Methotrexate Support Group

[girlygirl]

Personally I've been on methotrexate injections for over a month now. Following previously talking the pill version. I would love to hear from others also on methotrexate. My rheumatologist initially put me on mtx for my CD and arthritis induced by CD.

How are you feeling? Any side effects? Any benefits from switching to mtx from other meds.

The fatigue is one of my major side effects.

How does this affect you or your loved ones?

 

[Sailorluna]

Hi,
I would love to hear the same. I am about to switch to methotrexate from azathioprine.

 

[Trev]

I know a lot of people swear by methotrexate, but I had bad side effects, after 12 years of Aza, it stopped working and I switched to methotrexate, I started having blurry eyes and after 1 month of taking it, I had a blood clot in my right eye and lost my sight. I phoned the people who make methotrexate and was told this was a known side effect, but they wouldn't say how many people it had effected. all the drugs we take have bad side effects and I wish I had been better informed years ago, I may have made different drug choices.

 

[SupportiveMom]

Wow never heard of the eye issue.

My kid is on the Mtx+ Humira combo but it looks like soon we are switching Mtx to Imuran. Mtx hasn't made much difference for her. She has been on it for a year now after a has reaction to Remicade. We were hoping adding Humira would be enough but the combo isn't working for her. No side effects for her. Its the one drug she is taking I don't see the adverse affects.

 

[theOcean]

Hey everyone, I've been off of Imuran for a bit because of side-effects, and my GI wants me to consider another immunosuppressant -- which means I'm likely moving to Methotrexate. In terms of side-effects: do people seem to experience less if it's taken orally versus injected? Or does it still seem to be very much up to the individual?

Basically, I'd just like to avoid losing my hair again.

 

[Droopy Drawers]

My GI started me with a series of 4 weekly injections & then switched me over to tablets

I mentioned increased joint pain & hair loss to both the GI & my Rheumy & after a discussion between the 2 was put back on weekly injections & 2 mg Folic acid daily

Just had blood work & no signs of kidney or liver probs

Rheumy also wants to add Humira, but I really don't want to add that just yet

 

[CrohnsKidMom]

My son is on MTX injections and is doing well. The GI would not let him take the oral pill, as it is hard on the digestive tract. My son had some mild side effects early on-tiredness and loose BMs, but no hair loss or nausea. I hope MTX works well for you!

 

[SupportiveMom]

Ocean since you are used to the needles for Humira I would do mtx injections. You already know how to do subq injections & the mtx are way easy compared to Humira. My d doesn't even fuss for them. Hear its more effective too.

 

[Chichy]

I'm on 15mg a week and it's stopped working! So now it's just being used to try stop anti-bodies while I'm on Remicade. I'd love to be off it 100% because the injections make me want to be sick

 

[Droopy Drawers]

I'm getting 25 mg im weekly
Rheumy wants to add Humira to the mix

Also taking Pentasa 500 mg 8 daily
Folic acid 2 mg daily
Vit D 5000 mg daily
B12 injection monthly

And still feel rotten

Just diagnosed with basal cell carcinoma on my face & need to have it surgically removed

 

[Droopy Drawers]

I'm getting 25 mg im weekly
Rheumy wants to add Humira to the mix

Also taking Pentasa 500 mg 8 daily
Folic acid 2 mg daily
Vit D 5000 mg daily
B12 injection monthly

And still feel rotten

Just diagnosed with basal cell carcinoma on my face & need to have it surgically removed

 

[SupportiveMom]

The combination can really help but takes a bit to kick in. The Humira+Methotrexate didnt work for my kid but its looking like Humira+imuran might be. I hate her taking all of the meds but if we might see remission after 2 years from it I will be the happiest mother ever!

 

[kromom1]

I've been taking MTX injections for over a year. It works pretty well for me, controls my gut pain. Of course I'm still on prednisone (can't seem to get below 5 mg without my symptoms coming back). No side effects that I can specifically link to MTX. I really need to get off the prednisone, though, as it has caused diabetes, so I'm going to try vedolizumab as soon as my doc's office can get it approved.

 

[mgoblue3]

I took methotrexate for awhile, probably like 6 or 7 years, and just got off it within the last month. Initially I was taking as injection, since I was a kid and my doc worried about absorption problems. I hated the injections, they made me feel nauseous for days, but blood tests were better so we stuck with it. Then after years of begging, my doc let me switch to pills, first 10 pills then down to 8. They still made me feel really nauseous, and the day after taking them I usually didn't eat. They helped blood tests at first, but eventually nothing got better so I was finally able to get off it, which was a relief for me. It affects everyone differently, and I just could never get used to it. Hope it works out well for you, best of luck

 

[liscol]

I have now had my third methotrexate injection (20ml) and so far so good. I am still on prednisone taper as well though so have to wait and see how it goes long term. Have already tried Aza and 6MP both made me sick and my liver couldn't cope. Doc wants me to change to oral methotrexate after one more week so hoping that will absorb ok.


Update:29.10.2014

I would say I have had mixed results from methotrexate. I have been on oral 20mg one a week for 2 months now. I have not had any noticeable side effects as such but have been sick a lot with the flu and a tummy bug so bad I was in hospital for 4 days. Have still had mild Crohn's symptoms and only been of prednizone for 1 week.

