Methotrexate concerns
Posted , 53 users are following.
Methotrexate is a potent drug with many side effects. Even those on low doses normally report adverse reactions, often very unpleasant and adding to their other health problems rather than clearing them up.
I was prescribed it, and stuck it out for a year before deciding that it was doing me more harm than good. It did little to reduce the symptoms of my psoriatic arthritis, but made me feel dull and depressed, gave me digestive problems and diarrhoea, made my hair fall out and I had constant flu-like problems. All of this cleared up when i stopped taking it agaist the advice of doctors.
These doctors looked on me as a stupid woman for listening to my body and not to their text-book 'wisdom'. Unfortunately they seem have a lot less respect for me now.
I understand that not too long ago Methotrexate was a drug of 'last resort' if less powerful drugs did not work. Now it is described as the 'gold standard' and given as an early precaution in case arthritis progresses to cause damage to joints. This seems like giving morphine for a headache in case it progresses to migraine -execept that morphine has fewer side effects.
To those of you taking the drug, or under pressure to do so. Keep a diary of benefits/side effects and consider whether Methotrexate is helping or hindering you.
14 likes, 74 replies
sadaf786
Posted
patricia240
Posted
Naomi944
Posted
shock to me as I had no idea I could have it.
I have just been given methotraxate to help with my RA, I am very concerned with taking this, I have been
put on 15mgs, and already in the first 2 weeks I have been throwing up all day every day, I was warned that I
could get a sick feeling with them but was not warned about actually being sick, and i certainly wasn't told it would be like this. I am already on sulfasalazine to help with it and have been on this for the last 2 months
and it has not helped hence why they added in methotraxate.
My main concerns are that on the leaflet there is a big list of things i cannot do such as go out and have a
couple of drinks - I am not a big drinker any way and hardly go out but my problem is I no longer have the
choice to. Another thing is the side effects that come with them, my question is, are they really worth it,
would they cause more side effects than benefits, and would anyone really recommend this to an 18
year old or should I hold off this medication until im older?
Thank you, Naomi x
patricia240
Posted
I gave up alcohol completely at first. Now I occasionally (like once every 3 months) have a glass of wine or a beer. The problem with using alcohol while taking MTX is that the alcohol negates the effectiveness of the MTX, thus prolonging your suffering. Also, my Rheumatologist put me on prescription folic acid to help alleviate side effects and I think it helped a lot. Your doctor can give you medicine for the nausea. My nausea got better the longer I took the MTX. Also, drinking lots of water and other liquids helped to abate the nausea.
Just keep in mind that the good results from MTX won't appear for a few months. I started out on 10 mg. a week and gradually it was raised to 25 mg. a week (which is the highest oral dose my doctor will give me). However, I am having pretty good results with it. I have occasional nausea, dry mouth, sore mouth and throat, and I've lost quite a bit of hair. BUT, I feel so much better now than I did before that it is worth it to me. I do have ongoing disease and I have flare ups every month or so, but they are much more manageable now.
As far as taking the drug at 18 years old---it is important to prevent damage to your joints from the disease, and the sooner you start prevention, the better you will feel and the more mobile you will remain. You might want to discuss with your doctor the possibility of going on the MTX injections which, I understand, does not cause the nausea as much as the oral dosage does.
I know this is a scary disease and can be intimidating, but there is a whole world of RA sufferers out there who are praying for you and available to talk to anytime you need us. Take care and good luck.
Patricia
heidi1719
Posted
CLICLOSPORIN for 14 months, but was maxed out on it. Unfortunately 4 weeks into MTX treatment he is
already showing liver function stress and lymphocyte issues. He is currently only taking 10mg per week and
has had to revert back to weekly blood tests. Honestly I am unsure what we do next, or if there is anyone else out there whose children has been prescribed similar treatment for eczema. Frankly I'm finding it all a bit
scary at the moment.
Heidi
Oxygen1 heidi1719
Posted
A couple of things you should check into and be aware of. A common problem with sevre atopic eczema is a strong allergy to molds, like Aspergillus. These molds are hard to avoid because they are everywhere. You can often tell if someone has this allergie, if your son's eczema worsens in April and really gets bad in June, July and August.
Also, you may want to get his IgE tested. Many people who are diagnosed with severe atopic eczema (myself included, dealing with this for 45 years) actually have Job's Syndrome or Hyper IgE Syndrome. The importance in knowing this, is the treatment plan. Those with Job's Syndrome have difficulties fighting infection and therefore need a different course of treatment.
If his ears are often full and it seems as though he gets ear infections (swimmers ear), ask the doctor to swab his ears for candida. Doctors often think it's dried skin in the ear canel, but it's actually candida, this is very easy to treat.
Good luck with your son. I wish you both the best health!
