23 And My Body Is Decomposing

[BlahSoDepressing]

In a pretty depressed state at the moment. Not sure if this will help (venting) but what the hey.

 

So I was diagnosed with AS when I was 19. Luckily it hasn't crippled me or anything. I have occasionally pain in my buttocks and sometimes have trouble sleeping from back pain but overall, it could have been worse. To be perfectly frank, still haven't come to terms with having AS. I mean, lets be real, at the young age of 23 its hard to really grasp that you have this rare disease.

 

5 months ago I was getting bit by mosquito left and right. It didn't help that I would go play soccer in high grass but I digress. My bites were pretty bad and it didn't help that I had a tendency to try to "squeeze out" the mosquitoes saliva (silly I know. But its something I always did since I was young). Usually these squeeze out sessions would heal in a week or so but for some reason three bites did not go away. It actually swelled into a blister. I didn't freak out at this point because according to youtube, alot of people get blisters from mosquito bites.

 

When it DID start getting alarming was that it started forming on my arms. These itches. They weren't to the point where I couldn't sleep at the night but it was pretty itchy. As I started getting, what I assumed were bites, on my arms. It started slowly coming on my body.

 

I ended up going to a derm. I didn't want a skin biopsy done because I mean, lets be serious, even though its a small operation, its an operation none the less. I was prescribed mupirocin for two weeks. It worked alright but the sheer number of "bites" i had made it impossible to put it on every single mark.

 

After three weeks, I began to get more and more bites. A single one developed mid back, a couple on the underside of my thighs, which doesn't heal but it makes contact with the chair every time I sit. I decided to go to another derm, one who has more reviews. He looked at me and recommended I do a punch biopsy. At that point I agreed because I needed to get to the bottom of this. He prescribed me prednisone for 10 days. Surprisingly the pred. worked, but I wasn't happy with it because if it was up to me, I would like to avoid steroids. On the eighth day onward, the little "bites" or rashes started to come back. I connect this with that fact that it was a tapering dose so as the strength was tapering down, it wasn't strong enough to combat the rash anymore.

 

I received a call from the doctor who said the results came back. Not cancer (yay! Never assumed it was though) and that the results show a reaction from either drugs (don't do) or bug bites (which I assumed).

 

Problem was, for bug bites this seemed too weird. I've had these bites for the past 3 months now.

 

After the derm seemed genuinely stumped, I decided to go to another well rated derm. He looked at my scabs, I gave him the information that I was provided from the past two derms, and he confidently said "its a skin infection. Probably from the bug bites. Take some cephalexin and this will clear right up. If the scabs are weepy, put the mupirocin on." With that, I was on my way.

 

Unfortunately the cephalexin didn't work. Now the mupirocin has lost its effect. I mean what do you expect, it was only supposed to be used for two weeks but I've been putting it on for the past 3 months on and off.

 

I went back to the most recent derm and voiced my concerns. This is when he said it might be bullous (disease :/  ) or another type of infection. I told him that I was tired of wasting my money and to do whatever test is required. We ended up doing another punch biopsy (this one to send to see if I have an autoimmune disease) and a culture. He prescribed me some augmentin (two days in. Not sure if its working) and some cormax. He explained that if the cormax works then it might be an autoimmune. If the augmentin works, its just a infection. Of course I just bought the augmentin. If the cormax works, I can safely assume that I have ANOTHER autoimmune disease  (lucky me). Yes, the results will tell me either way in a few days but I want to live in ignorance until then.

 

My ear cartilage, both sides, started getting these scabby thing. Doctor said it was dry skin initially. Like all the other derms. he was wrong, it started getting worse. Started weeping at some parts. Im at the point where Im nervous I'll have to get something amputated because these wounds have been open so long and it just never scabs, which is the opposite of some wounds which have become thick white scabs, either from the constant cream application or infection.

 

I keep asking myself "why would my skin biopsy come back as bug bites though? WHY"

 

With all that being said, I hope I get hit by a car or something cause having two relatively rare diseases absolutely blows.

 

Here are some fun pics to guide you through your day. Have a wonderful day guys!

 

[IrishHeart]

Those are not "bug bites" hon. They look like blistering lesions to me. IMHO

 

Who Dxed you with AS? Are you positive for  HLA-B27?

