Remission for systemic JRA

[Guest guest]

I've never heard anything about remission statistics, or types of cycles. My daughter Abbie (12 systemic) has been sick since October 1999. She was diagnosed in Feb 2000, and has had some good spells during the summers, but never able to get less than 10 mg pred every other day. As we go along with this the other meds keep getting higher. She never gets as bad as when she was first sick (that lasted about 6 months), but she is never completely well. Always has had a little pain or a little rash, and each fall or early winter she "flares". She is currently on 20 mg pred, 30 mg mtx (sub q), 400 mg planquenel, 300 mg celebrex, 1mg folic acid and vitamins and calcium supplements. As of last week she is on a waiting list for enbrel.

She is very stubborn about not quitting anything, and will do things in pain rather than not do them. Which I think is good up to a point, because she will probably be living with some degree of pain for the rest of her life. She is a firm believer in getting on with it. She hates taking meds, but knows how she feels without them. All in all she has a positive attitude. We don't ever talk about "what if", because I don't think she really wants to know. Except occasional concerns about a wheelchair, which we get through.

I have often read that it is harder on the parents, and I fully believe this. Abbie is a different person than she would have been, but there have been many rewards to this walk we have undertaken. Sorry for writing the book, but every once in a while, I just have to ramble.

Good luck with your son. Hopefully you will see a "remission."

Christy

[Guest guest]

I think I'm getting the hang of this.....has anyone out there had a

child with systemic JRA do into a remission. If so, what was it

like? We of course, are praying for this to happen to . I've

learned that progress is slow going in this disease...baby steps.

Has anyone heard....for those facing systemic JRA....they fall into

these categories....40% monocyclical, 40% polycyclical and 20%

persistent? and the average length between flares in the

polycyclical is something like 72 months. I'd like to know more about

prognosis for these children.

[Guest guest]

Hi

I've had systemic JRA since I was 6, but I went into remission for a

few years and then it came back. Actually, originally I wasn't

diagnosed, and the systemic symptoms weren't so bad. When it came

back, there was no doubt that it was systemic. My mother thinks I was

never really in remission, but I think I was for at least 2 years and

maybe more. Anyway, I am 20 now. If you have any questions feel free

to email me or post here.

Elisheva

> I think I'm getting the hang of this.....has anyone out there had a

> child with systemic JRA do into a remission. If so, what was it

> like? We of course, are praying for this to happen to . I've

> learned that progress is slow going in this disease...baby steps.

> Has anyone heard....for those facing systemic JRA....they fall into

> these categories....40% monocyclical, 40% polycyclical and 20%

> persistent? and the average length between flares in the

> polycyclical is something like 72 months. I'd like to know more

about

> prognosis for these children.

[Guest guest]

I have read different statistics on systemic JRA. Then I read a very good

article which I believe, which said that they just don't have reliable

statistics for they haven't done long enough studies on the disease. My

daughter, n , age 13 has had the disease for about two and half years

now. After her initial flare things calmed down for about two years. She

wasn't in remission, but she was able to live a normal life and do lots of

after school activities. She flared again last month, so that would just be

24 months for the polycyclic type. She is back in school, but she is having

to slowly drop most if not all of her extracurricular activities. I feel

that every child is so different with this disease that it is hard to rely

on stats. I believe that the longer n goes on with this disease, the

more likely it will carry on into adulthood. Just my opinion though.

>From: " margueritewestfall " <mwestfal@...>

>Reply-

>

>Subject: Remission for systemic JRA

>Date: Tue, 05 Feb 2002 16:43:20 -0000

>

>I think I'm getting the hang of this.....has anyone out there had a

>child with systemic JRA do into a remission. If so, what was it

>like? We of course, are praying for this to happen to . I've

>learned that progress is slow going in this disease...baby steps.

>Has anyone heard....for those facing systemic JRA....they fall into

>these categories....40% monocyclical, 40% polycyclical and 20%

>persistent? and the average length between flares in the

>polycyclical is something like 72 months. I'd like to know more about

>prognosis for these children.

