The big reveal! Photos of my lame-o itchy rash

Gloria · Post by **Gloria** » Wed Dec 05, 2012 11:31 pm

Zizzle,

Yesterday while looking at pictures of skin rashes, I came across a picture that looked like some fairly large spots DH has had for several months - maybe a year. Neither one of us had figured out what they were. The pictures were of psoriasis. His spots have all of the characteristics. He's going to make an appointment with the same dermatologist I saw, so I may have an opportunity to mention my continuing rash to him. He'll probably ask me if I've been slathering on the cortisone cream 3 times a day. No, just two.

Psoriasis is another autoimmune disease. I feel for my daughters and grandchildren - what genes have we passed on to them?

The good news is DH is considering getting tested through Enterolab. I told him it could be his Christmas present - a package of poop to send away.

Gloria

Joefnh · Post by **Joefnh** » Wed Dec 05, 2012 11:50 pm

Gloria I was just looking at the conversion numbers again and according to the Astra-Zenica pharmacokinetics data, it looks like early in the dosing cycle with 9mg of Entocort the prednisone equivalent is about 20mg, after taking the med for a while that number does climb higher and stabilizes to equal about 30mg of prednisone.

Refer to sections 12.2 to 12.3 of this PDF:

http://www1.astrazeneca-us.com/pi/entocortec.pdf

Zizzle, I do hope you feel better soon. I can't even imagine dealing with a rash like that. As far as the Plaquenil, it does have a very long and good track record as an older DMARD (Disease-Modifying Anti-Rheumatic Drug). This med has been used clinically to treat various IBD's and other autoimmune conditions. It's effectiveness for IBDs such as ulcerative colitis and Crohns is similar to a 5-ASA medicine like Mesalamine. The mechanism of action that might apply to a IBD includes inhibition of T-cells and intracellular stabilization of intracellular inflammation and the immune cascade. (See references below)

Overall Zizzle there is a good chance that it may very well help your MC as well.

I hope you can get some relief soon

-Joe

1. Louis E, Belaiche J. Hydroxychloroquine (Plaquenil) for recurrence prevention of Crohn's disease after curative surgery. Gastroenterol Clin Biol 1995;19:233-4.
2. Goldman FD, Gilman AL, Hollenback C, Kato RM, Premack BA, Rawlings DJ. Hydroxychloroquine inhibits calcium signals in T cells: a new mechanism to explain its immunomodulatory properties. Blood 2000;95:3460-6.
3. Fox RI. Mechanism of action of hydroxychloroquine as an antirheumatic drug. Semin Arthritis Rheum 1993;23:82-91.
4. Goenka MK, Kochhar R, Tandia B, Mehta SK. Chloroquine for mild to moderately active ulcerative colitis: comparison with sulfasalazine. Am J Gastroenterol 1996;91:917-21.

Fish2575 · Post by **Fish2575** » Thu Dec 06, 2012 12:05 am

Hmm Joe, now you have me thinking! I read that Plaquenil can be used in severe cases of food allergies, and I have thought about taking mine again to see if it makes any difference. Didn't know it was also used for colitis. My Rheum wasn't happy when I stopped, and I think my D got worse right afterward. Susie

Zizzle · Post by **Zizzle** » Thu Dec 06, 2012 9:40 am

Gloria,
Sorry about DH's rash. Maybe you can share treatment options? I'm concerned that you are having to apply steroid creams more than once a day for this long without answers. As you know, they are only suppressing symptoms - they will never rid you of the rash. You need to dig deeper.

I regret not getting help sooner. My rash was so out of control by the time I started prednisone, I question whether my skin will ever heal. It feels like a horrible, itchy sunburn from scalp to knees - my entire back side - even on 40 mgs of Prednisone.