 

(I supposedly had "undifferentiated spondyloarthropy" too, but I don't)

My severe back, bone and joint pain was caused by celiac

and malabsorption and osteoarthritis. A few disc issues from a car crash.

 

It's greatly reduced now--off gluten and healing ---and physical therapy for 2 years.

I could not walk, sit or lie down without excruciating pain. That's gone for the most part..

 

But at one point, the rheumy wanted me to take methotrexate for the rest of my life.

I don't need it.

My point is...have you been tested for celiac?

 

What symptoms are you experiencing?  

[squirmingitch]

Okay, 1st off, who dx'd you with AS? What kind of doc? What tests did he/she do? And why did you go to that doc in the first place? Can you detail that more for us please? And by AS, you mean ankylosing spondylitis right? 

Do these places itch BEFORE you notice anything there? You itch & look & there's nothing there????? Then later the "bite" comes. Do you always get blisters or some are & some are not? Do they present bilaterally? Echo themselves on each side of the body? Some do, some don't?

What time period lapsed between the prednisone & the biopsy? And what exact tests were performed on the biopsy? Get copies of your med records & the test results & post them please.

Do these places ever burn or sting, maybe at the same time they itch, like a sting/itch combo?

Do you now or have you ever had any GI issues. Before you answer that --- at 1 time I would have said no b/c I thought what I had was normal as in --- everyone has to be "off" sometimes right? Maybe it was this I ate or that I ate or that I was upset or stressed out. So now, answer the question please.

I see while I was typing that IrishHeart has posted. So we're both asking about the AS dx.

 

And BTW, those look very much like they could be dh.

[BlahSoDepressing]

Hello. I got diagnosed by an rheumatologist. Had blood work done, came back positive for HLA-B27.  This was after getting an MRI done. Had a slight fusing somewhere in my spine. I went to the rheumatologist because I experienced these pain in my buttocks region. I thought it was from overdoing it in sports but after stretching it still persisted. Got to the point where I couldn't get in the car. Some days it was better, other days it was hell. Worst part was it would travel to one side to the other. 

 

Regarding celiac. I actually stumbled across this disease today. I googled "rash came back after prednisone." One of the results came back with DH, after reading a bit about DH I thought to myself "hey, that really sounds like what I have." Of course I was and still am in denial that I can have ANOTHER disease in addition to my AS.

 

I guess there is nothing I can do but to slowly accept it. The doctor called today regarding my culture test and he said it came back negative for bacteria so I guess the chances are quite high that this is autoimmune. My second skin biopsy will come back in a few days or so. I keep telling myself "the first biopsy said bug bites. Why is this happening to me."

 

@squirmingitch. 

1. Yeah the itches start with nothing there. As I itch them a bump will appear.

2. I have about 15 "bite" areas. Only three blistered. But they were pretty big blisters. Like half the size of a gobstoppers. The areas that don't have scabs, its like these dots/bumps. Worst part is, the scabs AREN'T healing at all. So weird.

3. Yep. At least three are bilateral. Read about this this morning as well. Once I got past the initial denial and anger, I was pretty fascinated that my body could have a disease where it could mirror these rashes. Pretty cool.

4. Which biopsy? I had two done. The first time it was biopsy then pred. for 10 days. For the second one, I've been off pred for about 2-3 weeks now.

5. Yeah these areas burn but only after I itch it. I know its bad to itch it so I try to itch the skin around it. It still ends up weeping a bit though.

 

Regarding the GI question, not sure to be perfectly honest with you. Never thought about it. 

 

I mean I guess it could be worse. I could still have bullous disease. My only concern is, I hope I don't have a disease where it will leave permanent scarring thats visible everyday. 

[BlahSoDepressing]

Forgot to mention that on a itchyness scale of 10. My itches are about 3 or 4.

[squirmingitch]

I'm super pressed for time at the moment but will get back to you asap. A couple things for now. IF YOU WANT TO GET AN OFFICIAL DX OF CELIAC DO NOT STOP EATING GLUTEN. DO NOT EAT GLUTEN LIGHT. You will have to be off the oral steroids for about 3 months & the topical for a bare minimum of a month. It's very difficult to get a celaic dx when you have dh as the celiac blood panel turns up a false neg. 60% of the time for those of us with dh. Your best bet is a dh biopsy but it has to be done correctly. Not ON a lesion but on clear skin adjacent to a lesion & there is more to that but will have to get back to you later.

