I don't know what's going on

[NikkiNicole]

I took my MTX yesterday. Ugh. I really really really hate taking it because I will feel kind of icky the rest of the day and most of the next. Well ... I wasn't really prepared for just HOW icky I would feel yesterday and now today.

I am violently nauseous. I haven't thrown up or anything. But, I feel like I just ate a GIANT meal, yet I haven't eaten since 5pm yesterday ... and I am so so so so so so so so so so nauseous.

I've emailed my regular doctor, I'm going to email my Rheumy right now.

[Dirty Don]

I'm on mtx also, have been for nearly 3 years now. At first it made me nauseous and ill feeling for about 2-3 days after my dose. Doc had me split dose in half, taking half and half 12 hours apart, sometimes I forget the 2nd half and take it the next morning...doc says that's fine. It has worked for me, no more terrible upset feelings. Try it...it does work...many on here do something similar. Good luck.

[NikkiNicole]

Would that work with the injections? I have to do the shots.
I also wonder ... and this is gross so I am sorry ... if I have been swallowing mucus while dealing with this cold. I have heard that can make your stomach upset but ... this is bad. Like, very bad!!!!

[annekat]

I do a split dose with the MTX like Don does, but I still feel a little yucky. At his suggestion, I have revised it from 4 pills at night and 2 the next day to 3 pills at night and 3 the next day. Sometimes I spread out the 3 in the daytime over a few hours to minimize the effect. Not sure how much difference it has made... I still feel a little yucky. HOWEVER, one time I had a senior/Weggie moment and took all six pills at night before bed. I woke up feeling A LOT yucky, and did so for a couple of days. So some sort of split dose makes sense. Sorry, don't know about doing injections this way; I guess that would be a question for your doc.

As for swallowing mucus, I think we all do it to some extent, even people without WG. It is normal to produce mucus all day, and it has to go somewhere. However, I understand your concern about swallowing big blobs of it and would try to minimize that. Especially if the mucus is from a cold and contains infectious bacteria. But if you do swallow some, it probably can't be helped much, and I wouldn't worry about it much. I'm very sorry about all the nausea and hope that will subside soon.

[Dirty Don]

This is weird, but it's what happened. I found/realized that before dx and everything was in chaos for me, I was spitting abnormal amounts of mucous, then, being the lazy and sometimes considerate person I am...huh?...I swallowed the mucous output...hmmm, not good for stomach. But, in retrospect, it was the spitting that alerted me and, henceforth, the mucous has remained by and by, at large! Yikes!

[Dirty Don]

Would that work with the injections? I have to do the shots.

After reading a few articles on mtx administration, it appears you may be able to split injections also. Now, some of the problems may be in the also splitting the dose as injections only seem to come in 25mg vials. Is that how much you're taking? A standard oral dose is usually only 15mg/week. Do you do the shots yourself? Definitely ask your docs, but you may be able to lessen some of the ill feelings by splitting. Best to you.

[Debbie C]

Hi Nikki,sorry you are feeling yucky. I was just going to ask you the same thing Don just did....why do you have to have injections and not take the pill form. Maybe you are really sick since you said you hadn't eaten anything since the day before. Maybe if you get some soda crackers or some broth you might feel a little better...hope so ! Let us know what your dr. says.

[mishb]

Would that work with the injections? I have to do the shots.
I also wonder ... and this is gross so I am sorry ... if I have been swallowing mucus while dealing with this cold. I have heard that can make your stomach upset but ... this is bad. Like, very bad!!!!

Nikki, maybe you should get to the ER - it may not have anything to do with MTX.


Sorry, I'm being a bit cheeky here because I know that you did go to the hospital, and you have just had your appendix out.
I hope you feel better very soon - but take this time to also have a well earned rest.

[Alysia]

thanks Michelle for updating about Nikki.
Nikki, I hope you will recover soon. enough is enough.
and maybe you can be glad that it is not the mtx.
sending my prayers and hugs to you :hug1:

[annekat]

I didn't know about the appendix..... like you needed another complication! I hope things will settle down soon.

[Debbie C]

I didn't know that either. When it rains it pours !!!!!!!

