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

[coltsfan715]

Hey there.

I just wanted to put out there that when I had vasculitis that was 8 years ago and at the time I was not end stage. Mine was a result of a Levaquin allergy. I too had taken Levaquin for quite a while with no ill effects and then out of no where I just developed the allergy. My first thought was to go to a dermatologist, so I had 2 biopsies taken with the first major outbreak and he determined it was vasculitis.

The dermatologist I saw at the time told me that vasculitis can just occur for no real reason or it can be contributed to an allergy. I started to notice that every time I was taking my month ON of Levaquin (while off of TOBI) that my outbreak would come back. Then when I was on TOBI the outbreak would slowly disappear.

I ended up starting to get the outbreaks on my elbows and wrists and that was when I said enough is enough something needs to be done about this. They ended up admitting me and taking me off Levaquin cause they were speculating at the time that it was caused by that. I had 3 more biopsies while in the hospital and they came back inconclusive in regards to whether or not I did have an allergy.

I still have some scars from where I had ulcers from the blisters and such on my ankles and such. I know mine was not because of my having cepacia because I never cultured cepacia. I have not been on Levaquin since that hospital stay and I have not had any more outbreaks.

If it is happening "just because" it can last anywhere fro 3-6 months. At least I think that is what the dermatologist told me.

I hope that they find out what the problem is. I would maybe talk to your CF doc and see if there is some other med that they can give you and see if that helps at all. It is completely possible that it is just an allergy that you have developed.

Take Care,
Lindsey

 

[coltsfan715]

Hey there.

I just wanted to put out there that when I had vasculitis that was 8 years ago and at the time I was not end stage. Mine was a result of a Levaquin allergy. I too had taken Levaquin for quite a while with no ill effects and then out of no where I just developed the allergy. My first thought was to go to a dermatologist, so I had 2 biopsies taken with the first major outbreak and he determined it was vasculitis.

The dermatologist I saw at the time told me that vasculitis can just occur for no real reason or it can be contributed to an allergy. I started to notice that every time I was taking my month ON of Levaquin (while off of TOBI) that my outbreak would come back. Then when I was on TOBI the outbreak would slowly disappear.

I ended up starting to get the outbreaks on my elbows and wrists and that was when I said enough is enough something needs to be done about this. They ended up admitting me and taking me off Levaquin cause they were speculating at the time that it was caused by that. I had 3 more biopsies while in the hospital and they came back inconclusive in regards to whether or not I did have an allergy.

I still have some scars from where I had ulcers from the blisters and such on my ankles and such. I know mine was not because of my having cepacia because I never cultured cepacia. I have not been on Levaquin since that hospital stay and I have not had any more outbreaks.

If it is happening "just because" it can last anywhere fro 3-6 months. At least I think that is what the dermatologist told me.

I hope that they find out what the problem is. I would maybe talk to your CF doc and see if there is some other med that they can give you and see if that helps at all. It is completely possible that it is just an allergy that you have developed.

Take Care,
Lindsey

 

[coltsfan715]

Hey there.

I just wanted to put out there that when I had vasculitis that was 8 years ago and at the time I was not end stage. Mine was a result of a Levaquin allergy. I too had taken Levaquin for quite a while with no ill effects and then out of no where I just developed the allergy. My first thought was to go to a dermatologist, so I had 2 biopsies taken with the first major outbreak and he determined it was vasculitis.

The dermatologist I saw at the time told me that vasculitis can just occur for no real reason or it can be contributed to an allergy. I started to notice that every time I was taking my month ON of Levaquin (while off of TOBI) that my outbreak would come back. Then when I was on TOBI the outbreak would slowly disappear.

I ended up starting to get the outbreaks on my elbows and wrists and that was when I said enough is enough something needs to be done about this. They ended up admitting me and taking me off Levaquin cause they were speculating at the time that it was caused by that. I had 3 more biopsies while in the hospital and they came back inconclusive in regards to whether or not I did have an allergy.