 

[aimeey17]

Hello, im new to this support group. Was wondering if anyone has had any extra with mouth sores on methotrexate? I have several right now and thete really painful. Can they get infected? Is this something to worry about or no big deal?

 

[Sailorluna]

I had more mouth sores before mtx. Just from the crohns. There is an over the counter mouthwash from oral b for mouthsores that seems to help.

 

[Farmwife]

Hello, im new to this support group. Was wondering if anyone has had any extra with mouth sores on methotrexate? I have several right now and thete really painful. Can they get infected? Is this something to worry about or no big deal?

Was canker sores an issue before starting mtx?

 

[aimeey17]

Was canker sores an issue before starting mtx?

Yes I'd get a canker sore here and there but right now I have like 10 of them and they really hurt it even hurts to press on my cheeks from the outside. Two of them are on my gum and im worried they could cause a dental issue. Is it possible for these things to get infected and csuse bigger problems or are they just annoying but harmless?

 

[Farmwife]

It also might be a sign of the mtx not being strong enough to keep you in remission but only a doc can tell you that.
My dd uses magic mouthwash thats a prescription. Works wonders.

 

[Guest17]

I am so sick, the dr I've had for almost a year hasn't treated me dispite the many tests that show advanced crohns and ibd. I feel like I'm dying, I hurt so bad. I cry daily, I just can't fight this battle anymore.

 

[Jay Woodman]

Methotrexate has just been recommended along with Remicade to help prevent antibodies from developing. I hope to understand more about Methotrexate with the help of the Forum..

 

[Jay Woodman]

This U.K. Article provides an excellent informative backgrounder on Methotrexate. The link wouldn't work but if you google the following highlights it may help locate the article...

U.K. National Association For Colitis and Crohn’s Disease

Drug Treatment
Information for patients with Inflammatory Bowel Disease
Improving life for people affected by Colitis and Crohn’s Disease
Methotrexate

 

[Tony H]

just took my first dose of mtx a few hours ago , 10mgs (4x2.5) here's hoping for success and no side effects (I'm an optimist) .

 

[Jay Woodman]

just took my first dose of mtx a few hours ago , 10mgs (4x2.5) here's hoping for success and no side effects (I'm an optimist) .

Hope you do well with the Methotrexate. I've decided to start mine on a Monday night..just thought I'd separate it a little from the weekend..Ive been prescribed 5X2.5. I wonder what the rationalization is for the dosage prescribed...Guess that means more reading for me : ) Any reason in particular for your day of the week?

 

[Tony H]

Hope you do well with the Methotrexate. I've decided to start mine on a Monday night..just thought I'd separate it a little from the weekend..Ive been prescribed 5X2.5. I wonder what the rationalization is for the dosage prescribed...Guess that means more reading for me : ) Any reason in particular for your day of the week?

I started mine on Sunday because we have a nice meal normally on a Sunday so if I was going to have any bad reaction I wanted to have a nice "last supper" , I'm on 10mg for the first 4 weeks and 15mg after that.


PS so far so good no bad reactions and hope you have no problems as well Jay

 

[Jay Woodman]

@Tony...Thanks so much for the optimism! I took my 5X2.5 Methotrexate last night & am here enjoying a green tea this morning : )

 

[Lady Organic]

Hi I'd like to share my experience and some infos about methotrexate, which i took for about year, by weekly injections (20mg).

I was lucky enough methotrexate didnt cause me any (known) side effects, well except a bit of hair loss at the beginning.

Methotrexate in the context of an IBD, could be better absorbed via Injection route. I have a pharmacist who works in team with my GI and who specializes in IBD research and treatment. She insisted I got the injection. In the context of arthritic disease (i.e Rhuematoid Arthritis), pill version is the norm. Injections are not painful and are easy to make. They are not fun of course, but ok. I was pretty nervous the first few times, but after, its very easy.

It is important a trained nurse should help for first injection, as there are many little details. If I remember correct, it is also said injections have less possible gastro-intestinal side effects.

There are some variations in methotrexate injection list of ingredients depending on which company produces it. If you would like to avoid extra conservatives inside, its possible to call your pharmacy and inquire about ingredient in the composition of the drug and possible options. I did that and I had my injection delivered every week at home instead of once a month, for the same price, minus some of the conservatives! This initiative was a personal choice and not a recommendation from a specialist. Its also possible to make your own seringes right from the vials to avoid extra conservatives, but because of particules that can be launched in the air around during manipulation and inhaled by the rest of the family or pets, pharmacists will prefer we have the seringes prepared in a pharmacy where technicians use protective suit and ventilation equipment! I found the best way for me was to have it made magistrale by my pharmacy and delivered everyweek.

also regarding Folic acid, which should always be taken during treatment with methotrexate, there are different dosing protocols. my specialized IBD pharmacist clearly mentionned not to take Folic acid the day BEFORE and the DAY of methotrexate. It should be taken depending on dosing prescribed, the day after or remaining days of the week, if on a low dose continuous daily schedule.

I hope this help.

