PRED is Our Frienemy
- Thread starter imaboveitall
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imaboveitall,
Shock, surprise, sarcasm...docs don't want to talk Masto with me...
...in meantime, the Claritin experiment is working - took him off it for a week prior to seeing the Rheumy (who prescribed physio) - son begged to be put back on because it made his legs feel better (he noticed).
After 3 weeks, he has a remarked improvement in mobility (physio helping too). Weird rash on foot is still there and getting bigger - might try Darier's sign again - I think I'm too gentle for sure.
Shock, surprise, sarcasm...docs don't want to talk Masto with me...
...in meantime, the Claritin experiment is working - took him off it for a week prior to seeing the Rheumy (who prescribed physio) - son begged to be put back on because it made his legs feel better (he noticed).
After 3 weeks, he has a remarked improvement in mobility (physio helping too). Weird rash on foot is still there and getting bigger - might try Darier's sign again - I think I'm too gentle for sure.
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Tess, I know, and isn't it weird that he is now adding calprotectin AND lactoferrin, instead of one or the other? He said together they may give a more accurate view...he has no explanation as to why she felt lousy when LF was 105 and well when it is 679. Maybe that's why he OK'd naltrexone so readily...she may baffle him too.
willsm, what in the heck...why would they dismiss it...ask for a tryptase level. If Claritin is working to alleviate his leg symptoms then that is significant. One can have both masto and IBD, V does if you count her urticaria pigmentosa hx and she also has dysauto so I don't get why any doc would refuse to consider there may be concomitant stuff. :yrolleyes:
You need to use a tongue depressor and really stimulate the lesions to get a Darier's. Sometimes heat will do it, V's would always wheal in a hot bath.
willsm, what in the heck...why would they dismiss it...ask for a tryptase level. If Claritin is working to alleviate his leg symptoms then that is significant. One can have both masto and IBD, V does if you count her urticaria pigmentosa hx and she also has dysauto so I don't get why any doc would refuse to consider there may be concomitant stuff. :yrolleyes:
You need to use a tongue depressor and really stimulate the lesions to get a Darier's. Sometimes heat will do it, V's would always wheal in a hot bath.
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imaboveitall,
Simple, they dismiss it because they are the wrong specialists. The Rheumy would have none of it, says Will's got "pain syndrome" and referred us to physio - maybe he has that too, I am happy that he finally has physiotherapy now.
Bottom line, after 3 weeks of Claritin he is no longer flushing - not even in the shower. His legs are not painful anymore (feet still abit). He is generally feeling better, and behaving like a normal kid.
Will is tired of doctors and exams and being prodded right now but I will ask my GP about a tryptase test (he is more open than the specialists) when we go for his regular checkup.
Simple, they dismiss it because they are the wrong specialists. The Rheumy would have none of it, says Will's got "pain syndrome" and referred us to physio - maybe he has that too, I am happy that he finally has physiotherapy now.
Bottom line, after 3 weeks of Claritin he is no longer flushing - not even in the shower. His legs are not painful anymore (feet still abit). He is generally feeling better, and behaving like a normal kid.
Will is tired of doctors and exams and being prodded right now but I will ask my GP about a tryptase test (he is more open than the specialists) when we go for his regular checkup.
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willsm, well, as masto tx is symptom relief oriented, then if Claritin is working then who cares, really...as long as he feels great and is living well. A harmless drug and if it fixes his symptoms you can at least obtain it yourself.
Ask the GP to do tryptase "just for the heck of it" and I'd ask for an immuno consult.
I have gotten every consultation I've asked for as soon as I asked and The Saint asks ME if I want any tests run whenever she goes for labs so I don't GET these docs I read about on here who refuse tests...wtf :stinks: and :voodoo:
Ask the GP to do tryptase "just for the heck of it" and I'd ask for an immuno consult.
I have gotten every consultation I've asked for as soon as I asked and The Saint asks ME if I want any tests run whenever she goes for labs so I don't GET these docs I read about on here who refuse tests...wtf :stinks: and :voodoo:
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imaboveitall, my thoughts exactly, he's feeling better, pressure off - thanks to Claritin.
...about docs who refuse to test - ya. Its been my experience more with the specialists - they don't seem as open to look for issues or oddities beyond their specific focus - GI doc sees BMs are normal, labs are good, ignores leg pain (which started at same time all other symptoms did), finally refers to Rheumy...Rheumy sees no inflamation, labs are good, refers to Physio...BTW they both thought Claritin was a good idea to deal with flushing and encouraged it - but no test.
Thank God that I have a wonderful GP who listens and will test for what I ask and then some. If Will was still in lots of pain, I'd already gone back to our GP, but physio & anti-histamines seem to be the ticket, so I will wait until our next regular appointment, and ask for tryptase level to be checked - no rush now thanks to Claritin - glad I tried it.
...about docs who refuse to test - ya. Its been my experience more with the specialists - they don't seem as open to look for issues or oddities beyond their specific focus - GI doc sees BMs are normal, labs are good, ignores leg pain (which started at same time all other symptoms did), finally refers to Rheumy...Rheumy sees no inflamation, labs are good, refers to Physio...BTW they both thought Claritin was a good idea to deal with flushing and encouraged it - but no test.
Thank God that I have a wonderful GP who listens and will test for what I ask and then some. If Will was still in lots of pain, I'd already gone back to our GP, but physio & anti-histamines seem to be the ticket, so I will wait until our next regular appointment, and ask for tryptase level to be checked - no rush now thanks to Claritin - glad I tried it.
