Hello All,
My 2.9 years old daughter just got diagnosed for JRA. I had no idea about this disease until now and I am so worried about her future.
The doctors want to start the therapy with methotrexate and prednisolone.
I am just wondering if anybody on this message board has already gone through these medications and can give me some advise or tips. I am so worried about the side effect.
Thanks.
Hi! Well i don't know of how much help I can be, I'm only 18 but I have JRA and i've been fighting it since I was 5. I have been on methotrecate and i can tell you some things about that. It is a harsh medication. It worked very well for me for fighting the pain and the breakouts of swelling and inflamation, but I really didn't like it at all. It made me very nauseated and thats not a good feeling. I have never been on prednisolone, but I have taken many NSAIDs. I didn't get much help from them. I'm not on anything right now, feeling a bit better....Thats about all I can help you with right now. I wish all the best for your daughter!!My daughter is 6 years old and was diagnosed having polyarticular JRA at 4 (8/05). She was on methotrexate once a week for a year and a half and it never bothered her. She was also on it for uveitis (sp?). The jra slightly affected her eyes and she had to do eye drops 3x a day for a while, but the methotrexate helped with that too. She went off of all medications in 6/07 and is now considered "in remission". I fear what the long term side affects might be from being on the methotrexate further down the line. I worry everyday she will relapse. She is a sports nut and exercises all the time in hopes of staying in remission and keeping her body strong. We changed her diet to more organic foods since less/no chemicals are used to grow/make their products. She also takes an Omega 3 supplement and an organic childrens multi-vitamin. I live on the google site searching how to fight jra. Best of luck to you and your little one!! You are not alone.My daughter was on mtx this time last year. We chose injections, because NSAIDS bothered her stomach so much. With the injection, you know they get the full dose and it doesn't pass through their stomach. Of course, getting the shots was terrible! But she had had problems keeping meds down, etc., in the past, and if we were committing to it, I wanted to be sure she was actually getting the med.
She was totally fine right after the shot - no nausea, etc., but after about 48 hours, it would hit her. After I figured that out, we scheduled the shots so we knew we would be home and she could just lay around as much as she needed to. It was tolerable, not a major disruption. She didn't feel so awful it upset me, she just needed quiet time until she felt normal again.
She took folic acid in a multi-vitamin, and never had mouth sores or really any of the usual side effects.
We had to make the decision to stop it, though, because she kept getting infections and having to go off it. She had pneumonia, then staph, and it wasn't helping her joints. I don't mean for this to scare you! I just think you will know, that's all.
They said she wasn't on it long enough to really know if it would help her joints, but my feeling was, if she couldn't stay well long enough without having to stop it, what was the point of trying?
A lot of kids do very well on it, and all kids are different. I hope things go well for your daughter! All you can do is take one day at a time, and I really think you will know what is right for your daughter.Hi Lani my 12 year old daughter was just diagnosed with jra and what a shock it is. We were all under the belief that arthritis is an old persons desease and now we all wonder what happened to bring this to our family. As you can guess this holiday season isn't goint to be such a good holiday season we are all just devastated and in such pain seeing our wonderful daughter in such pain. I guess we shouldn't be so devastated the doctor said that it is managable and that Julie should be able to live a normal life we are just very scepticle at this time and confused. Best wishes to you and your family.
Lani - I feel terrible for you, I know exactly what you are going through.
I've developed a game plan to go to war with this horrible disease and the first thing I did after reading about the mtx and joint injections she has to start this January was start surfing and I found this AI site,also 4ratalk.com and rasushi.org - all with brilliant people on them.
I now accept that it is going to be the best for her to have these drugs and I wish (as does her new consultant) that she had started them earlier. So Lani, be brave for your little one; when does she start the treatment? I've been told about lots of things Becky can have to help with side effects - folic acid is a must, calcium toffees have been recommended too. Ask your dr what she can have. Also, try asking a homeopath for natural remedies maybe? Becky has just started a course of 'I don't care about needles' homeopathic remedies.....Anything to help her!!!
Juliesmom - I feel for you too, it is a horrible shock.What treatments is your lovely daughter going to have? Did she have any health problems before her JIA started that were put down to anything else?
Suzanne - what meds is your daughter on now?
Sierra'sMom - Becky was first dxd in 2000 when she was 3. She was on NSAIDs for 2 years then went into remission for 2 years during which time she took no meds and had no problems. We thought we had beaten it. Then it slowly sneaked back, but the dr told us last week that only 1 in 10 get it back again - well it would be us wouldn't it! So hopefully Sierra will fall into the majority category, fingers and toes crossed. Keep up with the diet, I'm working on that with Becky too (but she is SO fussy!)
