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Prednisone Advice/experiences?


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#1 jlaw

 
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Posted 16 December 2012 - 02:55 AM

So yesterday I had my four year old biopsied for DH. It was one of the most frustrating experiences of my life. This is the same dr that did my skin biopsy after literally arguing with him that I did not have scabies. So I walk in with my son whose skin has started to blister in 4 different patches. The dr tells me my son has scabies. (Here we go again.) I say no. He says four year olds don't get DH. Fair enough, it's rare. BUT it is genetic, and his skin is blistering. It's worth following this up. So he says we'll do the blood test first. I say no. My blood test came back negative, and my biopsy positive. Let's just go straight for the biopsy. He calls me ignorant and says 'If the mother wants a biopsy, we do a biopsy' in such a condescending way I could've punched him.
(Can't believe he didn't learn from last time!)

So while we're actually doing the procedure (which let me tell you is painful for a mother to watch), he says to my four year old "how many times do you want to punch your mother for putting you through this pain?"


End rant. Take a deep breath, and remember I need to do this for my son.

ANYWAY, while we're there, he saw how bad my skin is. He wrote me a prescription for dapsone with no suggestion of follow up bloods. No, I won't be taking that under his care. When I brought that up to him, he said we could check my blood in a month.

He also wrote me a prescription for oral prednisone. This is the one I am confused about. I know it can be an issue taking prednisone before testing, but I'm done with my testing. What are people's thoughts/experiences about this?
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DH dx by skin biopsy July 2012

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#2 ravenwoodglass

 
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Posted 16 December 2012 - 08:04 AM

You should report this doctors behavior to his higher-ups and or the AMA. To say such a thing to a child, especially since you are already diagnosed with DH yourself is not excusable. IMHO he should have just diagnosed based on the rash and family history.
As to the prednisone, for me it was very helpful in clearing up severe outbreaks. I took the short term dose that has decreasing dosage over 10 days.
Personally I would skip the Dapsone as between the Pred. and being strickly gluten free both your DH issues should clear up.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 frieze

 
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Posted 16 December 2012 - 09:08 AM

You should report this doctors behavior to his higher-ups and or the AMA. To say such a thing to a child, especially since you are already diagnosed with DH yourself is not excusable. IMHO he should have just diagnosed based on the rash and family history.
As to the prednisone, for me it was very helpful in clearing up severe outbreaks. I took the short term dose that has decreasing dosage over 10 days.
Personally I would skip the Dapsone as between the Pred. and being strickly gluten free both your DH issues should clear up.

Yup, doc needs reporting, ASAP.
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#4 Celiac Mindwarp

 
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Posted 16 December 2012 - 09:12 AM

I am so sorry you have been treated like this. The doctors behavior was disgusting, especially what he said to your son.

I had a similar experience with my son recently when I asked for a celiac blood test for him. She asked which symptoms he had and when I mentioned that I understood behavioral issues were common she said in the most patronizing tone 'well if we tested every child with behavioral problems...'. My son was about to have skin prick testing, and it took 3 of us to hold him and he screamed all the way through.

He is very sensitive (which had she asked was what I meant by behavioural stuff) and I think he was so bad because Mummy and the doctor were arguing.

Well done for sticking up for your son.
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#5 squirmingitch

 
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Posted 16 December 2012 - 09:36 AM

I don't know hwy I am continually shocked by the horrid, unfeeling things that doctors say but I am. It makes my stomach churn with what he said to your son. I agree --- report him --- absolutely!

I have no advice on the prednisone as I have never been on it nor Dapsone. I was on Dexamethasone & it worked for the itch but the second I went off it the dh came roaring back. And the Dexamethasone made me bounce off the walls 24 hours per day --- I cut myself down to 1/4 of a pill.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#6 jlaw

 
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Posted 16 December 2012 - 08:30 PM

oh thanks Friends. To be honest I hadn't even thought of reporting him. This is India, and although this is an internationally accredited hospital (the Dr himself trained in the States) the culture is still very much that of the Dr being god, always knowing best and patients ignorant of their own health conditions. I think it was actually quite confronting for him - I am a nurse from Australia, so my attitude to him was quite different from his usual patient dealings. For me to push for something different than what he was offering was probably an affront to his own attitude. I will seriously consider reporting him.
And thanks on the prednisone advice. One of my concerns is the reducing regime thing. He prescribed 8mg but nothing about how long for, when to come back etc.. even with my nursing background, I'm so tired of trying to figure everything out on my own. I rely so much on google and all of you!
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DH dx by skin biopsy July 2012