>

>

>

>

>

>

[Guest guest]

Hi Marguerite,

If a medicated remission counts, my son has had those. He hasn't been able to discontinue any meds but he's had several wonderful periods of going for a few weeks to a few months without having symptoms of active arthritis. Couldn't really say that until after he switched from oral to injectable methotrexate. Before then, it seemed very persistent. Since then, there have been times when he's told us that his arthritis feels like it has gone away. The opposite of a flare, I guess. At those times, it doesn't bother either of us that he still needs to take medicine everyday. I think that's just as good as a real remission, as long as the side effects from the meds aren't interfering. What I'd like is to try to get him weaned completely off steroids, which he's been taking constantly since May '95, and hope that his arthritis will still be as manageable with just the other meds he takes. After all he's been through, that seems like a realistic goal.

I do remember reading a report that had numbers sort of like the ones you've mentioned. It's been a while. I'm not sure. It's probably available in the group's message archives. Next time I'm there, I'll look for it. I can't remember hearing about going 72 months in between flares. That IS very interesting. If you have the report, please post it.

Aloha,

Georgina

I think I'm getting the hang of this.....has anyone out there had a child with systemic JRA do into a remission. If so, what was it like? We of course, are praying for this to happen to . I've learned that progress is slow going in this disease...baby steps. Has anyone heard....for those facing systemic JRA....they fall into these categories....40% monocyclical, 40% polycyclical and 20% persistent? and the average length between flares in the polycyclical is something like 72 months. I'd like to know more about prognosis for these children.

[Guest guest]

Hello,

Here are some abstracts of what I found in the litterature

It seems that remission may be dependant of the subtype of sJRA

Anton

1. LOMATER C, GERLONI V, GATTINARA M, MAZZOTTI J, CIMAZ R, FANTINI F: Systemic onset juvenile idiopathic arthritis: A retrospective study of 80 consecutive patients followed for 10 years. Rinsho Ganka 2000, 27:491-496.Organism:Dr. C. Lomater, Via Nuova 52, Villareggia (Torino) 10030Abstract: Objective. To investigate the relationships between systemic onset juvenile idiopathic arthritis disease activity, course of the disease, and functional class according to Steinbrocker. Methods. The records of all children with systemic onset juvenile arthritis (JA) according to the American College of Rheumatology criteria attending our center since 1971 with a minimum followup period of 3 years were reviewed. A cohort of 80 consecutive patients entered the study: 42 males, 38 females, mean age at onset 6.3 years (range 0.7-16), mean followup period 10.7 years (range 3-33). The cumulative duration of the active periods (CDAP) in months was calculated for every patient. Results. Three patterns of disease course were apparent: monocyclic (subtype I), intermittent (subtype II), and persistent (subtype III). At the last control the functional class and disease activity status were evaluated. In all subtype I patients (9 cases) the disease was in remission and no patient was in class II, III, or IV. In subtype II patients (27 cases), 16 were inactive or in remission and 6 in class III. In subtype III (44 cases) 21 were inactive or in remission and 17 were in class III or IV. The equation relating the Steinbrocker class to the CDAP was calculated considering the functional outcome as the dependent variable. The linear regression equation y = 0.0083 x + 1.266 was found with a correlation coefficient r = 0.586 (p < 0.0001). The majority of our patients were treated with disease modifying antirheumatic drugs, which in many cases were effective in reducing the duration of the active phases of disease. Conclusion. Systemic onset JA may present with different clinical courses; the functional outcome is always good in subtype I (monocyclic), but can be poor in subtypes II and III. The severity of disability evaluated according to Steinbrocker classes is dependent on the cumulative duration of the active periods of the diseaseInternet : PM:0010685819

