MC remission but now skin rash?!

Zizzle · Post by **Zizzle** » Fri Feb 24, 2012 9:47 am

Sad to report that after 3 days of Benadryl cream and 2 days of Allegra, the rash hasn't changed AT ALL. Still itchy and red as ever. I'll try Benadryl pills before bed tonight, but I'm not too hopefull.

Post by **tex** » Fri Feb 24, 2012 10:20 am

Maybe you've become allergic to something in your clothing/detergent/water softener/fabric softener, etc.

Did this by any chance first start showing up after you moved into the "new" home, or after all the remodeling started?

Tex

Zizzle · Post by **Zizzle** » Fri Feb 24, 2012 10:57 am

This started in December. I changed shampoos, conditioners, lotions, nothing helped. If it were detergent, i'd expect rashes elsewhere. There was a jewerly clasp reaction early on (my nickel allergy) that may have triggered it, but I haven't worn necklaces in weeks, and I only wear nickel-free. I figured antihistamines would help if it's something allergic. Maybe I need to give them more time.

I'm still thinking it's early dermatomyositis.

I hope I'm wrong. Will have autoimmune workup results on Monday...but they will be non-specific (ANA, SED rate, etc). They are just tracking any changes to my usual levels, not looking for new, disease specific antibodies (yet).

jme22 · Post by **jme22** » Fri Feb 24, 2012 5:49 pm

This is such a tricky business when it comes to rashes. My allergist told me that there are literally hundreds of reasons a person might get a rash or even hives, and sometimes they are never really able to pinpoint the cause.

He recounted a story about one of his patients that continually was dealing with hives and they tested him for everything with no answers. They eventually figured out the hives were being caused by some odor being emitted in his car; a very elusive answer.

I wouldn't completely give up on the antihistamines just yet, particularly if you think there's a chance the rash could be part of your mast cell issues. Mast cell patients take TONS of antihistamines to keep their symptoms under control. I take 40 mg of Zyrtec daily now and add 50 to 75 mg of Benadryl every 3 to 4 hours when I start with hives and/or itching. I have Atarax that I can also throw into the blend if needed. I'm in no way suggesting you take even a fraction of that, I'm just using it as an example of what a mast cell patient may need in terms of antihistamines, before they see their symptoms subside.

Zizzle, I surely hope you get some answers soon. Keep us posted on the autoimmune panels. We have so many autoimmune issues in our family, I can appreciate the difficulty in identifying what exactly may be going on from the autoimmune standpoint.

Best,

Julie

Gabes-Apg · Post by **Gabes-Apg** » Fri Feb 24, 2012 9:00 pm

Zizzle
just catching up on this thread - wow, just when you think things are under control a new ?symptom ?issue appears. and not just in a mild state, that it is quite aggressive and does not respond to everyday treatments

as joe found in the histamine research, having things like anesthetic dental work was a common trigger for the chronic histamine issues. I wonder if there is certain something that causes the skin reaction?

very keen to hear the results/outcome....

take care

Gloria · Post by **Gloria** » Fri Feb 24, 2012 9:52 pm

Julie wrote:I take 40 mg of Zyrtec daily now and add 50 to 75 mg of Benadryl every 3 to 4 hours when I start with hives and/or itching.

I'm curious, how do you stay awake with that much Benadryl? A 25 mg tablet once a day knocks me out. Right now I'm working my way up to half of a 25 mg tablet of Sominex. (Sominex has the same active ingredient as Benadryl, but fewer inactive ingredients.)

Gloria

jme22 · Post by **jme22** » Tue Feb 28, 2012 3:24 pm

Hi Gloria,

I know that sounds like a great deal of antihistamines but honestly it's not that unusual for patients with systemic mast cell issues. How do I tolerate them? Well, first I have a general high tolerance to meds, so that helps a great deal. Second, I've been taking antihistamines since I was a child due to allergies, so my tolerance is probably already higher than the average person.

Even with all that though, it took time before I could take the higher doses of Benadryl. I used to take Benadryl capsules, but as my reactions started to worsen I had to go with liquid Benadryl for quicker absorption. The liquid Benadryl used to knock me out when I first started taking it. Like so many meds, however, I started to be able to tolerate it the more I used it. Now, I use the Benadryl in conjunction with Zyrtec. (Something my PCP told me NEVER to do years ago. If only he could see me now.)

