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

Joefnh · Post by **Joefnh** » Wed Nov 28, 2012 1:37 pm

Hi Zizzle, first I'm so sorry your dealing with this, but I'm glad your pursuing various routes for treatment.

As far as the prednisone, I just finished a 7 month period of taking prednisone and initially you do feel superhuman, I got some of the best sleep and most work done for a week or so. After about a week those effects did fade. After the second week there is a chance you could get the 'grumpies' and don't be surprised if you develop a real appetite. From what I can tell on the Crohns boards I'm on, everyone is different but these side effects can occur at the dosage you're on.

I hope this goes smoothly Zizzle and I'm very interested in how the other treatment approaches work. It seems my immune system is constantly confused.

I hope you feel better soon

Take care

wonderwoman · Post by **wonderwoman** » Wed Nov 28, 2012 10:20 pm

Zizzle, I have been following your posts on this rash and I get tears in my eyes every time I read about what you are going through. And I think I have it bad at times. Nothing compares to what you are going through. I hope your current treatment helps and you feel better soon. You will be in my prayers.

Fish2575 · Post by **Fish2575** » Wed Nov 28, 2012 11:11 pm

Zizzle, I haven't been on in a week or so, so I just stumbled upon this! First of all, it can go away, I only get cholenergic urticaria when I get out of the shower now. No rash any other time. You look exactly like I did...remember my pics? Horrible, itchy, couldn't sleep! Second of all, in my experience, Plaquenil is not that bad. No one put me on Prednisone and the Plaquenil helped everything, and I did have joint pain. I was on it for six years, and I didn't lose my hair or really have any other side effects.Oddly enough, I read somewhere that they use Plaquenil in cases of extreme food allergies that can't be controlled otherwise. I am certain this Prednisone will kick it in the butt and Plaquenil may be a good idea to keep it in remission.

Love, thoughts and hugs your way! Susie

Zizzle · Post by **Zizzle** » Thu Nov 29, 2012 4:07 pm

Now I'm staring down the barrel of multiple cancer screens - a 3 part CT and mammogram, and my OB/GYN freaked out about the CT, saying I should ask about MRI instead. I am freaked out already about the radiation dose, and that didn't help. So now I'm in the throws of research about the true risk of cancer for me, and which types.

It seems researchers at Hopkins are proposing that the same autoantibodies that fight certain cancers are essentially the same ones found in myositis, and that may explain the autoimmune attack on skin and muscle -- they are bystanders in the internal war on cancer.

Overall, my risk of malignancy appears to be 20%, probably the highest of the autoimmune diseases (apart from the cancers brought on my long-term immunosupression).

Nasopharyngeal cancer is seen widely in Asian studies, but I can't imagine I have any risk factors. So we look for lung, breast, pelvis, abdomen, etc. Ugh.

TIEnhanced autoantigen expression in regenerating muscle cells in idiopathic inflammatory myopathy.
AUCasciola-Rosen L, Nagaraju K, Plotz P, Wang K, Levine S, Gabrielson E, Corse A, Rosen A
SOJ Exp Med. 2005;201(4):591.

Unique autoantibody specificities are strongly associated with distinct clinical phenotypes, making autoantibodies useful for diagnosis and prognosis. To investigate the mechanisms underlying this striking association, we examined autoantigen expression in normal muscle and in muscle from patients with autoimmune myositis. Although myositis autoantigens are expressed at very low levels in control muscle, they are found at high levels in myositis muscle. Furthermore, increased autoantigen expression correlates with differentiation state, such that myositis autoantigen expression is increased in cells that have features of regenerating muscle cells. Consistent with this, we found that cultured myoblasts express high levels of autoantigens, which are strikingly down-regulated as cells differentiate into myotubes in vitro. These data strongly implicate regenerating muscle cells rather than mature myotubes as the source of ongoing antigen supply in autoimmune myositis. Myositis autoantigen expression is also markedly increased in several cancers known to be associated with autoimmune myositis, but not in their related normal tissues, demonstrating that tumor cells and undifferentiated myoblasts are antigenically similar. We propose that in cancer-associated myositis, an autoimmune response directed against cancer cross-reacts with regenerating muscle cells, enabling a feed-forward loop of tissue damage and antigen selection. Regulating pathways of antigen expression may provide unrecognized therapeutic opportunities in autoimmune diseases.

