Sharing Methotrexate Experience

[SjoAmy]

I am on 5 mg of MTX per week......5 mg in one dose tore up my stomach for 6 hours straight.  So my doc divided the dose.  I take 2.5 on Mon & Tues.  Which is better than before, but Tues & Wed I get tears in my stomach for pains.  Unbearable.  Lasts 2 hours - 3 hours, even with Folic Acid intervention of 4.6 mgs of Folic acid a day.  That's supplement only.......probably higher with my nutrient count.

[racheld724]

Sleepy in Seattle,

Thanks.

My horrid sore throat (felt like strep) went away mysteriously.  I guess it was a side effect.  It lasted for 3 days, and poof...gone.  This week has been different from last, it is a weird feeling. This week has gotten to the point where it takes a lot to lift my arms to wash my hair; however my nausea has decreased.  I have no idea what to expect.

I am taking a starting dose of 15mg and 1 mg Folic.  GI issues are not too bad.

Rachel

[Carolina]

Hi Rachel,

I'm late to this discussion, but I understand how hard this is to accept, adding a new medication like Methotrexate.

If you can tolerate it, it is certainly worth trying.  Many people I know rely on it for a quality of life and relief from suffering and progression of their illnesses.

I do understand the resistance.  I resisted the treatment I'm currently in progress with.  Unfortunately the first two months of treatment produced such difficult side effects that we've had to change the product.

It is interesting to me that while it is the SAME treatment, different manufacturers prepare the treatment slightly differently, and evidently that can make the difference between difficult and increasing side effects and no or tolerable side effects.

I can still feel the resistance to the entire idea of the treatment, somewhere in my mind.  In my case, no because of the nature of the treatment, but because of the horrendous cost of the treatment.

I don't have to pay the cost.  Only about $4,000 of it per year.  I couldn't do it if I had to pay the actual cost since is it $140,000 a year.  And for some reason that number just upsets me.   How can I be taking a treatment (it's a blood product, not a medicine, per se) that is so expensive?

I also am in the process of having my neurologist run tests to determine whether or not neck surgery will help my neurological problems.  I am terrified of that surgery, and very resistant to it.

And yet, we must all change and come to terms with our quality of life issues.

Hugs,  Elaine

[lelandlms]

After posting two weeks ago about a sudden painful onset of migrating joint pain in both arms, shoulders and hands for 5 days....I went to Rheumy who said it's inflammatory RA. I had had a positive RA factor for many years but until this year did not have any real joint pain. He offered me Methotrexate injections and a chance to think about it but right then and there I decided I needed to start sooner rather than later. Being a nurse I had no qualms about doing the injections esp later knowing that most of the drug is utilized by the body when injected. He also advised Folic acid with B12 which I ordered and started yesterday. I gave myself the second injection yesterday. So far I can't really tell of any side effects, still fatigued to some degree but I have had that since early summer. In addition I still have some Iritis in both eyes and am on Pred Forte four drops a day. Both Rheumy and Ophthamologist feel that the MTX will help clear that up also as I have had it since May. I have to admit I was angry at these darn autoimmune disease for a few days, and now adding another medication, but I am all about quality of life and not suffering when there are meds available which can help. Being in medicine I know side effects can clear after being on meds for awhile and I need to be patient and give it time to work. I am hopeful it will help my joint pain which is mainly in my left shoulder and finger and the fatigue. I appreciated reading all the posts about peoples experiences with MTX today.

[racheld724]

Carolina,
Thank you for your straight forward, yet empathetic response. Having support from people who understand is different from support from someone who wants to understand. 

Oh the journey...


Forum,
4th week of the Methotrexate.  My hair is starting to fall out more than usual (clumps in the shower & I can touch my scalp easier).  Thank God I have thick hair to start with!  It's Thursday of week 4, I have definitely been sleeping a lot better, which I never realized that I had issues until actually getting some real rest.  Days are still unpredictable. I take the metho Saturday evening.  Sundays I feel a little sick, Monday's seem to be when it hits me the hardest.  I am hesitant to mention overall improvement being that this is a day-to-day thing...but yesterday I felt well enough to cut the grass!

[quietdynamics]

racheld724
...You mowed the grass!!! How wonderful. Doesn't it feel great to actually be able to DO something. At least go to bed tired from an activity accomplished...yeah.

I am just so happy for you. PS...it was a rid on mower...wasn't it?