#7 Takala

 
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Posted 17 December 2012 - 12:24 AM

You have to taper off of prednisone if you take it. I had a nurse friend years ago really, really emphasize this to me, and to warn that this stuff should not be taken frequently, only if there was no alternative, and to never just stop it all at once. This was in response to how surprised I was, that taking it for something else also seemed to help my joints. I'm not fond of the side effects, but it's necessary if one gets really bad poison oak, as I have a few times. But oh, when it wears off, it's not so great. One time I could see the otherwise okay doc, sort of struggling mentally with writing down the schedule for the tapering dosages, he paused (you have a set quantity of pills, and you want to write this in a way that it is fewer and fewer, until it is just one for a few days, then that's it, so it would be a certain algebra problem) and I think I said something to the effect of, oh, just like the last time, right ? And he said "Yes! You're going to start with 4 a day, and we're going to go for 12 days" or something like that. So when I got home with this, I just looked on my old Rx bottle and wrote it out for myself with a daily checklist, using my fingers to divide them up to make sure I was going something like this:
xxxx
xxxx
xxxx
xxx
xxx
xxx
xx
xx
xx
x
x
x

and that works out to 30 pills in the bottle, divided into 4 levels of decreasing dosages. This is not being given as medical advice, but as an example of what has been prescribed to me in the past. I don't know how much medication is in the pills you have been proscribed, and how that would translate. Do not take a larger dose than you are supposed to take. I don't know what to tell you other than I am a bit worried this clunker has just given you preddy with no instructions :angry: and I can tell you that I have been lectured about taking a hefty dose and then suddenly stopping is a BIG no - no. It will depress your own natural ability to make hormones, and then nature hates a vacuum when the artificial substitute stops showing up !

You know about not using iodized salt or kelp, right ? That iodine makes the rash worse.

I swear. Anybody with some Irish/English background, we ought to just be born with a warning sticker stuck on our foreheads "Look Out, Wheat Intolerance Genes More Likely Present :P " for those cross- cultural moments.
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#8 mushroom

 
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Posted 17 December 2012 - 01:48 AM

Takala, that sounds a lot like my taper schedule for when I had to take Valium to get any sleep while I was on Prednisone (for poison oak - my cat used to roll in it like catnip) :lol:

I used to take 5mg Valium for sleep while I was being constantly glutened without knowing any better, but when on Prednisone that didn't come anywhere near hacking it for sleep. Because my PCP knew I was not an over-user (one at bedtime only) she did not monitor closely how much she prescribed me so I had some extras :) I self-medicated with 10mg but trying to get back down to 5 was a beotch. I cut the second 5mg into quarters, and then had to do it in 1/8ths to start with, so an eight-step-down to get back to 5. On the other hand, quitting the 5 was no problem after gluten free - I often didn't remember to take them and that showed I no longer needed them. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#9 Darkfire Ann

 
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Posted 17 December 2012 - 09:09 AM

I feel for you and your son and wonder why he was in pain? They shot me full of lidocaine. I was numb in the area until midnight each time. I felt nothing. I am so sorry you went through this with your son. I will tell you it may be rare but I have my baby records and I was 1 month and five days old when I got DH on my bottom from barley. I am on Dapsone and cannot take pred. I cannot keep it down. I wish you luck and healing for you and your son.
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#10 RiceGuy

 
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Posted 17 December 2012 - 10:50 AM

So sorry that you're having to deal with such a rotten doctor. If it were me, I'd have walked out, and reported him too. But then I learned during childhood that doctors didn't have a clue, thus haven't been to any since. It continually irritates and surprises me that people still believe in "mainstream" doctors.

There is that saying; 'Fool me once, shame on you. Fool me twice, shame on me.'

Sorry if that's a rant. I haven't anything else to say. Grrr...!
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A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.




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