ADDepartment of Medicine, Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD 21224, USA. lcr@jhmi.edu

[/quote]

I'll probably do all these tests now, and look into safer Thermography for future re-screens.

Joefnh · Post by **Joefnh** » Thu Nov 29, 2012 4:25 pm

I agree with the use of an MRI over a CT whenever possible. An abdominal CT for instance is equal to about 1000 chest X-rays, but like anything else it's a matter of risk vs benefit. Does the CT in this case reveal something that and MRI cannot?

As far as immunosuppression certainly that should never be taken lightly. When the decision for me to start Imuran came up, I help off for about a month while looking into the statistics. At least for Imuran the probability of developing a cancer while treating a IBD like Crohns was quite low, less than 2%. For most of the immunosuppressive meds the risks are generally higher when used in cases of organ transplant. This group of patients due to other significant health issues was more at risk to begin with. When reviewing the statistics of any of these medications be careful to understand which group of patients was involved in the study.

As you mentioned earlier you had other possible treatment choices. Take a deep breath .... Get the information put together from all of your treatment choices and then make the best decision for you.

What will certainly be of interest is if there are other methods of calming or controlling the immune system other than immunosuppressive meds when it's in the mode of attacking 'self'

Take care Zizzle.

Zizzle · Post by **Zizzle** » Fri Nov 30, 2012 10:59 am

Susie,
Do you know WHY you were kept on Plaquenil for 6 years? How do they decide when you've had enough and it's safe to go off it?? Do you slowly wean down?

I only get cholenergic urticaria when I get out of the shower now.

Getting out of the shower is the worst part of my day. The hot water really turns on the rash. Then I spend 10 minutes lubing up with body butter. I was showering every other day, but on the prednisone I feel like I need to shower every day. I think you sweat more, body odor gets worse, etc. I'm even getting watery D now!! I thought Pred would clear up all the MC symptoms. Instead they are getting worse!!

I made my appt for the CT scans and mammogram...the first available was New Years Eve. That should certainly set the tone for 2013!!:roll:

Fish2575 · Post by **Fish2575** » Fri Nov 30, 2012 11:21 am

My Doc was insistent that I say on it because he said it prevents the more serious complications from the connective tissue diseases.

Here is my two cents about the rashes.....If you can try eliminating all of the high histamine foods it may help. Histame may help. And when you get out of the shower try to cool down quickly (I open the window in the bedroom to let the 40 degree air in) I try not to get overheated in general.

You are probably having more diarrhea because all of the stress of this is getting to you. I had all all of the cancer screens too. Try to take some deep breaths, get extra sleep, and it is going to be okay! I hope that helps! am not trying to be condescending, I have been there. It will get better! You are in the midst of a giant flare, and they do get better!

Susie

Gloria · Post by **Gloria** » Mon Dec 03, 2012 7:56 pm

Hi Zizzle,

I'm still catching up after being gone from the board for a week. You are going through quite an ordeal. It's hard to imagine your rash getting worse than the pictures you posted. I feel for you.

I've been taking Entocort on and off for 5 years, but I refuse to take prednisone. I took it once when I had a reaction to Bactrim. I couldn't sleep at night and definitely felt wired. I didn't like the feeling at all. The least it should do is resolve your MC!

I love hot showers, but I've lowered the temperature of the water now that I'm (still) dealing with the rash. I'm beginning to think it will never go completely away. I can't complain because it's just a small portion of what you are dealing with.

I'm still trying to absorb that your skin problems could be related to cancer. That seems surreal to me. I hope, as Susie wrote, that you will get past this and Plaquenil will resolve it.

