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MissAlexsBP
Guest
Thanks so much for the replies! I haven't been to the doctor for it yet since I was actually just in during the beginning of June. But, I did call them so they know that I had those symptoms and luckily they have gone away, but next time I am at the doctors I will ask them more about it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
It's sad to say, but I'm kinda glad I'm not the only one who has had this. But, I hope everyone else gets better too!
It's sad to say, but I'm kinda glad I'm not the only one who has had this. But, I hope everyone else gets better too!
M
MissAlexsBP
Guest
Thanks so much for the replies! I haven't been to the doctor for it yet since I was actually just in during the beginning of June. But, I did call them so they know that I had those symptoms and luckily they have gone away, but next time I am at the doctors I will ask them more about it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
It's sad to say, but I'm kinda glad I'm not the only one who has had this. But, I hope everyone else gets better too!
It's sad to say, but I'm kinda glad I'm not the only one who has had this. But, I hope everyone else gets better too!
M
MissAlexsBP
Guest
Thanks so much for the replies! I haven't been to the doctor for it yet since I was actually just in during the beginning of June. But, I did call them so they know that I had those symptoms and luckily they have gone away, but next time I am at the doctors I will ask them more about it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />It's sad to say, but I'm kinda glad I'm not the only one who has had this. But, I hope everyone else gets better too!
<br />
<br />It's sad to say, but I'm kinda glad I'm not the only one who has had this. But, I hope everyone else gets better too!
mamaScarlett
Active member
very glad you are better missalexbp!
thats a relief!
sue, i've been dx with urticarial vasculitis.
my symptoms are different than more common vasculitis' out there bc i have hives along with my red rashes and bumps, and some other symptoms.
there are treatment options out there. one drug is an antibiotic (sorry, do not remember the name), but it acts on trying to shut down the bad autoimmune response thats going off in me, causing the vasculitis.
there are other drugs too, but quite heavier ones. most of them act on suppressing the immune system. the catch is that we have to be very careful about our immunity. the risk may be too high in taking some of these meds. the plus of these meds though is that they seem to get rid of the problem for a very long time. where as prednisone lasts a couple weeks.
my particular vasc is something that is not life threatening. its not going to kill me, its just causing alot of pain.
the cause of my vasc is largely unknown. interestingly they think its not totally related to or caused by Cf, but more like related indirectly to it.
(years of meds, exposure to hospital settings and illnesses, and the wear on my blood vessels)
my body is attacking something inside me. they once thought it was one of my 'bug' cultures (pseudo, mrsa, cepacia) but they don't think that anymore. they don't know what it is. but what its doing is causing my body to put its immune fighters in overdrive, produce more white cells and fluids-causing the blood vessels to pop and swell-thats what brings the swelling and pressure in my legs and arms.
but i also have hives with it, so I'm having an allergic response to something.
basically to sum it all up-I need Dr. House!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
didn't want to rattle on, but thats a brief explanation of my deal here. like i said, i've been through it all with every doc imaginable in this field. any questions, please feel free to ask away. i know how painful this is. most days, (to me), its worse than my Cf.
thats a relief!
sue, i've been dx with urticarial vasculitis.
my symptoms are different than more common vasculitis' out there bc i have hives along with my red rashes and bumps, and some other symptoms.
there are treatment options out there. one drug is an antibiotic (sorry, do not remember the name), but it acts on trying to shut down the bad autoimmune response thats going off in me, causing the vasculitis.
there are other drugs too, but quite heavier ones. most of them act on suppressing the immune system. the catch is that we have to be very careful about our immunity. the risk may be too high in taking some of these meds. the plus of these meds though is that they seem to get rid of the problem for a very long time. where as prednisone lasts a couple weeks.
my particular vasc is something that is not life threatening. its not going to kill me, its just causing alot of pain.
the cause of my vasc is largely unknown. interestingly they think its not totally related to or caused by Cf, but more like related indirectly to it.