2. MERINO R, GARCIA CJ: Clinical activity and functional status of 497 patients with childhood onset of chronic arthritis. A multicentric study. Revista Espanola de Reumatologia 1999, 26:46-53.Organism:Unidad de Reumatologia Pediatrica, Hospital Infantil La Paz, Paseo de la Castellana, 261, 28046, Madrid SpainAbstract: Objective: To determine clinical activity and functional status of childhood onset of chronic arthritis. Patients and method: Cross sectional multicentric study in January 1997 of patients with juvenile chronic arthritis (JCA) pauciarticular, polyarticular or systemic and juvenile spondyloarthropathy (JSpA) according to disease onset. Data were collected on a sheet, registered and then analyzed. The disease could be active, inactive with or without treatment or in remission (inactive without treatment for two years or more). Functional status was evaluated using Steinbrocker's et al functional classes. Results: Data of 497 chronic arthritis of 21 hospitals were received. The median of disease duration was 4 years. Of the 400 JCA 55% were pauciarticular, 23% polyarticular, 20% systemic and 2% probable systemic. Of the 97 JSpA 72 cases (75%) were undifferentiated JSpA. There were 171 patients (34%) with active disease, 145 (29%) with inactive disease in treatment, 91 (19%) with inactivedisease without treatment less than two years and 90 (18%) in remission. Two-hundred ninety five (59%) were in class I, 165 (33%), in class II, 30 (6%) in class III and 7 (2%) in class IV. In the comparative analysis between a groups polyarticular JCA turned out to be more active than pauciarticular and undifferentiated JSpA (p < 0.001) and polyarticular and systemic JCA showed the worst functional classes (p < 0.001). Conclusion: More than 30% of patients with childhood onset of chronic arthritis had active disease and a small but significant number of cases presented severe disability

3. MINDEN K, KIESSLING U, LISTING J, NIEWERTH M, DORING E, MEINCKE J, SCHONTUBE M, ZINK A: Prognosis of patients with juvenile chronic arthritis and juvenile spondyloarthropathy. Rinsho Ganka 2000, 27:2256-2263.Organism:Dr. K. Minden, Deutsches Rheuma-Forsch. Berlin, Hannoversche Str. 27, 10115 BerlinAbstract: Objective. Evaluation of the course and the prognosis of juvenile chronic arthritis (JCA) and juvenile spondyloarthropathy (JSpA). Methods. The entire medical histories of 171 patients with JCA or JSpA were reviewed. The study cohort comprised 102 patients with oligoarticular, 17 with systemic, and 24 with polyarticular onset of JCA; 28 patients had a SpA; 91 patients with JCA from a population based cohort were included in that study cohort. The mean period of follow-up was 7.4 years. The probability of remission was estimated by survival analysis methods (Kaplan-Meier method). Results. After a disease duration of 10 years the highest probability of complete remission was estimated for patients with oligoarticular or systemic onset of JCA (54% and 38%, respectively). In the oligoarthritis group with late onset of JCA, a lower probability of remission was found for the HLA-B27+ patients compared with HLA-B27- patients. Patients with polyarticular onset of JCA had the poorest prognosis, with a significantly lower probability of complete remission (15%) within 10 years, more secondary injuries, and a lower functional capacity at followup. Patients with JSpA showed a 17% probability of remission after a disease duration of 5 years and ranged between the remission rates for oligoarticular and polyarticular JCA. The estimated remission rates for the patients with JCA in the population based cohort and in the whole cohort were quite similar. Conclusion. Our data suggest a favorable prognosis for JCA and JSpA in general, but with differences among the subtypes. It seems that more than 50% of the patients with JCA and JSpA reach adulthood with active arthritis and need further rheumatological careMessage d'origine-----De : margueritewestfall [mailto:mwestfal@...]Envoyé : mardi 5 février 2002 17:43À : Objet : Remission for systemic JRAI think I'm getting the hang of this.....has anyone out there had a child with systemic JRA do into a remission. If so, what was it like? We of course, are praying for this to happen to . I've learned that progress is slow going in this disease...baby steps. Has anyone heard....for those facing systemic JRA....they fall into these categories....40% monocyclical, 40% polycyclical and 20% persistent? and the average length between flares in the polycyclical is something like 72 months. I'd like to know more about prognosis for these children.

[Guest guest]

Anton,

Bon Jour! How is Vivien doing? I hope he's well. What meds is he taking these days? And thank you so much, for sending these abstracts. Maybe it was you who originally presented similar studies to myself and Helge, when we had questions about long-term prognosis? These, however, are more recent. Will be very interesting to read.

