Methotrexate Struggles

Hi, I was diagnosed with JIA at 12 and was on MTX for 9 years, got taken off for not quite a year then put back on. It is really hard as I am attempting College now and the MTX is hitting a lot harder this time.

I always got pretty sick on the morning after taking it ((I take it then go straight to sleep so I do not feel it kicking in.)) and crummy the next 2 days or so. But now I am feeling really bad for 2 or 3 days and still pretty off for another 2, then like 1 day of normal and I am taking MTX again. Before I was on Ondansatron and it helped so much, but since you need special permission to get it, I do not have it this time.

I am having some issues with digestion as well, eating and then getting sick like 8 to 10 hours later and throwing up undigested food, and almost constant diarrea. The diarrea has gotten a bit better the last few days but I am drinking gallons of Matcha green tea ((Which a friend suggested as it is a diuretic)) not sure if it is actually helping or not. Also I am not hungry at all until the day I am taking MTX that night so I am not eating much and a lot of my favorite foods taste really bad for 3 days after MTX.

I am also having extremely itchy legs and well scalp. I do have eczema and mild psoriasis ((Mostly around my hairline and head, but also elbows, knees and shoulders if I get really stressed or sick.)) The itching stops when I am in water, shower, bath, hot tub, but comes back once I get out. Benadryl helps but I do not want to live off it as I am itchy every day.

My first go around no hair loss at all, now after about a month doses ((once a week)) it just started to fall out. It started on Friday and by Monday it was fairly visible, 5 bald spots varying in size ((Two of with were visible before shaving my head)) and a bald jagged line where my hair usually parted. I did get my head shaved yesterday as I could not watch as it fell out, kept a small piece in front cause it is cute but not sure if it will stay in.

I also have Mild to Moderate Asthma ((Has gotten a bit better after being taken off Naproxen daily)), Hypoglycaemia ((Low blood sugar)), Migraines and my blood test say Iron deficient Anemia ((getting tested again in a few weeks)). I am taking MTX once a week, Sulfasalazine twice a day, Folic acid everyday except the day I take MTX, Flovent twice a day, Calcium and Vitamin D supplements every day. I also take Naproxen and Rebeprazole when needed and T1's or other pain medication.

I am not planning on stopping my Meds unless the Doctor says so, but I am very open to suggestions to help with the symptoms and all that as I get thru the next 5 to 6 months ((I get revaluated then and meds may change.)) Also if I can help anyone else I am willing to try.

I hope everyone is having a low or no pain day and is living as they can.

24 Replies

  • Hiya. Sorry to hear what a hard time you're having, and so young. I was wondering what sort of food you eat and if you've experimented at all with changing your diet?

    Lots of us on this forum have found that changing our eating habits can help. Foods to avoid are often meat, wheat, sugar and dairy, but it varies from person to person. Eating less processed foods and more organic is also worth trying.

    It's something you have to experiment with and find out for yourself what helps. It's helped me which is why I suggest it. It might help your asthma and eczema too. Could you manage to exclude all dairy products for a couple of weeks to see if you feel any better?

    What are your favourite foods? Sometimes that's a clue as to what to exclude..

    Hope you find something that helps, so you can enjoy college!

  • I eat a fair bit of red meat at the moment to help get my iron up as well as Spinish, dried fruit and nuts. ((The last two months or so.)) I normally eat more chicken or fish and lots or rice and as many veggies and fruit I can get. ((Thou my diet did change from normal about 2 months ago.)) I an intolerant to Yeast so I stay away from it and all things containing it, Breads, doughs, most soup flavorings and some spices, almost all processed meat. I rarely eat fast food or got out to eat mostly homemade meals me or my family make. A fair bit of homemade soup and stew, with rice or barley or beans. I have tried taking Milk out before a whole excruciating 2 months last time and it did not help, and also warm milk with a little sugar is one of the only things I can stomach sometimes. Favorite foods, Dark Chocolate, mangos, Iced coffee and low salt crackers. All of which either taste horribly bad or for the crackers they have no taste at all. I seem to be able to eat some stuff I normally do not really eat, like I never add salt to anything normally but after MTX I need salt if I am going to taste it unless it is spicy ((Butter chicken or stuff like that)) which I need to get rid of most of the spice where normally I like spicy, I do not eat it a lot but if I do I like heat usually. I have changed up a bit in the last bit, lots of Matcha tea and trying some Hemp hearts products, they use hemp flower instead of wheat. Supposed to be high in Fiber, Protein and Iron. It is just getting harder to do as I am sick most of the week and in classes the rest so not able to work and my savings account is dwindling every time I go buy food or anything else I need.

