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View Full Version : Just a bit of support really regarding MTX



Corella
10-05-2012, 07:33 PM
Hi everyone

My Rheumy put me on MTX 10mg once a week for my sjogrens as it is getting really bad - I am to have bloods done monthly to be monitored and I see him in 2 months for an update.

I have mild hair thinning from the disease itself which is kept under control with steroids which always cause excessive hair growth with me. I am really nervous of this drug - I took my first dose the other day and had mild nausea which lasted about half an hour, I had severe chills in the night as in I was so cold I couldnt sleep despite being wrapped up. The next morning though I felt fine.

Just really scared all my hair will fall out - is it a foregone conclusion that I will lose my hair on this dose? I do have a lot of hair and the hairdresser said in a recent flare, it had thinned a bit but you would never guess it.

I shouldnt have read the side effects - I really shouldnt and I wont again but cant help being nervous.

How did you all get on with it? My second dose is due next week - is the first dose any indicator of how you will feel with future doses? If so, I feel fine today.

Sorry for all the questions, just looking for some reassurance - I couldnt take Imuran, whats the difference between Imuran and MTX?

Thanks in advance.

tgal
10-05-2012, 07:56 PM
First thing that you can do is breathe. Most likely none of the things that you have read are going to happen. Actually, the first dose is where you usually experience the worse side effects. Each week gets easier and by the 3rd or 4th week it is like any other med. On these low doses you don't lose hair, few people vomit although some have upset stomachs the first couple of weeks. If you continue to have stomach problems they will usually change you to the injections instead of the pills and that fixes that issue.

No need to panic. This isn't the dose they use for cancer and that is the dose you were reading the side effects about.

Corella
10-06-2012, 01:02 AM
Thank you so much.

I have only had mild waves of mild sickness which pass quickly, one thing - I have just finished my housework and I feel totally wiped out so am just going to relax now. At least it is only once a week - that is something.

SleepyInSeattle
10-06-2012, 08:32 AM
I have been on 25mg/week for about 6 months now....at first, I had some mild problems with it - mostly fatigue/general ickiness. Doc told me to break the dose up and take it two days a week (12.5mg each dose, Mondays and Thursdays) instead of all at once, and that works well for me. I take it in the evening, after dinner (when my stomach is full). I have not had a problem with nausea, and usually by the time I watch a TV show after dinner I am feeling drowsy and go to bed. I sleep through any fatigue/unpleasantness, and wake up the next morning feeling pretty good! In fact, I usually sleep best on my Mtx nights.

It has helped me feel a lot better - it is really weird how taking "poison" twice a week can make me feel SO much better, but it does. My energy levels are 90% of normal now - something that hasn't happened in probably 7 years.

I have lost hair....it continued slowly thinning for several months, and now it seems to have stabilized. My Rheum said that's pretty normal. it's not so much that anybody but my hairdresser and I would notice it, though. I don't love it, but it's an okay tradeoff for feeling so much better!!!!! We're planning to try dropping my dose a bit after a full year, and hopefully some of it will re-grow then. In any case, I think it's worth it to feel better.

The other side effect I have had, unfortunately, is ACNE. It's not listed as an official side-effect, but my Rheum said he sees it a lot. I am still trying to learn how to deal with it effectively. My regular doc suggested a prescription cream but my insurance won't cover it and it's $217!!!! So for now I am trying different OTC things to see if I can get it under control that way. I am 44 and shouldn't have to deal with this, LOL....it's like being a teenager again, only without the benefits of youth... :-P

It's usually only 2-3 zits at a time, but they're big and painful - and of course, UGLY. *sigh...*

But again - way better than the disease!

I guess we have to make some trade-offs. I drink lots of water, eat very well, and completely avoid alcohol, because I know Mtx is hard on my liver. I get bloodwork done every 2-3 months to check that my body is handling it all okay.

I was very afraid to go on this medication, but it's really been a blessing so far. I hope you find the same thing. The first few weeks are the toughest, and then it gets better as your body gets used to it. Some people really CAN'T tolerate it, but there are alternatives. I guess you just have to see whether it's the right thing for you. All the medications have side effects - it's just a matter of finding which one works best with your own body chemistry, with the best benefits and fewest side effects.