Thanks again,

Georgina

Hello,

Here are some abstracts of what I found in the litterature

It seems that remission may be dependant of the subtype of sJRA

Anton

1. LOMATER C, GERLONI V, GATTINARA M, MAZZOTTI J, CIMAZ R, FANTINI F: Systemic onset juvenile idiopathic arthritis: A retrospective study of 80 consecutive patients followed for 10 years. Rinsho Ganka 2000, 27:491-496.Organism:Dr. C. Lomater, Via Nuova 52, Villareggia (Torino) 10030Abstract: Objective. To investigate the relationships between systemic onset juvenile idiopathic arthritis disease activity, course of the disease, and functional class according to Steinbrocker. Methods. The records of all children with systemic onset juvenile arthritis (JA) according to the American College of Rheumatology criteria attending our center since 1971 with a minimum followup period of 3 years were reviewed. A cohort of 80 consecutive patients entered the study: 42 males, 38 females, mean age at onset 6.3 years (range 0.7-16), mean followup period 10.7 years (range 3-33). The cumulative duration of the active periods (CDAP) in months was calculated for every patient. Results. Three patterns of disease course were apparent: monocyclic (subtype I), intermittent (subtype II), and persistent (subtype III). At the last control the functional class and disease activity status were evaluated. In all subtype I patients (9 cases) the disease was in remission and no patient was in class II, III, or IV. In subtype II patients (27 cases), 16 were inactive or in remission and 6 in class III. In subtype III (44 cases) 21 were inactive or in remission and 17 were in class III or IV. The equation relating the Steinbrocker class to the CDAP was calculated considering the functional outcome as the dependent variable. The linear regression equation y = 0.0083 x + 1.266 was found with a correlation coefficient r = 0.586 (p < 0.0001). The majority of our patients were treated with disease modifying antirheumatic drugs, which in many cases were effective in reducing the duration of the active phases of disease. Conclusion. Systemic onset JA may present with different clinical courses; the functional outcome is always good in subtype I (monocyclic), but can be poor in subtypes II and III. The severity of disability evaluated according to Steinbrocker classes is dependent on the cumulative duration of the active periods of the diseaseInternet : PM:0010685819

2. MERINO R, GARCIA CJ: Clinical activity and functional status of 497 patients with childhood onset of chronic arthritis. A multicentric study. Revista Espanola de Reumatologia 1999, 26:46-53.Organism:Unidad de Reumatologia Pediatrica, Hospital Infantil La Paz, Paseo de la Castellana, 261, 28046, Madrid SpainAbstract: Objective: To determine clinical activity and functional status of childhood onset of chronic arthritis. Patients and method: Cross sectional multicentric study in January 1997 of patients with juvenile chronic arthritis (JCA) pauciarticular, polyarticular or systemic and juvenile spondyloarthropathy (JSpA) according to disease onset. Data were collected on a sheet, registered and then analyzed. The disease could be active, inactive with or without treatment or in remission (inactive without treatment for two years or more). Functional status was evaluated using Steinbrocker's et al functional classes. Results: Data of 497 chronic arthritis of 21 hospitals were received. The median of disease duration was 4 years. Of the 400 JCA 55% were pauciarticular, 23% polyarticular, 20% systemic and 2% probable systemic. Of the 97 JSpA 72 cases (75%) were undifferentiated JSpA. There were 171 patients (34%) with active disease, 145 (29%) with inactive disease in treatment, 91 (19%) with inactivedisease without treatment less than two years and 90 (18%) in remission. Two-hundred ninety five (59%) were in class I, 165 (33%), in class II, 30 (6%) in class III and 7 (2%) in class IV. In the comparative analysis between a groups polyarticular JCA turned out to be more active than pauciarticular and undifferentiated JSpA (p < 0.001) and polyarticular and systemic JCA showed the worst functional classes (p < 0.001). Conclusion: More than 30% of patients with childhood onset of chronic arthritis had active disease and a small but significant number of cases presented severe disability

