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

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wonderwoman
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Post by wonderwoman »

My rash seems to finally be gone. It took 3 months for it to disappear.
Gloria, that is great news. I have been following you and Zizzle.

Zizzle, I don't know how you deal with your all your medical concerns, plus working, and having a family to care for. I hope you fine answers soon.
Charlotte

The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
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Gloria
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Post by Gloria »

Zizzle wrote:I now have red, raw dots on some of the roughest portions of my lower back. They hurt but don't ooze.
Zizzle, when my rash turned into dots, they started to dry up. I felt like it was healing when they did that. I hope it means that your rash is beginning to heal. I didn't apply cortisone cream yesterday and there were a couple of small rashes on my backside this morning. It looks like I'm going to have to keep applying the cream for a while. But the intense itching is gone, and I'm glad for that.

Charlotte,
Thank you for your concern. My hope also is that Zizzle's rash gets better soon.

Gloria
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Post by Zizzle »

My Chinese medicine doc confirmed the dots were all scabs from scratching, probably at night. Luckily none of them are infected, just scabbed and painful when I move. The rest of the rash is getting lighter - now lavender/pink instead of purple/red. There is clearing in the center of my back and parts of my buttocks too. It's so weird not to obsess about my skin 24/7 now!!

I'll pick up the Plaquenil tomorrow and have been reading up on it. It seems I have been prescribed a high dose for my height and weight...which could ultimately lead to worse eye complications over time, so I need to figure it out for sure before I question my doctor. If I'm right, and he just gave me a "standard dose," he's fired. I'll ask the opthamologist about precise dosing. I think I've been prescribed 500 mg twice a day. The calculator I used suggested a max of 350 mg/day to preserve my eyes. Ugh. But the eye damage usually accrues over long-term use, years.

I also wanted to understand HOW Plaquenil works in autoimmune disease. I read a interview with a rheumatologist who said it raises HDL, lowers LDL and raises PH. So I thought...isn't the problem with our carb-loaded western diets that we end up too acid? We need to be more alkaline? I wondered whether Plaquenil is simply speeding up a pH conversion that could otherwise be accomplished through diet alone?

I've also been trying to understand what all the various anti-inflammatory diets have in common. I mean, how can people with the same disease be cured by different diets, one vegan, one paleo, one Dr. Fuhrman which allows legumes, etc. Why do all these various diets work for people, despite having radically different approaches to meat/legumes/nuts etc. Could curing our body acidity by alkalinizing the body be the simple common denominator??? (aside from eliminating gluten and dairy, of course)

So I looked further into Plaquenil and discovered (through Wikipedia of all places :wink:), that someone has discovered how it works in autoimmune disease.

http://en.wikipedia.org/wiki/Plaquenil
Antimalarials are lipophilic weak bases and easily go through plasma membranes. The free base form accumulates in lysosomes (acidic cytoplasmic vesicles) and is then protonated,[8] resulting in concentrations within lysosomes up to 1000 times higher than in culture media. This increases the pH of the lysosome from 4 to 6.[9] Alteration in pH causes inhibition of lysosomal acidic proteases causing a diminished proteolysis effect.[10] Higher pH within lysosomes causes decreased intracellular processing, glycosylation, and secretion of proteins with many immunologic and nonimmunologic consequences.[11]These effects are believed to be the cause of a decreased immune cell functioning such as chemotaxis, phagocytosis and superoxide production by neutrophils.[12] Recently a novel mechanism has been described wherein hydroxychloroquine inhibits stimulation of the toll-like receptor (TLR) 9 family receptors. TLRs are cellular receptors for microbial products that induce inflammatory responses through activation of the innate immune system
Are toll-like receptor issues my smoking gun, perhaps?? They certainly play a role in skin AND gut mucosa. They seem to be reacting to microbes and antigens (not truly to self). And lo-and-behold, they are tied to nickel allergy!!!!!!!!!!! Coincidence?

Of course this article might as well be written in German for me. I'm lost on the biochemical descriptions. I need a translator. But from what I can piece together, I think I'm on to something, and I think it may have implications for everyone with MC too.

http://en.wikipedia.org/wiki/Toll-like_receptor
Schmidt et al. demonstrated that TLR4 is involved in the development of contact allergy to nickel in humans.[31] By binding to two non-conserved histidines, H456 and H458, Ni2+ cross-links the two receptor monomers, TLR4, and MD2, triggering formation of a dimer that structurally resembles the one induced by Lipopolysaccharide. That, in turn, activates the proinflammatory intracellular signal transduction cascades.
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Post by Zizzle »