  • It seems as if it would be difficult for you to change what sounds like a pretty good diet. Just wondered, when you took milk out did you also stop eating cheese and butter, and check the labels of any foods you bought for lactose and other dairy products? These days there are lots of alternative 'milks' e.g. made from almonds or rice.

  • Yep we took out everything that contained or may contain dairy and lactose.

  • If you are having so many side effects from the mtx you should contact your rheumatology helpline. I didn't tolerate mtx as a teenager and was changed to leflunomide when I was 18. But I tolerate it quite well now in injection form. Are you on a high dose of mtx? Do you take it orally or by injection? Swapping to injections might help as it doesn't go through your stomach. I always took my tablets with food when I took them. Which would help with feeling sick. Good luck ☺

  • Only 4 pills a week, so 10mg. I was on 20 as a kid and did a lot better then I am now. Tried pills and injections before and yes the vomiting was easier with the injection but I got horrible head aches with it that I do not get with pills.

  • I really do think you should contact your rheumatology team for some advice or give the NRAS helpline a call. It might be that they can increase the folic acid further maybe to 10mg a day which might help. It will get better when they find the right medication. I was diagnosed at 14, I'm 35 now and have a relatively normal life now (as normal as possible with taking medication daily, injections and hospital visit etc). I teach full time and exercise regularly. Call your helpline ☺

  • Sorry to hear you have been through so much, have you advised the

  • Oops, pressed the wrong button, was about to say have you contacted your rheumatology dept, they may be able to offer an alternate Dmard that may suit you better. You sound as though you are having a good diet, maybe a blood test for b12 deficiency, All the very best X

  • Unfortunately she is away on vacation, but I do have blood work scheduled in about 2 weeks.

  • It too me a few weeks to get over the initial problems I had with mtx. Namely diarrhoea, I also take 10 mg a week. I was on Azathioprine for 31 years and only came off them because of small skin cancers. The turning point for me was taking Humira, 8 years ago, have you been offered a biologic. Once your rheumatologist is back, let her know how you are feeling. Good luck. X

  • They offered Embral when I was younger but then decided against it because the possible affects of that were worse then my symptoms.

  • They must have their reasons, we are all different, but so many people have had better results once they have gone on them, with less side effects. We have a process in the uk to go through before being offered them. Back to my first reply re b12. I spent many years with low iron/ferritin levels and on iron tabs that didn't agree with me, I haven't needed them since being on 3 monthly b12 injections. I do also have Hashimoto's, have you also had a thyroid function test. Hope you soon get the medication that works for you to enable you to continue your studies. Take care. X

  • I'm so sorry to hear how MTX seems to be affecting you, especially at such a young age, but I do wonder if you've considered if is the MTX & not the SSZ. I mention this because whilst I know MTX can cause nausea & even sickness so can SSZ. If I explain. I've been on MTX 8 years & whilst I'm generally well controlled otherwise I have disease activity in my feet, they don't like to be controlled at all! As I can't increase my MTX dose above 17.5mg (injections) because my liver levels rise a Registrar prescribed SSZ. Once I got to 500mg twice daily I started with nausea. The next week it was increased again & it became worse & by the following week at 500mg four times daily I was really struggling so my GP prescribed an antiemetic (prochlorperazine) which eased the nausea. I figured as the dose I was on wasn't effective & I really didn't want to increase it again I'd talk to my Rheumy nurse who asked the Registrar if I could reduce the dose. To cut an already long story short I got down to 500mg daily & tried without the antiemetic but was nauseous again. That was it, I decided SSZ wasn't for me. I also experience very low mood on it so considered it was no great loss so stopped it & have since been advised not to take sulfa-based meds again.

    So it might be an idea to talk to your Rheumy, just thinking if you tolerated a higher dose MTX when you were younger & having problems now since SSZ has been added it might be worth looking at both. There are other DMARDs she can prescribe if it's found either/or are the reason for your poor tum reacting as it is.

