Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 I guess I should say the part that scares me the most, is the fluid around his heart. I can't believe how sick he became and how quickly it happened. His symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th he had kidney damage and by the 24th the labs were showing liver damage and on the 27th he had a moderate peripcardial effusion, which was not there on the 22nd. Now I sit here and watch and wonder what is going on in his body. Amy - avery 17 sojra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 You know, I wonder......... I read a study last month posted on here which got me thinking. It was on cytomegalovirus. but it mentioned macrophage activation syndrome. It was from Israel, and it said that some believe that up to 50% of systemics have occult MAS. Occult means hidden. So it might show up on labs, but they might not have the outward signs of it. Then I asked our ped rheumy about it. He said many rheumys believe, and Carol Wallace at Seattle Children's is one, that many systemics are right on the line of MAS. The labs get out of whack. The liver, the kidneys, the platelets. My research has led me to believe that only about 7% of systemics get MAS, but some rheumys think it is much higher and may approach that 50% mark. When you mentioned Avery's liver and kidney, I started to think. n's started to go when she had MAS. And for the first time ever in the disease she got fluid around her heart. Now some systemics get fluid around the heart without having MAS. The first line of defense of MAS is high dose steroids. Specifically, pulsed steroids. n got 1000mg a day for 5 days. But that isn't what pulled her out of her distress. It was cyclosporine. (n, 21, systemic) On Oct 2, 2010, at 3:10 PM, Amy Spurger wrote: > I guess I should say the part that scares me the most, is the fluid around his > heart. I can't believe how sick he became and how quickly it happened. His > symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th he > had kidney damage and by the 24th the labs were showing liver damage and on the > 27th he had a moderate peripcardial effusion, which was not there on the 22nd. > Now I sit here and watch and wonder what is going on in his body. > > Amy - avery 17 sojra > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 Thanks I'm going to research and then ask the dr wednesday. We got pulse for 3 days this week. Amy - Avery 17 systemic ________________________________ From: Price <bc.price@...> Sent: Sat, October 2, 2010 5:22:25 PM Subject: Re: The part that scares me You know, I wonder......... I read a study last month posted on here which got me thinking. It was on cytomegalovirus. but it mentioned macrophage activation syndrome. It was from Israel, and it said that some believe that up to 50% of systemics have occult MAS. Occult means hidden. So it might show up on labs, but they might not have the outward signs of it. Then I asked our ped rheumy about it. He said many rheumys believe, and Carol Wallace at Seattle Children's is one, that many systemics are right on the line of MAS. The labs get out of whack. The liver, the kidneys, the platelets. My research has led me to believe that only about 7% of systemics get MAS, but some rheumys think it is much higher and may approach that 50% mark. When you mentioned Avery's liver and kidney, I started to think. n's started to go when she had MAS. And for the first time ever in the disease she got fluid around her heart. Now some systemics get fluid around the heart without having MAS. The first line of defense of MAS is high dose steroids. Specifically, pulsed steroids. n got 1000mg a day for 5 days. But that isn't what pulled her out of her distress. It was cyclosporine. (n, 21, systemic) On Oct 2, 2010, at 3:10 PM, Amy Spurger wrote: > I guess I should say the part that scares me the most, is the fluid around his > heart. I can't believe how sick he became and how quickly it happened. His > symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th he > had kidney damage and by the 24th the labs were showing liver damage and on the > > 27th he had a moderate peripcardial effusion, which was not there on the 22nd. > Now I sit here and watch and wonder what is going on in his body. > > Amy - avery 17 sojra > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 I am sure the doc would be on top of it. Steroids usually do the trick if he is borderline of going into it. (n, 21, systemic and MAS survivor) On Oct 2, 2010, at 3:34 PM, Amy Spurger wrote: > Thanks I'm going to research and then ask the dr wednesday. We got pulse > for 3 days this week. > Amy - Avery 17 systemic > > ________________________________ > From: Price <bc.price@...