In other news, I've been nursing my ailing cat Maurice for the last 3 days. He's 16 with chronic kidney disease and hyperthyroid, and he developed an upper respiratory infection last week. By Friday, he wasn't eating, his eyes were full of goop, and he stopped walking. He couldn't hold up his weight, he was walking on on the tops of his paws and falling over. A vet visit and $400 later, we now know he is anemic, potassium levels were low, phosphorus is high, and he is in stage 2 out of 4 for kidney disease (so not quite end stage yet). I've been giving him daily subcutaneous IV fluids, antibiotic drops, and carrying him to the litter box every 4 hours. He hasn't eaten in 4 days despite taking an appetite stimulant. We finally force-fed liquid chicken fat last night with a syringe. We thought the end was upon us. The kids were drawing cards, saying their goodbyes, we cried and cried all weekend (also grieving the tragedy in Newtown near my hometown in CT).

Then...this morning, he got up and started walking!!! His eyes were brighter, his pupils less open and fixed, he's almost his old ailing self again!! He tried to eat (and threw up, but at east he tried!). So he went back to the vet. They suspect a small stroke may have caused his walking issues. I wonder if his virus/infection was like a major flu that just wiped him out. We were about to have him euthanized!!

Anyway, we know the end is probably right around the corner, and we know the signs to look for. But I hate playing God. I don't want to end his life until I know he is truly ready. He doesn't appear to be in pain, he still wants to be with us and purrs when we pet him and carry him.

It's so depressing. How do we honor him and love him for what little time he has left? I have to go to work tomorrow and my husband traveled for work for 2 days. My son is a mess, crying himself to sleep. :cry: :cry: And how do we prepare our other cat for the loss of her life-long companion? Does she know what's happening? I hate this!!
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Post by tex »

Zizzle wrote:They seem to be reacting to microbes and antigens (not truly to self). And lo-and-behold, they are tied to nickel allergy!!!!!!!!!!! Coincidence?
As you probably recall, my position is that there is no such thing as autoimmune disease — all so-called autoimmune responses are caused by exogenous antigens, and the responses can be stopped by avoiding the exogenous antigens. By definition, that eliminates such responses from being classified as autoimmune responses.

I'm sorry to hear of Maurice's problems, but I'm glad that you gave him the opportunity to recover. I'm like you, I've never been in favor of prematurely ending a pet's life, just because the situation appears grim. Sometimes miracles do happen.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Zizzle »

Tex,
I just picked up the generic Plaquenil, made by a Florida pharmaceutical in Mumbai, India!! It's the only version carried by CVS. The pharmacist could not tell if it contained glutens, so she told me to call the company. I will, when I can find a phone # -- they don't include it on the insert!! :roll: But in the meantime, here is the list of inactive ingredients. Any reason for concern?

coloidal silicon dioxide
dibasic calcium phosphate
hypromellose
macrogol/PEG 3350 :shock:
PEG is the basis of a number of laxatives (e.g., macrogol-containing products, such as Movicol and polyethylene glycol 3350, or SoftLax, MiraLAX, or GlycoLax). Whole bowel irrigation with polyethylene glycol and added electrolytes is used for bowel preparation before surgery or colonoscopy. The preparation is sold under the brand names GoLYTELY, GaviLyte C, NuLytely, GlycoLax, Fortrans, TriLyte, Colyte, Halflytely, Softlax, Lax-a-Day, ClearLax and MoviPrep
magnesium stearate
polysorbate 80
pregelatinized starch
talc
titanium dioxide
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Post by Zizzle »

I reached someone in the New Jersey office, who transferred me 3 times, eventually reaching someone in India. They said my lot is definitely gluten free, that the starch is corn starch, and they checked with their suppliers. They said it would be a good practice for me to call back every 6 months to reconfirm new batches are also GF. :roll:
Ranbaxy is one of the world’s largest manufacturers of generic drugs, with production facilities in the United States and India.
Yet their news feed reads more like a police blotter!(patent litigation, recalls, etc) They had to hire Mayor Guliani to help them get their drugs approved for import into the US!

http://www.ranbaxyusa.com/Newsroom.aspx
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Post by tex »

Those ingredients appear to be pretty common (that is, they're used in a lot of drugs). I don't see anything particularly worrisome there. PEG (polyethelene glycol) is in just about everything these days.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by tex »

Zizzle wrote:Yet their news feed reads more like a police blotter!(patent litigation, recalls, etc) They had to hire Mayor Guliani to help them get their drugs approved for import into the US!
They sound like a typical drug company. :lol:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Zizzle »

A little tidbit of hope, from a live discussion with an expert from the Myositis assocation.