Joe, Thanks for the references. I'm glad to hear Plaquenil may help with the MC, which is the least of my worries right now! I wish there were more recent referrences, but I guess it's an old drug, so no one wants to spend money promoting its use. Incidentally, I read that Imuran is absolutely not helpful for the skin rash in DM. I wonder why? Sadly, the drug of choice after PLaquenil is Methotrexate, followed by CellCept. IVIG is used as a last resost after those are all mixed together. Not a prescription for long-term survival if you ask me.

Susie,
We sure are similar. What were your HLA DQ genes??

Fish2575 · Post by **Fish2575** » Thu Dec 06, 2012 10:19 am

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0604

Joefnh · Post by **Joefnh** » Thu Dec 06, 2012 10:37 am

Zizzle actually Dermatomyositis is one of the most common uses for Imuran next to Lupus. This being an older med (developed in the late 50’s) it has found a lot of other uses as well, including pretty much all IBDs including MC.

I did see a few smaller studies (< 75 participants) where as expected some did better on Imuran while others did better when switching to methotrexate. If you do end up on either of these meds it's important to supplement your diet with Folic acid as these treatments tend to deplete the normal levels. My rheumotologist has me taking 1mg a day.

The literature discuses both Imuran (Azathioprine) and Methotrexate as the first line of treatments after prednisone, and often combined with prednisone for the more stubborn cases. This is a common technique to bring a state of remmision when prednisone alone does not work. For my Crohns I was on both for 2 months.

http://www.rheumatology.org/practice/cl ... oprine.pdf

Azathioprine (Imuran) is a drug used to treat swelling and pain in arthritis. The most common diseases treated with Imuran are dermatomyositis and SLE. It belongs to a class of medications called disease-modifying antirheumatic drugs (DMARDs) or immunosuppressants. This class of medicines can decrease joint damage and disability.

http://www.mayoclinic.com/health/dermat ... -and-drugs

When used in combination with a corticosteroid, a corticosteroid-sparing medication can decrease the dose and potential side effects of the corticosteroid. These medications include azathioprine (Azasan, Imuran) or methotrexate (Trexall, Methotrexate, Rheumatrex). Your doctor may prescribe azathioprine or methotrexate initially along with prednisone if your disease is very progressive or if you have complicating factors. Some doctors prescribe these medications as a first line treatment for people in whom corticosteroids aren't recommended.

Zizzle · Post by **Zizzle** » Thu Dec 06, 2012 12:56 pm

Susie,
No relation...

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

Joe,
I understand Imuran can work for the muscle portion of DM (which I don't think I have, I hope...), but apparently it is worthless at controlling the skin inflammation. I read about it on Medscape in the overview article about drugs to treat DM. The skin is much harder to control than the muscle inflammation.

Many people turn to expensive IVIG for relief after all the other meds fail. Sigh.

Zizzle · Post by **Zizzle** » Mon Dec 10, 2012 1:11 am

After a couple of weeks of feeling really sorry for myself and crying at the drop of a hat, I pulled up my bootstraps, and started the search again.

I searched for "nickel and autoimmune" and "nickel and lupus" on PubMed, and found a treasure trove of articles pointing to the immune system activation caused by metals, particularly among those people who report nickel allergy. Researchers induced lupus in mice simply by feeding them nickel!! I plan to request heavy metal testing and LTT-MELISA metal sensitivity blood testing from my DO or any doc willing to order it!

I recognize that my metal exposures can be numerous, not just fillings. I did have one huge amalgam filling removed due to worsening decay immediately after my first pregnancy (when this all started).