I still have some scars from where I had ulcers from the blisters and such on my ankles and such. I know mine was not because of my having cepacia because I never cultured cepacia. I have not been on Levaquin since that hospital stay and I have not had any more outbreaks.

If it is happening "just because" it can last anywhere fro 3-6 months. At least I think that is what the dermatologist told me.

I hope that they find out what the problem is. I would maybe talk to your CF doc and see if there is some other med that they can give you and see if that helps at all. It is completely possible that it is just an allergy that you have developed.

Take Care,
Lindsey

 

[coltsfan715]

Hey there.

I just wanted to put out there that when I had vasculitis that was 8 years ago and at the time I was not end stage. Mine was a result of a Levaquin allergy. I too had taken Levaquin for quite a while with no ill effects and then out of no where I just developed the allergy. My first thought was to go to a dermatologist, so I had 2 biopsies taken with the first major outbreak and he determined it was vasculitis.

The dermatologist I saw at the time told me that vasculitis can just occur for no real reason or it can be contributed to an allergy. I started to notice that every time I was taking my month ON of Levaquin (while off of TOBI) that my outbreak would come back. Then when I was on TOBI the outbreak would slowly disappear.

I ended up starting to get the outbreaks on my elbows and wrists and that was when I said enough is enough something needs to be done about this. They ended up admitting me and taking me off Levaquin cause they were speculating at the time that it was caused by that. I had 3 more biopsies while in the hospital and they came back inconclusive in regards to whether or not I did have an allergy.

I still have some scars from where I had ulcers from the blisters and such on my ankles and such. I know mine was not because of my having cepacia because I never cultured cepacia. I have not been on Levaquin since that hospital stay and I have not had any more outbreaks.

If it is happening "just because" it can last anywhere fro 3-6 months. At least I think that is what the dermatologist told me.

I hope that they find out what the problem is. I would maybe talk to your CF doc and see if there is some other med that they can give you and see if that helps at all. It is completely possible that it is just an allergy that you have developed.

Take Care,
Lindsey

 

[coltsfan715]

Hey there.

I just wanted to put out there that when I had vasculitis that was 8 years ago and at the time I was not end stage. Mine was a result of a Levaquin allergy. I too had taken Levaquin for quite a while with no ill effects and then out of no where I just developed the allergy. My first thought was to go to a dermatologist, so I had 2 biopsies taken with the first major outbreak and he determined it was vasculitis.

The dermatologist I saw at the time told me that vasculitis can just occur for no real reason or it can be contributed to an allergy. I started to notice that every time I was taking my month ON of Levaquin (while off of TOBI) that my outbreak would come back. Then when I was on TOBI the outbreak would slowly disappear.

I ended up starting to get the outbreaks on my elbows and wrists and that was when I said enough is enough something needs to be done about this. They ended up admitting me and taking me off Levaquin cause they were speculating at the time that it was caused by that. I had 3 more biopsies while in the hospital and they came back inconclusive in regards to whether or not I did have an allergy.

I still have some scars from where I had ulcers from the blisters and such on my ankles and such. I know mine was not because of my having cepacia because I never cultured cepacia. I have not been on Levaquin since that hospital stay and I have not had any more outbreaks.

If it is happening "just because" it can last anywhere fro 3-6 months. At least I think that is what the dermatologist told me.

I hope that they find out what the problem is. I would maybe talk to your CF doc and see if there is some other med that they can give you and see if that helps at all. It is completely possible that it is just an allergy that you have developed.

Take Care,
Lindsey

 

[coltsfan715]

I just wanted to put this out there. I am not sure about all types of vasculitis, BUT some forms of vasculitis can cause serious problems with other organs in the body. SO that being mentioned if this is something that you experience I would definitely talk to your doctor about it cause I would hate to see the problem brushed off when it can be avoided by using a different med.

Also to mention I had this problem with Levaquin (as mentioned above) but have never had any problems with taking Cipro, so just because one drug may bother you a similar drug may not cause you problems.