Oxygen1
shorty07
Posted
Naomi, it might be worth having folic acid.....this tablets suppose to help you overcome nausea if you are taking MTX. If you are taking MTX tablets, it might be worth asking them to give you injection instead as you made the effort to take MTX tablets. It sound like you only recently started taking meds so it will take times for the MTX to settled in too. I was put on MTX as it seems to be the best med to take for RA, maybe worth taking it for at least year until your RA is under control then switch to different med that has less side effect. Do a diary as it will helps you to identify your bad and good days and its really up to you to change the foods and your lifestyle (that what they told me and yet, I had to do my own research on this). I hardly went out for 4-6 months until my condition was under control and I do my low impact exercise, yes it was depressing at first and so forth but I learnt to change things so now and then, I do go out now so I am not sure what they have told you but its depend how bad your RA condition is and only you know it but from time to time, you will get your bad days! You are young so my advise is to focus getting your health under control then things will be easier once you know what's improved and what's not.
Heidi, one of my mate has the same condition but not taking MTX. My friend went to see a private consultant as the condition getting worse so maybe it might be worth going back to your GP to refer your son to specialist. You mentioned that your son has liver function stress sound like inflammation when taking MTX, which I have experience. For me, my liver couldn't dealt with 15mg and went back to 12.5mg and now it has been reduced further. This should be escalated to GP asap!
heidi1719
Posted
Occasions they have given the wrong procedures! incorrect antibiotics, not given anti viral meds, advised
against steroids when max has had mild anaphylaxis reactions to other allergens. He seems to have settled
now and his bloods have been stable for 3 weeks. However he is low in mood, extremely tired, not sleeping
well and has a persistent sore throat. How much of these 'side effects' are to do with being a teenager I have no idea! Us there anyone else out there taking MTX as a child for eczema?
shorty07
Posted
My apologises. I understand....I have been misdiagnosed by my GP too! If he blood test result showed he's now stable with MTX 10mg then that's good sign then it might take a while to get used to meds and hopefully slowly show some improvement!
check this website out....it give you more info and they may give you a better feedback....
http://www.inspire.com/groups/national-eczema-association/discussion/anyone-with-child-on-methotrexate-for-eczema/
http://www.bad.org.uk/site/844/Default.aspx
MTX have been treated for various condition and it has various side effects mainly liver and heart so it should be carefully monitored via blood tests (that's how I found out my liver inflammation as I had several pains and they reduced the doses).
His consultant should give you info about what side effect it can cause and it depend how individual reaction to the med - to be honest. I experience most of them.... vomiting, tiredness, nausea, stomach ache, dirreahoa and so forth - I was sleeping a lot...now I overcome them because mostly I changed to good eating habits!
When he does settled with the meds, start looking into getting him eating good fruits will helps too and drink plenty of water!
I can speak to my friend about the condition and get some guidance/info and get back to you if you like? Up to you.
Good luck.
fleurfae18
Posted
i Have decided to post this information in the hope that someone would be able to relate,
I am 16 years old and have juvenile idiopathic rheumatoid arthritis. I was first diagnosed with this condition at the age of 2. Since around 8 years of age i have been on methotrexate and take folic acid daily. It is only recently that i have made the swap from oral to injections. Taking the oral tablets made me feel nauseous for around 8 hours. I have trouble even viewing the medication because i instantly start to feel sick. Also my slight bulimic habits prompted me to make the swap, as i understand not only is the medication worthless if it is regurgitated only hours after consumption but it wasn't doing my esophagus any favors. I inject myself with 25m/g weekly but am still finding it an overwhelming experience. I am embarrassed by the weekenss i feel after every injection. i feel like i could just break down and start sobbing. Having been on methortrexate for most of my life i find it difficult to differentiate between whats normal and what's not. Saying that though if a miss a week of medication i notice a large spike in joint pain. However, with my fragile mood i wonder if the medication i am on is effecting my fragile mood. I have also started a course of oral steriods for my back.
Thanks
becky45918 fleurfae18
Posted
I'm 17 years old and I was diagnosed with juvenile idiopathic rheumatoid arthritis when I was 3. I started methotrexate when I was 11 but found the injections too stressful and the tablets always made me sick, so I took myself off of both of these. Since then I've been on twice weekly injections of Enbrel which I have learnt to do myself (I use a pen rather than having to push the syringe - really recommend.) When my arthritis came back 4 months ago full force I was put onto twice weekly injections of Enbrel AND one injection of methotrexate, apparently this is a really good way to fight it. Unfortunately the pen form of methotrexate isn't out yet (but my drs. say it will be soon) so my mum has to inject me with the MTX. I have literally had such an awful needle phobia since my first experience with MTX (so I know what you mean by overwhelming) and I have to use some numbing cream on my injection site which I leave for 2 hours prior to the injections, I can barely feel the needle.