 

I suggest you do get tested for celiac disease. A dx of dh IS a dx of celiac. 

 

Best thing for you to do right now is to read thread after thread on this dh forum & you will learn all of what you need to know, otherwise I will have to have time to type everything out for you.

 

From my understanding, just having the HLA-B27 gene does not mean you have or will get AS but that you at least have the gene for it & it's something like 1 or 2% of those with the gene actually have AS. So it's still kind of up in the air of you truly do have AS or not. You could be misdiagnosed. 

 

I'll get back to you when I can.

[IrishHeart]

I urge you to get a second or third opinion on the AS diagnosis. One thing I have learned is...they get it wrong sometimes!

 

Please, get tested for celiac. You need a biopsy for DH done.

 

If, in fact, undiagnosed celiac is fueling the pain situation, if you go on a G F diet, you could reduce the pain.

 

It's worth investigating, IMHO.

Being positive for certain genes associated with various AI diseases, does not mean it's a done deal. It's just a "risk factor".

[squirmingitch]

On the 1st biopsy you had, the derm was checking for cancer & that means he took a biopsy directly ON the lesion. There was no biopsy for autoimmune or dh done so that biopsy doesn't count. 

 

The second biopsy doesn't count b/c you had been on steroids. He says he did a test for autoimmune but you had been on steroids --- this will make false negatives. Why don't they know that?

 

Seriously, if I had to choose between having AS or celiac disease; I would choose celiac disease any day of the week. With celiac, once you're on the gluten-free diet then you begin to heal & you don't have to take any meds for it & it won't get worse as long as you're gluten-free. So I'm hoping for you that the AS is a misdiagnosis & you have celiac instead, I know that sounds odd to say but..... I mean the best for you.

 

I really want you to read these 2 threads all the way through & also the links they contain:

 

http://www.celiac.ni...Dermatitis.aspx  forget what they say about it's location on the body --- that's bunk --- we who have it can tell you it appears anywhere it darn well pleases & while it does appear where they say that's not the ONLY places it appears & not necessarily the first or most frequent places. You might want to print a copy & take it to the derm.

 

http://www.curecelia...gluten-exposure

 

http://www.curecelia...ve-the-blisters

 

http://www.curecelia...is-dh-diagnosed

 

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

 

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

 

http://www.curecelia...testinal-biopsy

 

And the rash does not ALWAYS present as water filled blisters --- that happens when you've got it BAD. 

http://www.celiac.co...ns-of-dh-types/

 

The use of either topical or oral steroids within 2 months prior to the biopsy will make the biopsy negative whether it truly is negative or not.

 

Also, one MUST be have been & continue to be eating a full gluten diet or outhe biopsy will turn up negative. If one is "gluten light" the biopsy will turn up negative. You can't just eat a few crackers the day or for a few days before the biopsy --- that will not work. YOU MUST BE EATING A FULL GLUTEN DIET.

 

And finally, here is the current FULL celiac blood panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA 

 

The DGP test was added recently to the full panel.

 

 

Also can be termed this way:

 

Endomysial Antibody IgA

Tissue Transglutaminase IgA 

GLIADIN IgG

GLIADIN IgA

Total Serum IgA 

Deamidated Gliadin Peptide (DGP) IgA and IgG

 

And if you got a endoscopy then it needs to have 5-8 biopsies taken not just one.

With dh, we still get the intestinal damage but tend to have few & mild GI symptoms compared to celaics without dh. With us, the disease presents in the skin & this is why the blood tests turn up false neg. for us so often. The antibodies get deposited under our skin.

[nora-n]

The biopsy for DH will mostlikely be negative if it is near the blisters; it should be taken far from the blisters, and they recommend behind the knees or inside the elbows. The reason is the rashes use up IgA and they must biopsy a spot with IgA still intact

[squirmingitch]

Nora, could you please provide a link or reference for that info.? This is the 1st time I've ever heard the biopsy should be taken far from a lesion or behind the knees or inside of elbows.

[BlahSoDepressing]

Hello,

 

Thank you for taking the time out to write those responses.