Take Care,
Lindsey

 

[coltsfan715]

I just wanted to put this out there. I am not sure about all types of vasculitis, BUT some forms of vasculitis can cause serious problems with other organs in the body. SO that being mentioned if this is something that you experience I would definitely talk to your doctor about it cause I would hate to see the problem brushed off when it can be avoided by using a different med.

Also to mention I had this problem with Levaquin (as mentioned above) but have never had any problems with taking Cipro, so just because one drug may bother you a similar drug may not cause you problems.

Take Care,
Lindsey

 

[coltsfan715]

I just wanted to put this out there. I am not sure about all types of vasculitis, BUT some forms of vasculitis can cause serious problems with other organs in the body. SO that being mentioned if this is something that you experience I would definitely talk to your doctor about it cause I would hate to see the problem brushed off when it can be avoided by using a different med.

Also to mention I had this problem with Levaquin (as mentioned above) but have never had any problems with taking Cipro, so just because one drug may bother you a similar drug may not cause you problems.

Take Care,
Lindsey

 

[coltsfan715]

I just wanted to put this out there. I am not sure about all types of vasculitis, BUT some forms of vasculitis can cause serious problems with other organs in the body. SO that being mentioned if this is something that you experience I would definitely talk to your doctor about it cause I would hate to see the problem brushed off when it can be avoided by using a different med.

Also to mention I had this problem with Levaquin (as mentioned above) but have never had any problems with taking Cipro, so just because one drug may bother you a similar drug may not cause you problems.

Take Care,
Lindsey

 

[coltsfan715]

I just wanted to put this out there. I am not sure about all types of vasculitis, BUT some forms of vasculitis can cause serious problems with other organs in the body. SO that being mentioned if this is something that you experience I would definitely talk to your doctor about it cause I would hate to see the problem brushed off when it can be avoided by using a different med.

Also to mention I had this problem with Levaquin (as mentioned above) but have never had any problems with taking Cipro, so just because one drug may bother you a similar drug may not cause you problems.

Take Care,
Lindsey

 

[Scarlett81]

Well well well......welcome to the club.


ugggg. I feel for you babe-literally.
I'm so glad u posted the pics-when my hubby's sees them he's going to flip-we are so alike now Lauren, its really scary. The rash on your legs in this pic is 100% EXACTLY what I have on my body today.

I didn't get to read all replies yet-I will asap. But the only thing I will say is it can't be pregnancy related for me at least bc I have had this for almost 5 years, and (luckily for me) it has gotten better over time, not worse. In the beginning, it was more involved with the knee/ankle swelling like you described. That is the painful part-it really is crippling. I remember having to crawl up and down the stairs. I remember it being so bad the tears were streaming down my face-I couldn't even control them, it was so painful. Hubby had to carry me around the house often-it was so emotional too bc we didn't know what was going on. I am sure this is from cepacia. When you have something for so long that no one knows anything about-and you wonder and worry and research and find no answer-and then one day you get the answer.....you just know in your heart if its the right one. When the rheumetologist told me what this was, I said to myself-he is right.

I don't know about others with cepacia, but for me, I can feel when cepacia is flaring. I get a weird feverish feeling, my breathing even feels different. The rash seems to coorelate with these feelings.

I know at the time I had a doctor that didn't take it seriously-actually my then doctor was a colleague of your current doctor-funny, huh? He was the chief doctor at a clinic that your doctor used to work at. I hope your doc is taking this more seriously than the docs did for me at the time. But it sounds like he is.

I was so against taking the prednisone-I HATE that drug with a passion. But since this recent flareup I gave in and took it bc caring for my little one and dealing with this is just too much to handle. All I'll say is.....taking the pred has given me a little relief. Its not taking it away like the doc said it would though...but its not painful at all anymore. It sounds like yours is getting worse. If I were you I'd take the pred-this isn't just for your info, but for anyone out there reading this dealing with a similar thing. Of course, its your body, and you are breastfeeding too so its a totally personal decision. Its a big decision too.