Best of luck....!

tgal
10-06-2012, 11:05 AM
So glad it is working out well for you Sleepy!

Corella, you need to remember that she is on 2 and a half times the dose you are though. The side effects for her will be greater than yours. At 10mg there are very few side effects so you really have little to worry about, at least most people don't. If you do then you will go back to your doc. As sleepy said, it is much better than the disease either way.

debbie-b
10-06-2012, 01:29 PM
I loose hair, when I flare( nice rhyme), with or without MTX. When I took MTX before, for six months, I did not have any bald spots, just alot more hair in the drain, but like I said, I had hairloss before MTX, just from the Lupus itself.
I take my shot, it is now at 25 mg, on tuesday night, the next day, I am very weak, but by thursday, I am back to normal. I don't have nausea.

Debbie

SleepyInSeattle
10-06-2012, 02:11 PM
Yeah - just to be clear about the dose, mine definitely is high this first year - I had autoimmune hearing loss, so they really needed to hit me hard with something. If I can stay healthy on the 25mg/week, we'll keep that up for about a year - hopefully sending the autoimmune stuff into some kind of remission or partial remission - then the plan is to back down on the dosage until we find a balance between symptoms and dosage. Hopefully I can get down into the 10mg/week range and not have further hearing loss or other symptoms.

I am also on Plaquenil, if that info helps at all. I had been on the Plaquenil for about 6- 7 months when the hearing loss occurred, so apparently the Plaq alone wasn't enough.

Everybody's different!

Corella
10-06-2012, 06:17 PM
Well I think I have been very lucky - I had a slight wave of sickness which passed and felt very cold and tired at times through the day but feel totally normal now. I think considering I am on steroids and have been for 7 months and now this, I can only think that my immune system is running overtime - when the entire office went down with flu, I was literally the only one not affected - I never get colds.

Anyway, aside from feeling chilled again in the night - nothing to report.

Oh a question for the ladies - I had my brazilian wax and leg wax done yesterday, does anyone know if I can continue this on MTX? I do it on steroids and they suppress your immune system, just wondering about MTX? I hate shaving and dont get on with cream.

steve.b
10-06-2012, 08:06 PM
being male........
i will not comment on brazilian. lol

but i will comment on mtx.
when i was on amounts over 20mg i had hair loss.
but i am currently on 10mg and have no extra hair loss.
just slow even thinning from age.

other things that may help side effects..............

i take mtx in the morning, then eat straight afterwards.
food on top of mtx does not effect the mtx.
but it reduces the effect of mtx on the stomach.

i use folic acid the day after mtx.
please speak to your doctor about this.
mine insists on it.

side effects usually are greater, when a medication is new.
asyour body becomes accustomed to the medication, the effects are usually less.

Corella
10-06-2012, 08:19 PM
I took mine in the evening with my meal - feel totally fine today.

My Rheumy didnt prescribe Folic acid, he said he might later down the line if I get side effects but otherwise not. I do take Biotin each morning though and have done for a while.

Wonder why some prescribe Folic acid and some dont?

steve.b
10-06-2012, 08:27 PM
glad to hear you are fine today.

the folic acid is prescribed because mtx effects the bodies natural supply.

we need the acid. and taking it the day after helpsstabalise our body.
we should never take it the same day as mtx though.

Corella
10-06-2012, 08:37 PM
Hmmm, wonder if I should be worried that he hasnt prescribed it for me? He briefly touched on it and said he would if I had side effects. I dont see him until December now.

magistramarla
10-06-2012, 08:38 PM
Corella,
I took MTX for over a year. I couldn't handle the pills at all, but I did all right with the injections. I was on a very small dose. I had the injection on Sunday evening after dinner. Like Sleepy, I would sleep through most of the queasiness. I would feel really weak the next morning, but gradually felt better after lunch.
My rheumy was very adamant about taking folic acid. MTX drains it from your body. I also noticed that I craved salads and green vegetables.
My rheumy was also adamant about frequent blood work.
My current rheumy only orders blood work every 9-12 months, so I'm being careful and not taking MTX anymore. There was a shortage of the injectable MTX a while back, so the doc didn't renew my prescription and she didn't suggest anything else, so we left it at that.
I noticed that the MTX helped my skin problems a lot. My scalp psoriasis cleared up, and so did the little sores on my body. Both are back now, but the Plaquenil keeps it mild.
I hope that it helps you. It isn't as scary as it seems at first.
Hugs,
Marla
I'm not sure if I had hair loss or not. I've always had fairly thick hair, so it isn't obvious.