I have two amalgams left, and one covers a sizeable amount of one molar. My "safe" platinum wedding rings have left a permanent scar under them.

http://www.ncbi.nlm.nih.gov/pubmed/15349088

Abstract
BACKGROUND:
Patients with certain autoimmune and allergic diseases, such as systemic lupus, multiple sclerosis, autoimmune thyroiditis or atopic eczema, often show increased lymphocyte stimulation by low doses of inorganic mercury in vitro. The patients often report clinical metal hypersensitivity, especially to nickel.
OBJECTIVE AND METHODS:
In this study we examined the health impact of amalgam replacement in mercury-allergic patients with autoimmunity. The suitability of MELISA, an optimized lymphocyte stimulation test, for the selection of susceptible patients and monitoring of sensitization was also examined. Amalgam fillings were replaced with composites and ceramic materials. Follow-up health status and lymphocyte reactivity were assessed and evaluated half a year or later following amalgam removal.
RESULTS:
Results of lymphocyte reactivity measured with MELISA indicate that in vitro reactivity after the replacement of dental amalgam decreased significantly to inorganic mercury, silver, organic mercury and lead. Out of 35 patients, 25 patients (71%) showed improvement of health. The remaining patients exhibited either unchanged health (6 patients, 17%) or worsening of symptoms (4 patients, 11%). The highest rate of improvement was observed in patients with multiple sclerosis, the lowest rate was noted in patients with eczema. The initial mercury-specific lymphocyte reactivity was significantly higher in the responder group, than in the non-responders, whose health was not improved by amalgam removal. All patients with health improvement after amalgam replacement showed reduced proliferation to inorganic mercury in follow-up MELISA. In vitro responses to phenylmercury and nickel did not differ between the groups.
CONCLUSIONS:
Mercury-containing amalgam may be an important risk factor for patients with autoimmune diseases. MELISA is a valuable tool for selection of patients for amalgam replacement and also for monitoring of metal allergies.

http://www.ncbi.nlm.nih.gov/pubmed/11460087

http://www.ncbi.nlm.nih.gov/pubmed/20588228

Metals such as nickel or mercury induce delayed type T cell hypersensitivity (allergy) which is relatively common, especially in women. T-cell allergy can be studied with the lymphocyte transformation test, LTT-MELISA. It has been found that patients with AT and other autoimmune diseases, such as multiple sclerosis, psoriasis, systemic lupus erythematosus and atopic eczema, show increased lymphocyte reactivity in vitro to inorganic mercury, nickel and other metals compared to healthy controls. The important source of mercury is dental amalgam. Replacement of amalgam in mercury-allergic subjects resulted in improvement of health in about 70% of patients. Several laboratory parameters such as mercury-specific lymphocyte responses in vitro and anti-thyroid autoantibodies were normalized as well. In contrast, no changes in health and laboratory results were observed in mercury-allergic patients who did not have their amalgams replaced. The same was true for non-allergic patients who underwent amalgam replacement.

Post by **tex** » Mon Dec 10, 2012 11:10 am

and anti-thyroid autoantibodies were normalized as well

Now that's very interesting, to say the least.

Tex

Zizzle · Post by **Zizzle** » Mon Dec 10, 2012 11:31 am

Yup, here's a more detailed abstract on the thyroid connection. I've mentioned before that my MIL has Hashimoto's and a mouth FULL of mercury fillings. I've always thought her health issues were related to those fillings. I didn't suspect mine because I had so few, but now I relaize with an allergy involved, it doesn't take much.

I want to get the MELISA test, but I suspect the results won't be valid while on prednisone, maybe not even while on Plaquenil? Either way, the fillings are coming out ASAP!!

http://www.ncbi.nlm.nih.gov/pubmed/16804512

Neuro Endocrinol Lett. 2006 Dec;27 Suppl 1:25-30.
Removal of dental amalgam decreases anti-TPO and anti-Tg autoantibodies in patients with autoimmune thyroiditis.

