Vasculitis - red spots, joint pain **pictures!!**

dramamama

New member
Hi Lauren-
I hate this. I have only had this once when I was perfectly healthy and was in high school. Nothing brought it on, so to speak, just one morning I was getting out of bed to get ready for high school and whammo...my ankles and knees felt tight. I looked down at my feet and they had these light red bumps on them.

It progressed to my knees and hips but was never on my trunk...although my hands did swell and were red and painful. The bumps never itched for me and they did darken as this ran its course. I was taken to cf clinic, rhumatologists, and different peds and the eventual diagnosis was my an over active immune response to the pseudo in my lungs. I don't remember if they said vasculitis, but they definitely felt it was a cf/immune response deal.

As mine healed, it was active for 3.5 to 4 weeks, they went from dark red to purple to pink. The weird thing was, my joints went from red to purple to GREEN...almost like when a bruise heals. I was completely immobile for 5 days...couldn't feed myself because my hands wouldn't work, couldn't walk to the bathroom...etc.

I hope you get better really soon and that this will be something your body can bring under control...you too Christian!!
 

dramamama

New member
Hi Lauren-
I hate this. I have only had this once when I was perfectly healthy and was in high school. Nothing brought it on, so to speak, just one morning I was getting out of bed to get ready for high school and whammo...my ankles and knees felt tight. I looked down at my feet and they had these light red bumps on them.

It progressed to my knees and hips but was never on my trunk...although my hands did swell and were red and painful. The bumps never itched for me and they did darken as this ran its course. I was taken to cf clinic, rhumatologists, and different peds and the eventual diagnosis was my an over active immune response to the pseudo in my lungs. I don't remember if they said vasculitis, but they definitely felt it was a cf/immune response deal.

As mine healed, it was active for 3.5 to 4 weeks, they went from dark red to purple to pink. The weird thing was, my joints went from red to purple to GREEN...almost like when a bruise heals. I was completely immobile for 5 days...couldn't feed myself because my hands wouldn't work, couldn't walk to the bathroom...etc.

I hope you get better really soon and that this will be something your body can bring under control...you too Christian!!
 

dramamama

New member
Hi Lauren-
I hate this. I have only had this once when I was perfectly healthy and was in high school. Nothing brought it on, so to speak, just one morning I was getting out of bed to get ready for high school and whammo...my ankles and knees felt tight. I looked down at my feet and they had these light red bumps on them.

It progressed to my knees and hips but was never on my trunk...although my hands did swell and were red and painful. The bumps never itched for me and they did darken as this ran its course. I was taken to cf clinic, rhumatologists, and different peds and the eventual diagnosis was my an over active immune response to the pseudo in my lungs. I don't remember if they said vasculitis, but they definitely felt it was a cf/immune response deal.

As mine healed, it was active for 3.5 to 4 weeks, they went from dark red to purple to pink. The weird thing was, my joints went from red to purple to GREEN...almost like when a bruise heals. I was completely immobile for 5 days...couldn't feed myself because my hands wouldn't work, couldn't walk to the bathroom...etc.

I hope you get better really soon and that this will be something your body can bring under control...you too Christian!!
 

dramamama

New member
Hi Lauren-
I hate this. I have only had this once when I was perfectly healthy and was in high school. Nothing brought it on, so to speak, just one morning I was getting out of bed to get ready for high school and whammo...my ankles and knees felt tight. I looked down at my feet and they had these light red bumps on them.

It progressed to my knees and hips but was never on my trunk...although my hands did swell and were red and painful. The bumps never itched for me and they did darken as this ran its course. I was taken to cf clinic, rhumatologists, and different peds and the eventual diagnosis was my an over active immune response to the pseudo in my lungs. I don't remember if they said vasculitis, but they definitely felt it was a cf/immune response deal.

As mine healed, it was active for 3.5 to 4 weeks, they went from dark red to purple to pink. The weird thing was, my joints went from red to purple to GREEN...almost like when a bruise heals. I was completely immobile for 5 days...couldn't feed myself because my hands wouldn't work, couldn't walk to the bathroom...etc.

