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TOPIC: Methotrexate Journey

Methotrexate Journey 8 years 2 months ago #14960

  • milly
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Well I started the new meds and was really worried about what the side effects where going to be, so far very little.

Sandi, if you go as good as have done you will be fine. I took the first dose 10mg about 8 or 9 hours ago and I feel pretty good. Just maybe like a really mild dose of the flu, I have a few muscle aches, a no paracetamol headache and just a little bit of upset stomach (not even enough to stop eating).

I did take folic acid for 4 days before I started and drank heaps of water, so Sandi let me know how you go.
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Re: Methotrexate Journey 8 years 2 months ago #14965

  • Sandi
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Hey - you cheated! You were supposed to wait until tomorrow!

I'm SO glad to hear that! That's great. I read a lot on message boards last night and it seems that some people do very well and others have a horrible time. We'll see where I fit in....I'm going to take it in about an hour. I only started the folic acid yesterday.

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Re: Methotrexate Journey 8 years 2 months ago #14966

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Hey it is tomorrow where I am LOL, it's now four hours since I have been up and apart from a bit of a tummy rumble and a lttle light head (probably wouldn't even notice only I am being a bit paranoid) all is good, hope you find the same thing. After some of the stuff you have taken you breeze through this!
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Re: Methotrexate Journey 8 years 2 months ago #14976

  • Sandi
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I did it...so far, no big deal. I did feel a lot sleepier and was out fast. I woke up early and feel groggy, but that's normal for me.

I always get weird side effects and am a little fearful of that, but so far, so good.

I forgot you were ahead of me time-wise. I thought I'd be taking it before you...too funny!

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Re: Methotrexate Journey 8 years 2 months ago #14993

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Happy things went ok for you and I seem to be the same with side effects if it's there I will get it.
As the day went on I did hit the wall a couple of times a bit of nausea and tired but had a quick nanny nap in the afternoon (about half an hour)felt good again after this and again at about 10pm really unusual for me as I don't sleep much went to bed at 10 and slept till about 6.30am (best sleep I have had for a long time).
Anyway I hope you continue to go ok and all follow up tests are ok. Have a fantastic Mothers Day.
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Re: Methotrexate Journey 8 years 2 months ago #15057

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Milly:

Have you had any side effects or improvements?

I have felt better the past two days, but doubt it could be working this fast. I also took magnesium the past two days which always seems to help, but I have always chalked that up to coincidence. Maybe not!

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Re: Methotrexate Journey 8 years 2 months ago #15058

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Hey Sandi, side effects have been pretty good a little nausea for the first couple of days it was really nothing though.

I was going to post today that I felt better but I thought you would think I was a bit loopy to say that after one tablet.
I feel better now than I have done for about five months, I posted a while ago I was having trouble sleeping and the last few nights I have slept for about 7 or 8 hours(haven't done that since the pre prednisone days about 16 months ago, and I have been off pred for 6 months now) I was only sleeping for about 4 hours up until last week.

So if things continue this way I will be one happy camper.I have my fingers crossed that all the blood test come back ok in a couple of weeks.

Quick question for you though if platelets were going to drop how long would it take would one tablet make this happen or would it take time for this to happen?
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Re: Methotrexate Journey 8 years 2 months ago #15074

  • Sandi
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Milly:

I would guess that a platelet drop could occur after a few weeks or months. Since MTX affects the bone marrow, the suppression wouldn't begin right away. We are on a pretty low dose; I've seen others on 20 and even a few on 50. However, your counts are not stable like a person without ITP, so they could drop anyway taking MTX out of the equation. Don't worry though, it might not happen!

My main side effect has been feeling tired, but without so much pain I am more alert, if that makes any sense. I have been taking more Prednisone than normal since last week was so bad, so that could also be kicking in. Every day is different depending on weather, drugs, stress levels, etc, so who knows what is working and what isn't?

Two more days until we get to do it again!

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Re: Methotrexate Journey 8 years 2 months ago #15113

  • Melinda
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How are you 2 doing? I know 2 people who are on it - well one was on it for RA and then discovered her doctor was wrong and she did not have RA so she stopped it, she was injecting herself weekly. The other person does have RA and I think she too is doing the weekly injections.

Good luck!

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Re: Methotrexate Journey 8 years 2 months ago #15127

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Tonight will be the second dose. We'll see how it goes.

I don't inject, but may go that way if the side effects get bad.