TMA Member: I was wondering if any study has been done to see if going on a gluten-free diet can alleviate the adverse symptoms from Dermatomyositis and Polymyositis of which I'm experiencing both ailments since 2008. I'm asking because I've read going on a gluten free and/or even vegan diet has helped other immune problems like Lupus and Sjogren's Syndrome (both of my siblings suffer from one of these symptoms).  I did my own test since July and noticed a difference. Not only did I drop 20 lbs but my finger tips didn't profusely cut and bleed but started to heal. It didn't heal completely but I noticed some relief. Also my breathing seemed to stabilize (Polymyositis affects my lungs). I'm currently on 2000mg Cellcept, 5 mg Prednisone and 400mg/80mg Bactrim. I'm a 54 yr Asian female.

Dr. Oddis: Unfortunately, there are no good studies on this intervention. I wouldn't be surprised to know that some pts improve and this is a benign thing to do.
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Post by DebE13 »

Wow, Zizzle.

I had a recurring rash on my face similar to yours but nothing like what you are experiencing. I hope you see some improvements soon.

So far I've had two electro Acupunture treatments and now have to wait until January 2nd to go back since they're closed this week. I was given tian ma gou teng wan to take. It seems to have made my D worse. The bottle lasted a little over a week and I stopped taking it. They're like black BBs I'm supposed to take 8/ 3x a day. I'm undecided if I should continue or not. If it is interfering with the entocort it seems to be a waste of money. I'm less focused on the D because I need the horrible eye pain/headaches to stop. It's $75 per treatment- nothing covered under my insurance.

My second treatment really knocked me off my feet. I felt much worse afterwards but can live with it if I know it could help. I hope your rash doesn't have to become too angry before you find relief! How convenient to be in the same building!
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Post by Zizzle »

I need the horrible eye pain/headaches to stop
Sorry, I'm out of the loop. Do you know what's causing the eye pain and headaches? Do you have high BP? Have you had your ocular pressure checked? Could it be caused by the Entocort? Steroids are not great on the eyes. I just had my baseline eye exam and although my eyes were normal, I'm at increased risk for glaucoma because my grandpa had it, I'm now on steroids, and I had asymmetry of the optic nerve cupp (the opening to the optic nerve). More frequent eye exams... :roll:
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Post by DebE13 »

My headaches are from the eye pain and the only problem they tell me I have is dry eye. I've been on & off lotemax and restasis since summer. I've finally stopped both because the pain is the same no matter what. I dont think its likely the 3mg/day of the entocort is causing the pain but I could be wrong. I'm sure it's causing issues with my blurrier vision, though. I'd like to give it up to see but I'm sure my D would escalate. I've been on it since last February and am working on getting off. I have histamine issues too so my biggest complaints are all in the facial/sinus area.

I give you a lot of credit Zizzle. You have your hands full with health issues and still keep a good sense of humor.

I hope Maurice is doing better. I have two of my own and they are like children. I had to put my 16 year old cat down a year ago because everything was starting to shut down. It was one if the most difficult things I ever had to do. Looking back, it was her time and she was in pain. I take comfort in the fact she had a wonderful life and was treated like a queen.
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Post by Zizzle »

For anyone interested, here's a great overview about the range of autoimmune diseases, the antibodies involved, what they mean, and how they are tested for. I didn't realize there is an HLA type more frequently found in DM, and I have one of them...that pesky celiac gene!
Genetic risk factors for the development of myositis include the alleles HLA-DRB1 *0301 and HLA-DQA1 *0501.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2832720/

A worthwhile read, even if you can't understand it all. Incidentally, I found this article when I did a long-overdue search for "microscopic colitis and dermatomyositis" on PubMed, which yielded 58 articles.

And here's one about all the possible skin manifestations of celiac disease...it's not just Dermatitis Herpetiformis. DM is only "fortuitously linked" but not causally associated...except that permeable intestines may play a role in the ensuing loss of tolerance to self.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369470/


Just starting to peruse these articles now, but my first gut reaction is...why the hell aren't all DM patients told to go gluten free!?! I truly believe I'd be much, much worse if I hadn't addressed my diet. Many of these people are on death's doorstep and still eating crap, thinking they have no control over their situation.
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Post by Zizzle »

:cat:

Maurice is doing much better. He just finished his antibiotic and he's eating well again, drinking a ton, and walking around a bit, mostly to get to the litterbox in the next room. I tried to move it further away, but he peed on the mat in front of the box...he couldn't muster the energy to get inside. So I carry him to the box a couple times a day too. Still giving subcutaneous fluids, but forgetting some days. He's happy in his bed under the Christmas tree and especially when we hold him. He's fragile but still wanting to live, so we enjoy him and shower him with affection every day. I'm ready to let go, but only when he's ready.
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