[ingemlb]

Because of my stomach ulcers we decided I take the Methotrexate on a full stomach after eating dinner. I still only take 10gm so far have not had any nausea which is amazing. Hope it won't start when the dose goes up to 20. Also hope taking it on a full stomach doesn't dilute the effect? Hope you feel better soon.

Inge

[annekat]

Because of my stomach ulcers we decided I take the Methotrexate on a full stomach after eating dinner. I still only take 10gm so far have not had any nausea which is amazing. Hope it won't start when the dose goes up to 20. Also hope taking it on a full stomach doesn't dilute the effect? Hope you feel better soon.

Inge I think taking it on a full stomach should be fine and wouldn't dilute the effect. It might be a little trickier to avoid nausea when you go up to 20mg., so then you might be advised to split the dose over 24 hours. Maybe you could do an intermediary dose of 15mg. for a time? But some people have more nausea than others, and you may be one of the lucky ones who don't have as much of a problem.

[mishb]

I was told to only take during or straight after a meal. I have never taken it any other way and so far (touch wood) no problems with nausea

[NikkiNicole]

I knew something wasn't right. I knew it! The extreme nausea (I'm talking .... very extreme) and feeling like I was full was all my appendix being very angry. Thankfully, there was no rupture. If it had ruptured I'd be in bad shape. I went to the doc, had my tummy prodded, was sent for blood work and a CT. While waiting for the CT I got my blood work back and it looked just fine (as usual!).
When I went to follow up for the CT at the clinic, they whisked me off to the ER via wheelchair and it was like boom boom boom, they checked me in, hooked me up and shot me off to the OR. I spent the night at the hospital and a week riding the couch.

Lesson learned!!!

[Debbie C]

Wow Nikki,you were very lucky it didn't rupture. Glad you went back to the clinic. That's one way to lay around for as week a guess:biggrin1: Glad you are doing better.

[carriej22]

Eek!

As for injectable MTX you can just take what you need from the vials. I did MTX for a very short stint because I had a terribad reaction (yes, I'm making words) but I did one shot a week. Was useless for 4 days so split it into two shots a week.

[NikkiNicole]

Yea, I feel pretty useless after my injections. It's gotten to wear I get a little nauseous when I see a vial or a needle because of the major nausea after my shot before my appendix surgery. I know they aren't related but ... since I figured I was having a bad reaction to my meds, I have it in my brain.
I did my shot this week and was fine, I mean ... useless as ever but not nauseous but it still makes my stomach turn to see a vial or a needle. Or smell the alcohol pad ...

[Alysia]

Scientists Have Finally Discover the Function of the Human Appendix ~ RiseEarth (http://www.riseearth.com/2014/03/scientists-have-finally-discover.html#.Uxs_dvl_vL4)

[mishb]

Scientists Have Finally Discover the Function of the Human Appendix ~ RiseEarth (http://www.riseearth.com/2014/03/scientists-have-finally-discover.html#.Uxs_dvl_vL4)

We all know that the appendix is only there to store the carrots in - you know the ones that you throw up........even when you haven't eaten carrots.
Lol - they come from the appendix :flapper::w00t::lol:

[Pete]

Because of my stomach ulcers we decided I take the Methotrexate on a full stomach after eating dinner. I still only take 10gm so far have not had any nausea which is amazing. Hope it won't start when the dose goes up to 20. Also hope taking it on a full stomach doesn't dilute the effect? Hope you feel better soon.

Inge

I took my mtx about halfway through my evening meal from the beginning. Seems to be working ok for me that way.

[ingemlb]