Corella
10-06-2012, 08:42 PM
He wants blood work done monthly so Im having my first test done in 4 weeks. Wonder what I should do about folic acid though, could I just buy it or should I wait till he tells me to take it.

magistramarla
10-06-2012, 08:45 PM
It's a cheap OTC supplement, but it would probably be good to talk to him about it.
There is also Folic acid in most multi-vitamins. Do you take one?

Corella
10-06-2012, 08:51 PM
The only vitamins I take are Vitamin D 8000iu as I cant sustain levels, I take Biotin (dont know what it is but it helps with my hair) and omega 3 fish oils.

magistramarla
10-06-2012, 09:00 PM
Corella,
Ask your doc! My docs have had me taking a multi for many years.
Hugs,
Marla

tgal
10-06-2012, 09:06 PM
Crap! I always forget about the folic acid!! I knew there was something I wanted to talk to him about before I started again!

Corella
10-06-2012, 09:08 PM
Oh well, I see him in December so I shall ask him then. In the meantime I guess I could buy folic acid 5mg from the chemist.

steve.b
10-07-2012, 05:48 AM
Oh well, I see him in December so I shall ask him then. In the meantime I guess I could buy folic acid 5mg from the chemist.

the over the counter type is what i get on prescription.

debbie-b
10-08-2012, 03:50 AM
I have never heard, that anyone who is on MTX, has not gotten a prescription for Folic Acid. My rheumy even told me, if I am very weak, the day after MTX, to double my dosage for the FA.
I would call him and ask for it, don't wait until you see him in December.

Debbie

tgal
10-08-2012, 08:37 AM
Neither of mine every gave it to me. I only heard about it here. This is the reason this site is here. The degree of care we get varies from doctor to doctor

magistramarla
10-08-2012, 10:06 AM
Neither of mine every gave it to me. I only heard about it here. This is the reason this site is here. The degree of care we get varies from doctor to doctor

That's the truth! My great rheumy in Texas was so serious about the folic acid that she gave me a prescription for it.
When I started with my current rheumy, I had my prescriptions with me. She dismissed that prescription and told me that I could just get that OTC, if I wanted it. She didn't seem to be at all concerned about it. Of course, she also tells me that Sjogren's is very mild and is only dry eyes and dry mouth.
There are a lot of rheumys out there who need to update their educations.
Hugs,
Marla

Corella
10-08-2012, 02:52 PM
Well I know I have to have a series of blood tests in a month, I am not going to call him now though - you know what doctors are like if they think you are telling them their job.

Very weird this MTX though, as I reacted so badly to Imuran, I assumed I would with this one but I havent at all. Wonder if the second dose will be like that.

Corella
10-10-2012, 02:31 AM
After Fridays dose of MTX, I was quietly smug that instead of having nausea - quite the opposite I had severe hunger pains which was kind of odd. Remained smug if a little tired until yesterday when I went to the gym and after 20 mins, thought I was going to faint, went very pale, felt very weak and had to come home and today was my first day back at work this week and to say I am wiped out and stiff is an understatement.

I have a personal training session tomorrow and they are going to work out a regime that is adapted to my illness but never in my life have I felt so weak and wiped out - horrendous.

Still no nausea though thank god.

SleepyInSeattle
10-10-2012, 07:21 AM
I am not a doctor, but in my experience I would not advise a serious workout in the 18-24 hours after a dose. it IS poison - and it does take your body down for a while. Make the day after your dose a "rest day". And drink a TON of water....it helps your body process the drug.

