Hi-I am new to the whole message board thing, but I have a 6 yr old with JRA and she is about to start mtx. She has had JRA for about 2 yrs, it seemed to be responding to Naprosyn, but this year more joints became inflamed, especially her right thumb. She is to start mtx tonight and I am nervous about side effects. Also, she seems to be doing a bit better the last couple of days, not quite as much swelling and/or pain...I have been arguing with myself whether the new drug is necessary. Any advice? Thanks...I would say yes. You want to ensure that down the road she won't have
problems. Naprosyn is not going to stop disease progression but the Mtx
will.
Having a small child myself, I can't imagine how concerned you must be.
Mtx has been used for a number of years. As far as RA drugs go it is one
of the most common ones used. I tend to get a bit of an upset stomach
and fatigue when I take it. That is why I take it at night and usually by
morning I have slept through the side effects.
There are a number of members here that have had JRA since they were
toddlers. Many of them were diagnosed before MTX was commonly used
so they will have better advice for you then myself.
Give your little one a gentle hug from us..
BeckyDear cj: Welcome! to the board. Yes, it does sound like a good plan for her to get started on the mtx. I've taken it for years and except for feeling fatigued I haven't had bad side effects. Others will write you, I'm sure, as I've not had any experience with JRA. YOU mothers are so brave with your children with this disease. My son had milk allergies and suffered for years with ear aches until he received allergy shots (it was a hard decision to make as he was also 6 years old), but I went with it and I think I made the right decision. Take care, and lots of luck sorting out the meds for her. LyndaThank you for your replies-It is easy to feel like you are all alone in this, most parents of her school friends just can't understand, the doctors are so clinical, and the drugs seem so scary. I keep thinking it will just go away...but it hasn't. Here goes...I hope she does ok!
Methotrexate has been a good drug for me. I have been on it for almost two years and have only had to increase it once ( and that was after I had stayed off of it for several weeks due to bronchitis). I feel pretty much normal and don't have any bad days anymore. The horrible stiffness I had is gone. The only time I hurt is when I overdo and my damaged joints let me know it. I have had very little side effects - sometimes a headache several days after. I have also been able to return to work full-time.
I hope your daughter will continue to feel better.
I have the adult version of systemic onset JRA (adult onset Still's disease) and want to tell you if your little one had to get the disease, this is about the best time in history to have it. (not that there's "really" a good time, for there's nothing good about the disease) What I mean is that there are more options open to your daughter now than at any other time in history.
A couple of questions: 1) Are you taking your daughter to a pediatric rheumatologist? If not, she should be seen by one (or at least a rheumatologist. Do not allow a family physician or a pediatrician to treat this disease, even if it means you have to travel to see a specialist.
I am a little surprised that before jumping to methotrexate, that her doctor hasn't suggested sulfasalizine or plaquinil. It may be that he/she believes that hitting the disease hard is the best approach, and that is okay, but you should be clear on the reasoning.
2. If the doctor seems cold and clinical, is there someone else you can see? Or are you being pushy enough? Before you go to the doctor, jot down questions, and don't leave the office before they are all answered. If you don't understand something, be sure to ask for clarification. Doctors aren't gods. They are mortal beings, just like you and I, and it is okay to question them on their drug protocols. If you are not comfortable with a doctor, fire him!
3. Are you getting copies of all your child's medical records? All the laboratory tests? If not, you should. If you don't understand the readings, you can check with http://www.labtestsonline.com
4. Are you being agressive enough? You must be to secure the best possible health care for your child. That means doing research, asking questions and being an active participant in your child's health care.
Your friends and family will probably not understand what you're going through, for the term "arthritis" has been bandied about so loosely and portrayed on tv as something that can be fixed with an asprin or a tylenol. JRA is a disease that needs a specialist in the field and a clear plan. There are "good" days and "bad" days. Bad times, called flares, are very fatiguing and can be very painful. "Good days" are days that you can get out of bed and do limited things. One with inflammatory arthritis must learn to pace oneself so not to "over-do" and work oneself right back into a flare. Many of us use the term "you have to pay for play" for if we overdo, we end up paying the piper the next day.