I am not taking Methotrexate...but, my hair has been ...I am going to use the word 'shedding' because that is gentler for me.
I find if after a shower I put it up wet in a sloppy bun..with mousse (no hair blower) it will look fuller...but, I cringe when it is time to comb from shampooing...geesh. And I wear it up so I do not shed on people and places.

Be careful not to overdo, which of course is what I do when I have a really good day.
Easy to give advice...I do not have to take my own...of course neither do you...lol

[racheld724]

quietdynamics,

That's exactly what I was telling myself yesterday, "Don't overdue it or you will pay."  And then the voice said, "Even if you do nothing you might pay, so move along."  Oh, how our minds work!

[racheld724]

I went to my 6 week initial follow-up after starting 15mg methotrexate.  My doctor and I agreed that there have been some positive changes.  My side effects of the metho have decreased (nausea and fatigue, I'm still losing hair).  However, I have been recovering better from activities that once would have made me fatigue for days.

Now, I am starting a new/maintenance dose, 20mg.  Anyone familiar with experiencing another round of side effects from the metho? 

Side note:
My rheumatologist said that I should get the flu vaccine/pneumonia (injection form).  I think it depends on your current health state and what you and your doctor decide.

[Sleepy In Seattle]

When my dose moved up, I did get more hair loss but not other problems. For me, once my body got used to it and got over the side effects, it was not a big deal to increase the dose - though we did split it over two days a week instead of one. At one point I was on 25mg/week (down to 15 now).

Taking daily B-complex supplement and also a biotin supplement helped a bit with the hair loss, but it's still kind of lousy. And the texture of my hair has totally changed.  Oh well - it's worth it. 

I do get a flu shot every year - be sure to get the shot, not the nasal mist. On Mtx, you need killed-virus vaccines, never live-virus.

[SjoAmy]

http://www.ncbi.nlm.nih.gov/m/pubmed/7612033/

Methotrexate study, resulting in end-stage liver disease.

[Sleepy In Seattle]

http://www.ncbi.nlm.nih.gov/m/pubmed/7612033/

Methotrexate study, resulting in end-stage liver disease.

This is a study of ONE INDIVIDUAL who also had a rare, genetic disease that affects the lungs and liver, and often results in end-stage liver disease all by itself. Hardly something most of us should be terribly concerned about....and not a good reason to reject Mtx as a viable course of treatment.

[LucyD]

I am on my second week of methotrexate. I took three 2.5 mg tablets (7.5 mg total) tablets last week (my first week) and I took three 2.5 tablets yesterday. Next week I am supposed to double the dose. I am very worried about side effects too, so I am very grateful to read everyone's post here to learn of people having good results and also possible side effects. Last week I did not notice any side effects, but today I felt pretty lousy - headache, exhausted, nausea, but then that is how I feel a lot with the Sjogren's. And, over half of the people in my office are sick with something right now and I have been sneezing too - so not sure I feel lousy from the MTX or from whatever is "floating" around. The days I don't take the MTX my doctor has me take 1 mg folic acid.

I see my rheumy in 3 more weeks so will ask her about taking the MTX by injections. Does anyone know if it is a lot more expensive to fill it that way?

Like you Rachel, and others who have posted, I was very against the MTX and declined it last time my rheumy suggested it, and still am a little afraid of it but for me it also became a decision of quality of life. I am tired of being so darned tired and my rheumy told me it should make me less tired. And the joint pain and inflammation were getting unbearable some days. I used to be very athletic too, and will try to power through anything.
But, it was time for me to give it a try.

Good luck. Please keep all of us posted on how you do with the methotrexate.

[SjoAmy]

We are all just "one individual".....especially if our docs don't know anything about Sjogren's yet.

My liver enzymes went sky high.....AST is 360.....ALT is 80.

both are out of range......AST is 10x what it oughta be.

We suspect Methotrexate in that.....but AST is so darn high that we think it is Methotrexate + something else.

Pharmacist told me liver enzymes at those levels are not anything to play with.  She also told me that elevated liver enzymes happen in 15% of Methotrexate users, according to package info.

Good doctors publish articles about rare cases.  You may not have the rare case happen to you....but it is worth knowing just incase it happens to you.   Its happening to me.....and I wish I had been told about this before starting Methotrexate.

[LucyD]

SjoAmy, I hope your liver enzymes go down. Are they taking you off MTX? My doctor told me that liver damage from MTX is reversible. Good luck.

[SjoAmy]

Not yet.  He wants to rerun the test in two months, establish a pattern.

Pharmacist said two months could be too late.

Have not gotten my usual URI this year.....that has gotta be Mtx.