I hope you get better really soon and that this will be something your body can bring under control...you too Christian!!
 

dramamama

New member
Hi Lauren-
I hate this. I have only had this once when I was perfectly healthy and was in high school. Nothing brought it on, so to speak, just one morning I was getting out of bed to get ready for high school and whammo...my ankles and knees felt tight. I looked down at my feet and they had these light red bumps on them.

It progressed to my knees and hips but was never on my trunk...although my hands did swell and were red and painful. The bumps never itched for me and they did darken as this ran its course. I was taken to cf clinic, rhumatologists, and different peds and the eventual diagnosis was my an over active immune response to the pseudo in my lungs. I don't remember if they said vasculitis, but they definitely felt it was a cf/immune response deal.

As mine healed, it was active for 3.5 to 4 weeks, they went from dark red to purple to pink. The weird thing was, my joints went from red to purple to GREEN...almost like when a bruise heals. I was completely immobile for 5 days...couldn't feed myself because my hands wouldn't work, couldn't walk to the bathroom...etc.

I hope you get better really soon and that this will be something your body can bring under control...you too Christian!!
 

becca23

New member
Personally I think it is a virus called HSP. It sounds a lot like and look likes it. I have known a couple people with it.
 

becca23

New member
Personally I think it is a virus called HSP. It sounds a lot like and look likes it. I have known a couple people with it.
 

becca23

New member
Personally I think it is a virus called HSP. It sounds a lot like and look likes it. I have known a couple people with it.
 

becca23

New member
Personally I think it is a virus called HSP. It sounds a lot like and look likes it. I have known a couple people with it.
 

becca23

New member
Personally I think it is a virus called HSP. It sounds a lot like and look likes it. I have known a couple people with it.
 

kmaried

New member
Hi,

I've mentioned this before -- but after a few years of flareups happening more and more frequently -- i got a rash that resembled welts, a spiking high fever, and body pain that rendered me completely useless. I finally went to a rheumatologist that diagnosed me with Still's Disease -- it's an autoimmune condition that is also pediatric rheumatoid arthritis. Now they are seeing adult-onset Still's. My CF doctor disagrees with that diagnosis and thinks that although the result is the same, it isn't actually another disease, it's just a CF related auto-immune condition. Another form of CFRA.


Anyway, I was put on plaquenil twice a day (has to be taken with meals or it makes me nauseaus), and this has kept me from having a flare-up in months. I was starting to loose my mind. Someone it just keeps your immune hormones level and keeps them from freaking out and inflaming everything - including your veins. Just something to ask about -- it's been the best solution for me without as many side effects as all the pain meds I was taking for the pain before!!

Here's a link:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicinenet.com/stills_disease/article.htm
">http://www.medicinenet.com/stills_disease/article.htm
</a>
Best wishes!,
Kris
 

kmaried

New member
Hi,

I've mentioned this before -- but after a few years of flareups happening more and more frequently -- i got a rash that resembled welts, a spiking high fever, and body pain that rendered me completely useless. I finally went to a rheumatologist that diagnosed me with Still's Disease -- it's an autoimmune condition that is also pediatric rheumatoid arthritis. Now they are seeing adult-onset Still's. My CF doctor disagrees with that diagnosis and thinks that although the result is the same, it isn't actually another disease, it's just a CF related auto-immune condition. Another form of CFRA.


Anyway, I was put on plaquenil twice a day (has to be taken with meals or it makes me nauseaus), and this has kept me from having a flare-up in months. I was starting to loose my mind. Someone it just keeps your immune hormones level and keeps them from freaking out and inflaming everything - including your veins. Just something to ask about -- it's been the best solution for me without as many side effects as all the pain meds I was taking for the pain before!!

Here's a link:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicinenet.com/stills_disease/article.htm
">http://www.medicinenet.com/stills_disease/article.htm
</a>
Best wishes!,
Kris
 

kmaried

New member
Hi,

I've mentioned this before -- but after a few years of flareups happening more and more frequently -- i got a rash that resembled welts, a spiking high fever, and body pain that rendered me completely useless. I finally went to a rheumatologist that diagnosed me with Still's Disease -- it's an autoimmune condition that is also pediatric rheumatoid arthritis. Now they are seeing adult-onset Still's. My CF doctor disagrees with that diagnosis and thinks that although the result is the same, it isn't actually another disease, it's just a CF related auto-immune condition. Another form of CFRA.


