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hypertrophic pulmonary osteoarthropathy

M

MissAlexsBP

Guest
Hello!

A few weeks ago I had a fever of 102 and back pain, then it went away within 9 hours, then I got strange hives on my legs and arms and that only lasted for 2 days and yesterday, my wrists, fingers, knees and back were sore. It felt as though I had done some serious excersize, when sadly, I don't do that at all. I googled the symptoms just to see if something came up, as I have heard that early arthritis has been known to happen with CF and I found Hypertrophic Pulmonary Osteoarthropathy which matched most of my symptoms. I guess it's also a component in finger clubbing. Just wondering if anyone had heard of this.

Thanks!!
 
M

MissAlexsBP

Guest
Hello!

A few weeks ago I had a fever of 102 and back pain, then it went away within 9 hours, then I got strange hives on my legs and arms and that only lasted for 2 days and yesterday, my wrists, fingers, knees and back were sore. It felt as though I had done some serious excersize, when sadly, I don't do that at all. I googled the symptoms just to see if something came up, as I have heard that early arthritis has been known to happen with CF and I found Hypertrophic Pulmonary Osteoarthropathy which matched most of my symptoms. I guess it's also a component in finger clubbing. Just wondering if anyone had heard of this.

Thanks!!
 
M

MissAlexsBP

Guest
Hello!
<br />
<br />A few weeks ago I had a fever of 102 and back pain, then it went away within 9 hours, then I got strange hives on my legs and arms and that only lasted for 2 days and yesterday, my wrists, fingers, knees and back were sore. It felt as though I had done some serious excersize, when sadly, I don't do that at all. I googled the symptoms just to see if something came up, as I have heard that early arthritis has been known to happen with CF and I found Hypertrophic Pulmonary Osteoarthropathy which matched most of my symptoms. I guess it's also a component in finger clubbing. Just wondering if anyone had heard of this.
<br />
<br />Thanks!!
 
M

MissAlexsBP

Guest
wow! I just found a thread that is exactly like this by Rokiss 12

Apparently I'm not the only one with these symptoms! Thanks!
 
M

MissAlexsBP

Guest
wow! I just found a thread that is exactly like this by Rokiss 12

Apparently I'm not the only one with these symptoms! Thanks!
 
M

MissAlexsBP

Guest
wow! I just found a thread that is exactly like this by Rokiss 12
<br />
<br />Apparently I'm not the only one with these symptoms! Thanks!
 
M

mamerth

New member
Yep!!

I get the rash on my face and a low grade fever. Today is a bad day... almost every joint in my body hurts.
 
M

mamerth

New member
Yep!!

I get the rash on my face and a low grade fever. Today is a bad day... almost every joint in my body hurts.
 
M

mamerth

New member
Yep!!
<br />
<br />I get the rash on my face and a low grade fever. Today is a bad day... almost every joint in my body hurts.
 
M

mamaScarlett

Active member
I've been battling rashes and swelling of the extremities for years now. At points its been very debilitating and so painful I can't walk.
I've been to a half dozen rheumatologists now. The HPO you mentioned is pretty rare. It may or not may be that. HPO is characterized not just by rash, pain or swelling but specifically by really bad bone deterioration. I've been screened for it, and they take xrays of every bone in your body to find HPO.
There's also CF related Arthritis-but thats not per se associated with rashes.
Something that Cf docs are starting to look more closely at is Vasculitis connected to Cf. I've come across so many Cfers with a form of vasculitis.
I started getting rashes and swelling on my legs 8 yrs ago. It can be just a brief episode that appears and leaves. But if it continues, call a specialist.
Hope you feel better!
 
M

mamaScarlett

Active member
I've been battling rashes and swelling of the extremities for years now. At points its been very debilitating and so painful I can't walk.
I've been to a half dozen rheumatologists now. The HPO you mentioned is pretty rare. It may or not may be that. HPO is characterized not just by rash, pain or swelling but specifically by really bad bone deterioration. I've been screened for it, and they take xrays of every bone in your body to find HPO.
There's also CF related Arthritis-but thats not per se associated with rashes.
Something that Cf docs are starting to look more closely at is Vasculitis connected to Cf. I've come across so many Cfers with a form of vasculitis.
I started getting rashes and swelling on my legs 8 yrs ago. It can be just a brief episode that appears and leaves. But if it continues, call a specialist.
Hope you feel better!
 
