DD9 Recently dx with JRA, Info needed a little (long)

[3doodlebugsmom]

First of all, let me say while I "lurk" on the boards all the time, I don't do much posting, but I do find a wealth of information from all of you. When I need an answer, I can usually find it on the "boards".

My DD9 has recently been diagnosed with Juvenile Rheumatoid Arthritis (JRA), and she has not been having a good go with it. In January, she started complaining of pain in her foot in the morning, and she would be limping, but after a while, she would be fine. Then she said her wrist hurt , then her knuckles. Finally, when she said her knee was hurting, and we had been giving her motrin and ice, we took her to the Dr; I thought she might have lyme disease. That was the beginning of March. At that point, there was no swelling, just pain. Blood work was ordered,including lyme titres. A week after the blood work, her knee swelled. The Dr. called me with the results,and said her sed rate was elevated. I informed her of the swelling, and she wanted to see DD back in the office. More in depth blood work ordered, and an appt. was made with Pediactric Rheumatology clinic.

At the clinic, her rt wrist was sore, and rt knee swollen. Her blood work showed A higher sed rate, ANA test was positive, RF test was positive, and she also showed high anti bodies for strep. It looks like she had an undiagnosed strep infection we didn't know about. Dr. questioned a post reactive arthritits due to the strep vs JRA. He wrote for Naprosen and physical therapy. She was not able to straighten out her knee.

After six weeks of PT and Naprosen, no change, in fact, now both knees, both wrists, and her rt ankle are involved. He let the post reactive arthritis dx. go and is staying with JRA. She stiffens up and limps after sitting for more than 30 mins. PT has straightened out her knee,but it is still slightly bent. Saw the Rheumy Dr. again , he prescribed methotrexate 10mg once a week. She's had two doses now. For the past three weekends, walking has been very difficultfor her, mostly because she's not up and moving constantly. The past two Sat and Sun. mornings she could barely walk due to the pain in her knee and ankle. When we go out , I have to help her out of the van, because we are usually in it for at least 35. mins. She limps every time getting out. She eventually gets it going, but it is difficult to watch her struggle. I know the Dr. told me four weeks to see if this med makes a difference, but I feel like I should be doing more for her.

My question to you has anyone else been through this? Is there anything else we should be doing? We go back to the Rheumy Dr. June 4. I know this post is long, but thanks for letting me vent. It helps to get this all out.

 

[me again]

First of all a big hug for you and your daughter--you're both going through a lot right now!Having RA is no picnic, watching someone you love go through it is #ell.

I have RA, diagnosed at age 23, I've lived with it for more than twenty years. It sounds like you're on the right course, seeing a rheumatologist. You do need to educate yourself all you can about this disease (sounds like you're on the right course!). I definitely recommend the Arthritis Foundation and their magazine, also, try to find support groups in your area.

I'm glad to see they're giving her methotrexate. It takes awhile for it to have an effect, probably 1-2 months. If not, they might increase the dose. I take 20 mg/week, best to look it up and find the maximum dose for a child. also, if the response to mtx alone is not sufficient, ask for Enbrel (I don't know if its prescribed for children, need to look it up). Enbrel is usually prescribed when a course of mtx alone is inadequate. Its an injectable, but don't let that scare you. Very easy (even a Caveman could do it ), now comes in pre-filled syringes. Only problem is, its expensive, so check to see if your insurance covers it (its about $3000 per month). I found relief with the combination of mtx and Enbrel. If your insurance doesn't allow for Enbrel, try Remicade. its essentially the same drug, but administered by IV, usually on a bi-monthly basis. More difficult to administer, but worth the relief.

Have you asked about prednisone? Most doctors don't want to prescribe it on a long-term basis, especially for children, but I've been on it in varying doses for the last 20 years with no significant side-effects. I consider it a safe drug, and quite effective. Also cheap--one month supply is about $1~. Sometimes they will prescribe it for short-term flare-ups.

Here's something else that I might get flamed for (could care less if it helps someone!). Does your daughter have silver filings in her teeth? I relate the onset of my RA with having several silver filings removed/replaced with more silver filings when I was 21. My symptoms began a few months later. I always suspected a connection, but couldn't find a dentist willing to remove them. Finally, 2 years ago I had them removed. The dentist got partial insurance coverage because they were cracked and needed replacing, anyways. The insurance would only pay to replace them with more silver amalgams, we paid the difference to replace them with composites. About $2000 total oop for us. Well, my RA symptoms seemed to go into remission soon after that. I still take my RA meds, but feel much better than before when I took the same meds while still having the filings.