Im wishing you a good journey on methotrexate, really feel sorry for Trev who has had a really bad experience. Unfortunately, methotrexate has prouved to be ineffective in my case as my recto-colitis is flaring right now. Im back on purinethol for a 3rd time, hoping blood counts will be great this time around.

 

[fissure2]

I got my first injection 25mg this past wed. I am also on humira, I hope this combo works, its been 5 months of flare now.

 

[Tony H]

Hope you have good results with the mtx fissure2. ,
Took my second dose of mtx yesterday , was fairly tired all day today ,hope it wasn't the mtx

 

[fissure2]

i just came off prednisone at the same time, ive noticed only tiny improvement so far

 

[mvond5]

Son is 16 plays on 2 ice hockey teams and he's been doing the SCD diet for 2.5 years. His blood work has been going into the positive direction. Until May after he got mono everything seems to be going wrong. Blood work, calprotectin going in the wrong direction. Doctor put him on Apriso back several months ago and we are still not seeing any improvement. Doctor now want my son to go on Methotrexate which we are unsure about but Doctor's office feels like this is his best option to stop the inflammation before it gets too bad.
What is your thoughts?

 

[Jay Woodman]

Methotrexate at 12.5 mg appears to be initiating D. Week 1 - First day after first night was uneventful. Then D started out of nowhere. Week 2 - D next morning & everyday since ....Not sure if anyone else has had this occurr...

 

[fissure2]

yea, injection day was good, but didnt last. i had my second injection yesterday. will get blood work back tues.

 

[Tony H]

I'm still doing ok , no nausea this week but was fairly tired for a few days, joint pain seems better this week but a few creaks in the joints today , hop the d clears up Jay .

 

[Jay Woodman]

I'm still doing ok , no nausea this week but was fairly tired for a few days, joint pain seems better this week but a few creaks in the joints today , hop the d clears up Jay .

Thanks Tony! I will touch base with my GI.

 

[Tony H]

not feeling the best yesterday and today , a bit nauseous and stomach does not feel great , not d but a lot looser .

 

[mvond5]

I am still on the fence. I know his symptoms via blood work and calprotectin have moved up. But they. Are still pretty low. It just seems like there has to be something out there that's a little more mild on his body.

 

[Grumpy1]

Okay am starting methotrexate tomorrow taking with, 20mg of pred per day until mtx takes effect, 1 shot of Humira every week (as 1 shot every 2 weeks didn't work) and 1 mg of folic acid every day - other than running screaming from the room does anyone have any advice? This is my Hail Mary Pass - nothing else has worked for me and I am allergic to remicade and Imuran. I have to have an MRI within the next couple of weeks because they are scared that the pred has caused a problem with my hip so I am really hoping that the mtx works.

 

[Tony H]

good luck with the mtx Grumpy1 , I'm a month into it now and I'm going to 15mg this week , so far no improvement on the joint pain which is what im primarily taking it for , the nausea has decreased since I upped the folic acid to 800 micrograms a day .

 

[Grumpy1]

Thanks Tony, I hope that it works. I'm really nervous about it but I'm keeping all my fingers crossed. I hope you feel better soon too!

 

[Jay Woodman]

@TonyH...Hope things are improving for you....I'm feeling much better with the Methotrexate at Week#3 & Week#4. Things appear to be settling down again. After Week #2 - I really wanted to stop the Methotrexate.. I am trying to continue the Methotrexate with the Remicade as Combo Therapy, at least, at the current time.

 

[duh panda]

After working my way through everything including all TNF-blockers I'm currently taking Entyvio and 20mg pred. Since starting the Entyvio there has been decreased signs of disease in the large bowel. Adding in Methotrexate (pill form) on Monday to try to get small bowel under control and off the prednisone. After 9 years of active disease and 2 years of increasing flare in severeness regardless of treatment I'm all in. Here's to hoping for good results in the upcoming weeks!

 

[Tony H]

@TonyH...Hope things are improving for you....I'm feeling much better with the Methotrexate at Week#3 & Week#4. Things appear to be settling down again. After Week #2 - I really wanted to stop the Methotrexate.. I am trying to continue the Methotrexate wgrith the Remicade as Combo Therapy, at least, at the current time.

Hi Jay , no improvement yet , I'm going up to 15mg today so hopefully that might kickstart an improvement , great that you are improving .

 

[keanobrien]

I have been on mtx for 4 months - once a week injection along with Humira. I am very tired and sick the day of and the day after the injection. I feel nauseas and have a headache. I feel great after that and am so grateful the meds are working. its really wonderful.

 

[Layla]

I've just started MTX, last Wednesday was the second shot. I don't mind doing the injection nearly as much as I thought I might, the needle is truly tiny and the MTX doesn't sting when it goes in. I was nauseous last Saturday though, not really bad but there all the same. Could this still be from the MTX, 3 days after?
Otherwise I notice no difference and have upped the Pred back to 15mg hoping that will be enough until the MTX kicks in.
I'm on 25mg of MTX, 15mg of Pred and 1gram of Pentasa 4 times a day and a bunch of supplements like vit d, zinc, magnesium etc.
Still have plenty of D although I've now started back on a low fibre diet which is helping some and also quite fatigued but still do-able.
I also take folic acid, 5mg once a week the day after I do the MTX. Is this what you guys have been told to do too? The pharmacy said I should take it 2 days before the MTX but the GI said the day after.
And what is the folic acid supposed to help with? Would taking more spread out over the week help with the fatigue?

