Hello from soosieb99

[jiml]

Hi all
How's everyone doing?

I know I've been away for a while and apologise for that.

Well I'm a year in to taking the meds that I've dreaded for years. I can honestly say even now that I'm not sure about them. A brief synopsis:
Started on low dose of 10mg per day. 2 visits to specialist when I saw underling not main man who seemed happy with progress.
Next visit with main man who said we could do better and doubled the dose.
Despite letters from specialist to gp asking to put meds on repeat prescription to avoid running out between appointments gp has refused.
I have to continually chase for appointments with specialist to ensure I don't run out.
Side effects are quite bad. Continually hot, plus spikes of flushes as well. Hair falling out quite badly. Eyes v v dry so spending loads on drops.
Last visit in March he decided to put me on light treatment again. Had first session 3 weeks ago as there is a big waiting list. Also had terrible time with body temp, incredible itching and bad hair loss so I decided to drop off one of the tablets and go back to 10 mg. probably not the best decision. Had major stress about some stuff and 2 weeks later had the worst flare up ever resulting in being unable to walk and time off work.

So eventually settled down a bit went back on20 mg. Knocked off light treatment this week because I just couldn't cope with it. Then got new appointment through for 16 July which is 3 days after my meds run out!!!!

So spent 2 days trying to get hold of gp finally managing today to see if they could do an emergency prescription as they agreed.

Currently feel v dejected about it all.

Does everyone else have all this trouble or is it just me?  Can anyone give me advice on what I should be asking for when I go back? For an intelligent woman I feel totally at a loss on how to manage everything.

Sorry for long post after all this time but I could really do with your help.

Thanks
S

No need to apologise Soosie, you just come back when you can we are always pleased to see you.

It seems to me as if you have been given the run around in the dermatology department trying to save money....although acetretin is not an expensive drug...

With me when I go to my dermatology appointment. I have my arguments ready in case they want to change anything.and at the end when he says make an appointment for three months....I ask for a prescription for 3 months supply of my drug

I would try to keep up with the acetretin and the side effects should ease off there are many on here that will tell you that, and your hair will thicken up again.