Sharing Methotrexate Experience

[BonusMom]

I started MTX  two weeks ago.  My Rheumy's has me titrating up slowly. Currently, I am taking 2 2.5 mg pills every Friday evening. No side effects. I also take 1 mg Folic acid on non-MTX days.

I learned in short order that Prednisone is not for me. I had two courses back to back, was an emotional basket case and ended up with systemic candida. It was awful.

[racheld724]

Sleepy in Seattle:

I went to the Rheumy today.  I will be splitting the dose into a.m. and p.m.  Yes, I took took the folic while I was off the methotrexate. 

The next day, I was back to normal...other than severe lack of appetite. But it's coming back.


Thanks!

[Carolina]

Dearest racheld,

 I haven't put in my two cents again until now because I don't take methotrexate or plaquenil, so I don't really "know" what that's like.

But I DO know what it's like to take something that is supposed to help, only to find that it isn't at all easy.

It takes true grit to deal with our conditions, Rachel.  Oh how we wish we could 'pop a pill' and have instantaneous relief.  Isn't that what happens on the commercials? (Yes they read really fast in a low voice through the 'bad stuff', but hey, that can't happen to me!).

I've had that a few time with an antibiotic, and maybe a headache medication.  Oh, and Salagen worked right away with no problems.

But I've been through the entire adjusting and so forth to many medications, and also had to give up completely on some due to reactions.

The fact that we share the entire process here is so useful to everyone who reads your post.  And look how many joined in, also new to methotrexate.

We KNOW that we are all different, and that each of us will react possibly in a different way to the same medications.

But there is great value in experiencing the journey with other people.  Eventually we will all have to deal with side effects and long processes of trial and error, given that we have chronic conditions.

I saw that Bonus Mom tried Prednisone and had terrible side effects.  Right now I'm taking Medrol, and it is my salvation.  Both are similar steroids......and we each react differently.

This is a journey, as I keep saying.  We simply don't know what it around the bend until we get there.  We didn't choose it.  People who think they 'chose their journey' are just very very lucky in the journey they got, so they don't know it wasn't a choice.

We know.  And we continue.

Thanks for sharing.

Hugs, Elaine

[racheld724]

Well said Carolina!


Bonusmom:

Not sure if the methotrexate will work for you, as we are all different.  I wanted to let you know that I started with 6-2.5mg tablets for 6 weeks (started to notice a very slight decrease in fatigue from the AI).  I then was moved to 8-2.5mg for maintenance.  From the start of the Methotrexate Therapy, the day after taking it I would feel slightly hungover (heavy head, slightly weak, nauseous).  Each day following, the side effects decreased in severity and each week they decreased overall.  Only this past week I experienced severe side effects.  But the change I feel in my body outweighs a day of even that severity of side effects.

I am pretty sure the severity may have been due to reintroducing the methotrexate at 20mg after 2-weeks of nothing. That, in combination with the fatigue already present due to the trip and traveling. 

I am learning that when in doubt, call your rheumy AND ask your pharmacist.  Thankfully, I have a great rheumy and easily accessible.  Now, I just have to remind myself to call him with concerns, and stop feeling like a burden. 

[angeldancer]

Fabulous information.  I believe I am reaching the next level of needing help to control flares.  I want to do more than just survive.  I want to live.

[Vegassjorgens]

Welcome. I have had to use alternatives because of reactions. Here are some tips that may help you manage your life with this health challenge.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[Vegassjorgens]

Thank you for sharing this valuable information. Two weeks Back I got diagnosed with sjorgens syndrome. I have terrible symptoms . My whole body feels burning sensations . I never heard about this disease before. I am really shocked and worried. All my life I have been a very healthy person. I am having hard time coping with disease. Reading the info. You provide, may be I will read the book how to cope with it. Thank you so much.

[Carolina]

Hi Vegassjorgens,

Welcome.  Relax.  It takes some getting used to.  But this is mostly manageable, and here you will find out what you need to know and how to manage things.

It is a shock, for sure.  And to start out with some serious aspects of the Super Symptoms of autoimmune/immune mediated conditions isn't making it easier for you.

There are several medications that can help with the burning sensations.  The sensations are the result of your immune system producing 'things' which irritate you.  This can happen in several parts of our bodies.  You will find help.

