rheumatoid arthritis | Arthritis Information

I know this is probally not a new question here but it is for me. My daughter got diagnosed today with RA...she is 17 years old. I have been divorced 13 years and have not lived with her. I saw her every other weekend until her teenage years. She had complained of the pain but thought it was just the usual growing pains. I still do not get all the info I would like about what is happening to her, so I thought I could come here to get some answers? If someone could tell me about similar instance in age and the disease so I can know what to expect from the situation. I love her dearly and want to do what ever I can...can anyone out there help me out with words of wisdom and encouragement. Thanks for your help. Alan RasmussenThere are many on the board with JRA. They will get around to answering you soon. As well as other parents. You love her and are supportive that will help alot. Make sure she has a good doctor. What treatment if any is she getting? Everyone is different. As far as how bad they get it and how quickly they progress. Stick around and you will learn alot. Thankyou for answering...I just found out tonight about her condition and could not get ahold of her by phone...my older daughter called me to let me know...Thanks again for your helpThank you for answering....you sound like you know what you are talking about..When you said I would learn more, is it you did not what to tell me or you did not what to be the bearer of bad news....I want to know so tell me all you know...Please..Thanks Alan HI Alan, I am so sorry for your daughters diagnosis.

My 12 y.o.son Liam is still not definitely diagnosed by his paediatric rheumy, but my rheumy has diagnosed him with JIA = juvenile idiopathic arthritis and AS = ankylosing spondylitis, so after bone scans, xrays, blood tests and different antiinflammatories which upset his tummy too much, he is now on a prednisone reducing programme for another 5 weeks, so far 3 weeks, then he will be going onto Methotrexate for 1 year to see what happens to his pain.

His symptoms from day one have been inflamed eyes, constantly red and blister looking lumps on the edge of his cornea, that has been diagnosed as episcleritis, I knew he had that as I have RA and episcleritis. Next he has joint pain, sometimes severe, acute attacks, unable to move and extremely nauseous and tired. these pains affect him mainly in his shoulders,ribs, hips, SI joints and pelvis. They can also happen in fingers, hands, wrists, elbows, feet, ankles, toes, and jaw. My own Rheumy thinks AS as the pattern seems to indicate that, and poss juv rheumatoid too. He is HLAB27 + and that can be an indicator of AS, along with other signs. His ESR was 17 which is elevated but only slightly, CRP normal. These are blood tests which we all have regularly to see what is going on with our disease, however some people are sero-negative, (no pathology indicators) but still suffer like sero-positive people. The concensus of opinion with rheumatologists is that sero-positive have a worse overall prognosis, I have read this in many RA journals and websites, and my RD confirmed this. I have a friend who is sero-negative and she is worse than me and I am pretty bad.

I really hope your daughter has a temp arthritis but bear in mind that early intervention is much better than late. If I can be of any assistance to you, please do not hesitate to ask, I am sure you will feel better and not so scared when you realise there are many people here who can make you feel better and not so isolated with the disease. There is a lot to learn and know, but getting to know all about RA can be your best weapon as you can try to keep on top of it and not be too shocked by its horrible friends it brings along with it, Fatigue, life changing status, lack of mobility, etc etc.

I am sure Cordelia will be online so I hope you hear from her, she is very good at explaining things, and is very good with the newbies. All the very best and keep in touch Alan. Regards Janie. janiefx2008-12-12 02:14:28Alan....I am so sorry to hear your young daughter has been diagnosed with RA but please dont think the worst, so many people live full productive lives with this disease. I do know you must be shocked though, it has/is thought of as an ' old person' illness but unfortunately that is not the case.

There are many members here who began with JRA so will relate to how your daughter will be feeling. Once she has come to terms with her illness, I believe it would be beneficial for her to be in contact with her peers with the same condition. It does not mean doom and gloom, I promise.

I have learnt so much from the people here and someone will come along who can answer any questions you may have. In fact, it may be better if you list the things you want to know about.

My wee bit of advice for now is to stay calm and get as informed as you can. Being here is a darned good beginning!

