Do Any of you suffer from hidradenitis suppurativa?

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OhWell
New Member


Date Joined Feb 2008
Total Posts : 11
   Posted 7/29/2008 1:00 AM (GMT -7)   
I have an appointment at the end of the month with a G.I doctor. My hematologist suspects chrons.
I've not been well for about two years now. Major fatigue, joint pain, low grade fevers and recently diagnosed with tachycardia (on atenolol for it) Last year my PCP ran some blood tests and they came back showing high WBC, platelets, and a sed rate of 48. So he ran them again (still high) and did the RA test (neg) , then once again, high again and finally sent me to both a rheumatologist (because of sed rate and platelets) and hematologist (for platelets and WBC). Anyway, the rheumy suspected spondyloarthropy (sp?) because of diarrhea, joint pain, and lower back pain. She ran tests for lupus, sjorgens(sp?) hep c, hep b, tons of stuff, all normal except of course, the platelets, wbc , sed rate and now c reactive protein? Plus I had a very high complement 3 and somewhat high complement 4 level, though no one can explain the reason that would be high... only that it would be low if i had lupus. She rulled out the spondy after doing a mri of lower back that was normal. and basically gave up on me.
While seeing her she wanted me to see a dermatologist for skin problems. I was told I had hidradenitis suppurativa.

Sorry this is so long, but i'm sure you all feel my pain when it comes to a diagnosis. Please hang in there with me.

So now to the hematologist. She suspected low iron may be causing my platelet levels, and wanted to check my spleen... then do blood work again in three months. spleen scan was normal, ferritin and everything else was normal but iron saturation was low. Three months later, plateletts and wbc were still high so she wanted to do a bone marrow biopsy. Here's the results of that...
Diagnosis
Bone marrow aspirate, clot section and biopsy:
-mildly hypercellular marrow... the cellularity is increased to around 60-70%
-no bone marrow iron store, no ringed sideroblasts.
-one benign lymphoid nodule on clo section... the write up about it says, one benign lymphoid nodule is present on the clot section, composed of mature small lymphocytes.

No iron, but my rbc have been normal. She suspects possibly Polycythemia Vera but not sure. And wants me to see the G.I. doc,'
i gave blood again last week, platelets still high wbc still high and iron sat, low. (And I just came off of three months of antibiotics for the hidradenitis suppurativa which didn't help one bit.) i'm on an aspirin a day to help prevent clotting and go back every six months for blood work. Now it's just wait and see what happens.

So now i'm off to the G.I. doctor.... i'm so sick of doctors and no answers.

Anyway, I read there may be a link between hidradenitis suppurativa and chrons disease. So I was wondering if anyone on this board may have it.

Also wanted to add that i've had stomach problems all my life, frequent bowel movements, cramping, nausea. I also had many many bouts with acute pancreatitis as a kid (1st hospitalized at 10) with no known cause. They removed my gallbladder thinking i may have had microscopic gallstones causing it, but no. The bouts have slowed down and i've gotten older. I have had it in a few years but have gone to the ER thinking I had it because of horrific paina nd vomiting with no DX..

Sorry to pour out so much, but i would llove to hear if any of this sounds familiar to your own stories. I'm so frustrated.

Thanks so much for taking your time to read this.
~OhWell

Post Edited (OhWell) : 7/29/2008 2:03:44 AM (GMT-6)


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 7/29/2008 3:54 AM (GMT -7)   
Welcome to the healing well forum. I have no experience with nor knowledge of this skin condition, but I wanted to encourage you to be patient for just a little longer. With all your joint and digestive issues you really do need a thorough gastrointestinal work-up done. But oh, isn't the medical merry-go-round frustrating and exhausting? It is nearly impossible when you begin living in what i call medical time to function normally in the world of real time.

I hope someone on the forum will come along soon with more insight than I can offer.

Hugs from the heart
Belleenstein:

30+ years living with Crohn's.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/29/2008 9:19 AM (GMT -7)   
Hi and welcome to healingwell!
Yes I have H.S. and I agree with belleenstein you need to have a gi workup. I know you are tired of docs, but you need to know what is going on and start treatment. Speaking of which what have they treated your H.S. with?
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


OhWell
New Member


Date Joined Feb 2008
Total Posts : 11
   Posted 7/29/2008 5:13 PM (GMT -7)   
Thank You both for the replies. It's nice to speak with others who understand the frustration.
As for my H.S. I was put on cephalexin 500 mg. twice a day and given a benzoyl peroxide wash to use twice daily for three months. The dermatologist said other than that the treatment would be surgery to remove the areas infected. I don't have insurance, so I gave the atibiotics and wash a shot and i've not been back because if my only other option is surgery I can't afford that right now and fankly I don't feel like dealing with it. I figure I better get the rest of the stuff taken care of and address that later. I've lived with it for years, so I can deal with it for a little longer.
What is your treatment for it?

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/29/2008 5:51 PM (GMT -7)   
some antibiotics, mainly drainage and get them dug out, which feels much better then just letting them burst on their own especially if they burst underneath the skin. sooo painful
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Mihee
Regular Member


Date Joined Jan 2005
Total Posts : 155
   Posted 11/26/2008 11:53 AM (GMT -7)   
Hello,
I have also heard that there is a connection between Crohn's and hidradenitis suppurativa. I have Crohn's and my oldest daughter has hidradenitis suppurativa. Remicade is being looked at for hidradenitis suppurativa, it is a great help with my Crohn's.
Take Care,
Mihee
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