One "word-to-the-wise" if you do decide to remove silver filings, DON'T state the reason as to relieve RA. It won't fly. Most dentists are too afraid of being involved in a lawsuit. Just say cosmetic reasons, or any other reason that doesn't put them in the middle of the controversy. Even if you pay the whole thing oop, it would be worth it if it could relieve you daughter's symptoms.

Good luck, feel free to pm me with any questions.

 

[me again]

Another thought--is she taking the generic methotrexate? My rheumatologist insists there is a difference and prescribes the brand name--Trexall. I noticed a difference, too. At least with our insurance they fight you tooth-and-nail over generic vs brand name, but we got it approved. Be prepared for a fight, but you might want to try the brand-name to see if there is a difference. Same with Naprosyn--I found the generic to be like taking nothing, the brand name made quite a difference. Again an insurance battle worth fighting! Also, make sure the Naprosyn is EC enteric coated. More expensive, but necessary for long-term use to prevent stomach problems.

 

[me again]

hi again!

You're on my mind!

Next visit to the rheumatologist, as for samples of Trexall, the brand name for methotrexate. They usually have a ton of them. Get at least a month--2 month's supply, don't be shy about asking for them. That way you can see if there's a difference without going through an insurance hassle. Also ask for samples of brand-name, EC naprosyn (hint: the generic of Naprosyn is Naproxyn, something that goes by may patients, doctors, and pahrmacists. I need my glasses to read the difference) Good luck and please keep us informed about your little princess.

RA is a devastating disease, but the good news is that there are so many more treatment options available now than in the past. It can be beaten! Hang tough!

 

[zumbergc]

For RA and regular arthritus, water exercise, water walking, water aerobics could be a fun activity to move the joints, with out the pressure and impact of land type activities.

You might want to find out if the rehab place does any water therapy?
Some water programs have a gental water class. Sometimes its specifically called gentle, or something with arthritus in the label.

Some places don't have that in the title, talk w/ the instructor, and find out which instructor might be at your childs pace or best advicate, and educated in RA.

Sometimes I goto the gentle class, just becuase the time works out better for me. They do very gentle moves, lots of stretching, and some gentle exercising. If you do several of those classes, then if you go to a regular class, do what you can, talk w/ the instructor, so they know your daughter
has "issues" and can make modifications for her, give her suggestions, etc.

Some of this may or may not be a good idea depending on your access to a pool.


You might want to do some food based research too. I haven't looked at in a while. But there are lots of stuff online about which foods can cause more swelling, and inflamation.

I don't have RA, but have issues w/ my joints, if I get any type of injury to a joint, lots of swelling and pain even months later.
I take cod liver oil, lemon flavor. I take the liquid, but they also have gel capsules. If they come up, some people put them in the freezer, so they don't come up. Its great for your brain too!! Its the extra plug.
If your not into that, there is also salmon oil, and flax oil, flax seeds.
the omega 3 fatty acids you hear about.

I really think that it has helped w/ some of my joint inflamation.
I also do glucosamine, but don't have a clue about RA, or if its even advisable for a child.

This next part is just my experience. I've started eating organic foods, especially meats. When I eat regular meat, I get muscle aches and pains the next day. A friend who has lupus recomended it because she had lots of problems too. She feels the best when she is on a vegetarian organic diet. I'm a big meat eater, but I do organic meats. It definitely is more expensive, but for me not feeling sluggish and in pain, that means a lot.

I strongly recommend doing some research about getting more natural veggies, cutting back on the white sugar, flour products to cut back on some of the inflamation. Just try it for 2 weeks and see how it goes.

My husband isn't affected by the differing meats, as he is the cook, he would try to sneak in some non organic stuff. Well, i started having more problems and then he confessed to buying the "natural " brand at meijers. Which just says no antibiotics or steroids during the cows finishing period. I don't know what that finishing period is, but I could tell there was stuff in it.

You might want to ask your doc about getting a referral RX for a dietician to see if you can get some good ideas that may or may not help you.

OK off my soapbox about good nutrician .
Your your best investigator, do lots of research on line, educate yourself.
Your the one who is going to go the extra mile to help your daughter out.

You may also want to try alternative medicine types of things like accupuncture to help with pain. A chiropractor may be able to help with alignment issues, if that is what could be causing some of the knee pain.
Do your research and find good alternative docs too. Ask, ask ask around.
There are good alternative med docs, and bad ones too, just like regular docs.
Some are good some aren't.