M

mamaScarlett

Active member
I've been battling rashes and swelling of the extremities for years now. At points its been very debilitating and so painful I can't walk.
<br />I've been to a half dozen rheumatologists now. The HPO you mentioned is pretty rare. It may or not may be that. HPO is characterized not just by rash, pain or swelling but specifically by really bad bone deterioration. I've been screened for it, and they take xrays of every bone in your body to find HPO.
<br />There's also CF related Arthritis-but thats not per se associated with rashes.
<br />Something that Cf docs are starting to look more closely at is Vasculitis connected to Cf. I've come across so many Cfers with a form of vasculitis.
<br />I started getting rashes and swelling on my legs 8 yrs ago. It can be just a brief episode that appears and leaves. But if it continues, call a specialist.
<br />Hope you feel better!
 
S

sue35

New member
I started getting this in the beginning of the year. I went to many doctors and got tested for all autoimmune diseases. None of them would even think it was HPO because of how rare it apparently is. I also tried to tell them about CF related arthritis but they weren't buying it, not even my CF doctor. The only thing that made the rash go away and the pain lessen was prednisone. I still can't walk up or down stairs though.

Hopefully you will have better luck at getting some kind of diagnosis!
 
S

sue35

New member
I started getting this in the beginning of the year. I went to many doctors and got tested for all autoimmune diseases. None of them would even think it was HPO because of how rare it apparently is. I also tried to tell them about CF related arthritis but they weren't buying it, not even my CF doctor. The only thing that made the rash go away and the pain lessen was prednisone. I still can't walk up or down stairs though.

Hopefully you will have better luck at getting some kind of diagnosis!
 
S

sue35

New member
I started getting this in the beginning of the year. I went to many doctors and got tested for all autoimmune diseases. None of them would even think it was HPO because of how rare it apparently is. I also tried to tell them about CF related arthritis but they weren't buying it, not even my CF doctor. The only thing that made the rash go away and the pain lessen was prednisone. I still can't walk up or down stairs though.
<br />
<br />Hopefully you will have better luck at getting some kind of diagnosis!
 
M

mamaScarlett

Active member
for anyone interested, I recently went to Johns Hopkins Vasculitis center in Baltimore, (all my docs are in nyc so it was quite a hike for us)-As soon as I met the docs, I knew in 5 mins I was in the right place.
I've seen the best rheumatologists in Nyc-some world renown docs. Johns hops was the best. For some its probably an extreme thing to do, but I've been living with this for 8 years now and its getting worse as time goes on.
There is still no easy solution to my problem, but I was finally officially dignosed and given treatment options, wheras before- I was told if I wanted to treat it I'd have to live on prednisone forever. I just wasn't willing to do that.
Now there are answers, no cure, but some other help.
 
M

mamaScarlett

Active member
for anyone interested, I recently went to Johns Hopkins Vasculitis center in Baltimore, (all my docs are in nyc so it was quite a hike for us)-As soon as I met the docs, I knew in 5 mins I was in the right place.
I've seen the best rheumatologists in Nyc-some world renown docs. Johns hops was the best. For some its probably an extreme thing to do, but I've been living with this for 8 years now and its getting worse as time goes on.
There is still no easy solution to my problem, but I was finally officially dignosed and given treatment options, wheras before- I was told if I wanted to treat it I'd have to live on prednisone forever. I just wasn't willing to do that.
Now there are answers, no cure, but some other help.
 
M

mamaScarlett

Active member
for anyone interested, I recently went to Johns Hopkins Vasculitis center in Baltimore, (all my docs are in nyc so it was quite a hike for us)-As soon as I met the docs, I knew in 5 mins I was in the right place.
<br />I've seen the best rheumatologists in Nyc-some world renown docs. Johns hops was the best. For some its probably an extreme thing to do, but I've been living with this for 8 years now and its getting worse as time goes on.
<br />There is still no easy solution to my problem, but I was finally officially dignosed and given treatment options, wheras before- I was told if I wanted to treat it I'd have to live on prednisone forever. I just wasn't willing to do that.
<br />Now there are answers, no cure, but some other help.
 
S

sue35

New member
Christian what did they diagnose you with if you don't mind me asking? Also, what treatment options did they offer you. I am so tired of taking the prednisone, which only stops the problem until I go off it, then it starts up again.
 
S

sue35

New member
Christian what did they diagnose you with if you don't mind me asking? Also, what treatment options did they offer you. I am so tired of taking the prednisone, which only stops the problem until I go off it, then it starts up again.
 
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