    I'm guessing you're not in the UK? Here we're prescribed 5mg folic acid, if I'm assuming correctly you're probably only prescribed 1mg? Sometimes in special cases I believe in the US folinic acid can be prescribed to ease the symptoms MTX can cause due to being a folate antagonist, it depletes the little folate we store, something else you may wish to discuss with your Rheumy. Also eating foods high in folate may help, I see you eat spinach but there are others you could introduce to see if they help, avocado, citrus fruits, broccoli, there are more if you search online. You seem to have quite a good diet otherwise & I thoroughly approve of anyone eating chocolate! It might be a consideration if you've not been seen by anyone to see if you're intolerant to some food groups too.

    Is she aware you're drinking Macha green tea? Even if something's been recommended by a friend it may not necessarily be helpful for you so we always recommend you discuss anything like this, any supplements & vitamins you're considering taking too. Some consider green tea can have benefits as it's high in polyphenols, a natural anti inflammatory but it can also cause problems for the immune system. Matcha is highly concentrated & you're drinking a lot of it, that's my concern. If normal green tea can cause problems what can a highly concentrated form do? So do please talk to your Rheumy about it, see what she thinks. Meantime this might be interesting reading

    I do hope you can get to the bottom of your problems, you do seem to have a lot going on & it must be very difficult to concentrate on school work not only having JIA but feeling as you do the majority of the time.

    Do keep in touch. If there's anything we can help you with we will where we can. As well as the original NRAS website there's also a JIA dedicated NRAS website, it may be helpful to have a read through them sometime 🙂

  • I have been on the selfazalazine since I was first diagnosed never taken off that and the only side affect I have noticed was when I first started and had orange pee for about a week.

  • Well I guess it's not that then. Does anything else I mentioned ring any bells at all?

  • Cut me off silly phone. I do take 5mg of folic acid, for mouth sores more then anything else. I am drinking a bunch but very watered down, it says 1/2 tsp to 1/2 cup water, I am adding like 11/2 cups water, 1/2 cup milk and a tsp of sugar. I would love to talk with her but sadly being in a really small town she is the only one, and she is away.

  • How often do you take the folic acid? There's no hard & fast rule for how many days it's taken but many of us are prescribed 6 a week, just not MTX day. What you need to bear in mind is that one cup of Matcha is equivalent to 3 cups of normal green tea. Another link! The lead issue is a concern if your symptoms have been worse since you started drinking it & your brand isn't of the type recommended. Maybe rather than drinking so much green tea you could replace it with water, it's always a good idea to keep well hydrated with water when on MTX, it helps a lot.

  • I take Folic Acid 6 days a week. I actually started the green tea because of the symptoms so I started it two weeks ago. I have to be carefulwith water as I am allergic to Chlorine and the water where I live is chlorinated and filters do not help it. I can wash with water just fine but if I drink it straight I get nauseous.

  • Then I'd try adding extra folic acid through diet, I do & I'm sure it helps. Are you alright with bottled water? Here in the UK, in my area anyway, the tap water is highly chlorinated so I'll only drink bottled. I got used to buying it in bulk anyway because when I lived in Spain the water changed with the seasons so it wasn't reliable. I'd try stopping the Matcha, see if your symptoms ease & if not ask you primary if he or she thinks you should try an antiemetic again, at least until you can see your Rheumy. What sort of water are you making it with, could that be causal? Also I found eating a more bland diet the day before, the day you take MTX & the day after helped somewhat. I do think though as soon as you can, after she returns off holiday, you make an appointment to see your Rheumy to discuss your meds, see if she thinks what your experiencing is acceptable.

  • We have an earth filter and then let it stand for 48 hour but it only does up to 2 liters. Also boiling it for 10 minutes before use just to be sure.

  • I can try and get an appointment but she books them months in advance.

  • Do try, I'm concerned for you. Nobody should need to go through what you're experiencing, there are other meds your Rheumy can prescribe if your symptoms can't be eased or even solved. Also, the water situation, if you're only drinking what amounts to a litre a day (assuming there's only you drinking what's filtered every 48 hrs) that's really not much. As I mentioned previously with MTX it's best to keep well hydrated & you don't appear to be drinking enough really.

    I hope she can fit you in soon after her return from holiday. Take care.

  • If you leave the filtered water to stand for a while the chlorine will evaporate!

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