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Discussion Starter #1
Hoping someone has any suggestions!

I have a pain on the top/back of my head near the crown parting going from left to right.

It feels like i've scalded the area, there is no redness/lumps and can't be shingles as it crosses from one half on head to the other!

I could not get to see my regular GP due to half-term holidays so saw a very inexperienced GP today who then consulted with another GP (that my husband and I think is incompetant). The conclusion was they have not got a clue what it is/what is causing it/or what to do!!!!

All I know that the pain/discomfort is the same as when I had been diagnosed with Shingles a few weeks back in a different area of my head (that time pain followed correct nerve line on one side of head and I also had redness and a couple of blisters.

Very confused as to what it could be caused by. I have not changed my diet or used any different products.

Love Lesley
 

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sorry lesley (my new pc playing up) as i was saying i too had shingles on my bottom in October and ended up in hospital cos i developed a severe headache and was for vomiting for hours. The doctor at the hospital explained to me that the itching and tenderness could move round different parts of my one bottom cheek for up to a year until the nerve ending is totally healed, this is what is happening 4 months on. i Use calamile lotion. I hope it settles down soon for you.
Love Denise
 

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The new area of pain apparently can't be Shingles as its on both sides of my head - so its a mystery!

Denise that does sound like one of the most annoying places to get shingles!! I do still get pain with my shingles. Its just annoying now that I get the same type of pain in a different area that is not Shingles!

Love Lesley
 

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hi again lesley,
Do you suffer from DLE?
I have it all over my head, face , eyes, in my nose, and ears.
Its a mystery lets hope its just a dry patch that will dry our n dissapear.
Hope it gets better soon hun.

Love Denise
 

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Discussion Starter #6
Denise,

I was diagnosed (by phone) with SLE in December 2007 but have yet to see the Specialist for a follow-up appointment.

I have never had it suggested that I have DLE although I do have lots of rashes and some scarring on other parts of my body, especially v-neck area and the sides of my neck. I have had lots of hairloss and some redness in those parts that it has not grown back! The redness with hairloss has usually occurred during the summer months! I do still get hairloss now with out the rash. My scalp is very flacky but has not always been like this, also my hair is very dry - used to be on the greasy side! I have redness on nose, cheeks and chin which is more apparent when I feel warm (Raynauds affects my face and makes the patches look greyish at times).

Can you get DLE and SLE? I have not bought these things up with either a Rheumy or Immunologist. I was not ever advised of what they thought might be wrong with me - I only ever answered their questions and never volunteered information as I did not realise my life history was relevant.

Do you get burning pain (to touch) without a rash or redness with DLE?

Love Lesley
 

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Hi Lesley,

I have DLE and suffer from a burning/itchy scalp most of the time. I tend to use the Tgel shampoo which does help a bit. I get the redness on my scalp and rash on my face. I find that it tends to flare up mid cycle then goes away for a while and then starts up again after my period has started. I also find that my scalp sometimes feel that someone is pulling my hair out by the roots if you know what I mean - really painful. I too have been loosing more hair than usual and my scalp is really dry so too is my hair.

Have you had a skin biopsy done? I had one done on my scalp and it was the only thing that confirmed DLE. What medication are you taking? I am currently on 10mg of prednisolone and 25mg of imuran. My dermatologist is looking to increase the imuran as keeps flaring.

I really hope that you start feeling better soon, I know that it really gets me down at times.

Take care, love Maria
 

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Maria,

I have not had a skin biopys done re.DLE but a about 8 years ago I had a biopsy taken from a small cluster on my nose (was apprantly born with it). I was told back then than this part of my skin had a higher risk of changing to skin cancer! I now wonder if they discovered DLE and just thought it unimportant to mention it to me - who knows. I must bring it up with y GP next week!

I'm only on 200mg per day of Plaquenil (due to acid reflux). I have just started to take Naproxen (anti-inflam) today on a trail basis. Before that I have been putting up with pain, but I hurt my back a few days ago and can't sleep properly (I have back pain constantly but things got very unbearable).
I had just started Naproxen (2 days) just before the outbreak of shingles so just in case it was an allergic reaction I had to stop until now! Before Christmas I took Pred for a couple of weeks!

I must say that I have not noticed any improvement taking Plaquenil yet! I have posted prior about anyone having acne problems taking it. I know its supposed to help skin conditions but mine have got worse and the hair is still falling out at the same pase. I have only been on the low dose coming up for 3 months though but was advised that skin and hair improvements were the most likely things to see improvement in the first 3 months.

Maria, what was your reaction to Plaquenil?

Love Lesley
 

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Hi Lesley,

I was allergic to Plaquenil and kept getting double vision. I took it for 11 weeks and it didn't do anything for me at all I was only on 200mgs as I am only 71/2 stone. My dermy is really hopeful that the imuran will help with the flares and I have been taking it for 9 weeks now. It has helped a little with my skin and my hair isn't coming out quite so much. I am finding that the pred is making me break out in spots which is a side affect - Great!

Before you can be prescribed imuran you will need to have a blood test to find out your TPMT level which takes about a week before you get your results. This is done in order to find out how your immune system works. Mine is unfortunately a "low burner" which means that my dermy has to be really careful how much he prescribes me as it can be toxic to your body.

Hopefully we will get there! I would definately ask about Imuran as it seems to be safer in the long term than taking pred.

Let me know how you get on. Love Maria x
 

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Hi lesley,
Yes i do get burning without the rash all the time. I suffer from both DLE and SLE. I was diagnoised with DLE 10 years ago and only a year and a half with SLE.

Denise
 
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