 

I'll probably slow get on it. Don't want to seem difficult, just not in the right state of mind at the moment. Don't want to come to grips on whats actually happening.

[squirmingitch]

YVW!

 

No worries mate; everyone has to go at their own pace. We're here when you need it.

[BlahSoDepressing]

So updates. I have an appointment at Johns Hopkins, which is one of the top hospitals in the country. I mention that because even though I say its really good at dx'ing, Im a bit afraid that they won't be able to figure out whats wrong with me.

 

With everybody saying tests can come back negative from the simplest of mistakes, whether its the wrong area or because I was on steriods or haven't been eating gluten, has me scared that they'll get a negative when I'm a positive.

 

Im hoping that because they're such a leader in dermatology that they would know how to correctly dx this but still, im afraid that they might do the test and it may come back as negative and i'll be at step one again.

 

The appointment is for this coming wednesday. I've been off gluten for about 2 weeks now. Been off the mupiricon and pred for a while now. I would say about a month. The lesions are getting bad. For some reason, they keep scabbing over white. The pics in the OP was taken november 23rd. Three weeks later, it has gotten to the point of these.

 

[pricklypear1971]

I'm sorry, that looks so uncomfortable.

That reminds me of plaque psoriasis. Did you have the plaque when you went to the doctor?

[BlahSoDepressing]

I did and they thought it was from bug bites/skin infection.

 

So far I taken two antibiotics and they both did not work.

 

Augmentin, the one I last took, actually cause muscle pain. Had to go off of the meds three days into treatment.

[pricklypear1971]

Have you seen pics of plaque psoriasis? Do you think your lesions look like that?

[BlahSoDepressing]

Yep, I googled it yesterday as soon as you mentioned it. Honestly doesn't look like it.

 

I've been holding out hope that this isn't DH and that its just bug bites because from the photos I see of DH, this doesn't look like it either.

 

But then I realized that if it shows up on one side, it shows up on the other side and makes me think again that I have celiacs. 

[pricklypear1971]

There are other autoimmune skin rashes that are bilateral. I don't know if that's good or bad news.

I've always said not to judge a rash for dh based on appearance, but by reaction.

Do you react to iodine rich foods like egg yolks, asparagus, seaweed? If you react (rash flares) that's an indicator of dh.

Have you read about differential diagnoses for dh? I wonder if any if those rashes would look similar.

[BlahSoDepressing]

There are other autoimmune skin rashes that are bilateral. I don't know if that's good or bad news.

I've always said not to judge a rash for dh based on appearance, but by reaction.

Do you react to iodine rich foods like egg yolks, asparagus, seaweed? If you react (rash flares) that's an indicator of dh.

Have you read about differential diagnoses for dh? I wonder if any if those rashes would look similar.

 

Bleh. And the stress continues. I eat a lot of dried seawood and it doesn't seem as though its getting worse or better.

 

I am attaching the two biopsy results I received. The culture was negative, as I mentioned, but the test for bullous, or auto immune ( i forgot which) also came back as negative. The skin was taken right next to one of my blisters. Again, I can't tell if it came back negative because I was on pred a few weeks before or whatever. I just want to know whats happening to me. I wish there was a real life Dr. House. Hopefully my appointment at Hopkins will go well tomorrow. My pessimistic side says probably not though. Three derms already checked and they didn't know what was going on. 

 

[pricklypear1971]

But what happens if you STOP the seaweed and other high iodine foods? That's the big question, since you're eating so much.

I wished many times for Dr. House.

If they didn't specifically look for iga pattern dh they wouldn't see it. You'd have to ask the lab if the correct biopsy/solution was used and if it was looked at (dh is a visual dx of stained skin). The difference between linear iga disease and dh is evidently the pattern (and gluten...).

Again, dh dx is an opinion (sort of)not an antibody test. It's subject to interpretation of the person running the lab test.

[squirmingitch]

I don't understand why you have been off gluten for 2 weeks when I told you on Dec. 10th that YOU MUST BE ACTIVELY EATING GLUTEN UNTIL THE BIOPSY OR  YOU WON'T KNOW IF IT'S A FALSE NEGATIVE OR A TRUE NEGATIVE.

I am afraid you are working against yourself here. You seem to want a correct dx so badly yet you have in essence sabotaged your chances by going gluten free.