 

[keanobrien]

Layla, The folic acid helps with the nausea. I take 1 mg every day and 2 mg on the day of my injection. i have noticed a huge difference in symptoms since starting folic acid.

also, zolfran helps with the nausea.

 

[duh panda]

I didn't think I would feel excited for my injections when I was given the choice to start MTX - and went to pick up the prescription only to be handed a syringe and vials. But, for the first time in a year I'm seeing success in tapering off of prednisone. Every shot means another 5mg taper; and it is stupid easy, not to mention painless, compared to Cimzia and Humira injections.

Certainly been noticing a lot of nausea and increase in fatigue/ exhaustion day of and up to 2 days after injections to the point of vomiting twice when taking my daily walk this Past week. Appreciate the info keanobrian.

 

[keanobrien]

That's so great it's helping you too!!! I am able to taper off prednisone for the first time in 1.5 years. Sadly, they just diagnosed me with ITP which is treated with presnisone, so I am figuring out what the solution is.

I know mtx is a big deal drug, but having symptom relief and only feeling "really sick" 2 days a week is pretty rad!!!

 

[Layla]

The nausea got worse and some days even an anti-emetic wasn't helping much so now I'm on 5mg folic acid 3 times a week rather than just once and so far so good! I take the shot on Wednesday so take the folic acid on Thursday, Saturday and Monday.

I was also getting cracks in the corners of my mouth that weren't healing, apparently that's due to malnutrition and the folic acid should help with that too.

Sadly it's not doing much for my gut, still have lots of D and urgency, my joints are more painful than they were and my feet and calves are cramping all the time, preferably in the middle of the night:stinks:. I've been taking magnesium to help with that but that causes D so I'm not sure what to do about that. I'm seeing my GP next week, hopefully she'll have some options.

Despite all that I've lowered the pred to 5mg as I've been on it for more than 6 months and I really want to get rid of it!

I've been on 25mg of MTX for 7 weeks, should it be working by now?

 

[Layla]

Well. I've managed to get of the pred, woohoo! Not that the MTX is doing anything noticeable but I figured not being on pred for a while must be good.

As I said before I had no issues with the first few injections, however the last 2 injections have started to hurt, I can feel a sting when it goes in and it lasts for quite a while afterwards. Has anyone else has this happen?
It's not terribly painful but certainly different than before.

 

[Droopy Drawers]

Well. I've managed to get of the pred, woohoo! Not that the MTX is doing anything noticeable but I figured not being on pred for a while must be good.

As I said before I had no issues with the first few injections, however the last 2 injections have started to hurt, I can feel a sting when it goes in and it lasts for quite a while afterwards. Has anyone else has this happen?
It's not terribly painful but certainly different than before.

Are you letting the skin dry from the alcohol swab before you inject ?
Also, pinch the skin up between your thumb & forefinger & rotate injection sites

Upper thigh worked best for me

 

[Lady Organic]

Well. I've managed to get of the pred, woohoo! Not that the MTX is doing anything noticeable but I figured not being on pred for a while must be good.

As I said before I had no issues with the first few injections, however the last 2 injections have started to hurt, I can feel a sting when it goes in and it lasts for quite a while afterwards. Has anyone else has this happen?
It's not terribly painful but certainly different than before.

yes this could happend to me on occasions too. nothing to worry at all. I thought this could be due to tiny blood vessels exploding, but it may also be the alcohol as DD pointed out.

 

[Layla]

Thanks Droopy Drawers and Lady Organic, I tried waiting until the alcohol was dry and it made a big difference!

I probably only have 4 more injections of MTX to go as I've just started Humira, now those hurt, especially in the thigh!

 

[k_dubs25]

First time posting in this particular support group so hello everyone!

I've been on 25 mg/week since the beginning of December (along with Entyvio since October) and am really struggling with the hair loss. It's been 3 months and it's still falling out like crazy. I used to have beautiful thick hair and I've probably lost about 1/3 of it at this point. I'm frustrated with my doctors because I only agreed to go on methotrexate for 1-2 months to get me by and now they won't let me come off of it. I know that my health is what's most important, but as a woman I'm just having a very difficult time feeling confident in my appearance anymore.

 

[duh panda]

Hey K_dubs!

So sorry to hear you're struggling with the hair loss. It can be a large blow to self-confidence regardless of age or gender.

Sounds pretty much where I've been at too the last couple of months but was never given the belief that I would be coming off methotrexate - just hoping to get off pred. with no luck. Lucky for me most of the men in my life are balding or bald so... it helps keep it in perspective, and my mom is a hair dresser so I can have her cut and cut until I feel good about what I have. It pays off to have a good hairdresser in your life who you can trust no matter who you are!

I had my mom cut my hair off into a full pixie after a lot of debate and trying to maintain what I had to get through my sister's wedding this last fall. Mom cried while I was just grinning the entire time. I was so tired and depressed at being able to see how much hair I was losing. It's still very thin, and filled with lots of baby fuzz that seems to fall out just as a new batch starts growing in but sometimes it's not about what you don't have currently, but what you can do with what you still have.