Also regarding your mood, I was diagnosed with depression 2 years ago, talking therapy sorted me out but I think it all stemmed from the fact that I'd had arthritis from such a young age and I was never going to be "normal". I'm currently conducting a study about the psychological effects of arthritis for an EPQ - the psychological side of the disease really interests me, I'd ask your dr whether they think that the MTX could be affecting your mood.
I'd really recommend 1) inquiring about numbing cream (if you dont already use it) because now I can inject myself without a problem whereas before I'd have to travel 40 mins to the nearest hospital and spend about an hour trying to calm myself down enough for someone else to inject me and 2) see if your drs know when the methotrexate pen is coming available to you (mine say it'll be in the next few months) because that'll really help - I honestly can't recommend it enough.
If you want to talk to me about anything we could swap emails, just an idea
- Becky
brenda05405
Posted
Taleena
Posted
I'm concerned. She's been struggling since about the age of 3 with behavior issues. She was on ADHD medications because they thought that was the issues with her behavior. We took her off of ALL those types of medications, and even took her off of the methotrexate injections for about 5 months. Her psychiatrist put her on Bupropion, for Mood Disorder NOS. For those 5 months, life was great. We had our happy little girl back, minimal fits (more like just typical 6 year old fits) she was getting a long great with her siblings, you were able to have an actual conversation with her and she could be as rational as a 6 year old could be when it comes to not getting their way. She was still spastic, unable to sit still and pay attention to school work, but we chose to NOT put her on any other ADHD meds, since they were making her resting heart rate WAY too high, or making her sleep all the time, and extremely moody and aggressive. As well as making her not eat, even being on Cypro to increase her appetite. She's only 45 inches tall and it's taken us years to get her to 35lbs.
She's been back on the Methotrexate for 3 weeks now. And we're heading right back where we use to. Moodiness, even with staying on the Bupropion. Not eating again. Aggressiveness towards her baby sister. And the sensory issues are coming back full force. That was a major cause for grief in the house, was the sensory and the aggression. She gets into crying/screaming fits about wearing certain clothes, since they bother her. She refuses to wear socks, until the past year, we thought about cutting the toes out of the socks, and that seemed to work, somedays. Since being back on the shots, we're having issues with getting those to stay on. We started doing aggressive therapy as well, keeping a full pair of socks on starting 1 min, next day 2 mins, and so on. Shoes bother her, has 1 pair that she'll wear without a fit, most days.
She's on weekly injections of only .3mls. I guess what I'm asking is have any of you guys, or any of you with small children who have been on this medication for a short time or as long as she has, had any of these issues? Can all these side effects be linked with the methotrexate? Doctor keeps telling us that methotrexate is the easiest tolerated by children, and that it's a very rare possibility that it can effect moods/behavior like this. I am really seriously doubting this. They say we can switch to Embral or Humira or Orencia. After looking at the long list of side effects with that, and the higher risk of kids getting forms of cancer, I'm at a loss at what I should do.
Any info will help, please.
Thanks
linda08736 Taleena
Posted
My son, who is 9 was taking Methotrexate injections for JRA for less than a year before we made the decision to stop. He went from a happy go lucky kid, to depressed, along with developing symptoms of anorexia, counting calories, refusing to eat, distorted body image despite losing 13 pounds in 4 months. Although the methotrexate seemed to be helping his symptoms, his behavior had changed so drastically i had to stop. His Rheumatologist said these are not side efftects of Methotrexate, but the timing of the change in his behavior was too coincidental for me to ignore. He has been off methotrexate for for about 8 weeks now and seems to be improving slowly but surely. This may sound crazy to some, and not sure if this is the answer but i am having an extensive nutirional work up done on him. This may be something that you want to check into- levels of B12, folate, zinc and testing for MTFHR gene. As you may know methotrexate can inhibit your body from processing folate. If you look into these deficiencies you will find that these deficincies are often times misdiagnosed. I know how painful watching your child go through this, and only offering a suggestion. Best of luck to you
cB23355 linda08736
Posted
I have a 9 year old girl with JIA, she was misdiagnosed for 2 years, so we recently found out. We started with cortisone injections because her ankles were the worst, I never thought I would agree to putting her on methotrexate, but we agreed to try it. She started in August, and the very first week we were at a friend's house and she started screaming her head hurt she was completely out of control. She was diagnosed with a sinus infection. So we kept
Taking it, theee months inno change in her arthritis that's measurable but she has missed 10 or more days of school she can't concentrate on her studying, most recently
I had to take her to the ER for an MRI because she was screaming her head hurt so badly I thought she had a brain tumor. The amount of pain this has caused us far outweighs a little arthritis pain, which she still has by the way. She looks terrible, I believe I'm going to stop giving it to her and take chances, or perhaps only do it during summer, but life has been unbearable for me and my whole
Family. My sweet responsible 9 year old has completely changed it's like she is a different person it makes me so sad