> > > Sent: Sat, October 2, 2010 5:22:25 PM > Subject: Re: The part that scares me > > You know, I wonder......... > > I read a study last month posted on here which got me thinking. It was on > cytomegalovirus. but it mentioned macrophage activation syndrome. It was from > Israel, and it said that some believe that up to 50% of systemics have occult > MAS. Occult means hidden. So it might show up on labs, but they might not have > the outward signs of it. Then I asked our ped rheumy about it. He said many > rheumys believe, and Carol Wallace at Seattle Children's is one, that many > systemics are right on the line of MAS. The labs get out of whack. The liver, > the kidneys, the platelets. My research has led me to believe that only about > 7% of systemics get MAS, but some rheumys think it is much higher and may > approach that 50% mark. > > When you mentioned Avery's liver and kidney, I started to think. n's > started to go when she had MAS. And for the first time ever in the disease she > got fluid around her heart. Now some systemics get fluid around the heart > without having MAS. The first line of defense of MAS is high dose steroids. > Specifically, pulsed steroids. n got 1000mg a day for 5 days. But that > isn't what pulled her out of her distress. It was cyclosporine. (n, > 21, systemic) > > On Oct 2, 2010, at 3:10 PM, Amy Spurger wrote: > > > I guess I should say the part that scares me the most, is the fluid around his > > > heart. I can't believe how sick he became and how quickly it happened. His > > symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th he > > > had kidney damage and by the 24th the labs were showing liver damage and on the > > > > 27th he had a moderate peripcardial effusion, which was not there on the 22nd. > > > Now I sit here and watch and wonder what is going on in his body. > > > > Amy - avery 17 sojra > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 That might explain why they keep doing pt's and ptt's. lol It does sound a lot like him and it also sounds like the dr's are watching for it. Amy - avery 17 systemic ________________________________ From: Price <bc.price@...> Sent: Sat, October 2, 2010 5:37:31 PM Subject: Re: The part that scares me I am sure the doc would be on top of it. Steroids usually do the trick if he is borderline of going into it. (n, 21, systemic and MAS survivor) On Oct 2, 2010, at 3:34 PM, Amy Spurger wrote: > Thanks I'm going to research and then ask the dr wednesday. We got pulse > for 3 days this week. > Amy - Avery 17 systemic > > ________________________________ > From: Price <bc.price@...> > > Sent: Sat, October 2, 2010 5:22:25 PM > Subject: Re: The part that scares me > > You know, I wonder......... > > I read a study last month posted on here which got me thinking. It was on > cytomegalovirus. but it mentioned macrophage activation syndrome. It was from > Israel, and it said that some believe that up to 50% of systemics have occult > MAS. Occult means hidden. So it might show up on labs, but they might not have > the outward signs of it. Then I asked our ped rheumy about it. He said many > rheumys believe, and Carol Wallace at Seattle Children's is one, that many > systemics are right on the line of MAS. The labs get out of whack. The liver, > the kidneys, the platelets. My research has led me to believe that only about > 7% of systemics get MAS, but some rheumys think it is much higher and may > approach that 50% mark. > > When you mentioned Avery's liver and kidney, I started to think. n's > started to go when she had MAS. And for the first time ever in the disease she > got fluid around her heart. Now some systemics get fluid around the heart > without having MAS. The first line of defense of MAS is high dose steroids. > Specifically, pulsed steroids. n got 1000mg a day for 5 days. But that > isn't what pulled her out of her distress. It was cyclosporine. (n, > 21, systemic) > > On Oct 2, 2010, at 3:10 PM, Amy Spurger wrote: > > > I guess I should say the part that scares me the most, is the fluid around >his > > > > heart. I can't believe how sick he became and how quickly it happened. His > > symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th >he > > > > had kidney damage and by the 24th the labs were showing liver damage and on >the > > > > > 27th he had a moderate peripcardial effusion, which was not there on the >22nd. > > > > Now I sit here and watch and wonder what is going on in his body. > > > > Amy - avery 17 sojra > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 Let your rheumy know what is going through your head. I know it's a scary process. I do not have systemic arthritis but I know enough about it to say that its scary. I hope your little one gets better soon. Prayers and best wishes Xoxo Shea Sent from my iPad On Oct 2, 2010, at 6:10 PM, Amy Spurger <mom2anz@...> wrote: I guess I should say the part that scares me the most, is the fluid around his heart. I can't believe how sick he became and how quickly it happened. His symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th he had kidney damage and by the 24th the labs were showing liver damage and on the 27th he had a moderate peripcardial effusion, which was not there on the 22nd. Now I sit here and watch and wonder what is going on in his body. Amy - avery 17 sojra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 I've got two standing lab orders for - the routine one (every 3-4 weeks) for the CBC, ESR, and CRP. We also do a liver panel on that one (CMP). BUT since they thought was borderline MAS a few months ago we also have the second standing order for if she is ever really sick - it includes PT, PTT, ferritin, and fibrinogen. Sometimes they watch D-dimer as well. Good luck with the appointment! The pericarditis is scary, especially in how it can sneak up quickly. It sounds like Avery's getting really great care Amy, I'm so glad. Keep in touch. nn (, 9, systemic) > > > > > I guess I should say the part that scares me the