Introduction

[Guest guest]

Hello,

I am new here and already learning through lurking. I am mother to a nearly 13yr

old with what we believe is arthritis. Not completely certain of the typing. She

also has celiac disease (as do her brother and I) and has been gluten free for 7

years now. She does Irish dance and just about 2 years ago, she was having

severe pain in her ankle. We figured perhaps an injury as she was gearing up for

St Pat's day festivities. When I took her to primary care, he told us

differently. Her joint was red, swollen and warm. As was the other side and her

knees, and her hands, and wrists and elbows. We got blood work and the rheum

consult. She is negative for her RA factor and Lupus. She did have high sed

rates showing inflammation. Her initial Lyme test was positive, but the longer

more specific test was completely negative. I have heard this is not uncommon in

RA. In watching her, she also had back pain and in her shoulders -- it is just

that those were not as bad as the other joints. She was ranking pain 7-8 and

sometimes in tears. Rheum doc was guessing either spondylo or polyarticular

types. Started her on Sulindac. She was on that for several months and seemed

like her pain was getting better. but then her dance instructor keyed me in to

the fact that she could not remember dance steps that she had been doing for

years. I started watching her more closely and it was rather scarey, she was

quite confused. I stopped the sulindac immediately. Back to the Rheum who

decided to just try higher amounts of ibuprofen at the time since other NSAIDS

were more likely to cause symptoms like we saw in the sulindac. She did ok on

that for a while, but then I started to key in that her stomach was beginning to

hurt her and pain on " good " days was still at 3-5 with some warmth to the

joints. Better, but still pain. Still warmth. Still swelling. When we went back

in, she was switched to Celebrex and has made marked improvements. Her pain is

pretty good (though I have a hard time getting out of her a specific number).

Now..... the last month or so, she has been getting really tired and we have

noticed swelling in one leg only. About a half an inch difference from just

above the knee all the way down to the ankle. No noted warmth. but she does have

pain over the shin. I took her to primary care first. He also found a fairly

tender area behind the knee that she did not tell us about. Did a CBC, Sed Rate,

and CK that all came back normal. He is thinking possible shin splints but

cannot really explain the swelling, pain behind the knee or the fatigue. We are

going back to rheum, but her doc passed away in January and so it will be a

first visit with someone new.

A couple of questions for all of you: Could she be having a flare? Without the

warmth? Could the medicine be keeping the warmth at bay, but not working with

the pain or swelling? Could it be a side effect of the medicine? And, is there

anything really important we should be asking the new rheum?

Thanks for the input. I am kind of stumped on this.

Cheryl

[Guest guest]

Hi Cheryl. You've received some great advice already; I'm just jumping in to say

hi and welcome to the group. There is definitely a lot of experience and

practical advice here. I too hope that the new rheumy will be more aggressive in

your daughter's treatment. It is found that the earlier DMARD treatment is

started the less joint damage in general. My son used the NSAID Celebrex as well

because ibuprofen really hurt his stomach. He had no such issues once he started

the Celebrex. Once the Methotrexate was added he was able to stop taking the

Celebrex and his disease was under very good control.

The issues your daughter is having with being tired is fairly common with this

disease. Her body is constantly battling with itself, with her immune system

attacking the fluid in her joints or tendons (in the case of spondy) and that is

just exhausting. My son often flares with no noticeable warmth or redness. His

is more pain and some puffiness.

Please feel free to ask any questions you may have, and let us know how your

next appt goes. Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

c.vanallen

Sent: Monday, April 25, 2011 10:29 AM

Subject: Introduction

Hello,

I am new here and already learning through lurking. I am mother to a nearly 13yr

old with what we believe is arthritis. Not completely certain of the typing. She

also has celiac disease (as do her brother and I) and has been gluten free for 7

years now. She does Irish dance and just about 2 years ago, she was having

severe pain in her ankle. We figured perhaps an injury as she was gearing up for

St Pat's day festivities. When I took her to primary care, he told us

differently. Her joint was red, swollen and warm. As was the other side and her

knees, and her hands, and wrists and elbows. We got blood work and the rheum

consult. She is negative for her RA factor and Lupus. She did have high sed

rates showing inflammation. Her initial Lyme test was positive, but the longer

more specific test was completely negative. I have heard this is not uncommon in

RA. In watching her, she also had back pain and in her shoulders -- it is just

that those were not as bad as the other joints. She was ranking pain 7-8 and

sometimes in tears. Rheum doc was guessing either spondylo or polyarticular

types. Started her on Sulindac. She was on that for several months and seemed

like her pain was getting better. but then her dance instructor keyed me in to

the fact that she could not remember dance steps that she had been doing for

years. I started watching her more closely and it was rather scarey, she was

quite confused. I stopped the sulindac immediately. Back to the Rheum who

decided to just try higher amounts of ibuprofen at the time since other NSAIDS

were more likely to cause symptoms like we saw in the sulindac. She did ok on

that for a while, but then I started to key in that her stomach was beginning to

hurt her and pain on " good " days was still at 3-5 with some warmth to the

joints. Better, but still pain. Still warmth. Still swelling. When we went back

in, she was switched to Celebrex and has made marked improvements. Her pain is

pretty good (though I have a hard time getting out of her a specific number).

Now..... the last month or so, she has been getting really tired and we have

noticed swelling in one leg only. About a half an inch difference from just

above the knee all the way down to the ankle. No noted warmth. but she does have

pain over the shin. I took her to primary care first. He also found a fairly

tender area behind the knee that she did not tell us about. Did a CBC, Sed Rate,

and CK that all came back normal. He is thinking possible shin splints but

cannot really explain the swelling, pain behind the knee or the fatigue. We are

going back to rheum, but her doc passed away in January and so it will be a

first visit with someone new.

A couple of questions for all of you: Could she be having a flare? Without the

warmth? Could the medicine be keeping the warmth at bay, but not working with

the pain or swelling? Could it be a side effect of the medicine? And, is there

anything really important we should be asking the new rheum?

Thanks for the input. I am kind of stumped on this.

Cheryl