Wednesday, January 4, 2012

Bob update: A whole lotta dunno

May 2011
The Bob situation (you remember, the full body skin reaction, Erythroderma,  I told you about?) has seen some action, but no definitive answers yet. 

Has his situation improved? Well, yes and no. Bob sees some slight improvement in his arms/shoulders, which is true, but his midsection and legs are still pretty bad. He is on Prednisone (prescribed by the ER doctor). The local dermatologist he saw yesterday said the Prednisone was a bad idea -- when the dosage ends this Friday he will likely have another flareup. Based on his skin biopsy she has diagnosed this as psoriasis and is recommending he try several kinds of drugs -- all with icky side effects. I've asked him to hold off till we see the dermatologist at UPenn.

Is it an allergy? The allergist he saw said no.

Is it an immune system reaction? Well, I think psoriasis is an immune system thing, but is it a bigger problem than just that? We don't know. 

File under Scary Things.  Maybe 15-20% of people who have his symptoms (Erythroderma or Red Man syndrome)  end up having some serious underlying disease -- a lymphoma, or lung cancer, or leukemia are common. I'm thinking that in these cases the disease must be fairly advanced to elicit that kind of full body reaction, but that's just an educated guess. Bob's bloodwork looked good, but then again he's a smoker. I want to rule the possibility of the scary things ASAP, but it'll have to wait until the UPenn visit on Monday...

I'm hanging a lot on our visit to UPenn's Perelman Skin Center.  Looking foward to getting some answers!


  1. I hope that you and Bob do get some answers and that they are not scary ones. I'm glad your persistence is enabling him to see these various specialists.

  2. Keeping you two in my thoughts!

  3. Good luck! I've read your blog for years, and currently live across the street from UPEN. If you need ANYTHING, recommendations of places to stay, eat, ect. let me know! Email-

  4. Allergies are autoimmune, but demal allergies are often associated with histamines. There are OTHER autoimmune allergies that are NOT histamines related.

    What *I* would do, and this is just my two cents, your mileage may vary, etc...

    Cut ALL gluten from his diet. ALL of it - no flour, no wheat, no barley, no cookies, no breads, nothing that has gluten. The gluten protein (as it currently exists in modern, selectively bred wheat) is being found to cause autoimmune problems in a significant number of the population. Its been linked to gastro issues, allergies, joint pain, and skin reactions. Its "easy" to try, and has no side effects. I'd give it two to four weeks with zero gluten to see if it helps.

    Also if its a psoriasis, sometimes that has been linked to a protein in milk - so no milk either.

    Fingers crossed for you both.

  5. Thanks Scarlett, Bob and I had the gluten talk -- but perhaps he should quit SMOKING first! His doctor also spoke of going gluten-free. I'm interested in trying it, although I'm sure I'll have lapses. It sounds like there are more and more products catering to gluten free diets; that is a real blessing to folks who can't have it...

  6. Amazing how two different doctors can have such disparate opinions. Hopefully Penn will have some real answers.

    Smoking is never good for you, but I don't know how it might affect the immune/allergy system. Either way, it's a bummer and he needs to quit.

    Sending more good vibes your way. Wish I had some practical advice.

  7. As someone who cut out most/all gluten in June of this year, my vote is on trying that. It's an easy thing to implement, and it has zero side effects. Going gluten-free is easier than you think it will be too. Think whole foods (good protein, fresh/frozen veggies, small amounts of rice and potatoes, and fruit). If you crave bread, I highly recommend Against The Grain frozen bread. It's super yummy with the correct texture and flavor.

    For me, the positives were reduced joint pain, reduced fatigue, improved mood, better ability to concentrate, and a reduction in odd rashes and psoriasis (chicken skin on my upper arms). And yes, between my husband and me, we truly do live in the House of Allergies. :-)

  8. So what the allergist and the dermatologist are saying is actually very in sync. An allergic reaction is immune mediated but it's your immune system attacking something foreign that it thinks is an invader and you get all itchy and swollen as a side effect of the chemicals released in the attack. Essentially in an allergic reaction it is like being an innocent bystander which gets involved in the chemical war between the immune system and the particle its reacting to.

    Psoriasis on the other hand is an autoimmune disease. This means the body makes antibodies and launches an attack on it's own cells directly, rather than towards something foreign. Basically the immune system gets a little confused and comes to see a certain type of cell or particle in your body as foreign and goes after it full force. In psoriasis your immune system attacks your own skin cells, causing a rash.

