Methotrexate concerns

Treatment and medication
1

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.

2

Susan

I was so pleased to see your note! This drug also made me feel awful, and my doctors tried to talk me out of giving it up. I thought I was the only one who had had these problems, and the doctors didn't want to know about side effects my hair fell out, I caught every germ going, I had ulcers in my mouth and was washed out and foggy all the time. My arthritis got better when I first took it, but got worse again after a few months. I am back on a higher dose of flamrase now and feeling much better in myself for giving methotrexate up.

3

Im on 20mg and it made me lots better though I feel after a year that the effect is tailing off ever so slightly!

I can still do my work(Firefighter) and go to the gym/play sports, the only effect I get is sore ankles.

4

Blimey! A firefighter with arthritis! Mick, I would like to know which sort of Arhritis you have, the reason you were prescribed Methotrexate, and how it compares to what you were taking before. I am now on 15mg. I like to visit the gym to keep fit, but I find it saps my energy, and exercise is a real struggle. I'm 39. Maybe you are younger?

5

I was diagnosed with Psoriatic Arthirits in April this year (2008). I have had the symptoms for 2 years, but it has took doctors and rhuematologists this long to make a diagnosis. My rhuematologist has put me on methotrexate as a long-term solution for my Psoriasis and Arthritis. At the moment I am taking 12.5mg but as form next week on I will be taking 15mg/week. I find it scary that methotrexate could bring on early menopause. I am only 28years old, in a steady relationship with plans to get married and have children within the next 3-4 years. It is interesting that you say the treatment made you feel dull and depressed. I am struggling to come to terms with my condition and the treatment, and I feel down in the dumps all the time and very angry for very little or no reason. I am also very oversensitive and hang on to any hurful comments people make about my condition. I will be seeing my Rheumatologist in a few weeks time, do you think it would be a good idea to ask him about alternative treatments? Sometimes I feel I could scream! Is this normal???

6

Holly08

I am still very glad that I came off of the Methotrexate. I still feel better than I did when I was taking it. I was warned that my joints might deteriorate without it, and I was very worried, but a recent set of X-rays showed no damage.

I wish I could reassure you about premature menopause etc. I had no problems, but it is very clear that others have. You may already know that Methotrexate is used by the NHS for abortions. You are obviously a sensible and articulate person. Please DO tell your rheumatologist/nurse specialist about your concerns, and properly discuss alternatives.

Methotrexate did affect my mental state, and I see that this seems to be reported on sites like this quite often.

One final comment. My online reseach has shown that some folks with Psoriasis (an autoimmune disorder) also have underactive thyroid glands and low thyroxine (hypothyroidism) because their immune system attacks the thyroid. Low thyroxine causes joint pain, tiredness, low mood & depression etc. -I used to get angry when the traffic lights turned red as I approached, or if the trolley of another supermarket shopper was between me and the shelf I wanted to get to. -Sound familiar? Ask your GP or whoever for a thyroid function test. You are probably ok, but it's worth checking... Please report back here -I'm very interested in this.

And yes, you are normal :-) . You have a worrying condition, have been prescribed a worrying medication, and have some worrying decisions to make.

My heartfelt good wishes for the future and a through-the-internet hug.

Sue

7

i have just been prescribed methotrexate by injection for rhumatoid arthritus buy i also have a underactive thyroid i suffer with depression mood swings i feel that i had no option but to go on methotrexate as i was not offered any other medecation this will be my forth week i have not had any side effects as yet but i am worried about my future on this drug i am 56

8

I too was given methotrexate for Psoriatic Arthritis and stuck it out for 13 weeks, during that time, I felt really down, which is not me, legs were like lead, and have not been right since, nearly two years, my hair growth doubled and I was'nt me. After telling all this to the Rheumatologist, she increased the folic acid. I stopped taking methotrexate then. Since then I have tried Sulphasalazine and Leflunomide, without success, both made made my hands swell up. They are still trying to get me to take Methotrexate and I keep refusing, I am also not in their good books!

9

I am too use methotrexate for ankylosing spondylitis and using this since 9 years.i am now 29 years old.i am also trying to leave this tablets but my rheumatalogist not allow me. now i got soo many problems.i got depressed,short temper i have no patience for any thing.thyroid problem, weight gained.both of my sacroilliac joints are replaced before 6 years.i was doing everything with full of my heart.But now sometimei feel i am 50 years old. i m tired of taking these tablet.anyone tell me alternate of this tablet????????

10

I have been taking MTX and prescription folic acid for well over a year, on a gradually escalating dosage. I am now at 25 mg./week and I can say that if I wasn't taking it, I wouldn't be able to get out of bed or lead any kind of normal life. Yes there are some side effects to taking this drug. However, for me, the drug has helped me so much that I don't mind the mild nausea, hair loss, upset stomach, fatigue, and sore mouth, because all of those things are less debilitating than RA. The other factor that has made a big difference is the climate. When in a very warm area (Arizona and Florida) my arthritis symptoms improve drastically. When I return to the cold of the north, all my symptoms get worse. I feel so sorry for those who cannot get the good results from MTX. It is very cost effective and works on reducing the pain and disability of RA (for me).

11

I have recently been diagnosed with rheumatoid arthritis, I am only 18 years old and it come as a massive

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

12

Hi, Naomi.

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

13

My 14 year old son has been recently put on MTX for severe atopic eczema. He had been on

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

14

I have been diagnosed with Rheumatoid Arthritis at the age of 35 and it has been almost a year I have been on medications. I have changed from MTX tablets to MTX injection, which made a huge difference to me and hardly get nausea and vomitting but I am getting other mild side effects but overall coming slowly by changing by diet (what I mean by this is to cut out junk foods, I have dark chocolate once in a while and cake on a special occasions smile and eat the good foods will make a difference too - I had to do my own research for this). I am surprised to hear few of you above have hair loss!!! sad My only concern is now that its impacting my chest/heart and I get pains after I taken the injection as I do have a heart condition. Has anyone experience this? and if so, what action has been taken? I'll be coming off MTX by the end of the year as the doses has been reduced recently.

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!

15

Max's MTX treatment has been prescribed by his consultant dermatologist. Frankly the GP's are not very helpful as they don't seem to have the depth of knowledge required to give us the right advice. On several

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?

16

Hi Heidi.....

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.

17

Hi

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 smile

18

I am a 65 yr old woman diagnosed with RA in 2005 taking only Sulfasalazine.Since moving out West my new Dr prescribed MX 12.5mg last week after Xrays showed damage in my right ankle (that never really bothers me,only my fingers).I hate to be a whiner cause I know there are a lot of you that suffer more than I do I've just had concerns with my sore throat,nausea, and blurred vision.I already want to stop taking it after 1 week but guess I'll try and stick it out for 4 more weeks

19

My daughter was diagnosed with JRA at 1 years old. She did steroid injections for roughly 9 months or so until they stopped working well enough. The doctors put her on Methotrexate then and she's been on it since. She is going on 7 years old now.

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

20

Hi Taleena-

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