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Re: Methotrexate Journey 8 years 2 months ago #15131

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Hey Melinda, thanks for asking. I have had second dose and I am feeling better then I have for a long time,pretty much pain free and sleeping really well.

I was really worried about the side effects from this but so far not to bad (it's a worry when the Dr tells you to wash your hands after touching a tablet)but apart from being a little lethargic, small headache and a bit of nausea at times all is good. Nothing really compared to how prednisone effected me.

I don't inject either, just one pill once a week. I have first blood tests next week so hopefully all will be ok. Not to concerned about the platelet count as it 180 at the moment, its the other effects that are concerning but I will worry about that if it happens.

Here in Oz it's pretty cold now, we had snow through the week and it's the first time that I wasn't crippled with pain. I am a glass half full person mostly so life is good compared to this time last year.
How have you been?
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Re: Methotrexate Journey 8 years 2 months ago #15147

  • Sandi
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Dose two, so far so good. I slept really late this morning (which I hate) and feel tired today, but no more than usual on a Saturday. Pain level has dropped a lot - amazing! I usually spend my time watching the clock for the next Vicodin dose, but rarely even thought about it this past week. I am lowering the Prednisone doses too, hopefully I can get down to 5 and stay there for a while.

I have noticed some hair falling out, but that could just be because I'm looking for it.

I've had luck with drugs before for a while (like Lyrica) and then the side effects hit and built up. I am a little afraid that this drug will be the same way....all goes along great and then wham! Could there really be a med that works with few side effects? I don't believe it.

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Re: Methotrexate Journey 8 years 2 months ago #15166

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Two weird things since I started MTX: I'm having trouble falling asleep...I've had a few nights where I feel like I'm getting bug bites...creepy, crawly skin feeling. Another thing, I've had weird hunger pangs. I woke up in the middle of the night last night and ate a can of green beans.

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Re: Methotrexate Journey 8 years 2 months ago #15192

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Green beans, well at least it is healthy, strange but healthy.

My biggest problem is waves of exhaustion, mostly I feel really good, no pain but the exhaustion is really bad at times I actually was watching tv last night having a bit of a flick through stations and went to sleep really briefly while changing stations. Most of the time I am ok but this just comes on me for about half an hour then goes.

I too hope this is the worst it is going to be because I am really enjoying not having any pain.

I did have a bit of a down day today, I sometimes really struggle with all this stuff. I think back and till last year I was so healthy, went to the Dr's every couple of years but I was never sick not even a cold or flu. Now I seem to live at the Doctors, over the last 18 months I have had ITP and three surgeries and seem to be always taking one medication or another, having tests for something or other. Sometimes I just feel like is all this ever going to end.

OK I have had my rant I am sure tomorrow will be better. I hope your creepy crawly skin thing goes and you can get that pred dose down, you never know maybe you might be able to cut it out altogether.
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Re: Methotrexate Journey 8 years 2 months ago #15199

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Sandi wrote: Could there really be a med that works with few side effects? I don't believe it.


I'm confused. :blink: MTX is a chemo drug (frequently used to treat childhood leukemias) and although the side effects may not be horrible, they are dangerous. It can and does change the DNA structure which leads to other forms of cancer. :ohmy: That seems a worse "side effect" then some of the other drugs. :huh: :sick:

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Re: Methotrexate Journey 8 years 2 months ago #15209

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Milly I'm glad to hear things are going well and you are feeling better - I hope this is the answer for you! It has helped my friend with RA. She said injection isn't bad at all - just need to get the red box to put the syringe/needle in afterwards.

It is spring here but you wouldn't know it - we actually had some snow last week, didn't last long thank heaven. It is still chilly though.

Hang in there - I'm keeping up with you and Sandi via this thread!

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Re: Methotrexate Journey 8 years 2 months ago #15210

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Sandi how is that hair? Stop looking for things, you will know if a side effect happens.

Lyrica is one my neurologist said he wouldn't put me on - but that was because of platelets I believe, since our ITP is of different causes maybe it wouldn't have bothered your count.

As I've mentioned, this has helped my friend with her RA - we are all different but I hope it will help you!

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Re: Methotrexate Journey 8 years 2 months ago #15219

  • Sandi
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Thanks, Patti, but I know what MTX is and what it can do long-term. My goals are much more short term than that, namely, to get through each day as it comes. When I said "no side effects", I meant side effects that would affect my daily ability to function. My DNA is already altered due to Lupus.