I put the drug off for 3 yrs. It was hard. I have found that 20 mgs a day doesn't give me raving lunatic side effects though, that a larger more therapeutic respiratory dose gives me. I think a lower dose would work too and I'm going to start splitting the pills to take 10 mgs-it think it would be fine.

**!!**Also I ditto what Lindsey said-this can be affecting internal organs-kidneys, thyroid, ect...esp kidneys have to be monitored. There is great info on wikipedia about vasculitis and Henoch Schonlein Purpura disease with some scary stats....upwards of 80% of vasculitis sufferers developed advanced kidney disease. But it can be avoided with monitoring. (This may not apply to you at all!!!)But again, FYI for anyone else out there dealing with this that is reading this info. They have been monitoring my kidneys, but have neglected to watch my thyroid and I am now being tested for thyroid issues and may have a complication to deal with bc of it.

 

[Scarlett81]

Well well well......welcome to the club.


ugggg. I feel for you babe-literally.
I'm so glad u posted the pics-when my hubby's sees them he's going to flip-we are so alike now Lauren, its really scary. The rash on your legs in this pic is 100% EXACTLY what I have on my body today.

I didn't get to read all replies yet-I will asap. But the only thing I will say is it can't be pregnancy related for me at least bc I have had this for almost 5 years, and (luckily for me) it has gotten better over time, not worse. In the beginning, it was more involved with the knee/ankle swelling like you described. That is the painful part-it really is crippling. I remember having to crawl up and down the stairs. I remember it being so bad the tears were streaming down my face-I couldn't even control them, it was so painful. Hubby had to carry me around the house often-it was so emotional too bc we didn't know what was going on. I am sure this is from cepacia. When you have something for so long that no one knows anything about-and you wonder and worry and research and find no answer-and then one day you get the answer.....you just know in your heart if its the right one. When the rheumetologist told me what this was, I said to myself-he is right.

I don't know about others with cepacia, but for me, I can feel when cepacia is flaring. I get a weird feverish feeling, my breathing even feels different. The rash seems to coorelate with these feelings.

I know at the time I had a doctor that didn't take it seriously-actually my then doctor was a colleague of your current doctor-funny, huh? He was the chief doctor at a clinic that your doctor used to work at. I hope your doc is taking this more seriously than the docs did for me at the time. But it sounds like he is.

I was so against taking the prednisone-I HATE that drug with a passion. But since this recent flareup I gave in and took it bc caring for my little one and dealing with this is just too much to handle. All I'll say is.....taking the pred has given me a little relief. Its not taking it away like the doc said it would though...but its not painful at all anymore. It sounds like yours is getting worse. If I were you I'd take the pred-this isn't just for your info, but for anyone out there reading this dealing with a similar thing. Of course, its your body, and you are breastfeeding too so its a totally personal decision. Its a big decision too.

I put the drug off for 3 yrs. It was hard. I have found that 20 mgs a day doesn't give me raving lunatic side effects though, that a larger more therapeutic respiratory dose gives me. I think a lower dose would work too and I'm going to start splitting the pills to take 10 mgs-it think it would be fine.

**!!**Also I ditto what Lindsey said-this can be affecting internal organs-kidneys, thyroid, ect...esp kidneys have to be monitored. There is great info on wikipedia about vasculitis and Henoch Schonlein Purpura disease with some scary stats....upwards of 80% of vasculitis sufferers developed advanced kidney disease. But it can be avoided with monitoring. (This may not apply to you at all!!!)But again, FYI for anyone else out there dealing with this that is reading this info. They have been monitoring my kidneys, but have neglected to watch my thyroid and I am now being tested for thyroid issues and may have a complication to deal with bc of it.

 

[Scarlett81]

Well well well......welcome to the club.


ugggg. I feel for you babe-literally.
I'm so glad u posted the pics-when my hubby's sees them he's going to flip-we are so alike now Lauren, its really scary. The rash on your legs in this pic is 100% EXACTLY what I have on my body today.

