Re: When did Dr. start Meds

[Guest guest]

Jeannine,

I hope you get some relief for Sadie soon. When Robbie, who has SoJRA, flares,

he doesn't always have swelling in the joints, sometimes he has pain in specific

joints, and other times pain " all over " walking stooped and stiff, if he can

walk... He was started on steriods before he was diagnosed for a flare of his

kidney problem (Minimal Change Disease) which helped his jra symptoms as well,

it was during his taper from them that his jra symptoms worsened & they could

see visible difference in his overall condition when he went to every other day

doses. I think it actually helped in the diagnosis - seeing the difference the

steriods made.

Have you tried to get a second opinion?

Val

Rob's Mom (6,systemic)

[Guest guest]

Hi, Jeanine. started Celebrex on his first visit. No major

swelling, no elevated SED. A lot of pain and stiffness. His rheumy

diagnosed by his symptoms.He began physical therapy as well. Celebrex

was increased for a few months until maxed, then sulfasalazine was

added. Waited about 6-7 months and did not get the significant relief dr

was looking for so she replaced the sulfasalzine with methotrexate. He

responded well and has been much better since the MTX, but lately has

begun to have some more symptoms. Does your daughter see a pediatric

rheumy? It sounds to me like a second opinion is in order if the dr says

she must have swelling to have JRA. does have some swelling - but

not all the time. His main symptom was stiffness and pain. I would see

if you could get to a Children's Hospital of some sort to get a second

opinion. Remember, the goal is to get the child pain free. Ideally

without meds, but to start with the meds are necessary. Too many NSAIDS

for too long can cause an ulcer. That is one reason why Chris' drs

wanted the Celebrex reduced. He now only needs it occasionally. I hope

Sadie gets some relief soon. Good luck to you, Michele (16,pauci &

spondy)

When did Dr. start Meds

Did you Dr. await all test results before they started treating the

symptoms?

Sadie has had arthritis pain and rashes for many years; however, she

has not had the hot swelling joints. Naproxen, Celebrex, Vioxx

Sulfate drugs have been tried to none of them helping her. Her Dr.

calles her an enigma becuase she does not have the swelling joints,

but her pain has always been in the same places for 5 years. The Dr.

does not seems to take her as serious becuase she does not have joint

swelling. Her blood work showes elevated Sed, Muscle and Liver

enzymes. She has a flare every spring and it get worse each year.

The flare this year started with her stomach (ulcer found), which

after several months has calmed down some. She is taking Tylenol and

Ibup. right now for her joint pain.

The pain seems to be really intense and the tylenol is doing

nothing. We are trying other pain management likes stretch, but when

you can't got to sleep and you are up at midnight doing stretch and

taking warm shower for some relief it would seem the could start

trying something. I know if they started some treatements it could

mask what is going on, but I hate seeing her in pain.

The Rheumy is not sure what is wrong, but is going a muscle tissue

biospy checking for vasulitis and metoblic problems. The soonest

they could do the biopsy is April 21, and the Surgeon said is could

take another month to get all results. Sadie, cant wait another 2

months for some relief, much less 2 weeks for Rheumy appointment.

What do you think I should do?

Jeanine

[Guest guest]

Her Dr. calles her an enigma because she does not have the swelling

joints,

but her pain has always been in the same places for 5 years. The Dr.

does not seems to take her as serious because she does not have joint

swelling.

************************************

Jeanine,

I share your annoyance ! My son has no swelling either,,and if he ever

does have swelling,,the rheumy can never seem to get him in. Our last

rheumy appointment,,the rheumy casually said that Logan didn't have

arthritis anymore,,I asked what she meant,and she said that since he

doesn't have anymore swelling,,that he was in remission !! I asked her

why he was in pain everyday,,and she kinda brushed that off,,and said

that was from the hypermobility.

What is vasulitis and metabolic problems ? What kind of Dr checks for

those,,and what are the symptoms ?

I'm sorry I don't have any advice,for you,,but I just wanted to tell

you that ya'll are in my thoughts and prayers.

Kim and Logan 6 poly,,connective tissue disorder & etc,etc

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[Guest guest]

Jeanine:Might be time for a second opinion with a ped rheumy if one is available.

