Skin biopsy

General
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1

Hi all,

I'm new here, and I feel a bit of a fraud because I haven't been diagnosed with DM yet. But I'm hoping I can get your thoughts on my rash and having a skin biopsy.

I have had health problems for about 8 years now, mainly characterised by periods of fatigue and weakness, muscle aches and pain, and 'bone' pain. I have been diagnosed with CFS/ME, reactive arthritis, and Lyme disease along the way, but despite a lot of treatment for Lyme Disease followed by an improvement, I still don't feel I am well, and think that we haven't got to the bottom of this.

Since the beginning, I have had a rash on my hands every spring and summer. This year, it's worse than ever before. I have been back to my GP (primary care doctor) and he agrees with me that the rash looks like a DM rash, but says DM doesn't come and go, and if I had it, I would just be getting worse and worse, rather than having periods where I feel well. Regardless, he is worried enough to schedule a skin biopsy for me, and has also referred me to a rheumatologist.

My concern with the skin biopsy is that the rash will not be that visible on the day it's scheduled. So I'm going a bit nuts thinking that I might not get the biopsy done, and then autumn will come and I'll have to go through another winter of pain and fatigue without any hope of a diagnosis.

It's difficult to compare my rash with those in photos because I can't see the texture of them, and also because many of the pictures are of typical or severe cases. So I hoped that if I describe it to you, you might be able to tell me if it sounds familiar.

My rash seems to come and go, and is definitely worse during the spring and summer, but doesn't necessarily seem to be worse when I've been in the heat or the sun. Sometimes it is practically invisible, even in hot and sunny weather. My other symptoms come and go as well, and are definitely connected to stress and tiredness, but also occur when I am neither stressed nor tired.

Sometimes the rash on my hands is very itchy, and at other times it is very tender and sore, especially the bits on the sides of my fingers rather than the bits on the knuckles.

When I press the slightly lumpy bits of rash, they blanch, and then the blood comes back first to the raised bits and then to the surrounding skin, making them appear much clearer for a second. I also get the rash on my elbows - very sore patches of red, which are slightly raised. After they die away, I get peely skin in their place.

Does any of this sound familiar? If you have had a skin biopsy, what was the bit they biopsied like? Red? Raised? Flat? On the knuckle?

Very grateful for any thoughts...

Hope you are all doing well on your own journeys to diagnosis or treatment or back to health.

Ia x

2

Hi La,

Your symptoms sound very familiar to me :-)

I highly recommend getting a biopsy done, as well as having blood drawn to check for the inflammatory markers, including the ANA, CK & Anti Jo. If you like - take a peek at my blog to see the labs that they run on me every time.

I got my first diagnosis from a skin biopsy, then had the myositis confirmed with bloodwork, an EMG, then a muscle biopsy. It's good to get a start. Seeing a rheumatologist is great too - nothing to be afraid of. They will be most familiar with other autoimmune conditions, which it seems that your regular Dr. already suspects.

Nothing to be afraid of - since having answers will help you get better!

Best, Maren

3

Hi la,

You shouldn't feel like a fraud! With how long it takes to diagnose autoimmune diseases, I'd want to ask questions wherever I could.

Your symptoms of fatigue, weakness, muscle aches and pain, and bone pain really hit home with me. I've had all of the above on and off since diagnosis (so you can't tell me that it doesn't go on and off!!!) There are periods where I have felt better. But maybe in the beginning without treatment you will just feel worse and worse, I don't know, I've yet to receive my medical degree ;-)

As far as my rashes went, they were always so unpredictable, and none were the same, so I couldn't even begin to tell you if they were the same. Most were on my arms, and mine started around my eyes.

I agree with everything Maren has already stated, especially the EMG and muscle biopsy. Those were the two major indicators that I had DM.

Take care and never feel like you can't be here and ask questions.

Talk soon!

Nichole

4

your not a fraud, your just like the rest of us who have been down the road you are traveling now, trying to get answers..it is hard to tell from your description because with skin, everyones is vastly different. your symptoms might not be exactly what someone elses is. but I think your dr has directed you down the right path .I do need to ask, has he done any labs on you, such as a cpk, or ana? while I don't have dm, I do have pm. I know for yrs my family dr thought I had autoimmune but could never prove anything until I got a positive ana, cpk, emg, and a skin biopsy. but it took 3 rheumys, first 2 saying "yea somethings going on but we don't know what" the 3rd finally stepped out on a branch and said yes I know. please don't get discouraged as can happen after years of struggling and no dr being able to fit all the puzzle pieces together. if ive learned one thing,it is that autoimmune disease effects NO 2 people the same. so we're not classic text book patients, we all have encountered things that didn't fit the descriptions written in the text books. just keep track of it all so you can be proactive in helping to fit the puzzle together. hang in there too prayers to you

5

My rashes are unpredictable too. I second Maren's advice-lab markers. I have MI-2 but had inconclusive MRI, muscle biopsy and EMG. I have dm.

6

Here's hoping that something is revealed so you can get good treatment!!