Connie

 

[Piper]

I was diagnosed with arthritis at the age of 12. I had been in pain for several years. I had learned not to complain because my mother just told me to "suck it up and deal with it." She said it was growing pains.

My 7th grade home room teacher was also the PE teacher. She noticed the swelling and redness ( and that I had scoliosis) so she took me to the school nurse. The nurse forced my mother to take me to the doctor. The only thing my mother let me take for pain was aspirin (she didn't fill any of the prescriptions) and she wouldn't let them fit me for a brace for the scoliosis.

I am so glad you are being proactive and helping your daughter. As strange as it sounds, you can "get used" to the pain, but your daughter is so lucky that she won't have to because you are doing all you can to help her!

 

[WildGrits]

I don't know is this therapy is used any more.

I had a friend who had MS she use to get Bee Stings. I think it was to reduce swelling. But that totally a guess on my part.

Is this still an option?

I'm sorry to hear of your DD pain. I didn't know it happened so fast.

 

[me again]

I am so glad you are being proactive and helping your daughter. As strange as it sounds, you can "get used" to the pain, but your daughter is so lucky that she won't have to because you are doing all you can to help her!

It true, you can get used to chronic pain. That's how I lived much of my life, until I got more aggressive treatment. Two things happened--better drugs were developed, and attitude changed in the medical community. They used to be much more conservative, now the current thinking is to be aggressive early on to prevent deformities in the future. quality of life is important, and "sucking it up" isn't a quality of life if relief is available. I'm now used to leading a pain-free life, can get up in the morning and go, able to walk without pain, I'm now used to feeling like a human being!

 

[ohMom]

(((3doodlesmom))

you are not alone -- my DD was dx with systemic onset JRA during her kindergarten year of school, she had just turned 6 y/o. She is now 10 1/2 and in 4th grade. let me start about by saying i'm not a nurse and all my 'wisdom' is based on my reading, research, and experience.

sounds like your daughter is in a flare-up. is she systemic or pauci/poly? you have mentioned 3 joints so maybe she's pauci? i'm going to assume she's not systemic as you didn't mention any classic symptoms such as fever and rash. so keeping that in mind....definately speak up and get better medications for her. when my DD was dx i spoke with an adult friend who lived with JRA and the one thing she told me that has forever stuck in my mind is "Don't be afraid to medicate" i know it's scary with a capital S to suddenly give your child medication that can have serious side effects -- but I find peace in knowing she's having a better quality of life and not only that the effects of the disease are scary in itself. if one is the lesser evil -- i choose medicated with good quality of life.

my DD started out on naprosin and it wasn't enough. Prednisone did WONDERS for her, yes there are side effects but it was quick and effective. my DD has also had IV steroids (Solu-medrol) and it again was WONDERFUL in the results. the good thing about infusions of steroids is bigger doses with less harm to the body and more effect.

ETA: my DD has been on celebrex for a while now, maybe 2 years and it is much more effective for her then naprosen. She went on Suldindac for a while during the hoopla of Celebrex and it was pulled from the shelf, but it was very hard on her stomach. just FYI -- if you are given those options.

There are biologic medications and that is what my DD eventually began. I don't want to overwhelm you with info....just know she doesn't have to live in such pain. personally -- i wouldn't wait -- i would call the rheumy TODAY and ask about an earlier appt or different meds. are you fortunate to have a pediatric rheumy in driving distance? did you know there are STATES that don't have one? amazing.....

some tips to get through morning stiffness: soak in a warm bath to get the joints loosened up. Toss a blanket in a dryer and get it good and warm and then wrap her up to warm up her stiff joints. TIME -- allow her extra time in the morning to get going. I have learned that my DD just can't jump out of bed and get going. she often lays around reading, eating breakfast or playing to get herself going.

if school is a concern -- see your guidance counselor to set up an IEP --- which is a way of getting her the modifications in the classroom she needs to be comfortable. my DD also has a letter on file to excuse 'excess absensces' at my discretion.

I found most folks don't know of JRA or really what it is. They think arthritis and connect osteoarthritis. a big struggle for my DD is the fatigue and that is hard for some to understand that a 10 y/o can be so tired.

hang in there -- PM me if you'd like

the arthritis foundation has a great website and here is a link to their message board http://www.arthritis.org/communitiesnew/Forum/viewmsg.aspx?msggroupid=1004