I find it is just as important - if not more so - to invest regularly in the little things whether it be switching up a hair style, going out with friends for a manicure (or doing an at home girls night), getting a facial when prednisone/ meds takes over, or just spending some time over coffee/ tea with a couple of people whose company you enjoy.

There is a certain amount of pride to be had when we look however we look due to striving for health. Don't let the mirror fool you into thinking otherwise, and when it does - do something for you to prove it wrong.

 

[Droopy Drawers]

Ask about Folic acid

It help slow my hair thinning

 

[Robrich]

K dubs
I too am on Entyvio and MTX. NO HAIR LOSS JUST FATIGUE
ARE YOU INJECTING OR TAKING PILLS?

I opted for the injections as they have fewer side effects.
Going to ask to lower dosage maybe that's a good compromise for you too?

 

[k_dubs25]

Thank you so much for the replies everyone!

Duhpanda, I'm going to get a haircut tonight, only a few inches off so I'm not as brave as you! I'm hoping that will help make it not quite as noticeable. I love your suggestion of doing other things to feel good like manicures!

Droopy Drawers, I do have folic acid but it seems only to give me bad acne rather than helping with my hair!

Robrich, I take the pills. My doctor didn't think it came in pen form (which I used for Humira) and I don't think I'd be able to give myself regular injections. The pills also seemed like they'd make things easier in the long run since I don't have to worry about refrigeration. I am definitely hoping to lower my dose, I just wish I knew if it's the mtx or Entyvio that's making me feel better! Do plan on continuing on the combo or eventually going to just Entyvio?

 

[Robrich]

K dubs
I never Gave myself an injection until MTX, hate needles. But desperate for results without side effects. No pens, no need for refrigeration, needle is very thin and It is over in a flash, not so bad. Better than hair falling out.
It's probably the combo making you feel better. Seems there is rarely a magic bullet.

 

[Grumpy1]

K_dubs my hair is also still falling out from mtx. I have been using a shampoo called Nioxin which I used when I had an issue with hair loss years ago when I got sick and it seems to slow the loss a bit, and I also got my hair cut shorter.

I can honestly say that the mtx has helped me so I guess if worse comes to worse I'll just buy a wig and get on with it because the way it was before prior to mtx and after 16 months on prednisone and 50 lbs of weight gain I'm all for anything that doesn't include pred or being in the hospital again. Not sure that the Humira is working for me but I'll keep my fingers crossed and hope for the best. Good luck and keep your chin up it will get better.

 

[k_dubs25]

Robrich, so the mtx injections don't have to be refrigerated? I figured since Humira was that would be too.

Grumpy, I hope that the Humira kicks in for you soon! It worked wonders for me for about a year and a half. Hopefully this hair loss will stop for both of us soon as well!

 

[Robrich]

That is correct no refridgeration for MTX injectable. Store at room temp.

 

[k_dubs25]

Interesting, I'll definitely have to ask my GI about it when I go in a few weeks. If it means not having to deal with the hair loss as much, I think I can suck it up and do the injections. Thank you!

 

[Pixie100]

Hi everyone.

I have been on Remicade for almost 9 years with great success until recently, at which time Methotrexate was added to my cocktail. I have tried Methotrexate on its own on previously, but found the side effects overwhelming.

Currently I'm experiencing headaches. My GI slightly reduced my dose and is hopeful I will be able to slowly increase to the prescribed dose. In addition, the folic acid has been increased. I'm scheduled to take my third dose on Thursday.

I would very much like to return to work in management on an exciting albeit stressful project ASAP. Does anyone have success with adjusting to methotrexate over time? (The headaches make me a little less patient and I'm concerned about the impact of that on my relationships with others).

 

[Pixie100]

Hi there!

I'm wondering if anyone has had success in adjusting to methotrexate over time. My third dose is due Thursday and I'm experiencing headaches that make me a little less patient than normal--I would like to return to work ASAP and am concerned about the effect of the headaches on my relationships with my team.

On a positive note, a reloading dose of remicade and the addition of methotrexate have substantially reduced my abdominal pain and pregnancy-like distention.

 

[Pixie100]

Sorry for the double-post

 

[Grumpy1]

Pixie100, I take a drug for migraines that keep the headaches down to a dull roar and when I mentioned that my migraines were breaking through after I started the MTX they increased the dosage for my migraine med. I found that the headaches did lessen after about 3 months and I have been able to drop my migraine med dosage back to the original dose.

The benefit of MTX outweighed the side effects in my particular case. And I also just told my co-workers that I was on this new drug and that this was a side effect and to please just excuse me if I was snappy - they were really good and would just say "okay, are you alright, cause you're a little grumpy right now" and we would all laugh. They have been amazing through this rollercoaster ride of drugs and side effects.

 

[duh panda]

Hey Pixie it took about 6-8 weeks for me to feel adjusted to my MTX injections. We were discussing the possibility of adjusting to a lower dose and building it up at the month mark due to side effects but they leveled off before any changes needed to be made.