Thinking of you all
Dee
Oh ladies, don't forget about www.kidsgetarthritistoo.com It's the only site I know of that's specifically for parents. They're great over there! Dee, my daughter is only on Zithromax now. She did great on 1 tsp. 2 x week (no pain, sedrate normal, xrays show she was stable). We would have been happy to stay that way forever, but her AP (antibiotic protocol) dr. wanted to try halving her dose.Hi! LJ here! Im 21 and have systemic Jra. I have it in all of my joints and have been through tons of meds especially the new biologics (remicade, Humira, Orencia). I have been on methotrexate before. In helped for me but It upset my stomach to much that I chose to stop it. I would recommend it if your daughter can take it. Prednisone I have also been on. This is a hard medication to encourage. One it has been the only drug to really take away my pain but not to ever get me to remission. It is a steroid that cause weight gain, easy bruising, can cause depression and can thin the bones if on it for too long. Our bodies also become addicted to it of on a long time and can stop producing its on natural steroid so it become hard to ween off the prednisone. I have been on it for 12 years since I was diagnosed at age 9. If there is any way to avoid it I would but if there isn't make it your mission to try to find something new when she is better to replace the prednisone.I have experienced the weight gain, depression and thinning bones.
If anyone else has any questions just ask or you can email me at ljrun1910@yahoo.com don't come on here alot. I've also just started a blog about living with JRA and if your children are old enough or u want to check it out yourselves it's at http://livingwjra.blogspot.com/
Good luck everyone! Doctors may say at least its managable but its still a disease and sometimes the pain can feel as if you are dying! A lot of people til this day don't understand the severity of this disease. Just be there for your children and know that its not just a little ache!
Hey everybody. This is my first time here. I am 30 years old and was diagnosed with JRA at the age of 6. No, I never outgrew JRA but I learned to live with it. As a child, I was treated very aggressively and I know that aggressive treatment is important when the child is young due to the rapid growth a child undergoes. I've had lots of meds throughout my life, Tolectin, Gold Injections, Naprosyn, Prendisone, Methotrexate, corticostreoid shots, and most recently Enbrel. I was on Methotrexate the most and I must say that the side effect of being a bit nauseated was not fun but worth it in the whole scheme of things. To this day, mornings and nights are my worst times. I have learned to live with JRA. I did develop an underactive thyroid which I will take medicine for forever. Some dictors believe that JRA and thyroid disease are related. My JRA actually went into remisssion for some time after trying the natural approach referred to in a book called Eat Right For Your Blood Type. As a teeenager, I was interested in the homeopathic approach but was always told by the doctors that it held no relevance. It wasn't until I was off on my own that I tried it. It was a huge life change going the natural route. The most important things that I avoided were Tomatoes and Potatoes and I ate alot of fish. Sure enough, I found that these vegetables (even in the smallest form such as ketchup or french fries) really do cause inflammation. As a child and teenager, I never took gym class but now I could actually take an aerobics class every day and run! Of course some days were better than others and I still had to use anti-inflammtories but it wasn't too bad. I have managed to live a fairly normal life style. I am an elementary teacher, wife, and mother. About 2 1/2 years ago I got pregnant with a beautiful baby boy, Ethan. During the pregnancy I stopped my natural approach as I wanted the baby to get as much nourishment as possible during the pregnancy and nursing. I actually had a small amount of pain during the pregnancy and was greatful for that. My son was born 6 weeks early and was 3lbs., 7oz. due to preclampsia which the doctors believe may have been due to the JRA. Although he was small, he was healthy. I found the arthritis came back with a vegeance about 7 months after my son Ethan was born. So, I reluctantly went back to meds, starting some anti-inflammatories along with enbrel shots. I must say that the enbrel worked quite well. In a few weeks, I was back to my old self, taking aerobics again, and this time I wasn't going the natural route, as I wanted to get pregnant again. I went off my meds for a month and got pregnant again. At about 15 weeks, I lost the baby. We found out later that we may have lost the baby because they weren't monitering my thyroid levels and adjusting my meds during the pregnancy. About 3 months later, we tried again to concieve and did! My family and I were thrilled. I am still pregnant now and it has been a good pregnancy so far. I am due in February. But, one of the biggest reasons why I am on this site is due to the tragic news we learned just 3 months ago. My son, Ethan who is almost 2 1/2 had a severe limp that at first only existed in the morning, after naps, and at night. You know right away what I thought, JRA. After several months of doctors probing my little boy, we have found that he too suffers from JRA. The doctors tell me this is very rare. I mean, believe me, before I ever thought about concieving I was told that the chances of my child developing JRA were so very low. You can imagine how horrible I feel to not only see my child suffer and limp around but also how sickened I feel to know that I am the cause for his pain. The pain I feel in my heart is immense. I know that he will be okay as I am okay. I made it. But, still it hurts so much to see him in pain. Now I know how my mom must have felt watching me suffer through the years. After crying so very much I have decided to get strong and develop a game plan. I am actually taking my son to a hospital 2 hours away designed just for kids. It is the same doctors that treated me and I know they are the best, so it's worth the trip. We will be headed there next week for steroid shots to both of his knees since the anti-inflammatories we are using (naprosyn and indomethacin) aren't giving us the results we like. So far, we are only seeing the JRA in his knees but it seems to impact everything and causes him to have trouble walking. So, we are praying that the injections may help. They will be fully sedating him for the shots since he is so little and will move around too much. We will also visit the pediatric opthamologist for the first time for him to check for uveitis or swelling/inflammation behind the eyes. We will also start physical therapy 2 times a week with 50% aquatic exercise. My game plan is to be as aggressive as possible because I've seen the children with JRA who have gotten no treatment at all and it's not good. I know that taking all those drugs and treatments as a child was never easy for me but I also know that it helped me to grow and lead a fairly normal life. If anyone has any comments, questions, or suggestions please comment back or email me at sidolem@verizon.net .