3. MINDEN K, KIESSLING U, LISTING J, NIEWERTH M, DORING E, MEINCKE J, SCHONTUBE M, ZINK A: Prognosis of patients with juvenile chronic arthritis and juvenile spondyloarthropathy. Rinsho Ganka 2000, 27:2256-2263.Organism:Dr. K. Minden, Deutsches Rheuma-Forsch. Berlin, Hannoversche Str. 27, 10115 BerlinAbstract: Objective. Evaluation of the course and the prognosis of juvenile chronic arthritis (JCA) and juvenile spondyloarthropathy (JSpA). Methods. The entire medical histories of 171 patients with JCA or JSpA were reviewed. The study cohort comprised 102 patients with oligoarticular, 17 with systemic, and 24 with polyarticular onset of JCA; 28 patients had a SpA; 91 patients with JCA from a population based cohort were included in that study cohort. The mean period of follow-up was 7.4 years. The probability of remission was estimated by survival analysis methods (Kaplan-Meier method). Results. After a disease duration of 10 years the highest probability of complete remission was estimated for patients with oligoarticular or systemic onset of JCA (54% and 38%, respectively). In the oligoarthritis group with late onset of JCA, a lower probability of remission was found for the HLA-B27+ patients compared with HLA-B27- patients. Patients with polyarticular onset of JCA had the poorest prognosis, with a significantly lower probability of complete remission (15%) within 10 years, more secondary injuries, and a lower functional capacity at followup. Patients with JSpA showed a 17% probability of remission after a disease duration of 5 years and ranged between the remission rates for oligoarticular and polyarticular JCA. The estimated remission rates for the patients with JCA in the population based cohort and in the whole cohort were quite similar. Conclusion. Our data suggest a favorable prognosis for JCA and JSpA in general, but with differences among the subtypes. It seems that more than 50% of the patients with JCA and JSpA reach adulthood with active arthritis and need further rheumatological care

[Guest guest]

Hello Georgina,

Viven is now 13, his disease is under control but he still takes lots of drugs: Nsaids, 10mg/day corticoids, cyclosporin, embrel (not doing much though) and growth hormone.

He uses a wheelchair as he has hip problems (avascular necrosis)

We had a meeting of european associations on january 19 and started a network to exchange information at european level (see www.enca.org)

Anton

Vice president kourir association

http://www.kourir.org/indexa.htm

-----Message d'origine-----De : Georgina [mailto:gmckin@...]Envoyé : mardi 5 février 2002 22:32À : Objet : Re: Remission for systemic JRA

Anton,

Bon Jour! How is Vivien doing? I hope he's well. What meds is he taking these days? And thank you so much, for sending these abstracts. Maybe it was you who originally presented similar studies to myself and Helge, when we had questions about long-term prognosis? These, however, are more recent. Will be very interesting to read.

Thanks again,

Georgina

Hello,

Here are some abstracts of what I found in the litterature

It seems that remission may be dependant of the subtype of sJRA

Anton

1. LOMATER C, GERLONI V, GATTINARA M, MAZZOTTI J, CIMAZ R, FANTINI F: Systemic onset juvenile idiopathic arthritis: A retrospective study of 80 consecutive patients followed for 10 years. Rinsho Ganka 2000, 27:491-496.Organism:Dr. C. Lomater, Via Nuova 52, Villareggia (Torino) 10030Abstract: Objective. To investigate the relationships between systemic onset juvenile idiopathic arthritis disease activity, course of the disease, and functional class according to Steinbrocker. Methods. The records of all children with systemic onset juvenile arthritis (JA) according to the American College of Rheumatology criteria attending our center since 1971 with a minimum followup period of 3 years were reviewed. A cohort of 80 consecutive patients entered the study: 42 males, 38 females, mean age at onset 6.3 years (range 0.7-16), mean followup period 10.7 years (range 3-33). The cumulative duration of the active periods (CDAP) in months was calculated for every patient. Results. Three patterns of disease course were apparent: monocyclic (subtype I), intermittent (subtype II), and persistent (subtype III). At the last control the functional class and disease activity status were evaluated. In all subtype I patients (9 cases) the disease was in remission and no patient was in class II, III, or IV. In subtype II patients (27 cases), 16 were inactive or in remission and 6 in class III. In subtype III (44 cases) 21 were inactive or in remission and 17 were in class III or IV. The equation relating the Steinbrocker class to the CDAP was calculated considering the functional outcome as the dependent variable. The linear regression equation y = 0.0083 x + 1.266 was found with a correlation coefficient r = 0.586 (p < 0.0001). The majority of our patients were treated with disease modifying antirheumatic drugs, which in many cases were effective in reducing the duration of the active phases of disease. Conclusion. Systemic onset JA may present with different clinical courses; the functional outcome is always good in subtype I (monocyclic), but can be poor in subtypes II and III. The severity of disability evaluated according to Steinbrocker classes is dependent on the cumulative duration of the active periods of the diseaseInternet : PM:0010685819