most, is the fluid around > >his > > > > > > > heart. I can't believe how sick he became and how quickly it happened. His > > > symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th > >he > > > > > > > had kidney damage and by the 24th the labs were showing liver damage and on > >the > > > > > > > > 27th he had a moderate peripcardial effusion, which was not there on the > >22nd. > > > > > > > Now I sit here and watch and wonder what is going on in his body. > > > > > > Amy - avery 17 sojra > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 Hi Amy-  I think that is really on the money (as usual) ...... and i wanted to add that in the original trials of Actemra (tocilizumab) in Japan, it worked well on many kids who had suffered from MAS...... but of course high dose steroids and cyclosporine are the number one defense.  And as a side note - I think the $250 K for rilonacept is probably pretty accurate, as crazy as that seems. When we were in the trial... things weren't going great, but they weren't terrible either. We were sort of out of choices at the time... and I would not have chosen to discontinue if given a choice. But the drug company decided to halt the trial for systemic kids, and pursue FDA approval for periodic fever syndrome only. They told me to come in and return all of my remaining drug immediately..... and then I learned that they were going to market the drug for over $200K. Wow.......  That being said - if it worked well, I wouldn't really care how much it cost.....  Colleen  From: Amy Spurger <mom2anz@...> Subject: The part that scares me Date: Saturday, October 2, 2010, 3:10 PM  I guess I should say the part that scares me the most, is the fluid around his heart. I can't believe how sick he became and how quickly it happened. His symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th he had kidney damage and by the 24th the labs were showing liver damage and on the 27th he had a moderate peripcardial effusion, which was not there on the 22nd. Now I sit here and watch and wonder what is going on in his body. Amy - avery 17 sojra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 I know about the PT and PTT and of the common ones.That is great they are tracking those.The PT and PTT are blood clotting tests which you need to know in case of surgery.In Avery's case keeping track of the Ferritan and Fibrinogen are realy important.MASS is a parents worst nightmare. Much love and many prayers, Becki and 12 systemic onset ________________________________ From: nn <rosannwinn@...> Sent: Sat, October 2, 2010 7:13:43 PM Subject: Re: The part that scares me I've got two standing lab orders for - the routine one (every 3-4 weeks) for the CBC, ESR, and CRP. We also do a liver panel on that one (CMP). BUT since they thought was borderline MAS a few months ago we also have the second standing order for if she is ever really sick - it includes PT, PTT, ferritin, and fibrinogen. Sometimes they watch D-dimer as well. Good luck with the appointment! The pericarditis is scary, especially in how it can sneak up quickly. It sounds like Avery's getting really great care Amy, I'm so glad. Keep in touch. nn (, 9, systemic) > > > > > I guess I should say the part that scares me the most, is the fluid around > >his > > > > > > > heart. I can't believe how sick he became and how quickly it happened. His > > > symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th > > >he > > > > > > > had kidney damage and by the 24th the labs were showing liver damage and on > > >the > > > > > > > > 27th he had a moderate peripcardial effusion, which was not there on the > >22nd. > > > > > > > Now I sit here and watch and wonder what is going on in his body. > > > > > > Amy - avery 17 sojra > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 Yep, it is scary when your child goes from ok to MAJOR pain,fever and rash within a weeks time.Sounds like we got a bit luckier then you as far as within 21 days no major organs were involved but also got to start high doses of pred. I tried staying away from this list because my son is doing so well but I keep being drawn back.There is a realy GREAT chance of a combo of meds that will bring relief and ultimately remisssion. AS Much as it may scare you slam Artrhur hard and fast.You can't mix Biologicals but you can gradualy max out on sub q injections of 25mg Methotrexate and take the full adult dose of Kiniret and take 300mg of Plaquenil a day.Once things settle down you can drain and inject the stubborn joints with steroids. From: Amy Spurger <mom2anz@...> Sent: Sat, October 2, 2010 5:10:00 PM Subject: The part that scares me I guess I should say the part that scares me the most, is the fluid around his heart. I can't believe how sick he became and how quickly it happened. His symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th he had kidney damage and by the 24th the labs were showing liver damage and on the 27th he had a moderate peripcardial effusion, which was not there on the 22nd. Now I sit here and watch and wonder what is going on in his body. Amy - avery 17 sojra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 And we are glad you keep being drawn back. It gives us hope for our children. ( n,21, systemic) Sent from my iPod On Oct 2, 2010, at 9:17 PM, Becki Larson <sojramom@...