Abstract
OBJECTIVES:
The impact of dental amalgam removal on the levels of anti-thyroid peroxidase (anti-TPO) and anti-thyroglobulin (anti-Tg) antibodies was studied in patients with autoimmune thyroiditis (AT) with and without mercury allergy.
METHODS:
Thirty-nine patients with AT were tested by an optimized lymphocyte proliferation test MELISA for allergy (hypersensitivity) to inorganic mercury. Patients were divided into two groups: Group I (n = 12) with no hypersensitivity to mercury and Group II (n = 27) with hypersensitivity to mercury. Amalgam fillings were removed from the oral cavities of 15 patients with hypersensitivity to mercury (Group IIA) and left in place in the remaining 12 patients (Group IIB). The laboratory markers of AT, anti-TPO and anti-Tg autoantibodies, were determined in all groups at the beginning of the study and six months later.
RESULTS:
Compared to levels at the beginning of the study, only patients with mercury hypersensitivity who underwent amalgam replacement (Group IIA) showed a significant decrease in the levels of both anti-Tg (p=0.001) and anti-TPO (p=0.0007) autoantibodies. The levels of autoantibodies in patients with or without mercury hypersensitivity (Group I and Group IIB) who did not replace amalgam did not change.
CONCLUSION:
Removal of mercury-containing dental amalgam in patients with mercury hypersensitivity may contribute to successful treatment of autoimmune thyroiditis.

Gloria · Post by **Gloria** » Mon Dec 10, 2012 11:22 pm

Well this is very interesting. I don't think I have thyroiditis or a nickel allergy, but I certainly do have a mouthful of fillings, due to living the first 23 years of my life in an area without chlorinated water. My fillings are beginning to deteriorate and break apart. I've had three do so in the past six months or so. I had to have a porcelan crown on one tooth just a few weeks ago.

Now that DH is retired and we're on Medicare, we don't have dental insurance, and I paid $1200 out of pocket for the crown. My dentist said I should get a crown on another tooth that broke. It could get pretty expensive to replace the numerous fillings I have. I guess it would be smart to be "tested by an optimized lymphocyte proliferation test MELISA for allergy (hypersensitivity) to inorganic mercury."

If it would resolve my MC, it would be worth it. Oh, to eat normally again! By normally, I mean to be able to eat the way I did after I went GF, EF, DF and SF. That would even be wonderful! The Christmas season is always hard because DH makes many goodies to give away. The aroma of melting chocolate, cookies and quick breads baking is almost torture. Sorry - I'm venting.

Zizzle, I hope that you have found the key to resolving your numerous autoimmune conditions. You're so young to have to deal with them and be raising a family, too.

Gloria

Zizzle · Post by **Zizzle** » Mon Dec 10, 2012 11:29 pm

Gloria,
Here's a thoughtful website written by a "holistic" dentist in my area. Apparently 2 amalgam fillings is enough to cause toxicity. Metal crowns are made largely with nickel - no wonder it's a growing allergy! My nickel allergy developed in my teens, probably the result of 2 years of braces. I also used to suffer from lots of mouth ulcers in my teens and 20s too. I recall you have them too -- I would suspect the dental work!

http://www.mgoldmandds.com/cancer.htm

I just sent him an email with my story and theory...will see how he reacts. I wonder if being on prednisone helps or hurts the prospect of getting my amalgams out and possibly doing a mercury detox regimen simultaneously? Here's what he recommends before and after the dental work. Of course I will run this by my DO and rheumy too.

http://www.mgoldmandds.com/detox1.htm

Zizzle · Post by **Zizzle** » Tue Dec 11, 2012 1:06 pm

I saw my rheumatologist, and I have mostly good news, but none of the earth-shattering variety. First, if the rash continues to improve, I will start tapering the prednisone in 2 weeks. I'm at 40 now, and will drop in 5 mg increments every 2 weeks until I'm at 20 mgs, then drop by 2.5 mgs/week after that. I calculate it will mean I'll be on prednisone for a total of...20 weeks!?! That's much longer than I expected. Ugh. I start Plaquenil now too. Will take it once a day for the first week, then twice a day. I can wean off once my rash is GONE for at least 3 months, preferrably longer in his mind.