My son has JAS and always doesn't have swelling. One of the docs that saw him said there was nothing wrong with him, that he had 'episodic arthritis' and that the episode was over. This was when he was having severe pain and stiffness. The next rheumy found all sorts of signs besides swelling. Additionally, the bone scan was the final kicker...it showed areas of inflammation that did not show up on other studies.

and Rob 14 Spondy

On Mon, 29 Mar 2004 14:34:13 -0600 "Tepper, Michele" <MTepper@...> writes:

Hi, Jeanine. started Celebrex on his first visit. No majorswelling, no elevated SED. A lot of pain and stiffness. His rheumydiagnosed by his symptoms.He began physical therapy as well. Celebrexwas increased for a few months until maxed, then sulfasalazine wasadded. Waited about 6-7 months and did not get the significant relief drwas looking for so she replaced the sulfasalzine with methotrexate. Heresponded well and has been much better since the MTX, but lately hasbegun to have some more symptoms. Does your daughter see a pediatricrheumy? It sounds to me like a second opinion is in order if the dr saysshe must have swelling to have JRA. does have some swelling - butnot all the time. His main symptom was stiffness and pain. I would seeif you could get to a Children's Hospital of some sort to get a secondopinion. Remember, the goal is to get the child pain free. Ideallywithout meds, but to start with the meds are necessary. Too many NSAIDSfor too long can cause an ulcer. That is one reason why Chris' drswanted the Celebrex reduced. He now only needs it occasionally. I hopeSadie gets some relief soon. Good luck to you, Michele (16,pauci & spondy)-----Original Message-----From: maldomaldo [mailto:maldomaldo@...] Sent: Monday, March 29, 2004 11:15 AM Subject: When did Dr. start MedsDid you Dr. await all test results before they started treating the symptoms?Sadie has had arthritis pain and rashes for many years; however, she has not had the hot swelling joints. Naproxen, Celebrex, Vioxx Sulfate drugs have been tried to none of them helping her. Her Dr. calles her an enigma becuase she does not have the swelling joints, but her pain has always been in the same places for 5 years. The Dr. does not seems to take her as serious becuase she does not have joint swelling. Her blood work showes elevated Sed, Muscle and Liver enzymes. She has a flare every spring and it get worse each year. The flare this year started with her stomach (ulcer found), which after several months has calmed down some. She is taking Tylenol and Ibup. right now for her joint pain. The pain seems to be really intense and the tylenol is doing nothing. We are trying other pain management likes stretch, but when you can't got to sleep and you are up at midnight doing stretch and taking warm shower for some relief it would seem the could start trying something. I know if they started some treatements it could mask what is going on, but I hate seeing her in pain. The Rheumy is not sure what is wrong, but is going a muscle tissue biospy checking for vasulitis and metoblic problems. The soonest they could do the biopsy is April 21, and the Surgeon said is could take another month to get all results. Sadie, cant wait another 2 months for some relief, much less 2 weeks for Rheumy appointment.What do you think I should do?Jeanine

[Guest guest]

Jeanie. I sure hope are able to do something! Two months is WAAY too

long for these little angels to wait. Is there another rhuemy you

can see? I know how long it take to just get an appointment, but

maybe a second opinion would help. I am not sure. I just can't

believe that they would make her wait so very long. Hang in there.

Keep us updated.

Alia and Caroline, age 2, pauci and uveitis

> Did you Dr. await all test results before they started treating

the

> symptoms?

>

> Sadie has had arthritis pain and rashes for many years; however,

she

> has not had the hot swelling joints. Naproxen, Celebrex, Vioxx

> Sulfate drugs have been tried to none of them helping her. Her

Dr.

> calles her an enigma becuase she does not have the swelling

joints,

> but her pain has always been in the same places for 5 years. The

Dr.

> does not seems to take her as serious becuase she does not have

joint

> swelling. Her blood work showes elevated Sed, Muscle and Liver

> enzymes. She has a flare every spring and it get worse each year.

> The flare this year started with her stomach (ulcer found), which

> after several months has calmed down some. She is taking Tylenol

and

> Ibup. right now for her joint pain.

>

> The pain seems to be really intense and the tylenol is doing

> nothing. We are trying other pain management likes stretch, but

when

> you can't got to sleep and you are up at midnight doing stretch

and

> taking warm shower for some relief it would seem the could start

> trying something. I know if they started some treatements it

could

> mask what is going on, but I hate seeing her in pain.

>

> The Rheumy is not sure what is wrong, but is going a muscle tissue

> biospy checking for vasulitis and metoblic problems. The soonest

> they could do the biopsy is April 21, and the Surgeon said is

could

> take another month to get all results. Sadie, cant wait another 2

> months for some relief, much less 2 weeks for Rheumy appointment.

>

> What do you think I should do?

>

> Jeanine