I do notice that if I take Benadryl every 3 to 4 hours for an entire day, I'll feel it by the end of the day. I'm sluggish and ready to turn in early. But, some days it is the only thing that keeps me out of the ER, so it beats the alternative!

I think if you just keep taking the small dose, you'll likely start to adjust to the med and not feel so fatigued. I can't remember; have you tried the long acting H1 antihistamines? If you could tolerate one of those, perhaps you would feel less fatigued. Just a thought.

Best,

Julie

Zizzle · Post by **Zizzle** » Tue Feb 28, 2012 3:33 pm

Saw my doc yesterday and got bloodwork results. ANA is sky-high again (1:1280 speckled) and the rash has not responded to acupuncture.

CBC and chemistry tests were all perfect. CRP was negative. No SED rate yet. D3 level was 36 (D2 was zero which puzzled my doc - something about the ratio). B-12 and folate were excellent. Going to Florida in 2 weeks and can’t have ANY sun exposure on the rash or my face. My doc (who’s not a specialist in this stuff) wants me to start Paquenil, an anti-malarial with some not-so-great side-effects (but not as bad as steroids) i.e., retina damage, liver damage, spinning sensation, weight loss, etc. I’m seeing a rheumatologist next Monday to sort this all out. It’s the largest practice in the region with ties to the medical schools and teaching hospitals, and the young doc I’m seeing has an interest in Lupus, RA, and Myositis. I’m 80% sure this is Dermatomyositis, hopefully a form that’s limited to the skin, but I will have to be monitored closely for muscle damage (which can be sudden and severe). Just when I thought I had the colitis licked, now this. I’m so angry.

I'm trying not to freak out. After all, I had a similar rash 7 years ago and it went away on it's own after 10 months (and weaning). My doc joked I need to start breastfeeding again so I can wean.

But this time I have all the classic rash locations for Dermatomyositis, minus the heliotrope rash on the eyelids. The malar rash on my face is faint but looks bumpy and irregular, so I'll need to start wearing foundation soon (any good GF make-up recommendations?).

I had a few good panic attack/cries yesterday, but I'm calmer today. I'm just so disappointed that this seems out of my control. It doesn't seem to care about my diet or how well I take care of myself. My doc ordered a few tests that seem to try and get at a root cause, but I'm going to wait for the rheumy's opinion before I order them:
-Mycoplasma Pneumonia
-Chlamydia Mycoplasm
-HHV-6
-Ebstein Barr Virus Screening Panel
He also ordered 4 Interleukin tests, 1B, 2, 6, & 10, but I'm not sure what those are about.
I like his thinking - looking for an underlying infection, but I feel he's shooting in the dark. I'll wait for the rheumy to weigh in.

Zizzle · Post by **Zizzle** » Tue Feb 28, 2012 3:35 pm

Julie,
I've been taking one Benadryl tab before bed and I feel hung-over in the morning!! I'm very sensitive to meds. But the Benadyrl cream seems to help the itching. I rub LOTS of it in.

Zizzle · Post by **Zizzle** » Tue Feb 28, 2012 3:41 pm

Hmm, the descriptions of Interleukins on Wikipedia are very interesting, especially Interleukin 2, which can cause itching and is tied to lymphocyte function and tolerance to "self."

http://en.wikipedia.org/wiki/Interleukin_2

And check out Interleukin 10's role in IBDs and mast cell activity:

http://en.wikipedia.org/wiki/Interleukin_10

brandy · Post by **brandy** » Tue Feb 28, 2012 4:12 pm

Hi Zizzle,

I can't really comment on the rash but can report that it is now 73 degrees and cloudy in North Florida plus the stawberries are coming in season now so they are pretty good! Brandy

Post by **tex** » Tue Feb 28, 2012 4:43 pm

Zizzle wrote:(D2 was zero which puzzled my doc - something about the ratio)

I think that's due to a glitch in the test. My D2 result is always zero, even after a summer full of sun exposure.

I realize it's no consolation, but I'm pretty sure that you're not the first person to have a rash that stumps the guys in the white coats.

Have you ever been checked for systemic mastocytosis?

