Nothing to report

It feels like it's been a long week.  I've had some really itchy days and I've been really dusty. No real changes to report, still red. I think the palms are not flaking as much.  

In my last post I mentioned my change of medication which, if nothing else, should be easier to manage than the last lot as it is just a dose of 6 methotrexate tablets once a week and 1 folic acid tablet on the other days.  Let's see if they start to improve things

Change of meds

Today I saw my dermatologist for the first time in about 6 weeks.  The last time I saw him things were definitely improving, with big patches of clear skin.  Today he saw those patches of clear skin have disappeared.  Also my skin is quite red and the last couple of days have been very dusty.  So the dermatologist has changed my meds. No more cyclosporine and instead;

• -          6 x 2.5 mg of Methotrexate once a week
• -          5mg of Folic Acid 6 days a week (none on the day I take the Methotrexate)
• -          20mg of Neotigason (acitretin) once a day

I was relived to find out my blood tests showed no more reduction in kidney function.  I guess coming off cyclosporine means I can start drinking grapefruit juice again ,but taking Methotrexate means I should avoid alcohol.  Id rather keep avoiding grapefruit juice.  

...like the back of my hand

Not a great deal to report this week.  I posted last Sunday that I got splinter hemorrhages (thin black lines) in 2 of my finger nails.  On Monday a third appeared. They are not causing any problems and one of them has almost disappeared. I am lucky as lots of people with Prp loose their finger nails completely. 

Last week I saw an ophthalmologist (eye specialist) at the hospital. He could see my eyes were dry but there is no damage to them, which is good. 

The only other thing to report is how dry and peeling my hands are. I can't really remember the last time the back of my hand didn't look lizard like and the palms have been getting dryer and more peeling for a while. 

splinter hemorrhages

Over the last couple of days I have noticed tiny black lines under 2 of my finger nails. After a bit of Google research I decided they could be splinter hemorrhages, which are in some way related to Prp 

I want my life back

It's been an emotionally stressful week, and this has had a really bad effect on my skin. Here's the update;

Feet:  top of feet red, dry and dusty

Legs: shrinking patches of normal skin on the calfs.  The rest of the legs not flaking too much but red, dry and dusty

chest & stomach. The clear patches I had have gone.  The skin is redder than it has been in a while and there are constant flakes.

Arms. Flakey and scaly. 

Hands. Small spots of peeling/flaking on the palms.  Peeling between fingers

Face.  Requires emollient a few times a day to stop flaking

Scalp.  Constantly full of scales

Energy levels: low, which is worrying because they have been okay for months.

Mental state: it's really getting to me now.  The amount of dust I am creating every second of every day, the amount of cleaning, hoovering, changing of sheets and clothes that's required, the constant itching, the camping trips, holidays and spontaneous days out that haven't happened.  I hate it all and want my life back. 

No more hospital grease ups

Since this all started I've been going to the hospital on a daily basis to get covered in emollients.  On the days when I am out of town I do this myself.  Recently I have been going in less often as there is always some reason I can find not to go in.  Today I went in for the first time in a week. The nurses were happy that things were improving and I am doing a good job of managing the treatment on my own, so we agreed that I no longer need to go in for my daily grease ups.

As much as the staff at Clifton Hospital have been fantastic throughout this period, I am very glad that I don't have to go in as much.  Its also a sign of how much the condition is improving.   I am not always good at noticing how much it is improving, possibly because I am living with it 24 hours a day, and I just want it to end, but everyone else is saying how much better its looking, and how I am not so red any more. 

update

This week has been a step backwards, possibly stress related. Hopefully this is a temporary blip. 

legs.  The skin is redder than it has been with a clear patch on the calfs and peeling skin on the thighs 

Stomach/chest. Peeling on the belly, dusting on the chest

Arms. No major flaking but very dry

Head. Very itchy and flakey scalp. 

Itchyness. I've been more itchy this week than I have been in a while.