Pretty predictable now - slight increase in pain in the day or so leading up to MTX injection and wake up with a headache the morning of the injection each week but it's usually gone by lunch time (I take my shot first thing after waking up), a bit of excess fatigue day after but the nausea/ constant debilitating headaches/ major exhaustion all leveled off after a month or so.

 

[Lady Organic]

interesting idea about hair loss : aromatherapy
the fallowing dermatology study is about alopecia, but this could maybe help some of us too:
http://archderm.jamanetwork.com/article.aspx?articleid=189618

 

[Pixie100]

Grumpy1 and Duh Panda,thanks so much for your response to my inquiry regarding time to adjust to Methotrexate. It's encouraging to hear that a successful transition can be made. Last Thursday, I took the prescribed dose and have had a rough week. And like you, Duh Panda, my pain returns prior to the next dose. I find it so helpful to speak with others with experience--it can be awfully lonely out here!

Thanks again.

 

[astarks]

Has anyone else had issues with feeling feverish after an MTX injection? I took MTX orally several years ago, but had to switch meds due to the awful side effects. Now my rheumy has decided that it would be worth trying the injectable form to avoid some of the GI side effects, which has worked fairly well, but usually for 48-72 hours after my injection I feel feverish - chills, achy muscles, sensitive skin, etc.

I have a similar reaction for a day or two after my Remicade infusion, but because that's only every 6 weeks, it doesn't really interfere with my life as much. I'd like to stay on the MTX, because it does help with my SpA, but these side effects are killer! I don't really want to have to go through the process of trying to find other meds that work - again - but it's hard to justify being ill three days out of every week, so I'd appreciate any advice on mitigating side effects!

 

[duh panda]

The first 2 months or so we're pretty rough getting going with mtx. But as it's gone on the exhaustion/ nausea/ feverish sensation has lessened in intensity and time wise. Been 7 months and now the injections don't interrupt weekly routine nearly at all.

I did notice I felt less crummy when adding in folic acid. If you havent already, I'd mention your concerns to your gi and see if they think that could be beneficial. Or if lowering the dose and building up over time is an option for you. Hope you notice better things soon, is a tough call when meds work but side effects are as terrible or worse then the disease being treated.

 

[astarks]

Thanks for the quick response Duh Panda. I've been on the MTX for about 3 months now, so I'm still holding out hope that over time the side effects might lessen somewhat. I've been on 1 mg/day of folic acid since I started the injections, but maybe I could talk to the doc about whether upping that dose might be helpful.

Side effects vs. benefits is always a tough choice, you're right. I think I'm going to stick out the MTX for now, but if I haven't managed to work out some of the after-effects of the injection by 8 or 9 months in, I might talk to the doc about finding something else. Decisions, decisions.

 

[CD mom]

Anybody on MTX and Entyvio?
Thanks

 

[Robrich]

Yes I am.
Adding MTX was very helpful.
I had a very limited response to entyvio.
Added 25 mg MTX inj and within a month improvement was quite noticeable.
Reduced pred from 40mg/d to 10.
Inflammation in rectum cleared up.
Now on 15mg/d MTX -and Entyvio every 4 weeks
Definitely worth a try.
Good luck!

 

[CD mom]

Yes I am.
Adding MTX was very helpful.
I had a very limited response to entyvio.
Added 25 mg MTX inj and within a month improvement was quite noticeable.
Reduced pred from 40mg/d to 10.
Inflammation in rectum cleared up.
Now on 15mg/d MTX -and Entyvio every 4 weeks
Definitely worth a try.
Good luck!

Thanks for your prompt response.
Any side effects?
Son on Entyvio and after 7 months still very ill. Undergoing another resection and removal of 3/4 of his colon. Temporary ileostomy. Plan is to keep him on Entyvio and add Methotrexate. No longer able to take steroids as he has osteoporosis. Anemic and malnourished.
Diagnosed at age 8. Currently 24 y/o

 

[Robrich]

Some nausea and fatigue from MTX at first. Diminished over time on the lower dose.
No issues with ENTYVIO

 

[astarks]

CD Mom: I'm not on entyvio, but I would say that the MTX injections have been very helpful for me, especially for my arthritis. I take it in combo with Remicade for the CD.

The oral form made me sick as a dog, and the injections had some bad side effects at first too, but I've been doing the injectable form for about four months now, and as of the last 3-4 weeks, my side effects have been minimal. I guess I would just say to stick it out for a while. It might not seem ideal at first - when I began taking it, I was easily sick for 3-4 days out of the week from side effects - but after a while it really made a difference.

 

[duh panda]

Coming up on a year on MTX and 4 migraines so far this month

They were an issue in the first 2 months, trailed off, and are now hitting again in frequency and intensity often lasting well into a second day.

I'm curious if there are any others active in this thread (or used to be active, no longer are, but still subscribed) who have seen headaches diminish after initial build up of MTX only to return 10x worse then before later on.

What did you do?

Currently, I get about 1 really reliably good day a week. This is more stability then I saw pre-MTX. But, The last month or so I've been laid up unable to function or hold down fluids 2-3 days/ week. I want to take MTX out of the picture, but while the lows are increasingly low the good days lately are exponentially better then I've seen in the last 2 years. I'm nervous/ scared risking even that one usually solid day but at the same time am eager to enjoy a majority of "good" days - not pain or days spent dealing with med backlash.