I notice that you have a DQ3 gene, so you might be interested in this discussion:

http://mastcelldisorders.lefora.com/201 ... and-masto/

Tex

jme22 · Post by **jme22** » Tue Feb 28, 2012 8:40 pm

Hi Zizzle,

Glad for the update. I was wondering what you found out from your tests. Sorry to hear about the elevated titer. No wonder you're feeling frustrated. I would too!

A few thoughts...

I started out over 20 years ago with a diagnosis of mixed connective tissue disease (MCTD) which is autoimmune. (My dad has lupus.) I had skin rashes, sun sensitivity, joint pain, carpal tunnel, raynaud's and sjogrens. My ANA came back a bit elevated a few times, but a positive anti-Ro was the marker that my rheumatologist used to diagnose MCTD. We went along for years with that diagnosis and then the mast cell issues kicked in about 4 years ago. Now, my rheumatologist (same one I've had for 15 or so years) thinks the symptoms I had all those years ago were mast cell generated. I was pretty astonished when he said this, but he believes mast cells have some type of causal relationship (not yet understood) with autoimmune issues. Interestingly, this fits with what the mast cell specialist said to me about mast cells and autoimmune issues. In an email exchange, he hypothesized:

"...many, many autoimmune issue(s) that can be seen in association with MCAS (mast cell activation syndrome), are borne of the immune system dysfunction induced by the aberrant mediator "soup" elaborated by your dysfunctional mast cells."

Well, that's a mouthful, but I understand his point. Mast cells kick out so much "junk", mediators to be accurate, they upset the normal delicate balance of our immune system. Of course, this has not been well studied or proven, but it is a known fact by mast cell patients that secondary autoimmune issues are not uncommon. I've already had my share, and am considered at risk of developing others.

All of this is to say Zizzle that I wouldn't completely discount the mast cell connection given your history. I think the rheumatologist will have a good deal of information to lend understanding as to what exactly is going on with you, but as Tex suggested, I would also consider some baseline mast cell tests. Although tryptase is the well known marker, I would suggest the 24H urine methylhistamine as well.

The obvious bottom line is for you to get healthy and I would hate for you to possibly miss out on potential mast cell involvement and therefore miss out on the appropriate treatment. It may be something or it may be nothing, but some simple testing could help answer the question.

One last thought...I'm far from an expert on lupus, but I was always under the impression that plaquenil was a pretty potent drug. Perhaps you might want to discuss taking it with the rheumie before you actually start on it. The other consideration is that if you have a mast cell issue a new medicine could act as a trigger and cause a reaction. Another reason I would probably want to run all of this by the rheumie before I started a new med. Again, just food for thought.

Sending you good wishes,

Julie

P. S. Be careful about trying anything new on your skin...make-up, soap, lotions, potions, etc. It could definitely cause your symptoms to worsen, no matter if it's an autoimmune issue or a mast cell issue. Been there, done that!

Post by **tex** » Tue Feb 28, 2012 9:39 pm

An overdose, for example, can be fatal.

Also,

http://arthritis.about.com/od/plaquenil/a/plaquenil.htm

Tex

Zizzle · Post by **Zizzle** » Wed Feb 29, 2012 10:22 am

Julie,
Thank you for all the information! I am convinced I need to look into mast cells, and I will not give up until my rheumy orders these tests. I know many people with my form of joint hypermobility suffer from mast cell issues, and they may play a role in my low BP/occasional POTS symptoms, not to mentoion my MC and skin rashes. I've just never noticed the flushing or extreme GI response to high-histamine foods (red wine is my only major trigger in this regard), and my only allergy is to nickel. As Tex points out, I seem to have one of the worst combos of HLA DQ genes out there. I'm predisposed to every immune irregularity in the book!!

I read that basophils are very similar to mast cells, and may play a role in skin rashes like mine. I wonder if people with negative mast cell tests may have basophil activiation?
http://www.ncbi.nlm.nih.gov/pubmed/21371044

Of course, my big question is, what can be done about it if it is mast cell related? Will Zyrtec/Zantac alter my immune response and lower the ANA level? Will it prevent autoimmune damage from occuring? What's the point of knowing if it is mast-cell related? Are the meds totally different? Does it change the diagnosis? DO you still officially have MCTD?

I have no intention of taking Paquenil until someone PROVES to me that my body is in serious trouble. I wouldn't medicate just for this pesky rash. Incidentally, Benadryl cream is finally helping with the itching. I put TONS on after I shower and I barely notice itching all day. THANK YOU!!