Severe nausea with oral methotrexate

[littlemissh]

I just took my first dose of methotrexate 20mg last night. It was prescribed orally as my GI says that most people are fine with it orally and easier than another injection.
I am already on weekly humira and various other meds and have no probs with them.

I am usually very lucky and don't get physical side effects with drugs (aza kept causing severe neutropenia so was stopped but thats it) but within an hour or two of MXT I felt a bit nauseated. I decided it was my imagination and went to bed.
But this morning it is really bad, has eventually worn off after ondensetron. I had to leave an appointment at the bank it was so bad!
I have only just got rid of nausea/vomiting due to Crohn's with the increased in humira again :-((

For those of you who have it orally, does it wear off, or did you/do you have nausea for a few days after each dose? I took folic acid this morning.

Its like morning sickness, horrible.
I really hope I don't have to keep taking ondansetron to be able to tolerate it. I don't know if my gastro gives it with injection.
Uggh, nothing seems to be going my way right now.

 

[PsychoJane]

As you said, some people do well with the tablets but some can't handle it. My doctor offered me both possibility and he did recommend the injection over the tablets from the fact it does not stress your body in the same way (you don't end up needing to digest the pill per say) which tends to be easier for the side effects. Also, it is a better alternative if the disease is active considering the absorption related to the injection is not compromised by the condition of the guts. Also, I have not heard you mentioning folic acid? Are you taking these? It is quite important to do so and in case you are not taking any (every day at the exception of the pill day) it could make a difference, it helps lessening the side effects!

 

[Clash]

My son takes 25mg of MTX a week and like PsychoJane said out GI offered both and explained you may get more side effects with oral because it has to be digested bit we decided to try oral first and if side effects were bad then we would switch to injection. He takes 1mg of folic acid each day. He has not had nausea.

I think kwalker switched to injections from oral when he was utilizing MTX because the side effects were bad.

 

[KayleighMeek]

When I first started methotrexate I had awful sickness and heartburn my GI upped my
Folic acid and I was put on omzoprezol (spelling?) and this helped to settle things but it did take time for it to settle. After a couple of months it had settled down and now I don't get either.
I would tell your GI and see what they suggest. Hope it gets better for you soon

 

[littlemissh]

Thanks. I am on 5mg folic acid the day before and the day after the methotrexate. I am already on 80mg omeprazole.
I am seeing my GI in a couple of weeks and may ask his advice. Next monday I may take some regular nausea meds to see if prevention is better than cure.
He may say that it is only the first few doses whilst the body becomes accustomed to it.

 

[KWalker]

Clash is right. I did horribly with methotrexate orally and my doctor warned me I would so I had to take it at the beginning of the weekend because he told me I would need the weekend to "recover" so to speak. I took it weekly and it was literally hell. The digestion period can cause a whole variety of side effects and I literally spent the whole weekend on the couch feeling like I was absolutely intoxicated. I was vomiting, no appetite, the room was spinning, I had no energy, etc. The doctor told me it was common with oral methotrexate and some people do react really badly to it.

After I was switched to injections, I got a slight headache the night of the injection at first but it went away as my body got used to it. It was also light enough that a Tylenol could take care of it. I did however get occasional night sweats while taking the injections but that, to me is more of an annoyance and it was still much better than how I was doing on the pills.

 

[Mountaingem]

Clash is right. I did horribly with methotrexate orally and my doctor warned me I would so I had to take it at the beginning of the weekend because he told me I would need the weekend to "recover" so to speak. I took it weekly and it was literally hell. The digestion period can cause a whole variety of side effects and I literally spent the whole weekend on the couch feeling like I was absolutely intoxicated. I was vomiting, no appetite, the room was spinning, I had no energy, etc. The doctor told me it was common with oral methotrexate and some people do react really badly to it.

After I was switched to injections, I got a slight headache the night of the injection at first but it went away as my body got used to it. It was also light enough that a Tylenol could take care of it. I did however get occasional night sweats while taking the injections but that, to me is more of an annoyance and it was still much better than how I was doing on the pills.

This is exactly my experience, and also, my ALT levels skyrocketed on the oral methotrexate but stay normal on the injections.

Another idea is that if your folic acid levels crash (as is known to happen with methotrexate) that can also cause severe nausea. Sometimes you need leucovarin, which is prescription grade folic acid.

Peppermint tea and altoids helps short term, so sorry you're having a rough time.:ghug:

 

[KWalker]

I'm no scientist or doctor but I know it has something to do with the digestion period. The chemicals in your body react in order to break down the medicine and that is when the side effects happen. By injecting it you completely eliminate that phase and it allows you to take more, faster.

 

[littlemissh]

Well, my nausea settled after a couple of days which is good.
Unfortunately my blood count to check on my Hb levels was due 2 days after my dose, and they showed up that after only 2 days I am neutropenic and a generally low white count.
Rechecked again today and it has dropped further. It is likely to go lower over the next week- yikes.

AAgh. Why oh why is nothing ever straight forward. My gastro consultant is not happy and wants to with-hold MXT but restart at a much lower dose once my counts are better. He even said that I am making him go grey as things are never straight forward with me.

I have to avoid anyone with an infection, and any temperature I will have to be admitted again for the iv neutropenic protocol.
I remember now why I stopped posting about myself on here, it never seems to be an uplifting post.
Sigh.