(years of meds, exposure to hospital settings and illnesses, and the wear on my blood vessels)
my body is attacking something inside me. they once thought it was one of my 'bug' cultures (pseudo, mrsa, cepacia) but they don't think that anymore. they don't know what it is. but what its doing is causing my body to put its immune fighters in overdrive, produce more white cells and fluids-causing the blood vessels to pop and swell-thats what brings the swelling and pressure in my legs and arms.
but i also have hives with it, so I'm having an allergic response to something.
basically to sum it all up-I need Dr. House!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
didn't want to rattle on, but thats a brief explanation of my deal here. like i said, i've been through it all with every doc imaginable in this field. any questions, please feel free to ask away. i know how painful this is. most days, (to me), its worse than my Cf.
mamaScarlett
Active member
very glad you are better missalexbp!
thats a relief!
sue, i've been dx with urticarial vasculitis.
my symptoms are different than more common vasculitis' out there bc i have hives along with my red rashes and bumps, and some other symptoms.
there are treatment options out there. one drug is an antibiotic (sorry, do not remember the name), but it acts on trying to shut down the bad autoimmune response thats going off in me, causing the vasculitis.
there are other drugs too, but quite heavier ones. most of them act on suppressing the immune system. the catch is that we have to be very careful about our immunity. the risk may be too high in taking some of these meds. the plus of these meds though is that they seem to get rid of the problem for a very long time. where as prednisone lasts a couple weeks.
my particular vasc is something that is not life threatening. its not going to kill me, its just causing alot of pain.
the cause of my vasc is largely unknown. interestingly they think its not totally related to or caused by Cf, but more like related indirectly to it.
(years of meds, exposure to hospital settings and illnesses, and the wear on my blood vessels)
my body is attacking something inside me. they once thought it was one of my 'bug' cultures (pseudo, mrsa, cepacia) but they don't think that anymore. they don't know what it is. but what its doing is causing my body to put its immune fighters in overdrive, produce more white cells and fluids-causing the blood vessels to pop and swell-thats what brings the swelling and pressure in my legs and arms.
but i also have hives with it, so I'm having an allergic response to something.
basically to sum it all up-I need Dr. House!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
didn't want to rattle on, but thats a brief explanation of my deal here. like i said, i've been through it all with every doc imaginable in this field. any questions, please feel free to ask away. i know how painful this is. most days, (to me), its worse than my Cf.
thats a relief!
sue, i've been dx with urticarial vasculitis.
my symptoms are different than more common vasculitis' out there bc i have hives along with my red rashes and bumps, and some other symptoms.
there are treatment options out there. one drug is an antibiotic (sorry, do not remember the name), but it acts on trying to shut down the bad autoimmune response thats going off in me, causing the vasculitis.
there are other drugs too, but quite heavier ones. most of them act on suppressing the immune system. the catch is that we have to be very careful about our immunity. the risk may be too high in taking some of these meds. the plus of these meds though is that they seem to get rid of the problem for a very long time. where as prednisone lasts a couple weeks.
my particular vasc is something that is not life threatening. its not going to kill me, its just causing alot of pain.
the cause of my vasc is largely unknown. interestingly they think its not totally related to or caused by Cf, but more like related indirectly to it.
(years of meds, exposure to hospital settings and illnesses, and the wear on my blood vessels)
my body is attacking something inside me. they once thought it was one of my 'bug' cultures (pseudo, mrsa, cepacia) but they don't think that anymore. they don't know what it is. but what its doing is causing my body to put its immune fighters in overdrive, produce more white cells and fluids-causing the blood vessels to pop and swell-thats what brings the swelling and pressure in my legs and arms.
but i also have hives with it, so I'm having an allergic response to something.
basically to sum it all up-I need Dr. House!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
didn't want to rattle on, but thats a brief explanation of my deal here. like i said, i've been through it all with every doc imaginable in this field. any questions, please feel free to ask away. i know how painful this is. most days, (to me), its worse than my Cf.
mamaScarlett
Active member
very glad you are better missalexbp!
