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sisterlynr

Member Since 20 Oct 2012
Offline Last Active Dec 30 2013 04:55 PM
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Posts I've Made

In Topic: DH Photo Bank

19 November 2013 - 07:39 PM

I asked my dermatologist about Aczone but since I was allergic to sulfa, said I couldn't tolerate it.

 

From what I read it takes several weeks to ease the rash. .. like 2 - 3 months.  Posting a web site if ok with the moderators?

 

http://www.aczone.com


In Topic: How Long And How Much Gluten Needed For Gi Test?

19 November 2013 - 07:16 PM

I doubt they will decide to do a colonoscopy at a doctor appt. with all the prep you have to do. You should have time to gluten up.

http://www.curecelia...luten-challenge


However, if you are diagnosed with DH that is an automatic diagnosis of Celiac.



http://www.curecelia...erpetiformis-dh



http://www.curecelia...py-still-needed

 

 

 

I have had colon issues for years and family hx (1 uncle 3 aunts deceased) with colon cancer.  Cousins with Celiac per biopsy.  I have had a colonoscopy every other year since I was in my 30's.  One year I had 3 colonoscopies and one that year included the EGD at the same time.  They were always looking for cancer but only found red patches of inflammation.  

 

I was scheduled for a colonoscopy and EGD this summer but the GI wanted to do separate procedures and my co-pay would be over $500.00, which I do not have. . . on my limited disability income.  Since he wouldn't do as I asked, I cancelled the appointment.

 

I am going to see a GI that will do both procedures at the same time.  They will schedule the procedures on my first visit, due to my history and I have my med recs to give her.  The prep is worse than the procedure, in my opinion.

 

 I have had 3 EGD's that I remember and was never told I had Celiac.  One was because the GI said my stomach was way too tender and thought it was cancer.  One was to check the duct after gallbladder removal, thinking I had developed another stone.  The stone finally passed as they saw the damage to the duct, this one resulted in Pancreatitis which was horrid and lasted several months.  The other EGD was in 2010 and although I asked the GI to biopsy for Celiac, he failed to do so. . . I wasn't very happy when I woke up.  He did stretch my esophagus during the procedure.

 

Will see what December holds for me.


In Topic: How Long And How Much Gluten Needed For Gi Test?

19 November 2013 - 04:47 PM

See page 2, the last paragraph in the right column.

http://www.curecelia...5_Diagnosis.pdf

 

In other words..... you're already too late to start glutening yourself.

 

:(   Well . . . I will discuss this with the GI and see what goes.  I had a polyp removed and my esophagus stretched in 2010 so this isn't an elective procedure.  My iron is low again and my PCP is adamant that I have both procedures.

 

Thanks for pointing me to the information.  


In Topic: Another Newbie With Questions And 2 Glasses Of Wine

19 November 2013 - 12:27 AM

I made notes on the Dapsone thread that I started.  

 

The itch is intense and when I first took Dapsone I had relief for about 4 months.  The lesions started healing and the itching was reduced greatly.  That is why they gave me the DH diagnosis.  If your rash responds to Dapsone, it is a sure sign it is DH, per my doctors.  My blood count came up and I begin to lose weight and all looked good for me.  After that, I suppose the sulfa reaction kicked in and caused a different rash and intensified the itching all over my body.

 

I was told that before doctors would biopsy via EGD or even the skin, they would try Dapsone and if the rash cleared, it confirmed DH.  

 

When I asked Dapsone users to respond, I realized something was wrong as several wrote their rash healed within days even though eating gluten.  I knew my rash was either not DH or I was having a reaction to the medication.


In Topic: Dapsone ~ Members Taking Dapsone Please Respond.

18 November 2013 - 11:06 PM

This is my first post and don't mean to hijack this thread, but I have asked my dermatologist to prescribe dapsone as an aid in diagnosis and treating a migrating and moderately itchy rash that I have been dealing with for approx 3 months. It is my understanding that DH rashes are intensely itchy, but mine is a 4 on a 10 point scale. I have been trying to be gluten-free with the occasional cheat ...and when steroid creams etc haven't worked I asked for bloodwork and biopsies.. The results were negative for gluten issues, but my research has convinced me that avoiding gluten for a while can then lead to false negatives.
So.my dermatologist is willing to see if dapsone clears the rashes (back, elbows that went away and then returned, wrists, groin) but is extremely cautious about dapsone's affect on RBC's and causing pernicious anemia. Perhaps my questions are beyond the scope of this site, but I wondered:
1. Were members taking dapsone checked for G6pD and CBC before starting a dapsone regime and was the dosage increase a little each week after recheck lab work. My dermatologist is planning on initial dosage 25 mg 4 times daily for a week and increase 25mg each week until max of 100mg qid after weekly labs are run.
2. Are all of DH sufferers rashes super itchy? The only reason I think I'm not DH is because the persistent rashes that don't respond to anything are not super itchy. My itchiness is kind of similar to how you feel after a haircut and the cut hair that falls into the neck/collar area bugs you a lot.
3. I have tried to note what foods make me break out and I believe salt and dairy contribute and I realize that is consistent with DH.
4. Finally....whew!...if it isn't DH....can foods and latex (latex was positive on patch test) cause excema type rashes that come and go.
I apologize for the lengthy and rambling post. I have lurked on this site......and as I got more frustrated..the more I needed to reach out. Thanks!

 

 

  • I had labs before my PCP ordered Dapsone and she ordered labs each month after starting the drug. 
  • I took .25 twice a day = 50
  • They then prescribed x 3 = 75 thinking I wasn't on a high enough dosage.
  • I took x 4 a day = 100 and I became so sick, temp and fatigue that it was certain part of my rash was an allergic reaction.
  • I was allergic to sulfa drugs and Dapsone is sulfa based, cannot take it now
  • My rash has had amber colored fluid and other lesions are not blistered
  • The healed areas are rough,  purple or dark red in color
  • The last biopsy pointed to Lupus but my doctors do not agree on that diagnosis
  • I have experimented by eating gluten and each time I have an outbreak either of new lesions or renewed old ones.
  • These lesions are horribly itchy like a 10 out of 10 , you scratch until they bleed and they still itch.
  • I feel a stinging sensation and once scratched the area burns like a sunburn feels.
  • I am currently taking another drug that is also used for DH and/or Malaria.  Some relief but still have the rash.

I wish you the best in determining what your rash is . . . .

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