what a pity it's not useless :( Many years ago I had a very rotten year. After 10 years of being treated (unsuccessfully I must add) for stomach ulcers (we are talking mid 80's here) I was finally diagnosed with gallbladder disease and gallstones. So after a long argument with the surgeon who showed me the x'rays and I saying well most of us go round with gall stones and these pains are the same pains I have been having 10 years and him saying well you were mis diagnosed and it's easily done .. I went to my GP and said what am I to do the surgeon wants to cut out my gallbladder. He said, lie down. Put his finger in my side and I jumped for pain. GP said I am touching your gallbladder. So ... operation booked. Then I had this most peculiar symptom of something going wrong and back to my GP to find out I had a prolapse of the bladder. Gynacologist said come back after your gallbladder surgery. I said can't you do them together, one at each end of my body? He said not possible. You need to move after gallbladder surgery and lie still after prolapse repair work. So .... I was in for 2 and had them several months apart.
Then I came down with weird flu like symptoms. Sharp back pain and felt rather lousy. Saw GP he said go home and tomorrow things will either be worse or it's the flu and you will know.
By evening I was in a mess of pain in nearly every part of my body. Husband took me to the ER. They had a young intern working there who prodded around and because I was now thinking the surgeon took the wrong organ because I once again had chest pains i wasn't going to swallow anything that could aggravate the ulcer I figured I must have. So the young intern stepped outside the curtain and spoke with my husband. Now curtains aren't sound proof as you can imagine. He said. your wife is hysterical and imaging things. She can't possibly be having all the pains she is saying. So he had written me off as someone hooked on drugs. My husband was furious. Demanded to know his name. Told him his wife NEVER complained of pain and when she did it was CERTAIN to be VERY SERIOUS. so he gave in and jabbed me with some morphine. then decided maybe I must have some kidney or UTI infection and put me on very strong antibiotic saying come back 10am. I said 10 wild horses wouldn't drag me back here and left.
Back to GP who admitted me immediately and it was several days later Mum had studied her encyclopaedia and decide I had a ruptures appendix. By this stage every imaginable test and been done. It appeared I had pneumonia. Liver was failing. You name it it was going wrong. so my mother insisted the doctor be called in on sunday night which my husband insisted on doing. i was most embarrassed. GP came. Called specialist who said who on earth put you on these antibiotics, they are masking all the symptoms. Husband took out his notebook. This surgeon was in charge of surgery at the hospital where the intern worked. (for him) so I am afraid that Intern had it coming to him. took another 3 days of pain for them to decide to simply open me up and take a look and it was a giant ovarian cyst that had burst and meant removal of my right ovary and massive cleanup. the gunk in the abdomen from the burst cyst had pushed against the liver which had squeezed the diaphragm and lungs and caused the pain in all those parts of the body I was feeling it.
so that was operation number 3 in about 4 months.
I was pretty disgusted with surgeries by then so when once again a couple of months later I got the same symptoms and my GP was away I was talking to his offsider and he said I think you have a burst appendix. I said NO WAY and I am going home. Took off in the are and drove home by myself. By the time I got there my husband was on the phone with the GP who told him I needed to go URGENTLY into the hospital and I was given no choice.
Ok I met a very young surgeon and told him if you are going to go into my abdomen and cut out something else, please help yourself to anything else I don't need because I NEVER WANT TO COME BACK EVER AGAIN FOR ANOTHER OPERATION. I told him (because he found by X-ray it was the left ovary that had burst) if you take the ovary may as well take the womb as well as it won't be of any use to me and whilst you are at it clear all the adhesions from my bowels and please for goodness sake take the appendix out because i NEVER again want to hear I have a burst appendix.
He did as much as he could. Womb was too imbedded with adhesions so he left it. Removed the remaining ovary. Cleaned the adhesions and removed a "perfectly healthy appendix".

so ... now I am sorry I had it taken out :( Would probably have saved me from a lot of the diarrhea attacks I had last year by repopulating the bowels with the GOOD bacteria.

Guess we should know that nothing is redundant in our bodies!!!

However i seem to have survived 30 years since then so I guess I managed ok without it :)

[mishb]

Wow that is crazy :razz:

Who ever said that God gives us things for a reason, or, he gives them to us because he knows we can handle it - you are one tough cookie :unsure:

You have had more than your fair share and shouldn't have been lumbered with WG/GPA as well :crying:

Good golly miss mollie

[ingemlb]

Aw Michelle. I did have some good years in-between. After that 4th surgery I had a long good break :) We all have our sad tales to tell. I was just venting annoyance that at 34 I decided to throw away a perfectly good appendix :( It only happened because my normal Surgeon who is ultra cautious was away on holidays and I got this more gung-ho younger chap I hadn't met before who had a lot more courage. Anyway. Like I said I survived without it so far. Also without the gall bladder. So ... our bodies can somehow compensate :)

[Sydney Paris]