I'm sorry you had that experience - but it doesn't surprise me. If you tolerate the Mtx pretty well, it can be a real lifesaver...but don't ever forget it's a serious drug and has profound effects on your body, good and bad. Use it wisely!

Nonna
10-10-2012, 04:54 PM
Just an FYI, I was always wiped out after taking in the beginning. It gets better after a month or two. Your body gets used to it. I take it right before bed and eat some chocolates to sooth my tummy. Marla's suggestion ages ago. It works for me. Fatigue is the only reaction get now and that's not a constant.

Good Luck

tgal
10-10-2012, 06:14 PM
I always take mine before bed as well. It helps me sleep through the worst of it

Corella
10-10-2012, 06:19 PM
I am not a doctor, but in my experience I would not advise a serious workout in the 18-24 hours after a dose. it IS poison - and it does take your body down for a while. Make the day after your dose a "rest day". And drink a TON of water....it helps your body process the drug.

I'm sorry you had that experience - but it doesn't surprise me. If you tolerate the Mtx pretty well, it can be a real lifesaver...but don't ever forget it's a serious drug and has profound effects on your body, good and bad. Use it wisely!

I hardly drank any water after it - I feel so daft, it makes sense now. I am thanking my lucky stars I had no nausea really, in fact my appetite sort of increased.

Well today I have my personal training session and my trainer has been told of my Sjogrens and medication, he said I am going to have to get used to a new kind of normal and I can exercise but it is going to be a program tailored for me and my illness and will be very gentle to build up my joints. I guess I only knew my old regime and thats what I tried to do and struggled when I couldnt do it.

Well tomorrow is MTX day and I shall remember about the water, I try to drink lots of water anyway but I will keep that in mind. I am due to go to our local park on Saturday as there is a festival there but its only 5 mins drive down the road so I shall go easy on myself.

Praying I dont lose my hair but Im not on a big dose, although I dont know what the standard dose is for sjogrens? But I have decided not to worry until it happens.

My dryness and pain have been off the scale recently so if this drug helps me then that would be something. Thanks for replying everyone, much appreciated.

magistramarla
10-10-2012, 09:07 PM
It never failed to knock me out for the day after I took it. I had my injection on Sunday night, then a cup of tea, a chocolate and bed.
The next morning, I would have a soft and gentle breakfast, such as oatmeal or rice and milk, followed by yogurt for lunch.
Monday was my down day - nothing but cooking shows, chick flicks and cuddling with my cats.
I would be feeling stronger by dinner and much better the next day.
Hugs,
Marla

Corella
10-10-2012, 09:56 PM
I was OK at home, it was going back to work yesterday and even today that has taken it out of me but staying off is not an option. I am dreaming of my bed as I type.

SleepyInSeattle
10-11-2012, 07:36 AM
I may have already said this (dang brain fog...) but after a couple of months I mentioned to my doc that I was feeling pretty low the day after my weekly dose, and he told me to split it in half - so now I take half the dose Monday night and half the dose Thursday night. Now I sleep through any bad stuff and actually sometimes feel BEST on the days after my MTX.

I do think it takes a couple of months for your body to get used to it, then it gets better, and you also start to see more benefits. For me, it has been amazing so far. I hope you have the same good luck with it!

Corella
10-12-2012, 04:59 AM
Had my second dose about an hour ago - so far so good.

The Survivor
10-13-2012, 09:24 AM
Is MTX better than Prednisone? How does MTX work? I never heard of it from any of my docs.

tgal
10-13-2012, 12:58 PM
MTX is used when plaquenil and steroids are not enough. The goal of MTX is to help lower your steroid dose to a dose whose side effects are minimal while still keeping the disease at bay. Most people use MTX along with steroids not in place of. I was put on MTX after I was unable to lower my steroid dose below 60mg a day without going into a major flare. At this point I still can't get below 40mg of pred even with the MTX so I am sure the rhuemy will be adjusting things once again.

MTX is a type of Chemotherapy. It is used to try and weaken your immune system so it stops attacking itself.

Corella
10-13-2012, 08:42 PM
The only side effect I appear to have had on the second dose but this MAY well be coincidence, is that I have had two nights of not being able to sleep and the first night I sort of felt 'swollen' inside, as though my insides had outgrown my body - really weird bloated sensation.