I didn't get to read all replies yet-I will asap. But the only thing I will say is it can't be pregnancy related for me at least bc I have had this for almost 5 years, and (luckily for me) it has gotten better over time, not worse. In the beginning, it was more involved with the knee/ankle swelling like you described. That is the painful part-it really is crippling. I remember having to crawl up and down the stairs. I remember it being so bad the tears were streaming down my face-I couldn't even control them, it was so painful. Hubby had to carry me around the house often-it was so emotional too bc we didn't know what was going on. I am sure this is from cepacia. When you have something for so long that no one knows anything about-and you wonder and worry and research and find no answer-and then one day you get the answer.....you just know in your heart if its the right one. When the rheumetologist told me what this was, I said to myself-he is right.

I don't know about others with cepacia, but for me, I can feel when cepacia is flaring. I get a weird feverish feeling, my breathing even feels different. The rash seems to coorelate with these feelings.

I know at the time I had a doctor that didn't take it seriously-actually my then doctor was a colleague of your current doctor-funny, huh? He was the chief doctor at a clinic that your doctor used to work at. I hope your doc is taking this more seriously than the docs did for me at the time. But it sounds like he is.

I was so against taking the prednisone-I HATE that drug with a passion. But since this recent flareup I gave in and took it bc caring for my little one and dealing with this is just too much to handle. All I'll say is.....taking the pred has given me a little relief. Its not taking it away like the doc said it would though...but its not painful at all anymore. It sounds like yours is getting worse. If I were you I'd take the pred-this isn't just for your info, but for anyone out there reading this dealing with a similar thing. Of course, its your body, and you are breastfeeding too so its a totally personal decision. Its a big decision too.

I put the drug off for 3 yrs. It was hard. I have found that 20 mgs a day doesn't give me raving lunatic side effects though, that a larger more therapeutic respiratory dose gives me. I think a lower dose would work too and I'm going to start splitting the pills to take 10 mgs-it think it would be fine.

**!!**Also I ditto what Lindsey said-this can be affecting internal organs-kidneys, thyroid, ect...esp kidneys have to be monitored. There is great info on wikipedia about vasculitis and Henoch Schonlein Purpura disease with some scary stats....upwards of 80% of vasculitis sufferers developed advanced kidney disease. But it can be avoided with monitoring. (This may not apply to you at all!!!)But again, FYI for anyone else out there dealing with this that is reading this info. They have been monitoring my kidneys, but have neglected to watch my thyroid and I am now being tested for thyroid issues and may have a complication to deal with bc of it.

 

[Scarlett81]

Well well well......welcome to the club.


ugggg. I feel for you babe-literally.
I'm so glad u posted the pics-when my hubby's sees them he's going to flip-we are so alike now Lauren, its really scary. The rash on your legs in this pic is 100% EXACTLY what I have on my body today.

I didn't get to read all replies yet-I will asap. But the only thing I will say is it can't be pregnancy related for me at least bc I have had this for almost 5 years, and (luckily for me) it has gotten better over time, not worse. In the beginning, it was more involved with the knee/ankle swelling like you described. That is the painful part-it really is crippling. I remember having to crawl up and down the stairs. I remember it being so bad the tears were streaming down my face-I couldn't even control them, it was so painful. Hubby had to carry me around the house often-it was so emotional too bc we didn't know what was going on. I am sure this is from cepacia. When you have something for so long that no one knows anything about-and you wonder and worry and research and find no answer-and then one day you get the answer.....you just know in your heart if its the right one. When the rheumetologist told me what this was, I said to myself-he is right.

I don't know about others with cepacia, but for me, I can feel when cepacia is flaring. I get a weird feverish feeling, my breathing even feels different. The rash seems to coorelate with these feelings.