 

[Grant]

I was on Methotrexate jabs & felt terrible. After a month I had to stop as my quality of life was so low.
Best Wishes
Grant

 

[Mountaingem]

Well, my nausea settled after a couple of days which is good.
Unfortunately my blood count to check on my Hb levels was due 2 days after my dose and they showed up that only after 2 days I am neutropenic and a generally low white count.
Rechecked again today and it has dropped further. It is likely to go lower over the next week- yikes.

AAgh. Why oh why is nothing ever straight forward. My gastro consultant is not happy and wants to with-hold MXT but restart at a much lower dose once my counts are better. He even said that I am making him go grey as things are never straight forward with me.

I have to avoid anyone with an infection, and any temperature I will have to be admitted again for the iv neutropenic protocol.
I remember now why I stopped posting about myself on here, it never seems to be an uplifting post.
Sigh.

Sorry about your WBC's, ugh that sucks. Hopefully it will self regulate soon. If not, missing a few weeks of pills may do the trick, and there are new meds coming out that may work better for you too.

Hon, please know that your presence, your determination and will to survive are uplifting. Everyone here values your spirit, your contributions and the forum just wouldn't be the same without you.

This is the last place anyone would expect you to be cheerful with all you've been through-this is where we all come to vent and share. We've all been there, I'm feeling pretty low myself these days, so don't feel bad about it.

Let it all out, hold nothing back, free yourself of your troubles and know that we care about you and your feelings, we want to hear all of it, and that we're here for you no matter what comes! PM me if you ever want a private chat, OK?
:ghug:

 

[Mo']

I recently came off of Methotrexate injections because of the nausea that came with it. Although I am no longer taking the drug, I can offer a few tricks that seemed to help me with the nausea- taking anything with ginger in it is extremely helpful, whether it be hard candy, real ginger ale, or my personal favorite was ginger gum. Immediately after injection I popped in a couple pieces of the gum and it seemed to alleviate some of the nausea. My doctor also recommended taking benadryl before taking the medicine and it seemed to help as well. You may also want to ask about an over-the-counter drug called zofran-it is used to relieve nausea.

I hope this may have helped! Good luck and feel better soon!

 

[2inthehouse]

My son experienced nausea on oral MTX too and he eventually had to stop it and move on to something else. Just an fyi -- in methotrexate treated patients, the clearance of Humira is estimated to be 44% lower than in patients not treated with MTX. You might bring this up with your doctor. Good luck and hope you are feeling better soon.

 

[littlemissh]

Well it didn't end terribly well. My wcc continued to drop and then I was admitted via ED to ITU 10 days ago with septic shock secondary to neutropenia and pyelonephritis. Never felt so ill in my life and my husband didn't know what to do.
I seemed to have tubes all over with a central line, arterial line, catheter etc.
I am now out of ITU and on the ward. All being well I will have my central line taken out today.

Very much want to go home. I miss my girls.
I have now spent almost 5 of the last 8.5 weeks in hospital and had enough now.
Of interest when I was admitted apparently they gave me GSF - granulocyte stimulating factor which worked quite well raising my neutrophil count which was only 0.5 on admission despite a raging infection

 

[2inthehouse]

Gosh! Hope you feel much better and get to go home soon -- though it sounds like you got good care in the hospital. Time to get back to life and your babydolls!! Thinking of you and wishing you the best.

 

[littlemissh]

Well, I have escaped at last. I just need to stay out now.
Its good to be back with my family again, though typically my eldest (12yrs) has gone to a pool party so haven't seen her!
I have to withold Humira until saturday and they are not sure if methotrexate will be recommenced at a lower dose or not. I have to say I am anxious about it - my discharge summary said that my TOTAL WCC on admission was 0.6 - that is almost no white cells at all.
Lets hope my GI tract behaves until I restart Humira.

 

[BoyMama2000]

How are you doing now? Did you re-start any meds? I hope things are going well and that you are enjoying your girls and hubby!

 

[Manzyb]

littlemissh-I'm so sorry to hear all you've been going through again

Were you so ill because of the methotrexate? That's crazy! I didn't do well on it, but I haven't done well with a lot of the medications.

I hope that you get to start taking Humira tomorrow and it makes you feel great! Big hugs to you, and I hope you get to feeling great!

 

[littlemissh]

Thanks and hi again manzy. Yes I have had ongoing issues really with several hospital stays in he last 8 months.
They feel that the methotrexate caused the septic shock as it stopped my bone marrow working (in addition to weekly humira) and then I developed pyelonephritis.

It was advised by a tertiary hospital in London in St Marks, to try and control my disease due to massive GI bleeds from my small bowel. I needed 7 units of blood in 24 hours in may and was transferred from my usual treating hospital to london at that point.
They want me to restart it at a lower dose if my white count remains normal, though it has dropped again so my neutrophils are low again.

I really need to avoid infection as I keep getting severe infection due to the amount of meds I am on but if hey reduce Crohn's flares so much. So I cannot work as it is a very infective environment, very depressing as I enjoy it...having said that I am still getting over my ITU stay right now.
Fingers crossed I can manage at least a couple of months without an admission.

 

[mcate238]

Oh my gosh that sounds terrible. I'm so sorry! I just started metho last week (15 mgs) and have been taking it at night right before I go to bed. I haven't had any side effects at all. I feel like I'm crazy! Maybe I should just take it as a blessing and not question it. It's nice to not have side effects for once. Let's just hope it works

Thinking about you all!

 

[mcate238]

okay well maybe that post was a little premature. I've been on methotrexate 10 days and woke up this morning nauseous and with acid reflux. Finally pulled myself off the bathroom floor to come to work, but not feeling much better. Does it sometimes just take a couple doses for the nausea to kick in? What a great weekend it's going to be...