 

[DanaBanana]

I've had a steady fever since last Monday. I inject Thursday evenings. I'm in it 5 weeks now, 25mg. Today my other half tracked down my gi Doc at work (we are both healthcare workers. Though I've been on leave since July when I got too sick), anyhow...He decided immediately that I should switch to pill form at a lower dose for the next four weeks and ordered a batch of blood work because I shouldn't be fevered like this.
Im scared to do these pill form, as I know it's tendency to bring nausea is higher than that of injection and thats one thing I haven't had to deal with yet...I've had zero nausea with the injection...just this bloody fever and the hangover feeling post injection for 2 days. But I'll give it a go because he's the expert. Lol

 

[lgpcarter]

I'm on 12.5 a weekly with the pills and the I had nausea at first, but got better after a few weeks. I am usually tired the day after I take the pills, but not too bad other than that.

 

[DanaBanana]

I'm on 12.5 a weekly with the pills and the I had nausea at first, but got better after a few weeks. I am usually tired the day after I take the pills, but not too bad other than that.

Thank you for sharing that.. It gives me hope! I'm definitely curious about how I will feel post pill dose vrs the injection. My 2 days after injection are a complete write off... I just feel like I'm dying, but like I said, no nausea so I've been just clinging to that as my reason to be grateful, telling myself "at least you're not nauseated!" lol

 

[lgpcarter]

I usually take it on Sunday evening, and then feel pretty tired for most of the day on Monday. Stool usually a little softer that day too. Other than that, tolerating it pretty well. Did take a few weeks to get used to it, though.

 

[DanaBanana]

Yah the injection makes me run to the bathroom all the next day...can't trust a fart lol
I gotta say, since this all started you would never hear me say something like that. I'm so shy regarding "number 2". The first time I had to say to the Dr "mucous in my stool" I just about died! Lol

 

[Whit]

I'm on 12.5 pills a week and I take my dose on Monday evening. Tuesday I am very tired and often drop mucous uncontrollably into my underwear which is very annoying. Wednesday I feel better and by Thursday I am OK but my energy level has been way down since Crohn's diagnosis. It is hard to know if it is the disease or the chemo.
I get chilled easily and one question maybe someone can answer? I have a tender spot on the left side of my lower abdomen. It gets hot to the touch and will sometimes go away but then comes back. Ultrasound was negative and my DR. thinks it is just a pulled muscle but I don't agree. I think it is related to either Crohns or chemo. Anyone else have this weird issue?
Thanks,
WHit

 

[astarks]

duh panda: I'm a bit late - I haven't kept up with the forum lately - but for the past 4-6 weeks, I've been having awful migraines 3-4 times a week, which isn't typical for me. I've had migraines sporadically throughout my life, but only maybe one every couple of months until now. It hadn't occurred to me that it might be MTX-associated. Have you heard anything from your docs about it?

 

[Whit]

Nothing from my dr but other people on this forum have complained of severe headaches associated with MTX. Sorry this is happening to you. Good luck and also, my dr. is very good but keeps telling me that everybody reacts differently to MTX as far as side effects are concerned.
Whit

 

[DanaBanana]

I'm prone to migraines but thankfully have had very few since beginning MTX, however I was warned they could increase.
My gi Doc switched me from 25mg injections to 20mg pills 2 weeks ago. Not fairing well with the pill form as it's been causing awful digestive issues, so I'm thinking going back to the injection but at 20mg might be worth a shot. We shall see...I don't see him until Jan 16.
I'm also looking at going for some acupuncture. I've read great stuff about it helping crohns. I had some combined with physio when I tore my rotator cuff years back, and it was wonderful.

 

[astarks]

DanaBanana: I didn't do well at all on the pills. I took them for 3 years when I was in high school, and ended up almost entirely homebound because they made me so sick. The injections have definitely been more bearable for me as far as side effects. Why did your doc switch you to pills? I'd rather take pills than deal with another needle, but it just isn't worth the added side effects for me. Good luck with the acupuncture!

 

[DanaBanana]

DanaBanana: I didn't do well at all on the pills. I took them for 3 years when I was in high school, and ended up almost entirely homebound because they made me so sick. The injections have definitely been more bearable for me as far as side effects. Why did your doc switch you to pills? I'd rather take pills than deal with another needle, but it just isn't worth the added side effects for me. Good luck with the acupuncture!

He switched me to pill form to see if it would help resolve the constant fevers I've been having. It hasn't. I feel sicker. :-(

 

[duh panda]

duh panda: I'm a bit late - I haven't kept up with the forum lately - but for the past 4-6 weeks, I've been having awful migraines 3-4 times a week, which isn't typical for me. I've had migraines sporadically throughout my life, but only maybe one every couple of months until now. It hadn't occurred to me that it might be MTX-associated. Have you heard anything from your docs about it?