Hello All,
Just wanted to let you all know that JRA can be cured. I am 40, with onset at age 8 and no longer have JRA. I truly believe that I could have outgrown this much sooner if I focused on being healthy and cured as opposed to focusing on the illness. The mind is a very powerful healer...I have seen it in action and read so many books on the subject. If you get a chance, watch the DVD "The Secret" or read the book. The body can heal itself, but the patient and the people around the JRA patient need to focus on "being well", not focusing on the JRA. Thought creates reality...This is a very different thinking than regular modern medicine, but it works. I am going to start working wth the Arthritis Foundation and their program with children. If you are interested, let me know and I will give you more info.
These are all incredible stories from incredibly brave JRAers and or their mums. I'm honoured to be one of you -but I desperately wish I wasn't if you know what I mean...
It is such a shock when you or your child is dxd and I wish I'd had access to this site 7 years ago when Becky was first dxd. HOWEVER... we now all have to move the fight forward against this b*****y disease and one of the best ways is sharing experiences so that we can get advice and info from many sources, not just the medical profession. So thank you all for your input, it has been invaluable in the month that I have found you all.
KTakay - I think we'll all hold out for your cure! I am so pleased for you, it shows there is a way to beat this and I would be very pleased to receive more info from you. Becky currently sees a healer, a homeopath, a dietician, a reflexologist, as well as her rheumy dr etc - I'm open to any and all suggestions/paths!
MeInEth - I do feel for you so much, you are clearly feeling so much pain and guilt about Ethan. There is no point me saying DON'T, as your feelings are too complex and raw but don't let it eat at you. Like me, you are developing a game plan on your child's behalf and that is where you are focusing your energy and will. Go girl! I'm with you all the way! Hope all goes well in February too!!!
LJ - hope you are feeling good at the moment! Did you try the MTX injections? That is what Becky is going to start in January.
Suzanne - hope your daughter stays well and that the new Dr sorts out the meds properly. It's jolly annoying that you have to wait so long - the UK's National Health Service also has loooooong queues and waiting times for everything. I received a letter from them today confirming what was discussed on 26th November!
Julies mum - hope Jules is doing OK at the moment and that Christmas went by happily enough for you and your family, I do feel for you too so much. I don't know about you, but one of the main feelings I have at times (usually the depths of the night...) is sheer impotent frustration. I CAN'T KISS IT AND MAKE IT BETTER!!!!
Sierra's mum - Hope Sierra is continuing to do well; keep a very close eye on her. Becky was in remission for 2 years, no pain , no drugs and she was so fit and flexible it was fantastic. And then it sneaked back so deviously..... I don't want to scare you, just make you aware that it CAN come back for a minority of kids. I wish I'd known that.....
And finally Lani, who started this thread! I wish you and your little one all the luck in the world that you can successfully fight this disease. I am also scared of the MTX and the joint injections that Becky has to have. But I do now truly believe that it is the best way forward for our battle against JIA.
This forum is just wonderful and I am so pleased I found it - the support and advice has been incredible and I now know so much more than I would have if all I had done was listen to the medics.
Our game plan:
1. Becky now has her appt for ALL her joints to be injected with corticosteroids - Friday 11th Jan.
2. She starts the MTX injections as soon as funding has been approved ( good old NHS again...).
3. She is on an acid elimination diet (aimed at evicting uric acid which the dietician believes caused arthritic inflammation). She hates it but I have developed a recipe for 'arthritic gingerbread men' which she loves!!! And more to come!