Ia said:

Hi all

I just wanted to post to say I had my skin biopsy today. Thankfully I had a few bumps, so the doctor did a 3mm punch biopsy of one on the side of my little finger, next to the knuckle. Fingers crossed it reveals something!

Ia

7

Not to discourage you, but I had a punch bx too which unfortunately showed nothing more than an inflammatory process, honey. It really probably took at least 20 years for it to all come together for me, family dr said everything I described was autoimmune but could never get anything to cooperate. Multiple rheumys etc. it was so infuriating over and over and over. I was beginning to think it was in my head,but I knew “I just didn’t feel right”. Fatigue muscle joint pain,rashes that came and went, super sensitive to just about everything environmental, worsening asthma and allergies. And the list goes on and on. Hang in there, it’s all real. Somewhere someone will see this all as a huge challege and they will help you. Just like me, and if they don’t gather up your records and come to cincinnati, I’ll introduce you to my dr,she’ll figure you out.

8

What’s the difference between a punch biopsy and regular biopsy? I got a regular muscle biopsy from my forearm and about a month later was diagnosed with dermatomyositis…

I hope you get answers.

9

I was barely able to walk and had the rash just around my eyes. I was in the hospital when I first saw the Rheumy (My family doc put me there to speed up my Rheumy appt. which is good because CPK ended up being around 11,000) He had the biopsy in mind directly after the EKG because he had a feeling it was DM. The biopsy wasn’t bad at all. The area stayed sensitive for a long time but that’s all.

As long as they are working on it, that’s good!!



Ia said:

It was a skin biopsy that I had done yesterday, of the rash on my hands. The punch is just the method of removing the sample - a 3mm apple corer type tool that cuts out a tiny cylinder of skin and the layers beneath it. I think my doctor wants to follow the evidence - I have a rash, so let's find out what that rash tells us, because doing a muscle biopsy is a bigger deal. Did they go straight to muscle biopsy for you? I haven't seen a rheumatologist (this time round) yet.

10

Ia, it was until I had a third biopsy that it finally came back with the DM dx. The first two said "dermatitis". So, even if this comes back inconclusive, keep pushing! All my blood tests were negative, but my hands were a mess (mechanics scaliness) and redness on knuckles with Gottrun's papules. My Derm could see it looked just like DM, we just couldn't prove it.

11

Ugh - I am so glad that you're heading in to see a Rheumatologist soon, la!! Sounds like your doctor is at their limit.

12

Yes, they went straight for the muscle biopsy for me.

Nichole Smith said:

I was barely able to walk and had the rash just around my eyes. I was in the hospital when I first saw the Rheumy (My family doc put me there to speed up my Rheumy appt. which is good because CPK ended up being around 11,000) He had the biopsy in mind directly after the EKG because he had a feeling it was DM. The biopsy wasn't bad at all. The area stayed sensitive for a long time but that's all.

As long as they are working on it, that's good!!



Ia said:

It was a skin biopsy that I had done yesterday, of the rash on my hands. The punch is just the method of removing the sample - a 3mm apple corer type tool that cuts out a tiny cylinder of skin and the layers beneath it. I think my doctor wants to follow the evidence - I have a rash, so let's find out what that rash tells us, because doing a muscle biopsy is a bigger deal. Did they go straight to muscle biopsy for you? I haven't seen a rheumatologist (this time round) yet.

13

Perhaps they could run a blood test to look for myositis specific auto anti bodies? JO-1, MI-2, etc. Ask for that

14



Ia said:

Would you mind posting a picture of the Gottron's papules you have/had, Red Knuckles?

Red Knuckles said:

Ia, it was until I had a third biopsy that it finally came back with the DM dx. The first two said "dermatitis". So, even if this comes back inconclusive, keep pushing! All my blood tests were negative, but my hands were a mess (mechanics scaliness) and redness on knuckles with Gottrun's papules. My Derm could see it looked just like DM, we just couldn't prove it.

20-Knuckles.jpg (1.69 MB) 21-Hand2.jpg (1.38 MB) 22-Fingers.jpg (1.56 MB)
15

I wish we could just slap anyone that says a symptom is in our heads. UGH.

Keep pressing on!

Cindy

16

I agree with Cindy about slapping anyone who makes that statement! That's unbelievable! Don't give up….

Ia said:

I just had my appt with the Derm. It was a bit strange - she thinks my rash is chilblains. When I said that it mostly happens in summer, she said that it was probably coming on when I got things out of the fridge! I've looked at pictures and read descriptions of chilblains and I don't agree with her at all.

At the moment, I also have a scabbed over rash on my forearms that looks like classic eczema and came up after I did some weeding in the garden. I've never had anything like it before. She's decided to send me for patch testing, and she's also said that my histology report needs some thought as to why there's plasma cell and lymphocyte infiltration.

A bit frustrating all in all. She said she thinks my muscle pain and fatigue are in my head because I'm worried about the rash. I know that's not the case.

Anyway - Rheumy in 3 weeks, and at least the case isn't closed yet!