Question, question, question and learn all you can about your daughter's disease. It is an obligation and the best gift you can give.
If your doctor has prescribed methotrexate, did he also prescribe prescription strenght folic acid to go along with it? The two must be taken in concert to prevent painful mouth blisters and other side effects. Many people choose to take methotrexate on Friday nights right before bedtime. They find it eases nausea and it gives them the next day to sleep it off or otherwise recover.
Does your daughter have systemic onset JRA, pauciarticular JRA or polyarticular JRA? There's a difference between them.
Best of luck to you both -- be sure to get the support (emotionally as well as medically) you need for your daughter and yourself as you cope with this disease. You will both benefit by it.
Janis
Dear Jennifer, I am so glad you have found this forum. Please, remember we are here 24/7. Some of us 'never sleep' so you will find posts at all hours of the day and night.
I hope you have been told you are just starting the 'treatment' and that not to expect immediate relief. this is one of the bugga-boos about this medication that we take, it can take a month or two to 'kick in', and help us. Please, don't be discouraged if you don't see immediate relief for her.
Also, your friends can not imagine how complicated treating this disease is, come up with a stock answer, like 'we are working on treatment', etc. There are a lot of choices now and some of us take more than one drug to stop the joint pain and swelling, so don't be surprised if you doctor suggests more drugs (they don't like to give children Prednisone, but that does give immedicate relief from the pain and swelling.)
It sounds like she is suffering from the painful thumb and needs comforting that you are trying to help her, but it may take time. I know how tough this is and you need to be able to CALL your doctor with changes or no change! Try to find someone on the doctor's staff/people who answer the phone that you can 'beg' to help get to him/her with questions, fears, changes you don't understand.
Your little girl will rely on you to make her feel confident (even if you don't feel that way), about the treatment , AND this dang disease which is hard even for us to understand!! Why would our bodies do this to us???? No one knows!!. But one thing we know is we must be treated, we can't go without medication or our joints will eventually 'not work' well. You have started to treat her early and this is good.
Please keep us informed, and try not to worry too much as you are starting down the right path. I and others on this board know exactly what you are going through. Good thoughts going your way, Lynda
Welcome to the board. You will find a lot of caring people here and a lot of help here.
I have a 12 yera old daughter just diagnosed a few months ago with JRA. The thinking now with JRA is to treat it hard and treat it fast so we save the joints of these kids. It does not surprise me in the least that she is not going to be on plaquenil first. The reason they do not use plaquenil in the younger kids is because it is very slow to work and normally does not work with kids. The choices most rheumy's use to treat kids is mtx in combo with Enbrel for the JRA kids. There are times they will use prednisone also. They do not like to use it long term with kidds as they are growing and the side effects from the pred are worse for them than it is for us adults.
This is ultimately your decision to make on whether to start her on the mtx or not. Please keep in mind that things like naprosen or naproxen DO NOT stop the progression of JRA. You can still have progression of joint damage even if your daughter doesn't show many outward signs like swelling or pain.
I want to echo what grammaskittles says - NSAIDS treat pain and do not alter the course of the disease, so if her disease is progressing then you need other meds.Wow...thank you for all of the great information and encouragement! We do have a pediatric rheumatologist and he has been very on top of her disease, but as "Mommy" sometimes I need emotional support and the drs are not very good at giving that!
I gave her the medicine last night and so far, no side effects. She is on folic acid, so we'll see. I guess I need to remember the effects of JRA...I tend to focus on the current, whether she is swollen or not or in pain, and I forget about the long term effects. Hopefully the mtx will help her before she goes back to school.
Again, thanks for all the suggestions and encouragement, I really appreciate it!
Concerned Mom