I know at the time I had a doctor that didn't take it seriously-actually my then doctor was a colleague of your current doctor-funny, huh? He was the chief doctor at a clinic that your doctor used to work at. I hope your doc is taking this more seriously than the docs did for me at the time. But it sounds like he is.

I was so against taking the prednisone-I HATE that drug with a passion. But since this recent flareup I gave in and took it bc caring for my little one and dealing with this is just too much to handle. All I'll say is.....taking the pred has given me a little relief. Its not taking it away like the doc said it would though...but its not painful at all anymore. It sounds like yours is getting worse. If I were you I'd take the pred-this isn't just for your info, but for anyone out there reading this dealing with a similar thing. Of course, its your body, and you are breastfeeding too so its a totally personal decision. Its a big decision too.

I put the drug off for 3 yrs. It was hard. I have found that 20 mgs a day doesn't give me raving lunatic side effects though, that a larger more therapeutic respiratory dose gives me. I think a lower dose would work too and I'm going to start splitting the pills to take 10 mgs-it think it would be fine.

**!!**Also I ditto what Lindsey said-this can be affecting internal organs-kidneys, thyroid, ect...esp kidneys have to be monitored. There is great info on wikipedia about vasculitis and Henoch Schonlein Purpura disease with some scary stats....upwards of 80% of vasculitis sufferers developed advanced kidney disease. But it can be avoided with monitoring. (This may not apply to you at all!!!)But again, FYI for anyone else out there dealing with this that is reading this info. They have been monitoring my kidneys, but have neglected to watch my thyroid and I am now being tested for thyroid issues and may have a complication to deal with bc of it.

 

[Scarlett81]

Well well well......welcome to the club.


ugggg. I feel for you babe-literally.
I'm so glad u posted the pics-when my hubby's sees them he's going to flip-we are so alike now Lauren, its really scary. The rash on your legs in this pic is 100% EXACTLY what I have on my body today.

I didn't get to read all replies yet-I will asap. But the only thing I will say is it can't be pregnancy related for me at least bc I have had this for almost 5 years, and (luckily for me) it has gotten better over time, not worse. In the beginning, it was more involved with the knee/ankle swelling like you described. That is the painful part-it really is crippling. I remember having to crawl up and down the stairs. I remember it being so bad the tears were streaming down my face-I couldn't even control them, it was so painful. Hubby had to carry me around the house often-it was so emotional too bc we didn't know what was going on. I am sure this is from cepacia. When you have something for so long that no one knows anything about-and you wonder and worry and research and find no answer-and then one day you get the answer.....you just know in your heart if its the right one. When the rheumetologist told me what this was, I said to myself-he is right.

I don't know about others with cepacia, but for me, I can feel when cepacia is flaring. I get a weird feverish feeling, my breathing even feels different. The rash seems to coorelate with these feelings.

I know at the time I had a doctor that didn't take it seriously-actually my then doctor was a colleague of your current doctor-funny, huh? He was the chief doctor at a clinic that your doctor used to work at. I hope your doc is taking this more seriously than the docs did for me at the time. But it sounds like he is.

I was so against taking the prednisone-I HATE that drug with a passion. But since this recent flareup I gave in and took it bc caring for my little one and dealing with this is just too much to handle. All I'll say is.....taking the pred has given me a little relief. Its not taking it away like the doc said it would though...but its not painful at all anymore. It sounds like yours is getting worse. If I were you I'd take the pred-this isn't just for your info, but for anyone out there reading this dealing with a similar thing. Of course, its your body, and you are breastfeeding too so its a totally personal decision. Its a big decision too.

I put the drug off for 3 yrs. It was hard. I have found that 20 mgs a day doesn't give me raving lunatic side effects though, that a larger more therapeutic respiratory dose gives me. I think a lower dose would work too and I'm going to start splitting the pills to take 10 mgs-it think it would be fine.