<br />thats a relief!
<br />sue, i've been dx with urticarial vasculitis.
<br />my symptoms are different than more common vasculitis' out there bc i have hives along with my red rashes and bumps, and some other symptoms.
<br />there are treatment options out there. one drug is an antibiotic (sorry, do not remember the name), but it acts on trying to shut down the bad autoimmune response thats going off in me, causing the vasculitis.
<br />there are other drugs too, but quite heavier ones. most of them act on suppressing the immune system. the catch is that we have to be very careful about our immunity. the risk may be too high in taking some of these meds. the plus of these meds though is that they seem to get rid of the problem for a very long time. where as prednisone lasts a couple weeks.
<br />
<br />my particular vasc is something that is not life threatening. its not going to kill me, its just causing alot of pain.
<br />the cause of my vasc is largely unknown. interestingly they think its not totally related to or caused by Cf, but more like related indirectly to it.
<br />(years of meds, exposure to hospital settings and illnesses, and the wear on my blood vessels)
<br />my body is attacking something inside me. they once thought it was one of my 'bug' cultures (pseudo, mrsa, cepacia) but they don't think that anymore. they don't know what it is. but what its doing is causing my body to put its immune fighters in overdrive, produce more white cells and fluids-causing the blood vessels to pop and swell-thats what brings the swelling and pressure in my legs and arms.
<br />but i also have hives with it, so I'm having an allergic response to something.
<br />basically to sum it all up-I need Dr. House!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />didn't want to rattle on, but thats a brief explanation of my deal here. like i said, i've been through it all with every doc imaginable in this field. any questions, please feel free to ask away. i know how painful this is. most days, (to me), its worse than my Cf.
<br />thats a relief!
<br />sue, i've been dx with urticarial vasculitis.
<br />my symptoms are different than more common vasculitis' out there bc i have hives along with my red rashes and bumps, and some other symptoms.
<br />there are treatment options out there. one drug is an antibiotic (sorry, do not remember the name), but it acts on trying to shut down the bad autoimmune response thats going off in me, causing the vasculitis.
<br />there are other drugs too, but quite heavier ones. most of them act on suppressing the immune system. the catch is that we have to be very careful about our immunity. the risk may be too high in taking some of these meds. the plus of these meds though is that they seem to get rid of the problem for a very long time. where as prednisone lasts a couple weeks.
<br />
<br />my particular vasc is something that is not life threatening. its not going to kill me, its just causing alot of pain.
<br />the cause of my vasc is largely unknown. interestingly they think its not totally related to or caused by Cf, but more like related indirectly to it.
<br />(years of meds, exposure to hospital settings and illnesses, and the wear on my blood vessels)
<br />my body is attacking something inside me. they once thought it was one of my 'bug' cultures (pseudo, mrsa, cepacia) but they don't think that anymore. they don't know what it is. but what its doing is causing my body to put its immune fighters in overdrive, produce more white cells and fluids-causing the blood vessels to pop and swell-thats what brings the swelling and pressure in my legs and arms.
<br />but i also have hives with it, so I'm having an allergic response to something.
<br />basically to sum it all up-I need Dr. House!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />didn't want to rattle on, but thats a brief explanation of my deal here. like i said, i've been through it all with every doc imaginable in this field. any questions, please feel free to ask away. i know how painful this is. most days, (to me), its worse than my Cf.