[BlahSoDepressing]

I've actually been on and off of gluten for about three years. Way before the idea of celiacs came into mind. The only reason why I didn't start eating gluten was because my appointment was 4 days out. I thought that that wouldn't be enough time to consume enough gluten to get an accurate result. 

 

Went to the doctors yesterday. When I mentioned that it might be celiacs, he looked at the scabs and immediately ruled it out.

 

In his opinion he said that he was infected eczema. He said it in a way that he was pretty sure. But then again, the previous doctor also thought it was bug bites.

 

My brother says I should stop being so negative and that I have to believe that this will work. My  response to that was I believed that the first doctor knew what hew as doing, that I believed that the second doctor will cure me, and that I was even fooled again by the third doctor.

 

He was getting a bit frustrated because I was questioning his prescription. Why shouldn't I do. He prescribed me a higher dose of pred. If the second doctor already gave me pred and was only a temporary fix, what makes this doctor think that upping the dose will solve anything. I was asking what the back up plan was if this didn't work. He said just wait two weeks for the check up and that it'll most likely work. Thats what the previous doctor said and then I developed muscle pain from the augmentin.

 

I mean I guess there is a chance that it'll work. He prescribed me another antibiotic with the prednisone.

 

I know prednisone is a drug that is a temporary fix. When I explained I would like to not take steroids, he said that this was the best plan.

 

I really hate steroids. 

[pricklypear1971]

I understand. I really hate them, too. My body did NOT like them.

I really don't know anything about eczema, except it IS an autoimmune disease. Here's a link about eczema and celiac http://celiacdisease.about.com/od/commoncomplicationsofcd/a/Can-Eating-Gluten-Free-Help-With-Your-Eczema-Treatment.htm

Just out of curiosity, you may try this cream. http://chronichives.com/useful-information/cromolyn-cream-recipe/

If it helps you, it would be informative...because it's a mast cell stabilizer. I tried it for mine and it helped a bit at a certain stage. If you get a great deal of relief, I'm sure that would be meaningful. The site has interesting info on antihistamines, etc. probably worth a read.

I'll tell you what my dermatologist told me..."this rash is an autoimmune reaction". Autoimmunity is the root of the problem. If you treat or fix the root problem, you may get a handle on the rash. For me it was gluten/dh. I do know if my Hashimotos is under/over treated my rash pops up, too. So, another ai condition could cause your rash to pop up - your body "freaking out", so to speak.

[Gfed]

On 12/21/2013 at 2:13 AM, BlahSoDepressing said:

I've actually been on and off of gluten for about three years. Way before the idea of celiacs came into mind. The only reason why I didn't start eating gluten was because my appointment was 4 days out. I thought that that wouldn't be enough time to consume enough gluten to get an accurate result. 

 

Went to the doctors yesterday. When I mentioned that it might be celiacs, he looked at the scabs and immediately ruled it out.

 

In his opinion he said that he was infected eczema. He said it in a way that he was pretty sure. But then again, the previous doctor also thought it was bug bites.

 

My brother says I should stop being so negative and that I have to believe that this will work. My  response to that was I believed that the first doctor knew what hew as doing, that I believed that the second doctor will cure me, and that I was even fooled again by the third doctor.

 

He was getting a bit frustrated because I was questioning his prescription. Why shouldn't I do. He prescribed me a higher dose of pred. If the second doctor already gave me pred and was only a temporary fix, what makes this doctor think that upping the dose will solve anything. I was asking what the back up plan was if this didn't work. He said just wait two weeks for the check up and that it'll most likely work. Thats what the previous doctor said and then I developed muscle pain from the augmentin.

 

I mean I guess there is a chance that it'll work. He prescribed me another antibiotic with the prednisone.

 

I know prednisone is a drug that is a temporary fix. When I explained I would like to not take steroids, he said that this was the best plan.

 

I really hate steroids. 

Hey mate I am going through exactly the same thing. Would love to hear more on how you are going? Any chance we can connect.

[ravenwoodglass]

1 hour ago, Gfed said:

Hey mate I am going through exactly the same thing. Would love to hear more on how you are going? Any chance we can connect.

Welcome to the board. The OP hasn't been on the board in almost 6 years. You may want to post a new topic with what is going on with you. There are amny knowledgable folks that would be happy to try and help.