Hi all never done anything like this before but need some support. My 14 year old daughter has been diagnosed with juvenile RA she takes 20ml methotrexate injections once a week
I give it at night to help with nausea but she gets chest pains and breathless when walking and sometimes just sitting on the sofa.. The nurses at the hospital say it sounds like indigestion perhaps as she takes naxproxen as well. But i made the mistake of googling and there's all sorts about lungs!! Anyone have any similar symptoms? Thanks in advance. I may just be an over anxious mum!!
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rachaelsmum
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Couple of things. Have they checked her out? ECG or anything? Also has she had any chest X-rays ? Does she have asthma? If so is it well controlled? Maybe worth asking them. I do get heavy chest pains and with me it's the inflamed muscles beside the chest bone.
Is she on a tummy protector like Lansoprazole, I have been better for taking that, talk to GP.
But don't just accept it 14 yr old dont say they have chest pain so best to keep at them!! Over anxious mum, nope, a really good one and this site is good for everyone people with RA and their friends and family xx
Thank you so much for your reply. Shes only been on the methotrexate for 9 weeks. She doest have asthma and its not in the family. No ecg but she was so bad on the way home from school last week she said she nearly called an ambulance! Iv been told to buy gaviscon so next time she gets the pain we will try that, if only to eliminate indigestion. In the meantime I tried to call her consultant but I have trouble getting past the secretary! Thanks again. I will make an appointment with the dr.
As a mum with RA, in addition to other health issues, it is devastating to hear when children are diagnosed, I know as her mum you would do anything to take away her pain. pre mtx commencement she should have had a chest scan - if not you need to be asking why? It could be anxiety causing the pain or it could be plural problems which is a result of the mtx. Don't mess about, if you're not happy take her and insist on an xray, rather be written off as an over anxious mum than miss the possibility of problems. You'll learn you have to be pushy to be heard and sometimes you'll be thankful you have been. Best of luck to you and all the wishes in the world from one mum to another. x
Best thing is to see a doctor. You shouldn't just ignore "indigestion" either - if that is the problem she needs to have a doctor assess whether she needs additional treatment, as long term, it could cause her more problems that she really doesn't need - including the possibility of reflux irritating her oesophagus. Also, the breathlessness shouldn't be ignored. If you don't feel that the GP or the rheumatologist are dealing with it properly, ask for her to be seen by a general paediatric consultant and get checked out, or even get her to a childrens hospital emergency clinic if you don't feel happy. Trust your gut instinct, but don't google too much - there are far too many things that might sound like possibilities to you, but a doctor wouldn't even consider when they look at the rest of the picture with their medical understanding.
Thank you you have both confirmed my gut instinct butI was worried I was getting paraniod about things. I will speak to her consultant next week and ask for a chest x ray. She did have an mri but I think they only focused on her knees and ankles which showed erosion to her bones already I really hope the methotrexate works
It feels so wrong as a mum to be putting this harsh drug into her. It seems she is very tired and also a little aggresive since taking it but that may just be teenage angst hormone s and dealing with her situation. The school are being understanding but I dont think they realise the impact on everyday life. Ps she takes 5mg of folic acid 2 days after the injection and also suffers mouth ulsers any advise greatfully received x
I really feel for you .... & obviously your daughter. I'm in no position to advise as I know too little about JRA though do feel it could be the MTX which makes your daughter act a little differently I know it did me & add teenage angst into the mix & she'll most likely be feeling rubbish. Encourage her, if she's willing, to talk through her feelings with you or your partner or even sibling, it may help. I don't know if this will help as not sure if it's recommended at her age but some of us who are on MTX take more folic acid than she takes. It could be that her Rheumy considers this enough for her & following guidelines for JRA I know nothing about, but I inject 15mg MTX weekly & take 5mg folic acid daily except MTX day & my side effects are far fewer. My niece was diagnosed with JRA just before her teens & her school allowed her to use laptops for her coursework as she had problems holding pens & keeping up taking notes. Fortunately she went into remission but now in her late twenties is now showing signs of RA (or RD as some of us prefer to call it). Another thing just occured to me, I don't know if it's protocol in her case but I also take alendronic acid once a week & a calcium supplement daily to protect bone density in the future as I'm osteopenic borderline osteoporotic. Maybe it would be worth asking her Rheumy if this would be advisable to protect her bones as she's showing erosions at such a young age?
I am surprised though she didn't have a chest xray prior to starting MTX as I thought that this was the norm. I was diagnosed abroad & had one initially to check there were no underlying issues & when I returned to the UK my new Rheumy ordered her own set, to see if there were any reasons for her not to re-start my existing meds. I also take an NSAID & take a ppi (20mg omeprazole) to protect my tum.
I hope you get the answers you need when you speak to her consultant & let us know how you get on.
Just another little thing. I totally understand how you feel administering her MTX & you thinking of it as a poison & to those who don't need it it is but I think of it as my antedote & it means my disease is better controlled. I think I speak for all of us when I say if we could be well managed on less strong drugs we'd be happier but it must be a really difficult being her mum & administering it, must be awful for you. Maybe trying to think of it as I do would help as it can be a very effective drug for many, as I have found.
Thanks so much im going to get her folic acid checked out too as well as something to protect her tummy. Its all so much to take in but I will do everything and anything I can. Thanks again.