I've been on MTW for 14 months. 40mg/week. For the most part, I have had relatively mild side effects. A little nausea, maybe some dizziness for a day or so afterwards. However, last year, after I'd been taking MTX for 2 months, I had a very violent reaction. Nausea, dizziness, vertigo such that I had to lay flat on my back, and if I turned my head, I threw up. It lasted a good 24 hours, and was able to sleep most of the time. That was the only time I has such a reaction. Within a couple of days, I was back to normal. My doctor said it wasn't necessarily due to the MTX, that it could have been an inner ear issue, or something else. Would be interested to hear if anyone has had a similar experience?
Having never experienced anything like that before, I'm pretty sure it was the MTX. Anyhow, it can happen, and thankfully, only happened once so far. Splitting your dose into 2 injections may be a good idea to help.

[annekat]

I've been on MTW for 14 months. 40mg/week. For the most part, I have had relatively mild side effects. A little nausea, maybe some dizziness for a day or so afterwards. However, last year, after I'd been taking MTX for 2 months, I had a very violent reaction. Nausea, dizziness, vertigo such that I had to lay flat on my back, and if I turned my head, I threw up. It lasted a good 24 hours, and was able to sleep most of the time. That was the only time I has such a reaction. Within a couple of days, I was back to normal. My doctor said it wasn't necessarily due to the MTX, that it could have been an inner ear issue, or something else. Would be interested to hear if anyone has had a similar experience?
Having never experienced anything like that before, I'm pretty sure it was the MTX. Anyhow, it can happen, and thankfully, only happened once so far. Splitting your dose into 2 injections may be a good idea to help. Well, that is very interesting, Sydney. We have been discussing vertigo on another thread. I had to go to the ER with vertigo a week ago and have not even started my official vertigo thread about it yet. But I had just taken my weekly MTX, in a split dose of only 15mg. total, and was having some ear disturbances too, when it happened, possibly due to seasonal allergens, and had noticed a loss of hearing in the previous couple of days (I wear hearing aids, and they weren't working as well as usual.) I had done some other unusual things, too, such as taking the OTC decongestant pseudoephedrine to try to "open up" my ears, and using some OTC "ear wax removal" solution in the worse of the two ears, which had had wax issues before. So, there you have it, there were a few different things that could have caused the vertigo, or maybe none of them. But 40mg/wk of MTX sounds like a lot to me even though you haven't had much in the way of reactions. I get a small amount of dizziness and nausea with just 15mg. It seems like the balance mechanisms in the inner ear are very delicate and sometimes it doesn't take much to set off an imbalance. I have had vertigo a couple of times before, when I wasn't taking MTX, but the events weren't as severe and I was able, like you, to sleep it off, and it didn't come back for a very long time. This time was a little scarier, accompanied by vomiting and a racing heart, so I called for help. The racing heart and high blood pressure went down before long, and they gave me some anti-vertigo meds, which helped a lot pretty fast, and they sent me home. Have been a little wonky ever since, off and on, but have the meds if I need them, and am feeling better every day. The hearing has improved some, too, in one ear, at least.

[NikkiNicole]

I have been cruising along fine without a gall bladder for 7 years, and I know I don't need my appendix so good riddance!!!

I was cleaning my ear today (the outer part!) and had a severe jolt of pain in my eardrum. Hope that's not the start of an ear infection. We'll see! I'm having a bit of bleeding from the biggest incision on my tummy. It split open a little ... it's not gushing and it's definitely not a gaping hole so I think I am OK.

[annekat]

I have been cruising along fine without a gall bladder for 7 years, and I know I don't need my appendix so good riddance!!!

I was cleaning my ear today (the outer part!) and had a severe jolt of pain in my eardrum. Hope that's not the start of an ear infection. We'll see! I'm having a bit of bleeding from the biggest incision on my tummy. It split open a little ... it's not gushing and it's definitely not a gaping hole so I think I am OK. Hmm... good luck on the ear.... and the incision. I know I stick things in my ear when we are not supposed to.... don't know if you do that, too. I guess pulling on the ear canal a certain way could cause some pain if it tweaked the ear drum just right. Maybe I'm grasping at straws here. But I think I have felt pains in my ears without it being an ear infection. The ear drum is very sensitive and I think could hurt just from being touched.