself. If any one can relate to me and have anu suggestions for me on what I can do let me know. Thanks Everyone. PR Glo

Posted 6/24/2008 12:04 AM (GMT 0)
I've just started on the methotrexate last week was my first injection. I didn't do so well with it so my doctor wants me to call him
after this weeks. I'm going to do it Thursday night so hopefully the side effects won't hit me until Friday night and then I can
sleep through most and probably still feel yucky Saturday. He said they should get better each injection. I sure hope so!!!
I'm taking it for my CD and Arthritis issues. I'm also on Pred. but tapering down weekly. I'm also taking the Folic Acid.

Are you guys just getting the side effects a day or two after injection?? Or do they come and go throughout the week??
I just really don't know what to expect from this stuff. But I do know the first one hit me pretty hard last week.
Posted 6/24/2008 12:28 AM (GMT 0)
LBJ- You did not mention what dose you are on but some of the side effects may be "worse" if you are on a higher dose-I am assuming you are doing the injections rather than pills because of the chrons. My first two weeks were hell. Then I started taking more folic acid 3 mgs per day and haven't had any side effects since. You may need to take your folic acid sublingually (under the tongue) if you have malabsorption issues from the Chron's. For me the first dose was the worst-I called my doctor told her how bad I felt and asked if I had to keep taking it. She said yes and I still made her agree to cutting the dose and then increased the folic acid without telling her about it. Anyway, I made it back up to the target dose and told her about the extra FA and she thought that was a good idea and now I don't have any effects at all from it.
So, hang in there. From everything I have heard and from my experience the first dose is the worst then they get easier. Any day that you are tired or feeling off from the injection try some extra folic acid and see if it helps. Give it time because it does take some time (6-8 weeks) to really see the difference but it does work for a lot of people-I was able to get off pred for the first time in 8 months after 8 weeks on mtx.
Sj
Posted 6/24/2008 1:34 AM (GMT 0)
sjkl-
Yes I'm doing the injection. My GI has me taking 25mg a week. So like this week I'll do my injection Thursday night and then he has me not taking the folic acid until next Monday. So I take it 4 days after injections. And that he has me taking 5 tablets which each one is 1mg. Does that sound right?? Should I be taking the folic acid the day of injection?? When I talked to him Friday he said if this weeks is bad too then
he will have me decrease it but to take the full dose again this week. I was super tired and dizzy. I felt like I was hit by a mack truck. LOL
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