**!!**Also I ditto what Lindsey said-this can be affecting internal organs-kidneys, thyroid, ect...esp kidneys have to be monitored. There is great info on wikipedia about vasculitis and Henoch Schonlein Purpura disease with some scary stats....upwards of 80% of vasculitis sufferers developed advanced kidney disease. But it can be avoided with monitoring. (This may not apply to you at all!!!)But again, FYI for anyone else out there dealing with this that is reading this info. They have been monitoring my kidneys, but have neglected to watch my thyroid and I am now being tested for thyroid issues and may have a complication to deal with bc of it.

 

[Scarlett81]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>


It says that at least 2-3% of cfers will experience vasculitis in their life (usually in end stage WTF??? I'd like to think I'm far from that). It is speculated that even more experience it but don't report it. Where in the general public it is very rare.


I can't see that being the case here-5 yrs ago my pfts were at their worst-fev1, 40s-50s. When I got preg my fev1 was 75% and now its 65% and climbing. I do see a coorelation to my vasculitis and my lung health-the better my lungs, the better my legs. But I am healthier than I have been-pre preg my pfts were what they were when I was a teenager (and barely ever sick!) and this doesn't go away still. That doesn't make sense.

Lauren what did the doctor say about this being caused by a colinization of MRSA?

 

[Scarlett81]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>


It says that at least 2-3% of cfers will experience vasculitis in their life (usually in end stage WTF??? I'd like to think I'm far from that). It is speculated that even more experience it but don't report it. Where in the general public it is very rare.


I can't see that being the case here-5 yrs ago my pfts were at their worst-fev1, 40s-50s. When I got preg my fev1 was 75% and now its 65% and climbing. I do see a coorelation to my vasculitis and my lung health-the better my lungs, the better my legs. But I am healthier than I have been-pre preg my pfts were what they were when I was a teenager (and barely ever sick!) and this doesn't go away still. That doesn't make sense.

Lauren what did the doctor say about this being caused by a colinization of MRSA?

 

[Scarlett81]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>


It says that at least 2-3% of cfers will experience vasculitis in their life (usually in end stage WTF??? I'd like to think I'm far from that). It is speculated that even more experience it but don't report it. Where in the general public it is very rare.


I can't see that being the case here-5 yrs ago my pfts were at their worst-fev1, 40s-50s. When I got preg my fev1 was 75% and now its 65% and climbing. I do see a coorelation to my vasculitis and my lung health-the better my lungs, the better my legs. But I am healthier than I have been-pre preg my pfts were what they were when I was a teenager (and barely ever sick!) and this doesn't go away still. That doesn't make sense.

Lauren what did the doctor say about this being caused by a colinization of MRSA?

 

[Scarlett81]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>


It says that at least 2-3% of cfers will experience vasculitis in their life (usually in end stage WTF??? I'd like to think I'm far from that). It is speculated that even more experience it but don't report it. Where in the general public it is very rare.


I can't see that being the case here-5 yrs ago my pfts were at their worst-fev1, 40s-50s. When I got preg my fev1 was 75% and now its 65% and climbing. I do see a coorelation to my vasculitis and my lung health-the better my lungs, the better my legs. But I am healthier than I have been-pre preg my pfts were what they were when I was a teenager (and barely ever sick!) and this doesn't go away still. That doesn't make sense.

Lauren what did the doctor say about this being caused by a colinization of MRSA?

 

[Scarlett81]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>


It says that at least 2-3% of cfers will experience vasculitis in their life (usually in end stage WTF??? I'd like to think I'm far from that). It is speculated that even more experience it but don't report it. Where in the general public it is very rare.


I can't see that being the case here-5 yrs ago my pfts were at their worst-fev1, 40s-50s. When I got preg my fev1 was 75% and now its 65% and climbing. I do see a coorelation to my vasculitis and my lung health-the better my lungs, the better my legs. But I am healthier than I have been-pre preg my pfts were what they were when I was a teenager (and barely ever sick!) and this doesn't go away still. That doesn't make sense.

Lauren what did the doctor say about this being caused by a colinization of MRSA?