Let us know what you are already taking and trying.  Ask lots of questions.  Share your ups and downs.

This isn't fun, we don't choose it, but it is manageable and there is plenty of life and good stuff ahead!

Hugs, and welcome again, Elaine

[LucyD]

Glad you are doing better on the MTX, Rachel.

When my rheumy first suggested methotrexate, I refused it. Like others who have posted, I was going to tough it out and get better on my own. Ha! At the next visit I was quite a bit worse despite the Plaquenil, and I decided it was a quality of life issue. If the MTX would work for me, it would be wonderful to have less pain, swelling, and fatigue. I started it on November 18, 2013 (7.5 mg for two weeks, then up to 15 mg.) I take 1 gm of folic acid the days I don't take the MTX. So I am now about on week 10 or 11. I actually feel more energetic the day after I take it and for a few days. That is a real plus.

But, I have developed diarrhea and nausea and it is getting worse instead of better. It started about four weeks ago (when I was on about week 7), but I thought it was a flu or stomach bug because I also felt chilled when it began. It is getting old. Of course I keep hoping it will get better. I called my rheumy and she said if one is going to have side effects from the MTX, especially diarrhea and nausea, it usually happens soon after starting the MTX. And there was a nasty stomach bug going around just then, so I decided to keep taking the oral MTX and see how things went. So, I am wondering if I just have a stubborn bug (but do those really last four weeks???), if this is yeast overgrowth in my gut (as my integrative medicine doc thinks it might be) or if the MTX is just slowly making my gut worse. Then I wonder if this is just symptoms of Sjogren's affecting the lining of my stomach and intestines.

Would be grateful for advice. I am thinking it is time to call the rheumy back and ask about trying the injections.
But I hate to give up on the oral MTX just yet.

Food is unappealing but I get hungry and my stomach growls so I eat apple sauce and saltine crackers. Not the best diet. Don't want to even look at salads or vegetables and normally I love those.

For those of you who switched from oral MTX to the injections, what were your symptoms that caused you to switch to the injections. Are the supplies and medicine for the injections more expensive?

In reading the posts here, I didn't know we were supposed to suspend the MTX if we were sick. Is that standard? My rheumy didn't tell me about that.

Thanks all -
Good luck Rachel.
LucyD

[Petal]

I have read and reread this post and others with great interest

I am starting  Mtx tonight and I feel as if I am giving in to the disease, but I've have had enough.

I'm to take 7.5mg with 3 x folic acid in between for 6 weeks then to increase the dose after blood work

Im quietly confident things will go good

Fingers crossed, Leanne

[wifey1]

Racheld, I was just reading and catching up on your methotrexate experiences.  Just wanted to let you know that it's nice to see someone else around my age going through the same things.  I feel very young to be dealing with all of this... (I'm 32)

i've been on MTX (15mg) for about 6 months now.  I'm very sensitive to meds and dosage adjustments, so it's been a long, slow process.  My husband calls it my "methotrexate haze".  I'm typically not very good for about 18hrs after a dose.  The last few weeks, though, have been great.  I have to be careful not to overdo it or the side effects hit again, but as long as I take it easy I've been much better.  I'm also on prednisone right now though for a lung issue...wonder if that's somehow helping?

Honestly, though - at right around the 3 month mark on the MTX, I was able to push my kids on the swings without pain for the first time in a very long time.  Worth it for me!

[LucyD]

Petal I hope the MTX goes well for you. And Wifey1 I am glad you are doing better on the MTX.

Can anyone on MTX injections share info about the side effects that caused you to switch from oral to injections and are the supplies and MTX more expensive by injection?

This nausea and diarrhea is getting very frustrating.
Thanks.

[Sleepy In Seattle]

Just a nugget to add to the discussion - at my rheumy visit last week, she upped my folic acid intake from 1g.day to 3g.day - she thinks it might help with brain fog/energy level....I was attributing it to the Lupus/Sjs, but she said it might be from the Mtx - sort of a creeping, longer-term side effect (I have been on it almost 2 years).

I just started the higher dose of folic acid, so I can't say if it works or not yet....we'll see.

I guess we have to constantly adjust, and never give up!