What do you think to this?

[+xausted]

Hi,
I had my first appointment yesterday and the specialist has decided that she does not want to give me PUVA as I have type 1 skin. So she prescribed betnovate 5% all over body treatment and light therapy (which was later withdrawn due to my fits).
Well I went today and I am covered in bandages which they have asked that I keep on where possible 24 hours a day and replace the cream twice a day. Within an hour some patches where burning so I was advised to take the cream off those areas. The did not give me a time however have said I may be bandaged up for several weeks.
Now to the question. My sister who is cronic with P does not think that this is the best treatment as the steriod is so high and it may cause damage to my skin. What do you all think? Also I am worried that I will spend weeks bandaged up only to have to return and have PUVA anyway (specialist said she would do it if this did not work). Does this treatment in your experiences ever work well?

[david_8]

hi, ya

it didint do much for my p

what helps 1 does not mean it helps all ! else we would all be on the same treatment

every derm think's there treatment regime is best
and if you dont follow it to the dot , you will never know

my p  even got tolerant to high stength dithranol under occlusion ie  cling film etc
and puva ie tablet /tar /mtx etc
 
? have you been told to moisturise before applyiing the ben/5%

hope your treatment regime works well for you

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[+xausted]

my p  even got tolerant to high stength dithranol under occlusion ie  cling film etc
and puva ie tablet /tar /mtx etc
 
? have you been told to moisturise before applyiing the ben/5%



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They just said to moisturise with normal perscribed stuff.
Just checked the label and it is not what I said, it is : Coal Tar Solution Methylated 5% in Betamethasone 1.4%
I will follow their instructions to the letter...anything that may work has to be good, even if I do look like an egyptian mummy that stinks 

[TrishR]

Good luck with your treatment,  I hope it really helps.  Sorry I have no experience with it, so can't answer your question

[+xausted]

Thankyou anyway
It already seems a little bit better, only I can tell the difference but it doesnt feel as raised. Hopefully it will work quickly - not only for my P but because the smell is awful! (hubbi said I smell like a fence)

[+xausted]

It is actually working!

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There are few scales left on some of the large patches, but some of the new patches that had only come up in the last few days prior to starting treatment are either completly gone or are going. It is not working so well on my scalp, however I am due to pick up Xamiol later today so hopefully that will work better.
I am keeping my fingers crossed that this treatment will at least work well enough to give me some relief from P for a few months. I feel more positive than I have done in months

[LexHolland]

Ey up!

Fingers crossed then!

[+xausted]

Well I spoke too soon.
I woke up this morning and many of the patches on my back seem very annoyed  . They are bright red, itching like crazy and scaling again.The other patches however look the same as yesterday, no improvement but also not worse. 
I have to go out later today and then again this evening so the ointment will have to come off for it...it will be nice to put on clothes rather than pj's however i wonder how this will effect P
Only time will see

[+xausted]

Going without ointment really did not do it much good. I deveolped numerous patches over the weekend on top of some getting worse. I saw the nurse yesterday and she wants me to see consultant again on the 16th, as she is concerned on how quick it is developing. However some patches are responding well, so I will keep fingers crossed that it will do some good in the long term.
   

Sigh
Why can Dr's do complicated brain surgery etc but not cure this dreaded condition