Hugs to you... Lyn

Hello Alan:

I had JRA and was DX'd at age 10... I had a few years of great discomfort but was lucky in that my JRA was in a few joints -- not all were affected at that time... I had some joint destruction and had my knee rebuilt. I had issues for quite some time but then I had many good years too...

and only recently at age 50 did I have such a bad time of it whereby I am in severe status.

My JRA was at a time when there were not the medications available today. Chances are very good for your daughter. Feel free to contact me if I can help. But there are many who are probably more knowledgeable about current treatments for children...

My best to you and your daughter.

Hello Alan

I've had JRA since I was 9 years old. Mine involved most of my larger joints and later progressed into the fingers, toes, and the wrists. The worst hit were my hips, which I had to have replaced at the age of 29. When I was diagnosed about the only treatment option at the time was methotrexate and gold injections. The gold didn't work for very long but the methotrexate kicked the diseases butt good...then. There are a ton of different medications that are available now it will just take some time to get the right combo. Depending on disease severity.

If you have any questions feel free to private message me I'll do my best to help you out.

Good luck and I'm sorry for your daughter's diagnosis. This disease really sucks.

Bob H

BUMP Hi Alan, I cannot help that much as I do not know a lot about JRA But;

One thing to keep in mind is that the medications for this condition can take months to start having a beneficial affect on the patient.

During this time she will need to show patience as will you, and any others that are considered loved ones.
Caring and understanding will go a long way to helping your daughter cope...

RA is not your standard arthritis that many will say "Oh I have a touch of that in my hand", this is more serious and needs constant monitoring and life changing habits in order to manage life's challengers..

Untill we know how severe she has this the better the advise from the wise will be.
It's not the end of the world Alan, I have severe RA but am lucky that the drugs are working in my favour and am able to still get out and do what I enjoy.

All the best to you and your daughter.
I was diagnosed as a teenager. What I can't stress enough is how many good meds are out there right now. The most important step to be taken right now is to find her a rheumatologist who you trust. Your daughter will most likely have a long relationship with this doctor. It is not always quick, but the dr. will find a drug combo that will work for her.[QUOTE=Bodak]Hi Alan, I cannot help that much as I do not know a lot about JRA But;

One thing to keep in mind is that the medications for this condition can take months to start having a beneficial affect on the patient.

During this time she will need to show patience as will you, and any others that are considered loved ones.
Caring and understanding will go a long way to helping your daughter cope...

RA is not your standard arthritis that many will say "Oh I have a touch of that in my hand", this is more serious and needs constant monitoring and life changing habits in order to manage life's challengers..

Untill we know how severe she has this the better the advise from the wise will be.
It's not the end of the world Alan, I have severe RA but am lucky that the drugs are working in my favour and am able to still get out and do what I enjoy.

All the best to you and your daughter.
[/QUOTE]

Solid Advice......Actually everyone has given good advice. I also do not have JRA, So I just wanted to show some support,and say I am sorry your daughter and family is going through this.

Best Wishes,

Lisa

I'm very proud of you IO, you're being so nice today! You know Bodak that's something that always gets my goat. People will find out that I have RA and say I have a touch of that in my hands and it doesn't bother me much at all...quit whining about it. I want to smack them sometimes.

I also always wondered the same thing. If you had JRA as a child, is it then classified as being just plain old RA when you're an adult or is it still JRA?

Everyone has given some great advice especially Bodak and rocckyd. The important thing is to have patience with her and with the meds. Most of them are pretty slow acting especially methotrexate and arava. The biologics can work quiclky, but will generally take three months or more to really give the full kick. They are also very expensive and if she doesn't have prescription drug coverage you should start looking into programs to help with the costs.

Try to get her to come to the site too I'm sure she's pretty freaked out and there are lots of people here, myself included, that know exactly what she is going through right now.

Again...good luck to you and your daughter. This isn't the end of the world...just the beginning of a new one for both of you. It will make you both stronger in the long run.

Bob

JRA and RA aren't exactly the same.