Melinda, ha, my fear is that I will blissfully go along and not realize that my hair suddenly thinned or has major breakage and is sticking out everywhere. I'm normally like that, you know, don't do body checks and suddenly I find an ugly mole on my back and wonder how long I've subjected people to looking at it.

Unfortunately, the weather changed to cold and rain today and I am back at square one. I feel achy and flu-like like I normally do. I'm hoping it is just a glitch. Working was torture, and then half-way through the day I got hit with nausea and dizziness. Came home from work at 5 and hit the couch.

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Re: Methotrexate Journey 8 years 2 months ago #15230

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Sandi I do think you would notice if your hair was falling out or sticking out everywhere - you look in the mirror :)

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Re: Methotrexate Journey 8 years 2 months ago #15231

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Thanks Melinda better day today, sometimes I think too much I just need to let go of what was and look forward to what is, I will be fine just need to give myself a good kick in the bum every now and again and be grateful for what I have.

Sandi, sorry to hear you not feeling so good I do have the nausea but so far no dizziness. I hope this is only a hiccup for you because of the weather, you sounded as though it was working.

Have a big rest, hopefully the weather will improve and you can get back to what was a couple of days ago. We will see how we go, when do you have your first tests ?
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Re: Methotrexate Journey 8 years 2 months ago #15262

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Boy Milly I know what you mean about sometimes thinking too much! I'm happy things are better today and I hope you can keep saying that!

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Re: Methotrexate Journey 8 years 2 months ago #15264

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Thanks Melinda I am usually a pretty positive person, trying really hard to stay that way.

Hey Sandi, are you ok?
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Re: Methotrexate Journey 8 years 2 months ago #15281

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Yes, bad day. I think I figured out what's going on. A few days before I started MTX I was a mess. I upped my Prednisone dose to 30 mg's and after a few days, I was feeling great. That coincided with MTX, so like you, I assumed that MTX was doing the trick. I quickly tapered down the Prednisone. Yesterday, it all hit me like a ton of bricks. Tapering that fast would be fine for the normal person, but for me, it takes that much just to feel nearly normal. Add the weather change to that which always makes me feel sick, and it was disaster.

MTX is really messing with my stomach acid. I have reflux anyway, and add to that Prednisone, aspirin and Naproxen. This is another disaster. I'm going to have to find a way to take an antacid without it interfering with my other meds. I don't know how to fit that in.

I'm glad you're still doing okay!

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Re: Methotrexate Journey 8 years 2 months ago #15293

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Wow you would rattle when you walk from all those pills!

I am still going ok the nausea, headache and tiredness are really hanging on but even with all this it sure beats being in pain. I am hoping that this is as bad as it gets and that will be ok.

Hope things improve for you, maybe it's just a combination of all the things you mentioned.
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Re: Methotrexate Journey 8 years 2 months ago #15325

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I went back up on Prednisone and today was a bit better, so that was probably it.

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Re: Methotrexate Journey 8 years 2 months ago #15345

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I just want you both to know that I have been keeping up on this. You are both in my prayers and thoughts. I really hope this works for you.
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Re: Methotrexate Journey 8 years 1 month ago #15360

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Thanks Timons appreciate the interest. When I first read the side effects of this drug I thought it was going to be a disaster but so far so good. Have first blood test next week so hopefully that will be good my platelets are at 180 last count so I have room for a little movement.

It was good to chat to you on Tuesday night, Good luck with work tomorrow, it's Friday here so I think I have worked the day out right.
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Re: Methotrexate Journey 8 years 1 month ago #15363

  • Sandi
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Thanks! This is my last hope and so far, no good. It can take 6 to 12 weeks so I know I have to give it time.

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Re: Methotrexate Journey 8 years 1 month ago #15422

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Yikes - side effects are getting worse.

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Re: Methotrexate Journey 8 years 1 month ago #15423

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Hi Milly and Sandi

I have just read through all the posts with open-eyes. Great piece of work you both doing writing it up on here and I hope both continue because someone will benefit from the insights you share.

I don't know what Methotrexate is but guessing its some form of Chemo-drug based on what been said here. Though I do understand the issue of weighing up side effects against each other ;)

Well done for sharing an interesting journey and I will remember you both in my prayers and everyone reading this hoping for some inspiration/breakthrough. My experience of ITP is a breeze but with thanks to this website am aware that it not be the same for everyone.

Questions for Sandi though just out of interest really. How do you know to increase/decrease the prednisone? How do you know the side effects are off the new treatment and not something LUPUS is giving you? I wish you both and everyone reading the very best....
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