My pre-medication bloodwork was good overall:
Muscle enzymes and liver function/metabolic panel all normal.
CRP (<0.2) and SED rate (4) extremely low (surprising!)
Vitamin D level: 41.5!!

Lupus autoantibodies, anti-Cardiolipin panel, etc: still negative
ANA: still 1:640 and speckled

A few first-time abnormals on the CBC:

White Blood Cells: 3.4 (low for the first time ever) range is 4.2-10.00
Lymphocytes% 18.9 (low, first time ever) range is 20.5-51.1
Lymphocyte# 0.64 (low, first time ever) range is 1.2-3.4

What do these low levels suggest? They are consistent with what I'm reading about the effects of mercury and amalgam fillings. Could they mean I was simply fighting an infection at the time? Or would they be high in that case? Do WBCs go down during autoimmune flares? My parents both have low WBCs -- we suspect from toxic exposures living on a farm (herbicides, pesticides, burning garbage, burning sugar cane farms nearby).

I see the eye doctor for baseline eye exam next Thursday, and the radiology center for CTs and mammogram on New Years Eve.

In the meantime, there are no contraindications to getting my 2 fillings removed while on prednisone. I'm going for it. Of course the rheumy had no ideas or opinions about it, but he thought my logic and abstracts I brought were interesting, so he basically left it up to me.

Once again, I'm on my own, but I am making sure the rheumy sends reports to my integrative medicine doc, and I'm bringing my lab reports to my acupuncturist.

NOTE TO ALL MCers --- ALWAYS ask for a printed copy of your lab results before you leave your appointments so you can share with alternative doctors as needed and maintain a comprehensive file at home. They usually don't charge extra if you ask for them casually during your visit. If you want to get records later, it's always more complicated.

Gloria · Post by **Gloria** » Thu Dec 13, 2012 7:32 pm

Zizzle,

I haven't any insight about your low white blood and lymphocyte levels. I hope you can get some answers on them.

I read the links from the alternative dentist. There's a lot of information to digest, particularly with the pre-replacement procedures. I'm pretty sure I wouldn't be able to follow his recommendations. I hope that replacing your two fillings gives you needed relief. I'll be anxious to know if it helped you. I have a feeling that my dentist is mainstream and would discount the holistic dentist's recommendations. On the other hand, he would stand to make a lot of money replacing my fillings!

I have so many large fillings that replacing them would require crowns. DH has had molars pulled rather than pay for the tooth to be repaired. I'm not doing that yet, but it sure does get expensive.

Is your rash getting better? My rash seems to finally be gone. It took 3 months for it to disappear. I've just stopped putting the cortisone cream on it and worry that it will return. I'm still taking Claritin every morning and have been taking Zyrtec every evening. I recall you writing something about Zyrtec being hard to discontinue. I might try cutting the pill in half now that the rash is gone. Keeping my

.

Gloria

Zizzle · Post by **Zizzle** » Thu Dec 13, 2012 10:57 pm

Gloria,
I'm so glad your rash is gone. Hooray!! I hope you can wean off the zyrtec with no trouble.

My rash is no better. In fact, I now have red, raw dots on some of the roughest portions of my lower back. They hurt but don't ooze, and I'm wondering if they could mean infection? Ugh. Otherwise the pain of moving, sitting & laying down is worse than the itch. Moisturizers and oils barely help. Will try to see derm on Monday. The rheumy suggested I might try Protopic cream next, but it has some risks too.

I have to stop reading. I'm making myself sick. Ugh. I talked to a doctor friend today. He said I should do all the CTs my dr ordered considering the cancer stats. Now I can barely wait.

http://www.hudlaeknastodin.is/resources ... lancet.pdf

I did some reading on lymphoma tonight. There are so many types!! I'm wondering if there is any chance this is a Cutaneous T Cell Lymphoma. It can itch, look flat, or patchy like psoriasis.
Incidentally, the slightly enlarged lymph node on the back of my neck for the last year went away as soon as I started prednisone. Wonder why?