Author Topic: Sharing Methotrexate Experience  (Read 17902 times)

Nancy60

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Re: Sharing Methotrexate Experience
« Reply #15 on: October 15, 2013, 06:23:04 PM »
People on MTX should not have the Flu Mist but the Flu shot is recommended because of the immunosupression. The shot is a killed virus. Just wanted to clarify for those concerned about being exposed to flu who are immunosuppressed.

Nancy

racheld724

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Re: Sharing Methotrexate Experience
« Reply #16 on: October 19, 2013, 02:54:52 AM »
Thank you everyone for your input.

I made it through week 1.  I am taking the Methotrexate Saturday evenings.  I started to feel a better from the metho by Thursday, and best on Friday. 

...remaining hopeful.

sewandsew

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Re: Sharing Methotrexate Experience
« Reply #17 on: October 21, 2013, 10:59:00 AM »
I've been on MTX for a few years with few problems.  When I changed rheumy he added Leucovorin to minimize the side effects.

meow

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Re: Sharing Methotrexate Experience
« Reply #18 on: October 21, 2013, 02:42:20 PM »
I take folic acid every day. Is there some reason not to take it on MTX day?
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)

eye2dry

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Re: Sharing Methotrexate Experience
« Reply #19 on: October 21, 2013, 04:55:39 PM »
Yes, I was told to take my folic acid everyday/

Did your rheumy tell you why to withhold it on MTX day?

eye2dry
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

SjoAmy

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Re: Sharing Methotrexate Experience
« Reply #20 on: October 21, 2013, 06:06:40 PM »
I take folic acid every day. Is there some reason not to take it on MTX day?



Because folic acid and Mtx are made structurally alike, to the point where they compete for the same place.  As a result Folic Acid decreases Mtx effectiveness.  Yet Folic acid relieves Mtx symptoms.

MTX is labeled as an anti-metabolite and an anti-folate.   Competition with DHFR and MTHFR.

Di Hydro Folate Reductase.       Methyl  Tetra  Hydro  Folate  Reductase.   Enzymes in the body.

Sleepy In Seattle

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Re: Sharing Methotrexate Experience
« Reply #21 on: October 22, 2013, 08:47:26 AM »
Every doc is different, of course - but mine said it's okay to take them on the same day, just not together. I take all my vitamins in the morning, and my Mtx at night. Seems to work fine!
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

harrigan

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Re: Sharing Methotrexate Experience
« Reply #22 on: October 22, 2013, 08:53:40 AM »
Flu jabs are safe and advised for anyone with immunosupression - either as a result of illness or treatment for an illness.  I have had one every year since starting methotrexate, with no problems.
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

meow

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Re: Sharing Methotrexate Experience
« Reply #23 on: October 23, 2013, 02:14:49 PM »
Every doc is different, of course - but mine said it's okay to take them on the same day, just not together. I take all my vitamins in the morning, and my Mtx at night. Seems to work fine!

Me too.
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)

SjoAmy

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Re: Sharing Methotrexate Experience
« Reply #24 on: October 23, 2013, 03:31:38 PM »
My apologies, I thought this thread was about Methotrexate.

If you guys want to do a vaccine debate....do it on another thread....so those dealing with Methotrexate have somewhere to go.

Anyways, was supposed to go to PT today, and I had MTX last night....and I have had the most profound fatigue that just doesn't want to lose lift.

Every time I want to try to eat, I get the most phenomenal stomach cramps. Makes making something to eat frustrating.  Anybody else on Methotrexate with problems like these?

Nancy60

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Re: Sharing Methotrexate Experience
« Reply #25 on: October 23, 2013, 05:54:52 PM »
SjoAmy,

When I was on the pills, yes. Terrible stomach cramps, nausea and diarrhea. And fatigue for a few days afterwards. I've been on the shots for about 5 weeks and all the GI symptoms have cleared. I'm still somewhat fatigued but its not as bad, and by the 3rd day I actually have some energy, more than I've had in years!  You might want to consider the injections if you're having GI issues. The fatigue didn't really start getting better for me until a couple weeks ago and I started it in July. So it takes some time.

Nancy

racheld724

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Re: Sharing Methotrexate Experience
« Reply #26 on: October 24, 2013, 04:00:11 AM »
I am on week 2 of Methotrexate. 

I have had a sore throat for 3 days and can hardly swallow. Feeling weak and shaky at times.  I do not have a fever, actually my temp is below "my normal- 97.6," down to 96.8.

I know this must be connected to the methotrexate. I do not know if it is a side effect or an infection. 

I contacted my rheumatologist...waiting for a call back. 

Any experience?

I want to be able to say, "These things happen in the beginning of the drug therapy, and I will get the hang of it."  Is this true?

Sleepy In Seattle

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Re: Sharing Methotrexate Experience
« Reply #27 on: October 24, 2013, 08:46:09 AM »
It is often the case that side effects go away or are greatly reduced after a couple of months.

I had to split my dose - so I take half of it (7.5mg) on Monday night, and half (7.5mg) on Thursday night. MANY fewer side effects that way, at least for me. You could ask about that possibility.

It could also be that your body was already really depleted of folic acid, so it's hitting you harder. If you're taking supplements for a while, that might help eventually.

Also, are you taking the full dose? My doc had me start at a low dose, then gradually take more and more...I think we started with 10mg/week (total), and built up to 25mg/week. That was a couple of years ago...I have been doing really well so we are trying to reduce it again now (I am down to 15mg/week total and doing well so far).

In the end, some people find that they just CAN'T take the oral form, and they do injections. That is always a possibility.

But yes - two weeks is not long, and it might get a LOT better, if you can tough it out for a while.

Sorry you're having trouble.... :(
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

SjoAmy

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Re: Sharing Methotrexate Experience
« Reply #28 on: October 24, 2013, 03:19:21 PM »
This is odd & interesting.....

I like to have a Monster Energy drink every now and then.....and I noticed something very weird.....I have better days of Mtx endurance when I ingest one....needless to say I've been ingesting more Monster.....I wonder.....Tuesday and Wednesday downright suxed....and had no monster.  Today morning was bad....got much better after I had a monster.  Maybe its all those B vitamins in there.

Anyone else have this interesting phenomenon happen?


Nancy60

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Re: Sharing Methotrexate Experience
« Reply #29 on: October 24, 2013, 07:42:48 PM »
Never tried any of the energy drinks. Just coffee and diet coke, which I've just about given up!  I got where I hated to rely on them for my energy but had to have something to keep going. It was hard getting off of them but I am down to a cup of coffee in the morning only and drink water or herbal tea now.

Nancy