I should mention that I'm not aware of any mast cell specialist in Chicago. If there were one, I'd have gone to him/her. The mast cell boards mention that there is one who used to be highly regarded, but he continues to recommend a steroid for treatment, and that is considered old school.
http://mastcelldisorders.wallack.us/yab ... 1293919608
This makes me wonder if your doctor did his residency with Dr. Greenburger. Personally, I would rather seek treatment with one of the doctors in Boston who specialize in mast cells, particularly Dr. Castells or Dr. Akin. If I were you, I would get a second opinion with one of them.

One thing I did learn.......Gloria, are you reading this?............I explained my MC symptoms seemed to miraculously disappear on Claritin, but it didn't help the rash. He was intrigued, but went on to warn me that Claritin is not the safest antihistamine because "it builds up in the cells." "That's why you can only take it once a day." He said Allegra and Zyrtec are much safer, and you can take as many as you need. He has some urticaria patients who take up to 6 Zyrtec a day!! He said not all people get the drowsiness effect, but since I do, Allegra would be his recommendation.

Well, that's a bummer, because Claritin seems to be the only antihistamine that agrees with me. It is the only one that doesn't have a bunch of additives. I'll have to ponder this and check what others are writing about it. Claritin doesn't recommend a dosage of more than one pill a day, either. I stopped applying the cortisone cream for about 5 days and the rash started spreading. I'm back to using the cortison ointment again and it's getting better. I could try reducing the Claritin to one pill a day and see what happens. I'm also slowly reducing Entocort, too. What a tangled mess these autoimmune problems are!

I hope the prednisone gives you some relief and you can quickly get off of it and onto the Plaquenil.

Gloria

Zizzle · Post by **Zizzle** » Mon Dec 03, 2012 10:49 pm

Thanks Gloria. Sorry you are still dealing with your rash. Mine is getting better on the prednisone, if you consider looking purple and beaten "better." Parts of the surface layers feel smoother, and the raw, red sunburn-like areas are dusky purple now. I still itch, but my Chinese med doc says the itch will be the last thing to go. Sigh. As long as it's not worsening, it's good response.

My integrative medicine doc called tonight (I left him an update a few days ago). His opinions and support were valuable. In a nutshell, he said:
1. Take prednisone until the rash heals (hopefully 30 days, 60 max). He agreed with adding plaquenil and tapering onto it. He said I could stop plaquenil when I've been totally symptom free for 3 months. He said it should also help with sun tolerance.
2. Although my gut issues may not have caused this, all autoimmune dx is preceded by a leaky gut, so I must seal it. 100% GF is imperative.
3. He was happy I went to see the Chinese doc in my building. He knows her well and he said no one works better with herbs in our region. He said liquid Reishi the way she prescribes/makes it is the best, and it should do wonders.
4. I should have a consult with a radiologist before I go in for the triple CT and mammogram. He says they may have a 3t MRI that is just as sensitive. He said go with the most sensitive test I can afford (insurance may not want to cover MRI or newer CTs.
5. He agreed this diagnosis "really sucks". Sigh.
6. I should have all the possible blood tests/tumor markers for malignancies...CEA? CA-125 (already negative) and others.

My aunt is here for a visit. She's a self-proclaimed "nutritarian". No diet fads, just 100% real, healthy food all the time. She's never had health insurance...never really needed it. She's a great support. It's interesting to learn that my Swedish grandma suffered more ailments than I knew about...but her life-long smoking probably kept her autoimmunity suppressed enough to ignore it.

I'm doing fine on prednisone, although the anti-itch effects wear off by bedtime. I'm off to scratch myself to sleep. Goodnight.

Zizzle · Post by **Zizzle** » Tue Dec 04, 2012 8:50 pm

So I'm watching my abdomen grow bigger every day. It's fairly tight and full looking, the ol' 4 month pregnant look only higher up. So I looked up the inactive ingredients in the prednisone I'm taking, Deltasone.

10 mg—Calcium Stearate, Corn Starch, Lactose, Sorbic Acid and Sucrose. I take 4 of these every morning, but the bloating does not seem to immediately follow it, it's constant.

Could the consistent bloating be caused by the lactose? Does lactose mean there is dairy protein involved, or could it just be the milk sugar? Deltasone appears to be gluten-free. One side effect listed is abdominal distention.