Nothing from docs about it. Folic acid supplements do seem to help - timing them right before and for the 2 days after injections have been keeping headaches from hitting full blown debilitating migraine status. I did have to request the supplement. The GI currently overseeing my care is hands off and just continuing treatment from a GI I had for 8 years before moving states - the current one doesn't fight me on what I want, but also hasn't been helpful or forthcoming on her professional opinion for anything. I have a consult appointment with a new GI on the 5th of Jan. and one of my questions for them is their opinion on if it's worth it to keep trying to manage it as a side-effect or try switching to a different immune suppressing combo med. with the Remicade. Would love to ditch the injections and (hopefully) headaches/ migraines but we will see what's said in the next week if anything.

 

[DanaBanana]

Nothing from docs about it. Folic acid supplements do seem to help - timing them right before and for the 2 days after injections have been keeping headaches from hitting full blown debilitating migraine status. I did have to request the supplement. The GI currently overseeing my care is hands off and just continuing treatment from a GI I had for 8 years before moving states - the current one doesn't fight me on what I want, but also hasn't been helpful or forthcoming on her professional opinion for anything. I have a consult appointment with a new GI on the 5th of Jan. and one of my questions for them is their opinion on if it's worth it to keep trying to manage it as a side-effect or try switching to a different immune suppressing combo med. with the Remicade. Would love to ditch the injections and (hopefully) headaches/ migraines but we will see what's said in the next week if anything.

Having a proactive Dr goes a long way....I hope the consult with a new Dr goes awesome.
Treatment is so full of weighing the pros and the cons. It sucks. I'm thankful my gi is most concerned with my quality of life. That's the kind of Dr we need.
It's still early for me, as I'm only going into week 8 of MTX and I'm still not feeling any benefits and if anything, the pill form has made me feel worse. On top of this I'm in a full blow RA flare so I'm feeling extra miserable. Such a long road...remission is the goal and I habe faith it will come but right now it feels so far away.
Keep us posted on the new Dr and how that goes.

 

[duh panda]

Thanks DanaBanana

Hope your body starts coping better with the pill form and the RA responds and settles down! Here's to hoping 2016 is the year great things will happen I've got a good feeling about it. I figure even if remission stays out of reach there is no reason the steps working in that direction can't be just as satisfying.

 

[Lady Organic]

hang on Dana Banana, hopefully the methotrexate will kick in soon. I'd encourage you to return to the injections (better for IBD patients). what dosage are you on?
Are you on prednisone right now to calm down the RA flare and gain some time for the mtx to kick in?

 

[DanaBanana]

hang on Dana Banana, hopefully the methotrexate will kick in soon. I'd encourage you to return to the injections (better for IBD patients). what dosage are you on?
Are you on prednisone right now to calm down the RA flare and gain some time for the mtx to kick in?

Thank you! I'm on 20mg MTX. Yesterday was my last dose of predinsone after 8weeks of it. Started at 40mg, dropping 5mg every 7 days. I don't feel like it helped at all but in light of the RA flare, maybe it had been. All I know is I feel like garbage between the crohns flare and now the RA flare. Sucks. Today is the worst because it was MTX last night, so today I feel run over. I see my gp Monday...He's not apt to do anything regarding the MTX as he prefers to leave that up to my gi Dr, whom I'm seeing January 16. However, I can discuss what to do to manage the RA flare. When I see the GI dr, I'll suggest going back to injections.
I did receive some good news yesterday. I got approved for long term disability through my employment. So that's a huge relief. A Christmas miracle and a wonderful way to begin 2016.
Also, we had Christmas dinner last night and I managed to eat some yams,steamed carrots, and shrimp. Not much but, more than anything solid in many months. I wanted more cuz it tasted amazing, but happy I stuck with a little because I still needed to take a buscopan later and visit the loo a few extra times.

 

[mish2575]

also regarding Folic acid, which should always be taken during treatment with methotrexate, there are different dosing protocols. my specialized IBD pharmacist clearly mentionned not to take Folic acid the day BEFORE and the DAY of methotrexate. It should be taken depending on dosing prescribed, the day after or remaining days of the week, if on a low dose continuous daily schedule.

I was prescribed Folic acid to go with it. No one ever mentioned not taking it the day before or of. Do you know why?

 

[DanaBanana]

I was told to take it every day except the day I take the mentho. I've heard some take 7mg once a week
It really varies on the Dr, so it seems. No matter which way you are counselled to take it, make sure you take it. Methotrexate prevents us from making folate that we need, so taking the sup is important and it also helps ease the side effects.

 

[mish2575]

@TonyH...Hope things are improving for you....I'm feeling much better with the Methotrexate at Week#3 & Week#4. Things appear to be settling down again. After Week #2 - I really wanted to stop the Methotrexate.. I am trying to continue the Methotrexate with the Remicade as Combo Therapy, at least, at the current time.

why did you want to give up weeks 1 & 2?

I'm starting this weekend. . .

 

[mish2575]

So then i would suggest taking it every day, why stop? You cannot overdose on Folic Acid, your body doesn't absorb more than it needs.

Reading this thread has scared the bajeezus out of me! I'm going to start this weekend. I'll do it Friday night i think so that i'll hopefully be over the major side effects (should i get them) by Monday.

I see lots of people complaining about side effects that seem like they would be relieved by MMJ. I take MMJ every day. Does anyone know if it will help with nausea and / or headaches?