    The idea behind treating allergies and autoimmune diseases is basically the same. You want to suppress components of the immune system so it can't carry out the attack. Unfortunately it takes much stronger drugs to help autoimmune diseases because the attack is much more forceful and directed. And your immune system is obviously important in preventing you from becoming sick so it's a slippery slope between stopping the autoimmune disease and keeping you safe from infections.

    I'm sorry this is turning out to be a goose chase for you and I know if it does turn out to be truly autoimmune the medicines can be very scary and overwhelming. I do think the idea about a trial without gluten is worthwhile since some people do make antibodies against gluten which also cross reacts with skin and can cause bad rashes.

    One thing that might save Bob some pain is seeing if the first dermatologist can send their slides to UPenn to be examined by their pathologist rather than having to go through having another biopsy taken at that appointment. I know our hospital is usually very happy to review outside slides and a more experienced dermatopathologist may be able to come up with a better diagnosis using the same sample by knowing what to look for. You can call the new dermatologist and ask if that's possible.

    Hope everything else is going well. I'm glad you guys have at least had access to some care so far and will be getting more help soon.

  9. Fingers crossed UPenn has answers that are NOT scary and this "whatever it is" goes away.

    Re gluten free--there are LOTS of gluten free items these days and if you're into baking, check out King Arthur Flour for gluten free flour for bread and cookies, etc.

  10. Hoping for good outcomes for Bob. My daughter in law blogs about eatin gluten free at and frequently posts recipes.

  11. yes, please have him quit smoking! My aunt just died a terrible death last year after fighting a type of mouth cancer that is most common in smokers and drinkers. After watching what she went through for seven years, and then dying a very horrible death, I try to tell everyone I know that smokes to quit!
    I hope you find an answer for this soon.

  12. As someone else who has had to go gluten free, let me say there is a lot on the web. There are sites that help with hidden gluten in foods, and I would even suggest for now giving up oats also. Some gluten free people can tolerate it, some not, but sometimes it's better to really clean up and then gradually try adding back. It may not show overnight results as the body has to cleanse itself. My prayers are with you guys! (You never know. If he cleans up his diet, and I agree about the dairy, his desire to smoke may diminish.)

  13. I don't know if I already commented about this, but check for PRP (pitiriasis rubra pilaris). It's a lovely skin flareup I got earlier in 2011, and it's not a very common autoimmune problem. It looks a lot like plaque psoriasis. A GP and two dermatologists missed it until my third dermatologist who picked up on it right away because he did research on it in grad school. It can be detected by a skin biopsy, and it's usually a one-time flare up with a treatment of Enbrel (but because darn FDA has not approved any meds for this condition b/c not enough people have it, we had to actually pay for the meds... I think you can get heroin cheaper!) but it still sucks. Hope Bob gets well soon. Skin problems are so scary! Good luck!

  14. Definitely ditch the cancer sticks (they'll make anything worse). Quitting is rough, but doable (been there, done that sans Tee ;o)

    I so hope this turns out to be a non-major issue! I know you are probably not appreciating my comments at this point, but Psoriasis is an autoimmune disease; and those can be a bear to firmly diagnose. I'm not trying to be negative here, I just know (after three expensive trips to Mayo) that answers can be unbelievably slow in coming with autoimmune issues. Even when you have obvious symptoms, AIs come with symptom overlap and things are not always as they seem (I'm still waiting on a diagnosis for autoimmune #2 - three years now).

    I often wish "House" was real; he's a jerk and often almost kills his patients via treatments, but at least there's an answer at the end of the hour. *grin*
    Don't know if you want 'em or not, but I'll keep you both in my prayers!

  15. Thanks all for the info. I've never had or seen anything like this so I REALLY appreciate the input.

    Bob went back to work today, I'm sure he is glad to be back in his routine. He's more inclined to just accept this is psoriasis than I am, and he doesn't want to get the chest xray (I got him a scrip!), but at least he is going to UPenn. I know our results are being sent there, not sure about the actual slide. But that's a good idea...

  16. Yep, the smoking HAS to go. HAS to. Pronto. Sorry, Bob, your wife loves you.

    My aunt has psoriasis and is on Remicade for it. Another fellow I know is on Methyltrexate for his. Prednisone is just awful too, but the former two are also cancer meds and have VERY POTENT life-altering or threatening side effects that make Prednisone look like child's play. Though, I will declare, I'd personally rather take a bullet than Prednisone ever again, if I can help it. That stuff made me crazy.

    But, you can't move forward or make ANY decisions until you have a SOLID diagnosis, so WAIT FOR THAT. Then, Bob can decide how he wants to proceed with your help and support.

    I ACHE for you right now going through this. I know EXACTLY what it's like ... trust me!! So I will say a prayer for you and Bob.


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