> wrote: > Yep, it is scary when your child goes from ok to MAJOR pain,fever > and rash > within a weeks time.Sounds like we got a bit luckier then you as far > as within > 21 days no major organs were involved but also got to start > high doses of > pred. I tried staying away from this list because my son is doing so > well but I > keep being drawn back.There is a realy GREAT chance of a combo of > meds that will > bring relief and ultimately remisssion. AS Much as it may scare you > slam Artrhur > hard and fast.You can't mix Biologicals but you can gradualy max out > on sub q > injections of 25mg Methotrexate and take the full adult dose of > Kiniret and take > 300mg of Plaquenil a day.Once things settle down you can drain and > inject the > stubborn joints with steroids. > From: Amy Spurger <mom2anz@...> > > Sent: Sat, October 2, 2010 5:10:00 PM > Subject: The part that scares me > > I guess I should say the part that scares me the most, is the fluid > around his > heart. I can't believe how sick he became and how quickly it > happened. His > symptoms started on Sept 5 and on the 6th his labs were normal. By > the 13th he > had kidney damage and by the 24th the labs were showing liver damage > and on the > 27th he had a moderate peripcardial effusion, which was not there on > the 22nd. > Now I sit here and watch and wonder what is going on in his body. > > Amy - avery 17 sojra > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 they told me his ferriton was up to 30,000 at one point but now down to 5,000. I am sure one day I will know what all this means. lol amy - avery 17 systemic ________________________________ From: nn <rosannwinn@...> Sent: Sat, October 2, 2010 7:13:43 PM Subject: Re: The part that scares me I've got two standing lab orders for - the routine one (every 3-4 weeks) for the CBC, ESR, and CRP. We also do a liver panel on that one (CMP). BUT since they thought was borderline MAS a few months ago we also have the second standing order for if she is ever really sick - it includes PT, PTT, ferritin, and fibrinogen. Sometimes they watch D-dimer as well. Good luck with the appointment! The pericarditis is scary, especially in how it can sneak up quickly. It sounds like Avery's getting really great care Amy, I'm so glad. Keep in touch. nn (, 9, systemic) > > > > > I guess I should say the part that scares me the most, is the fluid around > >his > > > > > > > heart. I can't believe how sick he became and how quickly it happened. His > > > symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th > > >he > > > > > > > had kidney damage and by the 24th the labs were showing liver damage and on > > >the > > > > > > > > 27th he had a moderate peripcardial effusion, which was not there on the > >22nd. > > > > > > > Now I sit here and watch and wonder what is going on in his body. > > > > > > Amy - avery 17 sojra > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 Bless you , Your experience and ordeal with your own precious child may save a life.When I joined I know she was older then .Either way you did a fine job and have a smart,beautiful, intelligent daughter who will make a big impact on our world. ________________________________ From: Amy Spurger <mom2anz@...> Sent: Sat, October 2, 2010 5:34:55 PM Subject: Re: The part that scares me Thanks I'm going to research and then ask the dr wednesday. We got pulse for 3 days this week. Amy - Avery 17 systemic ________________________________ From: Price <bc.price@...> Sent: Sat, October 2, 2010 5:22:25 PM Subject: Re: The part that scares me You know, I wonder......... I read a study last month posted on here which got me thinking. It was on cytomegalovirus. but it mentioned macrophage activation syndrome. It was from Israel, and it said that some believe that up to 50% of systemics have occult MAS. Occult means hidden. So it might show up on labs, but they might not have the outward signs of it. Then I asked our ped rheumy about it. He said many rheumys believe, and Carol Wallace at Seattle Children's is one, that many systemics are right on the line of MAS. The labs get out of whack. The liver, the kidneys, the platelets. My research has led me to believe that only about 7% of systemics get MAS, but some rheumys think it is much higher and may approach that 50% mark. When you mentioned Avery's liver and kidney, I started to think. n's started to go when she had MAS. And for the first time ever in the disease she got fluid around her heart. Now some systemics get fluid around the heart without having MAS. The first line of defense of MAS is high dose steroids. Specifically, pulsed steroids. n got 1000mg a day for 5 days. But that isn't what pulled her out of her distress. It was cyclosporine. (n, 21, systemic) On Oct 2, 2010, at 3:10 PM, Amy Spurger wrote: > I guess I should say the part that scares me the most, is the fluid around his > heart. I can't believe how sick he became and how quickly it happened. His > symptoms started on Sept 5 and on the 6th his labs were normal. By the 13th he > had kidney damage and by the 24th the labs were showing liver damage and on the > > > 27th he had a moderate peripcardial effusion, which was not there on the 22nd. > Now I sit here and watch and wonder what is going on in his body. > > Amy - avery 17 sojra > > Quote Link to comment Share on other sites More sharing options...
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