littletaylor
New member
i used to get those red, raised, welt-looking hives, along with the pains and everything else the first post says when i was younger, about ages 6-10, but could never get a c.f. appointment fast enough to show the doctor and have them assess what it could've been from. the hives haven't happened since my childhood, so i haven't had a chance to figure out what they were or what they could've been caused from though we still do make it a point to mention to doctors, i still get the pains just minus the red hives, but i wasn't sure if what happens now could've been related to what happens now and never really thought of my back pains being related to the hives, though i did sort of link the hives and the joint and bone pains to it in my own mind, seeing as how, originally, they would come at the same times. though as i've grown older the red hives have stopped, the pains have remained and increased and gotten to being present just about every single day now. the only thing that's seemed to bring me any relief in my joint and bone pain aspect has been muscle relaxers such as tramadol, which i rarely get for p.i.c.c lines and also fail to completely or even mostly alleviate the pain. i have a rheumatology appointment in february, which took years of mentioning my back, bone, and joint pains to my c.f. doctor to finally get something done because the doctors basically thought i was lying about being in pain(we've been mentioning the hives since they first appeared and doctors either ignore it or tell us they have no idea). if anyone has helpful advice or has had their similar symptoms diagnosed, i would appreciate the input and to be able to sort of us their diagnosis as a spring board and a comparison to mine when/if any of my pains, aches, etc. i have are diagnosed in february. thank you, taylor.
littletaylor
New member
i used to get those red, raised, welt-looking hives, along with the pains and everything else the first post says when i was younger, about ages 6-10, but could never get a c.f. appointment fast enough to show the doctor and have them assess what it could've been from. the hives haven't happened since my childhood, so i haven't had a chance to figure out what they were or what they could've been caused from though we still do make it a point to mention to doctors, i still get the pains just minus the red hives, but i wasn't sure if what happens now could've been related to what happens now and never really thought of my back pains being related to the hives, though i did sort of link the hives and the joint and bone pains to it in my own mind, seeing as how, originally, they would come at the same times. though as i've grown older the red hives have stopped, the pains have remained and increased and gotten to being present just about every single day now. the only thing that's seemed to bring me any relief in my joint and bone pain aspect has been muscle relaxers such as tramadol, which i rarely get for p.i.c.c lines and also fail to completely or even mostly alleviate the pain. i have a rheumatology appointment in february, which took years of mentioning my back, bone, and joint pains to my c.f. doctor to finally get something done because the doctors basically thought i was lying about being in pain(we've been mentioning the hives since they first appeared and doctors either ignore it or tell us they have no idea). if anyone has helpful advice or has had their similar symptoms diagnosed, i would appreciate the input and to be able to sort of us their diagnosis as a spring board and a comparison to mine when/if any of my pains, aches, etc. i have are diagnosed in february. thank you, taylor.
littletaylor
New member
i used to get those red, raised, welt-looking hives, along with the pains and everything else the first post says when i was younger, about ages 6-10, but could never get a c.f. appointment fast enough to show the doctor and have them assess what it could've been from. the hives haven't happened since my childhood, so i haven't had a chance to figure out what they were or what they could've been caused from though we still do make it a point to mention to doctors, i still get the pains just minus the red hives, but i wasn't sure if what happens now could've been related to what happens now and never really thought of my back pains being related to the hives, though i did sort of link the hives and the joint and bone pains to it in my own mind, seeing as how, originally, they would come at the same times. though as i've grown older the red hives have stopped, the pains have remained and increased and gotten to being present just about every single day now. the only thing that's seemed to bring me any relief in my joint and bone pain aspect has been muscle relaxers such as tramadol, which i rarely get for p.i.c.c lines and also fail to completely or even mostly alleviate the pain. i have a rheumatology appointment in february, which took years of mentioning my back, bone, and joint pains to my c.f. doctor to finally get something done because the doctors basically thought i was lying about being in pain(we've been mentioning the hives since they first appeared and doctors either ignore it or tell us they have no idea). if anyone has helpful advice or has had their similar symptoms diagnosed, i would appreciate the input and to be able to sort of us their diagnosis as a spring board and a comparison to mine when/if any of my pains, aches, etc. i have are diagnosed in february. thank you, taylor.