Should I ask for a different formula or suck it up?

Post by **tex** » Tue Dec 04, 2012 9:54 pm

Theoretically, pharmaceutical grade lactose is supposed to be pure (no casein). Industrial grade lactose, however, is not pure, and is said to contain traces of casein. I have a sneaking suspicion that many/most drug manufacturers use the cheaper stuff (the old "what they don't know won't hurt 'em" routine), because too many of us react to drugs that contain lactose for there not to be a substantial reason.

It could also be the sorbic acid — that's a food preservative with anti-bacterial and anti-fungal action.

Zizzle wrote:Should I ask for a different formula or suck it up?

IMO, it was rather irresponsible/careless for a doctor to prescribe a drug that contains those two ingredients to someone who has food sensitivities.

Tex

Zizzle · Post by **Zizzle** » Tue Dec 04, 2012 10:14 pm

I think I was the careless one for not asking the busy pharmacy when I picked it up. The rheumy could care less about my sensitivities, but he made it clear everyone just gets a generic, so I guess the pharmacy decides. I'll call the pharmacy tomorrow and see if they can sub something safer.

Zizzle · Post by **Zizzle** » Wed Dec 05, 2012 8:37 am

It turns out I'm not on Deltasone, I'm on the generic Sterapred by Merz Pharmaceuticals, which is the only brand CVS carries. I'd have to call other pharmacy chains myself to see if any carry an alternative with better ingredients...unlikely.

http://www.merzusa.com/pdf/Sterapred_pi.pdf

This one contains anhydrous lactose and sodium benzoate, among other things. But the drug should be inhibiting my food reactions, so I guess I shouldn't worry?

The rash on my hips and back is red and angry today. I figured out why I itch all night...because pred is out of your system in 12 hours, so it wears off by bedtime. Ugh. How can the symptoms be this bad on 40 MGs of prednisone?!? This is a curse!!!!

Gloria · Post by **Gloria** » Wed Dec 05, 2012 8:06 pm

Zizzle wrote:I figured out why I itch all night...because pred is out of your system in 12 hours, so it wears off by bedtime.

It sounds like 40 mg of prednisone isn't doing the job alone. If Joe's calculations are correct, 40 mg of prednisone is equivalent to 9 mg of Entocort. I take either 3 or 6 mg. of Entocort each day and it does nothing for my itching. I stop the itching, at least temporarily, by having DH put cortisone cream on at bedtime. An antihistamine at bedtime helps, too.

I haven't found anything yet to corroborate the doctor's claim that Claritin is not a good antihistamine, plus Consumer Reports rated it the highest. If I were you, I'd take Claritin at bedtime. I did take my compounded Benadryl instead of a second Claritin last night - had some BM problems this morning. Sigh. I don't know what I'll do tonight.

I hope you find relief soon. As a working mom, you need a good night's sleep.

Gloria

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

Gloria,
Have you had a skin biopsy of the rash yet? You've been dealing with this long enough to deserve some answers.

I went to Whole Foods with my aunt today and bought a bunch of creams and oils - calendula oil, Weleda creams, shea butter, etc. I'm not supposed to do topical steroids while on prednisone, and I'm nervous about adding other meds, even antihistamines. I did get some relief from a Weleda cream that contained beeswax -- I think it helps lock moisture in better than my homemade coconut/jojoba/olive oil body butter. But that is still my mainstay -- I lube up several times a day. I might try an epsom salt bath next. My mom in Guatemala suggests a fenugreek tea bath, along with other herbs for itching - dandelion, horsetail, plantain weed, etc. We'll see what I make the time for.

I wonder if some astringents might help? I've applied tea tree oil a few times and enjoyed the mild burn. My aunt gave me a roll on oil which contains peppermint and nutmeg - also a relieving little burn. I suppose i'll try apple cider vinegar compresses next. Maybe witch hazel?

Sadly, I'm actually looking forward to adding Plaquenil to my regimen, despite my aunt telling me she knows a guy who got incredibly sick from it, including leg ulcers, etc. Apparently I'm at greater risk of morbilliform drug eruptions from it. Fun.