Author Topic: Idiopathic nodular panniculitis  (Read 11760 times)

Dic Penderyn

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Idiopathic nodular panniculitis
« on: February 08, 2014, 09:06:08 PM »
My daughter's GP has diagnosed her with this I wonder if any one here has any experience of it.
« Last Edit: November 08, 2014, 09:23:52 PM by SunshineMeadows »
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devine63

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Re: Idiopathic nodular panniculitis
« Reply #1 on: February 09, 2014, 02:12:11 AM »
Hi Dic

panniculitis is inflamation of the fatty layer just below the skin; idiopathic just means they don't know the cause and nodular means the doc can feel lumps under the skin.  I've had it for several years, once or twice they have tried prescribing antibiotics for it, but nothing much makes any difference.

An American medical site says:   

General Discussion

Idiopathic nodular panniculitis is a rare spectrum of skin disorders characterized by single or multiple, tender or painful bumps below the surface of the skin (subcutaneous nodules) that usually lead to inflammation of the subcutaneous layer of fat (panniculitis). These nodules tend to be 1-2 centimeters large and most often affect the legs and feet (lower extremities). In most cases, idiopathic nodular panniculitis is associated with fever, a general feeling of ill health (malaise), muscle pain (myalgia), and/or abdominal pain. These symptoms may subside after a few days or weeks and may recur weeks, months, or years later. The exact cause of idiopathic nodular panniculitis is not known (idiopathic).

regards, Deb

Hurtyback

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Re: Idiopathic nodular panniculitis
« Reply #2 on: February 09, 2014, 10:42:47 AM »
From what I have read, it seems that corticosteroid treatment is most usual although some people don't respond.

Dic Penderyn

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Re: Idiopathic nodular panniculitis
« Reply #3 on: February 09, 2014, 01:06:51 PM »
At our GP's practice there are four Doctors three of whom think it may be Lupus her doctor is sure it is panniculitis and her area of expertise is skin conditions,  my daughter has had this condition an awful long time since her teens in fact. But has never been able to get a referral to a Dermatologist.   
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devine63

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Re: Idiopathic nodular panniculitis
« Reply #4 on: February 09, 2014, 11:21:12 PM »
why would they refuse?!!

D

Dic Penderyn

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Re: Idiopathic nodular panniculitis
« Reply #5 on: February 10, 2014, 08:06:27 AM »
I don't really know they keep saying try this try that see if it works then we can see about a referral hardly ever gets to see the same doctor twice in a row she has been put on several courses of antibiotics tho it was patently not an infection then they did a swab which proved there was no infection now its about three different creams and ointments to be used at the same time and now her Doctor is saying give this latest treatment a couple of months then we will talk about a referral again it's crazy she has had referrals for her hyper mobility and for her Pernicious anemia in the past but since the changes they seem to be reluctant to refer to the hospital.

Driving my wife mad as she works (Admin) in the dermatology department at the hospital.
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Dic Penderyn

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Re: Idiopathic nodular panniculitis
« Reply #6 on: February 27, 2014, 07:45:28 PM »
Further to this my wife was chatting to one of the consultants in the dermatology department yesterday and mentioned what was going on he for the life of him can't understand why my daughter has not been referred to the department yet.
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Hurtyback

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Re: Idiopathic nodular panniculitis
« Reply #7 on: March 01, 2014, 08:50:52 PM »
I'm afraid I am inclinded to agree with him Dic!

Dic Penderyn

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Re: Idiopathic nodular panniculitis
« Reply #8 on: March 01, 2014, 09:03:18 PM »
I just don't understand it, there just seems to be a reluctance to make referrals in this surgery. I don't care how good a GP is you just can't diagnose a condition like this visually.
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Hurtyback

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Re: Idiopathic nodular panniculitis
« Reply #9 on: March 01, 2014, 09:16:00 PM »
Surgeries are under a lot of pressure to keep referrals down and save money, some take this rather more seriously than others.

NeuralgicNeurotic

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Re: Idiopathic nodular panniculitis
« Reply #10 on: March 02, 2014, 08:36:05 PM »
I just don't understand it, there just seems to be a reluctance to make referrals in this surgery. I don't care how good a GP is you just can't diagnose a condition like this visually.

Surgeries are under a lot of pressure to keep referrals down and save money, some take this rather more seriously than others.

Might there be another route to the referral? Are there any walk-in clinics at your nearest hospital where your daughter could go to be seen? It's a circuitous route and can involve a lot of hanging around and unnecessary testing, but when a hospital clinic writes a stern letter to a reluctant GPs' surgery it can be a very effective catalyst indeed. 

Dic Penderyn

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Re: Idiopathic nodular panniculitis
« Reply #11 on: March 02, 2014, 08:50:05 PM »
Good idea I will check that out somethings got to be done thats for sure.
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auntieCtheM

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Re: Idiopathic nodular panniculitis
« Reply #12 on: March 02, 2014, 09:43:46 PM »
There is a 24 hour Dr service at my local hospital.  To get an invite to attend you have to phone 111 first and talk it through with the receptionist, then talk to the Dr who gives you an invite. 

However, it is not a quick way to get to see a consultant unless it is really serious.  But they do send a letter to the GP, so that might help a bit to get the GP to move.

Hurtyback

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Re: Idiopathic nodular panniculitis
« Reply #13 on: March 02, 2014, 09:48:27 PM »
Alternatively, is there any chance of funding a one-off private consultation with a dermatologist? Many specialists will move someone onto their NHS list once they have been seen and it seems that more and more are accepting self-referrals from patients. When they don't, GPs are often much happier to refer privately (wrong I know, but that's the truth of it).

Dic Penderyn

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Re: Idiopathic nodular panniculitis
« Reply #14 on: March 04, 2014, 09:54:35 AM »
Daughter had an appointment this morning her doctor had spoken to some colleagues by phone she had been under the misapprehension that  Idiopathic nodular panniculitis is fairly common but now realizes that it is extremely uncommon and is referring my daughter to a dermatologist.  She the doctor has taken some photographs as her colleagues had requested some because they have never actually seen a case before. Unfortunately some of the nodules have become infected so she is on antibiotics yet again.
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