Mycosis fongoides

Hi again Ayrshire50m , yes PUVA is a remarkable, actually very simple treatment and tends to do a great job, but the more you have the length of partial remission between treatments tends to get shorter. 

I had a lot of PUVA over my first 16 years and yes, itching and sensitive skin unfortunately tends to go hand in hand with it.

When you go for your PUVA…… at the moment ‘just before’ going into the PUVA unit…… are you experiencing…… the best way to describe it is prickly heat especially on your back?….. at these points in time we missed out that session and the following session was set at the same as the last full session…… there are points where the skin needs time to recover.

The simple principle of PUVA is forcing your skin to cast quicker than normal….. the average regeneration is about 30 days…… in PUVA the aim is to reduce this time significantly, the time thus takes all depends on your age but also the % increase on the machine.

At session 25 depending on your acceleration % ( I was on 5% even 10% at times) you may well be in the unit for 10 - 15 minutes so the skin takes a massive hit.

I used to get my PUVA on a Tuesday and Friday at about 2pm. This fitted well with my teaching timetable as I had no class.

I would have the PUVA then go home have some lunch then have a cold-ish shower using lots of Dermal 200 Shower Emollient then my wife helped my to cover all the treated areas with a good coating of….. Diprobase or Doublebase in the early years but eventually we found Hydrolol Cream to be the best…. as it cools the skin.

I then put on a pair of lose fitting cotton PJs…. cotton socks…. even had cotton gloves at times especially when I went to bed and that was me until the next morning when I had a shower using Dermal 200 Shower Emollient again then turning the heat down to close the skin’s pores.

I also aimed to drink 2 litres of water after my PUVA to get my hydration up as this is the best way to feed the skin from the inside.

It’s over 9 years since I had my last PUVA and I still remember the mission it was when having it.

You have only 5 to go 

Hi Mike,

I had to cut back on my durations due to a really bad reaction at 15mins Ive being going in for just over 10mins for the past few weeks, im fair skinned so heat is not my friend at best of times !. It's my entire torso and arms that are super sensitive Using plenty of creams do help cool me down but the effects of these are not the same anymore, practically not getting anymore than 10 or 20mins relief now. The sensitivity keeps increasing

I definitely need to keep more Hydrated which might help, speaking to the nurses having a small break might give me some much needed respite. Thank you again for the sound advice

It is a fine balance, the skin is very reactive at the best of times.

I had full body PUVA….. I had about a 70% covering at my worst  ….. the emollient was put on rather thickly and left to soak in over night……. wife had to change the sheets the next morning - she loved that

I don’t know if you have done this but do check our Lymphoma Action.

They run regular Support Platforms and have a dedicated online group specifically covering MF.

I highly recommend these groups as there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.