Anyway, I was put on plaquenil twice a day (has to be taken with meals or it makes me nauseaus), and this has kept me from having a flare-up in months. I was starting to loose my mind. Someone it just keeps your immune hormones level and keeps them from freaking out and inflaming everything - including your veins. Just something to ask about -- it's been the best solution for me without as many side effects as all the pain meds I was taking for the pain before!!

Here's a link:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicinenet.com/stills_disease/article.htm
">http://www.medicinenet.com/stills_disease/article.htm
</a>
Best wishes!,
Kris
 

kmaried

New member
Hi,

I've mentioned this before -- but after a few years of flareups happening more and more frequently -- i got a rash that resembled welts, a spiking high fever, and body pain that rendered me completely useless. I finally went to a rheumatologist that diagnosed me with Still's Disease -- it's an autoimmune condition that is also pediatric rheumatoid arthritis. Now they are seeing adult-onset Still's. My CF doctor disagrees with that diagnosis and thinks that although the result is the same, it isn't actually another disease, it's just a CF related auto-immune condition. Another form of CFRA.


Anyway, I was put on plaquenil twice a day (has to be taken with meals or it makes me nauseaus), and this has kept me from having a flare-up in months. I was starting to loose my mind. Someone it just keeps your immune hormones level and keeps them from freaking out and inflaming everything - including your veins. Just something to ask about -- it's been the best solution for me without as many side effects as all the pain meds I was taking for the pain before!!

Here's a link:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicinenet.com/stills_disease/article.htm
">http://www.medicinenet.com/stills_disease/article.htm
</a>
Best wishes!,
Kris
 

kmaried

New member
Hi,

I've mentioned this before -- but after a few years of flareups happening more and more frequently -- i got a rash that resembled welts, a spiking high fever, and body pain that rendered me completely useless. I finally went to a rheumatologist that diagnosed me with Still's Disease -- it's an autoimmune condition that is also pediatric rheumatoid arthritis. Now they are seeing adult-onset Still's. My CF doctor disagrees with that diagnosis and thinks that although the result is the same, it isn't actually another disease, it's just a CF related auto-immune condition. Another form of CFRA.


Anyway, I was put on plaquenil twice a day (has to be taken with meals or it makes me nauseaus), and this has kept me from having a flare-up in months. I was starting to loose my mind. Someone it just keeps your immune hormones level and keeps them from freaking out and inflaming everything - including your veins. Just something to ask about -- it's been the best solution for me without as many side effects as all the pain meds I was taking for the pain before!!

Here's a link:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicinenet.com/stills_disease/article.htm
">http://www.medicinenet.com/stills_disease/article.htm
</a>
Best wishes!,
Kris
 

mom2lillian

New member
wow.

This is crazy, all of it.

I am so sorry for those of you going through it, or that have been through it.

Thank you for educating us, hopefully it will save us some time, wondering, and agony in the future should one of us develop it.
 

mom2lillian

New member
wow.

This is crazy, all of it.

I am so sorry for those of you going through it, or that have been through it.

Thank you for educating us, hopefully it will save us some time, wondering, and agony in the future should one of us develop it.
 

mom2lillian

New member
wow.

This is crazy, all of it.

I am so sorry for those of you going through it, or that have been through it.

Thank you for educating us, hopefully it will save us some time, wondering, and agony in the future should one of us develop it.
 

mom2lillian

New member
wow.

This is crazy, all of it.

I am so sorry for those of you going through it, or that have been through it.

Thank you for educating us, hopefully it will save us some time, wondering, and agony in the future should one of us develop it.
 

mom2lillian

New member
wow.

This is crazy, all of it.

I am so sorry for those of you going through it, or that have been through it.

Thank you for educating us, hopefully it will save us some time, wondering, and agony in the future should one of us develop it.
 
Top