It's the same for all of us who have this disease in the early stages. Even more so with it being your daughter & seeing how it's affecting her at such a young age when she should be enjoying being her age before all the responsibilities life throws at us but you're obviously a caring & worried mum & coming on here you can be assured of support & any help or advice we can offer you. x
I had a problem taking methotrexate, same problems as your daughter. After 7 weeks I had to stop them. That drug clearly did not agree with me. Check with your doctor or get in touch with your rheumy team, don't delay. There are other treatments that will work, it just takes trial & error for some of us. Others are luckier, and I hope you get the right result quickly for her.
I have just been through all this chest pain bit. I have RA started getting chest pains, went yo see GP, WHO WAS VERY GOOD. referred to cardiology unit ,anyway yo cut a long story short they thought I had angina, I had an angiogram and MRI scan, they all showed no problems. At the end I was diagnosed with costichondritis which is the RA causing the tissues connecting the ribs to sternum to become inflamed giving similar to heart pains
Hello, you could also call the hospital switchboard and ask to speak to the on-call rheumatologist, I have done that before. I have also called the rheumatologist's secretary and she got the rheumy to call me back. I had a similar situation with methotrexate and was only on it for just over 2 months. I had chest pain and breathlessness all the time which was scary and ended up going to A&E. I had more than one chest infection while on MTX which made me feel breathless, they were picked up by two x-rays. Apart from not tolerating MTX, it turned out I had asthma, costochondritis (inflammation of the cartilage that attaches the ribs to the breastbone) and bronchiectasis (a lung condition which involves coughing up phlegm as well as feeling breathless). Agree with others about having relevant tests, definitely get chest pain & breathlessness checked out. I would also mention the mouth ulcers to the rheumatologist if you haven't already. If she has to come off the MTX there are other options. Keep pushing for answers and good luck.
Hi, I've been away from this site for a long time. After coming back I checked postings about chest pains and this one has helped me a lot. I hope to get a GP appt.tomorrow to double check my symptoms, as after an ECG, my heart has checked out okay, but maybe I have the inflammation and bronchiectasis as mentioned above - I have been very worried that its something more serious (RA is serious enough). The pain is like a stabbing pain on one side of my chest when I breath in and then it travels across the whole chest and I get some breathlessness. Weirdly, when I bend over everything above my ribs hurts! Very strange. I am on MTX and recently on Hydroxychloroquine as well and have had this chest trouble on and off for several months.
Thanks for all this info. as it may confirm my thoughts that its all RA related.
I hope anyone else suffering from this can get some relief - I find Naproxen, paracetemol and a heated pad on my chest has helped.
Will come back to this website to let you know what the GP says.
it must be so worrying for you as a Mum coping with this. There are a couple of organisations that deal with young people and arthritis. The Children's Chronic Arthritis Association:
Hello, I feel so much for you and your situation. This site is amazing and the NRAS team are brilliant. Thank goodness the charity was started and can offer so much support and information to people. My heart goes out to your daughter and to you as a Mum dealing with this horrible disease. These are some ideas for coping: It goes against are instincts as mothers to give a drug to our child that potentially may control RA but can also cause horrible side effects. this is the first drug your daughter has tried and it may be that it just doesn't agree with her. Nobody knows until we try each drug how are body is going to tolerate it. There has to be a balance, if the side effects can be tolerated and the drug is helping the RA then good, the drug might work for RA but the side effects are intolerable. As people have said unfortunately on top of everything you may have to fight to be heard through all this. As a Dr said to me recently, the drugs are given to us but we have to live with the consequences of how our bodies react to them. Thankfully many people can tolerate the drugs and the RA is helped quickly, but sometimes it takes time to find the right combination. Keep on at the Drs until you get the right answers it is your daughters life, keep on fighting for her. You are not over anxious just 'normal'. It is huge to be diagnosed with RA
your daughter is dealing with the roller coaster that physically, mentally, emotionally, spiritually that brings and so are YOU and your family. Speak to the volunteers at NRAS for support they have lots of information leaflets that can be useful for every aspect of living with RA. Maybe there is a support group in your area, sometimes having a person to talk to who is in your situation can help, and someone of your daughters age with RA as well. When you are living with a chronic illness it is hard to balance what is your everyday reality with the reality of peoples lives going on around you. understanding is the key and I think maybe having a chat to your daughters teacher is a step. give them information of what RA really is. I think the name should be changed to Rheumatoid auto immune disease so it is not confused with 'just arthritis' as some think. Remember to take things a step at a time sometimes a moment at a time, be kind to yourself, sometimes loads of information can be overwhelming in itself. I read recently that within the next 10 years Drs our hoping to find treatments that will be suited to each individuals genetic makeup. Never give up hope, and keep fighting. Best wishes May wing
I cant thank you all enough for all your advise and support. After being told it was indigestion by the rhumy nurse on friday and getting advise from you all, I decided to call the doctor this am. But was suprised fo get a call first thing from the nurse I spoke to friday. She was following up my call and advised me to call the doctor to get a checkup. I called the doctor made an appointment and my daughter waz diagnosed with costochondritis possibly bought on by stress. She was given ibuprofen. She should be taking naproxen twice a day but they make her feel spaced out. The dr said its definitely not the mtx. We are due to see the consultant july so will ask about a chest x ray and the mouth ulsers then. Thanks again everyone
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