Now, what you can do for your daughter: Offer her understanding. When she says she "can't do something" believe her -- It's a disease that while you look perfectly healthy, you feel like you're being torn apart bit-by-bit inside. Encourage her to do what she can, but don't bully her into doing more, as it will only cause more pain. Understand that fatigue will be almost all-consuming at times. See that she gets into an exercise program for arthritics -- water exercise is particularly good in a heated pool. They are available all around the country -- and are fairly inexpensive. go to www.arthritis.org and plug in her zip code where it says "programs near you" to find a program that is near you. Read the following and try to understand it -- while it speaks of multiple sclerosis, it is much the same for people with RA

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Hi Alan,

I am sorry for your daughter's diagnosis (dx). I think that it is different for each person how RA will present itself, mild, moderate, severe. mine started with a bang but as an adult. I think we kind of would prefer people with firsthand experience of JRA to respond first just because they have been where you are. However, we are all here for you.

I don't have firsthand knowlege of JRA but I know a lot of people through the support groups who have gotten ra as a child. some as young as 2. there is a possiblity the younger ones outgrow it and stay in remission for many years to come. She needs excellent care, control of inflammation, plenty of rest, fun, humor, etc. research as much as you can about her condition which if you are here on the ra/autoimmune boards, then I think you already know to do that. Love and support like a lot of others have already mentioned. Communication is always good in every situation, I know for me I don't like it when people ask me how I am doing everyday because for me the pain is everyday. I say fine but then I am saying that to protect them. because watching someone you love in pain everyday is difficult. I would rather they ask me are you up to doing a certain task -- shopping, movies, the mall, etc. but again everybody's different.

However because of my lack of experience with JRA, I wanted to leave you with this video instead and other videos will pop up associated with JRA if you are interested once you visit the website. take care. the video:

http://www.youtube.com/watch?v=uUSNLR9KtMs

Here's a link to a book.. not the entire thing but a preview.. (you may get more previews w/ searches in the margin)

http://books.google.com/books?id=zqihWkVzGsgC&pg=PA37&lpg=PA37&dq=jra+always+seronegative&source=bl&ots=8FM-jrAu0Y&sig=t4YhZIjtnHKEX4DP0TJzSH6-k2M&hl=en&sa=X&oi=book_result&resnum=1&ct=result#PPR5,M1

[QUOTE=IslandWoman]JRA and RA aren't exactly the same.

Now, what you can do for your daughter: Offer her understanding. When she says she "can't do something" believe her -- It's a disease that while you look perfectly healthy, you feel like you're being torn apart bit-by-bit inside. Encourage her to do what she can, but don't bully her into doing more, as it will only cause more pain. Understand that fatigue will be almost all-consuming at times. See that she gets into an exercise program for arthritics -- water exercise is particularly good in a heated pool. They are available all around the country -- and are fairly inexpensive. go to www.arthritis.org and plug in her zip code where it says "programs near you" to find a program that is near you. Read the following and try to understand it -- while it speaks of multiple sclerosis, it is much the same for people with RA

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
[/QUOTE]

Very true......

I am always nice when it comes to my daughter.....Thanks for your supportWhat joints did you have it in the start...and what did you do for the first year of treatment. Thanks AlanMy daughters has started in her knees and now her wrists...how can you relate ??? Thanks AlanHow old were you when you found out and how long have you been on the drugs?? Thanks AlanYou say months for the meds to take effect....how many months are you talking? Thanks AlanThank you for your answer....AlanI don't compare regarding the medications because in 1967 there was aspirin and ice!! But, I started in my knees.... and it never really progressed anywhere at that time...I was lucky. I was put into a full leg brace to support the knee joint and it didn't help. I had deterioration of the knee cap and they had to scrape the synovial lining and build up the knee cap again as well as other areas of deterioration. It was a long time ago, and my memory is pretty clear on all this.

I have a friend w/ a 12 y/o daughter who has JRA. She is taking MTX and enbrel (just as I am) and is finding only slight improvement in discomfort though her RD believes they are arresting the deterioration of her ankle and knee,.... perhaps somewhat they are but not completely== yet. My best to you and your DD.