4. She is on homeopathic remedies for inflammation, needle phobia and inner strength
5. She sees a spiritual 'healer' every month - he doesn't touch her but she does these wonderful smooth tai chi type movements that she can't do when she is not with him. It seems to release something and she is very tired but relaxed afterwards.
6. She has reflexology (not sure if it helps but it IS heaven!)
7.She has guitar therapy!
8. She used to ride ponies until last year when she went out the side door taking a fence and lost confidence. Her legs have been worse since stopping this.
9. Hydro therapy most mornings (6.30am in the pool
I would like to wish you all a wonderful New Year and hope and pray that 2008 brings happiness and comfort to you all. Keep on posting - we need all the input we can get!!!
Dee and Becky
My heart goes out to you as I know my mom felt exactly the same way saying that she wished she could take the pain for me rather than me going through it. However, I truly believe that things happen for a reason and looking back may have created it myself. I was a tomboy doing everything my older brother did. One summer(age 8), I had a swollen ankle and the Dr thought I had sprained it. It didn't go away and I went to another Dr. This Dr said I had JRA and told my mother there was nothing that could be done and go home and take aspirin. My mom was upset at this and knew there was more that could be done. My parents took me to Stanford Medical Clinic in Palo Alto CA and within 2 yrs I was back doing everything ( just like Becky). I remember thinking to myself, this was too easy. Then bingo, the JRA was back and more disabling than ever. I went through medications (gold) and multiple surgeries (knee replacements Age 19) and Hip replacements(Age 21 and 22). Today, I am doing well and very happy, but I want to let everyone know that I don't think this needs to happen. A friend and I first read the book , "Heal your Body" by Louise Hay which shows the causes of illnesses and how they can be reversed. I truly believe in this book and it only costs .95. If you can start with this book. I would even send it to you if it is not available there. E-mail me at KTakay@comcast.net if you would like me to send it. My friend has a remarkable story of overcoming lung cancer. Now myself and JRA. I am working with a friend with Lupus and she sees the benefits. This is not an overnight cure. It takes time to change people's thoughts. I think children are more capable of changing their thought quicker and therefore, can outgrow the JRA. Focus on being "well", not on JRA...that is the key. My advice to you and your daughter is to focus on keeping all your range of motion while this is happening. Once lost, it is very difficult to get back. Ask your daughter what she likes to do and help her achieve them in a secure environment. If she likes riding horses, then help her find her way back to feeling confident in riding. Moving toward what makes them happy as opposed to "worrying" I think is a big factor. They need to see themselves well and the benefits of being well. If you are willing to try it out, I am so willing to keep in touch and work through it. Maybe later, your daughter can even e-mail so that I understand what she is feeling. Take care to both you and Becky and wishing everyone a Very Happy New Year !
Thank you Karen, we wish you and your family a wonderful New Year too!
I have just ordered Louise Hay's book from Amazon - fingers crossed!
Dee
[QUOTE=arriscolwell]Oh ladies, don't forget about www.kidsgetarthritistoo.com It's the only site I know of that's specifically for parents. They're great over there! [/QUOTE]
That is great Dee...I will pray for you and your daughter as well as the other parents/children. I truly believe this works. Think Love, Gratitude and Wellness...Here's to 2008 and being heallthy.
There is some hope. I was diagnosed at the age of 4 it went into remission when I was 7. The majkor downfall to my story is that mine came out of remission starting in August. I am now 24. I take celebrex, it doesn't really help. I also take vicodin to control the pain. I am to afraid to take metheltrexate. Good luck with your little one.Purplemonkey,
Focus on being Well...I know it is hard when you are in pain, but envision how it would feel to be pain free. Also, ask your Dr about Enbrel. I heard this medicine has been changing people's lives these days. Take care and good luck.
[QUOTE=lani]Hello All,
My 2.9 years old daughter just got diagnosed for JRA. I had no idea about this disease until now and I am so worried about her future.
The doctors want to start the therapy with methotrexate and prednisolone.
I am just wondering if anybody on this message board has already gone through these medications and can give me some advise or tips. I am so worried about the side effect.
Thanks.
[/QUOTE]
JRA may be treated with a combination of medication, physical therapy, and exercise. In specific situations, your child may require injection of corticosteroids into the joint or surgery. Your child's health care providers, including the primary care physician, rheumatologist, and physical therapist, will work together to develop the best method of treatment.
The goals of treatment are to relieve pain and inflammation, slow down or prevent the destruction of joints, and restore use and function of the joints to promote optimal growth, physical activity, and social and emotional development in your child.