Dont feel too bad today at all. I wonder how long it takes to get benefits?

magistramarla
10-14-2012, 01:36 PM
Corella,
I've had sleep problems before, during and after MTX, so I can't tell you if it made it worse or not.
I thought that using the MTX was sort of like using Plaquenil - very gradual. After taking it for a few months I noticed - Hey, I don't have an itchy scalp and I haven't seen one of those weird sores for a while!
The sores and the scalp psoriasis have definitely come back now that I'm off of it. But the rheumy still says "You don't have psoriasis". Yea, right.
Hugs,
Marla

Corella
10-15-2012, 07:03 PM
Im getting sores at the corner of my mouth, the exhaustion/tiredness this week is quite intense - much worse than last week. No nausea though or pain which is good. My GP is calling me later this morning to discuss the mouth sores - I shall ask about Folic acid as my Rheumy hasnt prescribed it and I cant get hold of him, my GP will know though.

Are mouth sores common with MTX?

tgal
10-15-2012, 07:08 PM
I think it might be but I get mouth sores when I flare too so it could be the Lupus. You do need to talk to the doctor about it

Corella
11-02-2012, 06:15 PM
Hi guys, thought I would give an update - had my first set of bloods done from the MTX after 4 weeks - everything normal. The only side effects I appear to be getting is nausea which is annoying but bearable and I get tired sometimes.

Consultant hasnt put me on Folic acid - he said he doesnt do it routinely only if certain side effects occur but I am seeing him in a month so we will discuss it then. And in that month he is transferring me to injections as he said that is kinder on the liver.

I have had 5 doses now and only in the past week have I realised that I am starting to feel 'normal' whatever that is. I have cut out a dose of painkillers in the past week so not sure if that is the MTX - if it is, it has taken nearly 5 weeks to work - does that sound right?

Anyway, I am definitely feeling better although the next person that asks me if I am pregnant I may get angry!!! Certain foods make me nauseous - strong smelling foods, even dirty plates but I never actually vomit.

Thats my update. How is everyone else doing?

steve.b
11-02-2012, 08:12 PM
good to hear you are handling the mtx.

sorry about the feeling sick side effect.
it is not 1 of my side effects.

SleepyInSeattle
11-03-2012, 08:34 AM
My experience is that the folic acid helps with EVERY side effect. (I ran out for about 10 days and really felt it!). My advice would be to ask your doc if it would HURT to take it - would it be okay if you just bought some OTC and tried it. I wouldn't do it without talking to your doc, just because I think it's important to have trust there - but I'd maybe push to at least try it. You can buy OTC in 500mg capsules and take 2 a day. Just don't take it WITH the mtx, or it can reduce the effectiveness of the mtx.

Please understand that's just my own personal advice from my experience and the reading I have done - obviously, do your own research and talk to your doc!!!!

Corella
12-04-2012, 04:33 AM
Well it has been 10 weeks this week on the MTX, no folic acid prescribed - I have my nausea and tiredness Sat/Sun but it has made a huge difference to me - I even have a small amount of saliva, however the benefits are easily challenged - if I get exposed to sunlight then I flare, quickly and badly. Last week because I felt sick I forgot my 5mg of preds and about 10 hours later my fingers swelled up hugely and I felt as though my joints were in a vice, so learned a lesson on that one. I think the mxt and the preds work well together and even though I thought that 5mgs didnt do much, it does far more than I realised.

We went away the other week and I had put the air con on in the living area and within hours my joints were swollen and sore and one side of my face was stinging and my glands up - it felt as though I had Bells Palsy again (had that before back in 2007), if I am in an air conditioned room, my lungs dry out so much it hurts to breath.

The rash on my cheeks has taken a new turn as in if I go out in the sun or sit under flouro lights, the rash comes out as raised which it didnt before.

Anyway, my brain fog has gone, my pins/needles down my face reduced considerably and I have cut out a midday painkiller. So something is working. Next week I switch to injections so hope its a small needle - bit nervous but Doctor reckons its better for the nausea.

How is everyone else?