I need some help quickly. My husband is very sick and we thing organs might be involved. He says he feels like his body is shutting down.

[carguyusa]

He was diagnosed with sweets syndrome a few weeks ago. First occurrence was fall 2011. Happened yearly every fall, but now this spring - and his worst case ever. He has LOTS of lesions - very painful. Prednisone and Dapsone not helping. Now has additional rash, like an allergic reaction. His body is radiating heat at the rash sites (chest, legs, upper arms, neck). He has a fever. His urine (when he can produce it) is very dark brown. No appetite at all. Nauseous. Can hardly keep food down. Very weak. Body aches. Awful brain fog. Only his skin symptoms being treated. Has appointment with oncologist next week, but I fear he won't survive the weekend. Local hospitals are useless. He's been treated at Wake Forest Baptist Medical Center in Winston-Salem NC (2.5 hour drive). I think I need to take him to an emergency room somewhere, but he doesn't feel like he should go to to Wake Forest - doesn't feel they are doing enough for him. Anyone have any ideas? Suggestions? Anyone know anything about Duke hospital in NC?

[Shell567 Administrator Sweet's Syndrome UK]

Hi carguyusa,

As this forum is part of a voluntary group and not linked to any kind of healthcare organization, the information we can provide you with is very limited.

Prednisone and dapsone treat all SS symptoms, and not just the skin lesions. Unfortunately, dapsone doesn't work for all SS patients. If the prednisone isn't working it can indicate that the patient doesn't have SS or has an underlying health problem, i.e. a disorder that weakens the immune system, malignancy or haematological problem. In this case, medications such as immunoglobulin and cyclosporine may help.

As your husband sounds incredibly ill, I think that you need to get him to an emergency room ASAP. Sometimes SS lesions can develop in internal joints and organs, and as you've mentioned that your husband is seeing an oncologist, he obviously has other health problems/suspected health problems too.

The following article will give your doctors a general overview of SS: ojrd.com/content/2/1/34

I will leave a post on the SS FB groups to see if any of the US members have information about Wake Forest and Duke Hospital. For now, I think it's best that you get your husband to any emergency room.

Michelle Holder (Cardiff, UK)

[freckles1]

Hi carguyusa, I agree that you should go to any hospital ER ASAP. Maybe this list from us news and world report will help. Duke is fairly high on the list for rheumatology. Hope this helps and best of luck.

health.usnews.com/best-hosp...

[Shell567 Administrator Sweet's Syndrome UK]

Thanks a lot, freckles1. As patients with SS are often seen by rheumatologists this is really helpful.

Duke Medical Center is ranked at no. 12 out of 118 US hospitals. health.usnews.com/best-hosp...

[farmyardannie]

hello i,m an ex nurse with sweets syndrome and i suggest that you ring for an ambulance and insist tha your husband is taken to hospital with all his symptoms i think they will admit him.please let me know how responds to any new treatment x

[carguyusa]

We tried all day yesterday to get him to go somewhere and being the stubborn man he is he refused. I have pleaded with him again today, and spoken with a 24/7 registered nurse that is a service provided by our medical insurance company. She recommended he be seen at an ER within the hour. Right now he looks like a lobster with the red rash that I think is a reaction to the medicine, even though he hasn't taken the dapsone for roughly 48 hours. The rash is itching so badly he doesn't even notice the lesions from the sweets right now. He is trying to get dressed so I can take him to the local ER. I pointed out even if they do nothing more than put in an IV and give him benadryl that way, he'll get a better dose in his system than he's getting with the pills and that might get him relief. I also want someone to make sure his kidneys or liver isn't failing right now. He's fussing loudly about doing it, but at least he's not refusing to go.

[Shell567 Administrator Sweet's Syndrome UK]

Hi carguyusa,

Good to hear that your husband has agreed to go to the hospital.

Widespread rash is a side-effect of dapsone.

Take care, and keep us updated. x

[carguyusa]

It's been an up and down situation since I wrote asking for help. We are actually still struggling a bit. Not long into starting taking dapsone my husband starting having brown urine, and a rash on his lower legs and ankles. He showed it to the dermatologist and told him about the urine, and the dermatologist (who prescribed the dapsone) said he had no idea what would cause that. My husband stayed on the dapsone - 100 mg per day. After a few weeks the doctor increased it to be 150 mg per day. About the time he started looking like a lobster I looked into the side effects of dapsone and saw that brown urine can be a symptom and that the doctor should be contacted immediately if you have that reaction.

Well, we got my husband to an ER when I wrote earlier on this post asking for help and advice. They gave him a decadron shot. They also started an IV to get him hydrated, and that was an extremely painful procedure - his skin was so touch and thick with every inch of him looking like a lobster that they couldn't feel a vein. They finally found one and only one in his hand, but it it took two people several minutes and tries to get the IV set.

He is currently on methylprednisolone (because he doesn't metabolize prednisone). He keeps breaking out in lesions, but we've learned from the poison control center that dapson poisoning can cause lesions. So we aren't sure if his lesions now are from Sweet's or the dapsone reaction.

At this point ANY exposure whatsoever to the sun causes intense burning pain. He also immediately turns bright red within minutes. Any sort of heat (like in a hot or humid room) causes new lesions or seems to activate ones that seemed to be healing. He's hit a temp of 103.6 twice and another temp of 103.8 in the last week. The one where he hit 103.8 he was at his primary care physician's office. (By the way, now that he has been diagnosed with Sweet's his primary care physician isn't comfortable treating him for anything and has asked him to start looking for a new primary care.) Any way, he was there for them to evaluate his condition, and shortly after arriving they took his vitals, then had him wait to be called in to be seen by the nurse practitioner (the doctor was on vacation). By the time the nurse saw him he said he didn't feel well and thought he was running a temp again. They took it again, and it was 103.8 - it jumped that high in a matter of only a few minutes. She gave him a decadron shot and made him stay there until the temp came back down.

Another problem he is having since the "lobster skin" started is that his skin seems to have lost its ability to sweat. His face, forehead, and neck finally started sweating again a few days ago, and his underarms seem to be working normal. But he doesn't sweat anyplace else on his body.

We've been back to the dermatologist office a time or two during this. The dermatologist who had been treating him for Sweet's (and who had prescribed the dapsone) turned his case over to a dermatologist who has experience treating Sweet's. Unfortunately the doctor splits his time between work up north and work in North Carolina. He is only available at the location in North Carolina 2 days a week, and because of his depth of knowledge and specialties in dermatology he is in high demand and always overbooked. My husband only got in to see him once, and they haven't been able to squeeze him in since then. The doctor keeps telling him to come in and see one of his colleagues and he'll review the file and consult with them, but I'm sure you understand that my husband doesn't trust any of the colleagues at this point.

We believe the intense sun sensitivity is a result of the dapsone reaction, but I don't know that we could prove that. Yes, sun and heat seems to aggravate the Sweet's lesions, really lights them up, and can cause more to pop up. But it didn't cause ALL the skin exposed to the sun to start to burn painfully and turn it lobster red almost immediately until the dapsone reaction. We believe the inability to sweat is also a result of the reaction to the dapsone and we are wondering what the chances are that this will be permanent.

[carguyusa]

I forgot to mention that my husband was taking regular meds to try to bring down his fever, but has since discovered that benadryl brings down his fever much faster and more efficiently. But how long can you take benadryl like that? You aren't supposed to take it more than 10 days according to the package information.