17

unfortunately drs who don't deal with autoimmune on a daily basis, just don't get it. even my rheumy who has no other pm pts tho, didn't hesitate a moment in telling me exactly what she was sure I had. but with that said, it took 3 rheumys to finally get to one who was willing to stick her neck out and say what it was. I think their afraid to make the wrong move and its more and more the newer drs who don't want to be sued, or who are scared to death to be sued because maybe they weren't correct at the time. my years of working along side of drs (all kinds I might add) that is how they felt. very few were willing to step out of the box, go out on a limb and say something. I learned from a totally awesome family med dr that I had the great pleasure of working with, that if drs would only sit and listen to what their patients are saying, patients almost always self diagnosis within the first 90 seconds of talking. how many times have you been interrupted by your dr when your trying to describe something? if so, maybe you need to find another dr,one who is familiar with autoimmune diseases. that includes a family dr,or any drs you need to see. I was very fortunate with my drs including family dr, lung dr, endocrinologist who all seem to understand the concept of autoimmune and what it can do. good luck, keep us posted on how things progress. and if you need good drs, Cincinnati rheumatologist inc have great drs, and mine in particular.

18

Good points Wendy…I found help with a primary care doctor that I didn't expect to find help with. He had NO idea what Myositis was, did not know I had it, but once he admitted me so the Rheumy would come see me in the hospital (he wouldn't any other way), he (the primary) delved deep into the subject. He even printed out a big stack of paperwork on DM and invited me in his office where he presented it to me while talking to me about what he had learned. I thought that was great. I'm pretty bummed that this guy is just M.I.A. now. I found that odd :-(

wendy krauss said:

unfortunately drs who don't deal with autoimmune on a daily basis, just don't get it. even my rheumy who has no other pm pts tho, didn't hesitate a moment in telling me exactly what she was sure I had. but with that said, it took 3 rheumys to finally get to one who was willing to stick her neck out and say what it was. I think their afraid to make the wrong move and its more and more the newer drs who don't want to be sued, or who are scared to death to be sued because maybe they weren't correct at the time. my years of working along side of drs (all kinds I might add) that is how they felt. very few were willing to step out of the box, go out on a limb and say something. I learned from a totally awesome family med dr that I had the great pleasure of working with, that if drs would only sit and listen to what their patients are saying, patients almost always self diagnosis within the first 90 seconds of talking. how many times have you been interrupted by your dr when your trying to describe something? if so, maybe you need to find another dr,one who is familiar with autoimmune diseases. that includes a family dr,or any drs you need to see. I was very fortunate with my drs including family dr, lung dr, endocrinologist who all seem to understand the concept of autoimmune and what it can do. good luck, keep us posted on how things progress. and if you need good drs, Cincinnati rheumatologist inc have great drs, and mine in particular.

19

Sorry you haven't gotten any answers and seem just as frustrated as you were when you first posted. I do have a suggestion. Have you considered changing your diet? A lot of issues pop up because of our diet. I discovered that many symptoms I was having went away when I stopped eating Gluten, Sugar and Dairy. I'm not sure which was the problem, but it worked. I still have DM, and am currently on medication to treat it (which works great...Prednisone is awesome..just don't want it in my body if I can help it), so I'm starting to taper and my goal is to try to combat the disease with nutrition, if possible. I'm Amyopathic, so its not as serious as many on these panels. My point is, since you can't get a diagnosis, try all YOU can to make a difference. The book that helped me understand this is It Starts With Food by Melissa and Dallas Hartwig. There are two supplemental cookbooks called Well Fed and Well Fed 2 that were a great help with this endeavor. At first it's a daunting task, but once you get the hang of it, it's really not that bad. I eat a Paleo diet right now and I actually like it. The verdict is out whether my DM will stay under control, but I believe its worth a try. If anything, its not hurting me. I've lost 10 pounds initially and haven't gained anything while on Prednisone. I'm never hungry because what we are allowed to eat is ALOT of good food. Its a big decision, but do some reading on nutrition. Here's an interesting blog to read also: http://robbwolf.com/2012/03/19/dermatomyositis/

I feel your pain. It took two years for me to get some answers. Be persistent... read up on every possible thing you can get your hands on... and then make some changes in your own lifestyle and see what happens.

Good luck!

20

LA I feel your frustrations. I too was one of those with symptoms, but nothing as far as blood work. it took probably 20+ years to get anything to show. my family dr always felt there was something, but wasn't able pin point what exactly it was. then I had a series of medical issues that blew up in 2009, with asthma getting worse and not responding to treatment, etc. that was when my blood work all changed. im not sure how old you are, but I feel in my case, at the time I was 54 and was in full blown menopause, that everything changed. I wonder somehow if hormones play into AI diseases in a way that the medical community hasn't yet connected together. as women we are more likely to get AI diseases than men, which in turn leads me to believe again of the hormone connection that men don't have. at any rate, while time is of the essence in treatment, I went 20 years before I received any. don't get discouraged if your blood tests aren't conclusive. Drs now are afraid to treat on symptoms alone, because we have become a society of "sue happy" people. Im sure if it is in fact AI diseases something will more than likely rear its ugly head as it has for so many or us that will show the drs its not in our heads. hang in there, were here for you, either way.