Hi Alan,

I can't really remember too much because I was Dx with JRA when I was about 11 years old. It started in my wrists and finger. My mom found it because 2 of my fingers are bent and disfigured. They put me on plaquinill (sp) and naproxen. That pretty much put me into remission. I never remember being in much pain so I think I have had it for much longer than they think. I think I just got used to it. I had very limited range of motion in my neck, knees and wrists. I went to physical therapy and I feel like that helped the most.

I got all motion back in my knees, unfortunatly not my wrists or my neck.

I went into remission after a few years on drugs and I haven't taken them since. (well I shouldn't say that, I tried enbrel about a year ago and sulfasalazine, but I don't feel like I am bad enough off tobe on the drugs) I am 25. I don't have many problems now. Occasionally some stiff joints in the morning if I over do things. I have always felt tired though.

Another thing is that my blood work has always been completely normal.

I hope that you find the answers that you are looking for.

Christina

Mine started in just my left elbow when I was 9 years old. Then moved to the shoulder before progressing to almost all other joints. It was diagnosed as polyarticular juvenile rheumatoid arthritis. Just a fancy way of saying many joints affected by juvenile rheumatoid arthritis. Back then, methotrexate had just been approved for use in children so that's what I got with a small dose of prednisone.

Sometimes the drugs can take 3 to 6 months for the full effect to be seen in many patients. In some, benefits can be seen as soon as three weeks or less. I've heard of people saying they noticed a change almost overnight. I've never had it this lucky but if others say they have then that's great for them.

Bob

Alan,

It is obvious you will do right by your daughter. but you would be surprised at how badly people are treated with this disease and most times by the people who say they love them. Like the 17 yo in the video I posted said, she still hurts even when i doesn't show. She said that because people are placing demands on her assuming since she doesn't look sick she is not in pain. Unfortunately, that is a reality, so I think that is a concern and is often mentioned in advice to others -- the treatment of the newly dx'd.

but I think you are asking all of the right questions and very interested in your daughter's care and well being. excellent!Shelly is right, but I had the opposite problem. My mom freaked out when she found out I had JRA. SHe was so overly concerned. I was afraid to talk about it because I didn't want to upset her. I still to this day don't talk about it to her. Now, granted I was a young child at the time, your daughter is 17. It wasn't until I joined this board that I finally came to grips with it and was able to talk about it. I always hid that I had it. For the opposite reason Shelly is talking about. I didn't want to be treated like a little cripple.

Anyway, what I am trying to get at is that anyone could go overboard like my mom did. I highly doubt that you will, but I am just giving you another perspective.

edited to say: Don't get me wrong, I am very grateful that my mom cares as much as she does, but sometimes to much protection can be a bad thing.

cah14182008-12-17 12:34:00I was lucky to skate through childhood without much medical drama - even my recurrent ear infections and sicknesses were cool with me, as I got to stay home from school so often and study on my own terms (I ended up skipping a grade level!). I can't imagine having to go through childhood suffering with JRA or other serious medical problems - childhood is supposed to be fun and carefree! I will keep the JRA kids in my thoughts and prayers (as well as you big JRA kids!). Hi,

So sorry about your daughter's recent diagnosis. My 15 year old boy has Polyarticular JRA. He has had it for sev years. Polyarticular is considered to be very much like adult ra and is treated in very much the same way. I think JRA is actually specific to kids with onset at 16 and younger. My son's arthritis got much worse when puberty hit. His knees were very bad. He fell down all the time and was in constant pain. Non Steriod anti inflams helped very briefly and then we were on to methotrexate. The MTX started to help within a few weeks and in a few months he was a new kid. If she is given Methotraxate I would suggest going with the injectable. My son started with the pills and suffered the side effects (fatigue and nausea) for years because he did not want to inject. He recently switched to the injections and has felt so much better. Pool therapy was great. Also moist heat feels good. Flannel rice packs can be heated in the microwave and put on achey joints.

Oooops! I hit post to soon.

I wanted to add that the arthritis foundation has a message board for youngsters and also for parents of kids with JRA. I know there is some girls on the board there about your daughter's age.

All the best to your daughter and to you!