Has anyone been given the wrong medical treatment for their Sweet's syndrome?

[Shell567]

I would be interested to know how many patients have been given the wrong medical treatment for their Sweet's syndrome. The situation has improved a lot in the past 5 years, but some patients are still being given the wrong treatment, particularly antibiotics (sulphonamides, tetracyclines, or antibiotics to treat infection are the exception).

Wrong treatments can include:

- Antibiotics, particularly repeat antibiotic therapies.

- Surgical wound debridement (surgical removal of affected tissue).

- UV light therapies.

Thank you,

Michelle (admin).

[Shell567 Administrator Sweet's Syndrome UK]

I was initially treated with repeat antibiotic therapies. This continued for many months, despite the fact that my condition was getting worse. However, this was before I received an accurate SS diagnosis.

[skydancing]

Hi Michelle, wrongly diagnosed with cellulitus, given IV and oral antibiotics for about 4 months plus surgical debridement. Skin all clear then lesions at the back instead of the front of the leg and finally after more courses of IV antibiotics they did a biopsy and diagnosed Sweet's Syndrome.

[Shell567 Administrator Sweet's Syndrome UK in reply to skydancing]

Thanks Skydancing.

Unfortunately, some doctors are still debriding SS lesions even when they've been advised not to do so.

Michelle.

[Suegal3]

Hi, I have been diagnosed with SS for the third time by a skin biopsy. This past June it started with a high fever and skin lesions. Just like the other 2 times in 1996 and 2005. Today I feel like there's a 4x4 shoved up my neck and I can't turn my neck without pain. Also my thumbs and large toes hurt like they have been sprained. I get spasms up my arms and thigh bones. Also my eye sight is blurry. I have finished my prednisone and now on colchicine and naproxen. I'm hoping this goes into remission just like the past 2 times. I'm wanting to know if anyone out there knows what I can do or not to do with SS. food, rest, exercise.?? Also any medications anyone finds helpfull I would love to know. Drs just don't seen to know much about this disease.

Thanks Susan

[Shell567 Administrator Sweet's Syndrome UK in reply to Suegal3]

Hi Susan,

There are a few things that you can do to help manage SS.

1. Remember that SS can be triggered by infection, particularly upper respiratory tract and gastrointestinal.

2. Minimize or avoid skin damage or irritation. Skin damage can sometimes trigger the development of new lesions (pathergy).

3. Overexposure to sunlight or UV light can trigger a flare-up.

4. There's no evidence to show that SS is directly caused by diet or can be treated or managed with diet.

5. If your SS is causing painful/painful and swollen joints, or you have another kind of active inflammatory arthritis, e.g. rheumatoid arthritis, do not see a chiropractor or osteopath. Joint manipulation can make symptoms worse.

6. Don't try to 'push-your-way-through' the pain caused by SS. It has a tendency to make things worse rather than better. If you have a lot of joint pain and swelling, the main aims should be relieving symptoms and maintaining joint mobility.

7. Fatigue is very common. It's not the same as simply feeling tired, and can be debilitating. Managing Fatigue, Versus Arthritis versusarthritis.org/about-a...

Michelle (admin).

[Suegal3 in reply to Shell567]

Hi Michelle,

Wow I had no idea sun could trigger a flare up. I was travelling around India for a weeks in February. March and came home tanned, and with staph infection. This is when I stared going down hill. I go see an internal medicine Dr. September 14th I'm hoping he has suggestions for management. I'm glad you said no chiropractor as that as been recommended to me as well as physio. I will hold off on that. Do you know if SS just goes into remission or is it something I will always feel in my body. My Dr. Says I'm his first patient and the dermtogilist says he sees only 1 SS patient every 18 mths.and I live in a large city in calgary Alberta Canada with a large population. This being said they don't know a whole lot about this rare disease. im a very active 62 year old and want to find a cure or something to ease this pain and swollen joints. I do walk at least 10000 steps a day, it's hard as the joints in my big toe feel swollen and my ankles ache. I wish I was a swimmer...but I'm not.

You have been helpful. Thank you for taking the time to respond to my letter.

Susan

[Shell567 Administrator Sweet's Syndrome UK]

Hi Susan,

Overexposure to the sun isn't a problem for all Sweeties, but it's most certainly a problem for some. Also, as infection is a common trigger for SS, there's a good chance that your staph infection triggered a flare-up.

It's fine for you to have physiotherapy as it's completely different from chiropracty, and doesn't involve the same kind of joint manipulation.

In regards to how long you will have SS, that's a difficult question to answer.

- Up to two thirds of patients only have one episode of SS, and then it never comes back.

- At least one third of patients will have repeat flare-ups.

- Some patients will have a few flare-ups, but then it settles down.

- Even if someone does continue to have flare-ups they are not always severe.

- You are more likely to have repeat flare-ups if you develop your SS secondary to another condition. This is because when the underlying condition flares-up it can trigger the SS.

- SS can sometimes settle down without treatment, but this may take weeks or months.

Hope this helps,

Michelle.

[REVIN4GOD]

Yes. I was given both a topical and antibiotics that were ineffective prior to my biopsy.

[Shell567 Administrator Sweet's Syndrome UK in reply to REVIN4GOD]

Thanks Revin4God. Trying to treat SS with antibiotics does seem to be a common problem.

[snowshoes77]

I'm on colchicine (Mitigare). I don't know how or why it works, but it has been relieving the symptoms if caught in time.

[Shell567 Administrator Sweet's Syndrome UK in reply to snowshoes77]

Hi Snowshoes, good to hear it works or you. x

[Shell567 Administrator Sweet's Syndrome UK in reply to Shell567]

Info on colchicine for anyone who needs it. Colchicine, Dermnet NZ dermnetnz.org/topics/colchi...

[Shell567 Administrator Sweet's Syndrome UK]

Lady in UK misdiagnosed with leukaemia when she had Sweet's syndrome (given intensive chemotherapy) healthunlocked.com/sweetsyn...