2. MERINO R, GARCIA CJ: Clinical activity and functional status of 497 patients with childhood onset of chronic arthritis. A multicentric study. Revista Espanola de Reumatologia 1999, 26:46-53.Organism:Unidad de Reumatologia Pediatrica, Hospital Infantil La Paz, Paseo de la Castellana, 261, 28046, Madrid SpainAbstract: Objective: To determine clinical activity and functional status of childhood onset of chronic arthritis. Patients and method: Cross sectional multicentric study in January 1997 of patients with juvenile chronic arthritis (JCA) pauciarticular, polyarticular or systemic and juvenile spondyloarthropathy (JSpA) according to disease onset. Data were collected on a sheet, registered and then analyzed. The disease could be active, inactive with or without treatment or in remission (inactive without treatment for two years or more). Functional status was evaluated using Steinbrocker's et al functional classes. Results: Data of 497 chronic arthritis of 21 hospitals were received. The median of disease duration was 4 years. Of the 400 JCA 55% were pauciarticular, 23% polyarticular, 20% systemic and 2% probable systemic. Of the 97 JSpA 72 cases (75%) were undifferentiated JSpA. There were 171 patients (34%) with active disease, 145 (29%) with inactive disease in treatment, 91 (19%) with inactivedisease without treatment less than two years and 90 (18%) in remission. Two-hundred ninety five (59%) were in class I, 165 (33%), in class II, 30 (6%) in class III and 7 (2%) in class IV. In the comparative analysis between a groups polyarticular JCA turned out to be more active than pauciarticular and undifferentiated JSpA (p < 0.001) and polyarticular and systemic JCA showed the worst functional classes (p < 0.001). Conclusion: More than 30% of patients with childhood onset of chronic arthritis had active disease and a small but significant number of cases presented severe disability

3. MINDEN K, KIESSLING U, LISTING J, NIEWERTH M, DORING E, MEINCKE J, SCHONTUBE M, ZINK A: Prognosis of patients with juvenile chronic arthritis and juvenile spondyloarthropathy. Rinsho Ganka 2000, 27:2256-2263.Organism:Dr. K. Minden, Deutsches Rheuma-Forsch. Berlin, Hannoversche Str. 27, 10115 BerlinAbstract: Objective. Evaluation of the course and the prognosis of juvenile chronic arthritis (JCA) and juvenile spondyloarthropathy (JSpA). Methods. The entire medical histories of 171 patients with JCA or JSpA were reviewed. The study cohort comprised 102 patients with oligoarticular, 17 with systemic, and 24 with polyarticular onset of JCA; 28 patients had a SpA; 91 patients with JCA from a population based cohort were included in that study cohort. The mean period of follow-up was 7.4 years. The probability of remission was estimated by survival analysis methods (Kaplan-Meier method). Results. After a disease duration of 10 years the highest probability of complete remission was estimated for patients with oligoarticular or systemic onset of JCA (54% and 38%, respectively). In the oligoarthritis group with late onset of JCA, a lower probability of remission was found for the HLA-B27+ patients compared with HLA-B27- patients. Patients with polyarticular onset of JCA had the poorest prognosis, with a significantly lower probability of complete remission (15%) within 10 years, more secondary injuries, and a lower functional capacity at followup. Patients with JSpA showed a 17% probability of remission after a disease duration of 5 years and ranged between the remission rates for oligoarticular and polyarticular JCA. The estimated remission rates for the patients with JCA in the population based cohort and in the whole cohort were quite similar. Conclusion. Our data suggest a favorable prognosis for JCA and JSpA in general, but with differences among the subtypes. It seems that more than 50% of the patients with JCA and JSpA reach adulthood with active arthritis and need further rheumatological care

[Guest guest]

My daughter was in a medicated remission for almost three years. She

is now in a flare again. She changed medications due to her

developing an allergy to Enbrel.

> I think I'm getting the hang of this.....has anyone out there had a

> child with systemic JRA do into a remission. If so, what was it

> like? We of course, are praying for this to happen to . I've

> learned that progress is slow going in this disease...baby steps.

> Has anyone heard....for those facing systemic JRA....they fall into

> these categories....40% monocyclical, 40% polycyclical and 20%

> persistent? and the average length between flares in the

> polycyclical is something like 72 months. I'd like to know more

about

> prognosis for these children.