End of my tether

[Sandra]

Ooh, forgot to say there is one positive in this. They monitor cholesterol levels and mine was high, 7.5. However the other part of the test says I have super good cholesterol so when they average it out, my actual cholesterol level is 4.1! All on a diet of butter, cream and cheese! So low cholesterol, low blood pressure, low risk of stroke!

Sandra

[jiml]

Hi all,
I'll try to answer all your queries.
I went back on acitretin on a lower dose, unfortunately it resulted in severe and constant headaches, muscle pain, extreme fatigue, lowered my blood pressure so I was passing out and then the big one was blood and raised white blood cell count discovered in urine.
At the moment they believe it is the acitretin as discontinuation has resolved everything accept the kidneys. So I have to have a test for kidneys which is next week. They will also be looking for cancer as in cancer of the kidneys you also get bleeding and raised white blood cells. For no other reason than that are they looking for cancer. I won't know anything further until I attend the urology department next week, they have been great in rushing this through. I dont know the extent of damage if any at this point, just that there is a problem with the kidneys.
I can honestly say, I have never felt so ill and yet as I said previously, my skin was great. Obviously the psoriasis is coming back but I have now resigned myself to that's how it is. I won't ever again take any oral medications to treat it. I'm sure I will be fine but due to the fright it has given me, I think psoriasis is the lesser of 2 evils.

So next week I shall be all prepared for lights, camera, action, (all three are in this test) and hope they get my good side! I'll let you know the results.

Thank you all for your concern and the flowers.
Sandra

Sandra I wish you good luck next week with your tests and hope they find out the cause and hope there's no lasting damage ....of course we are concerned , I feel partly responsible for pushing you towards the drug route, so I'm hoping there is no lasting damage and you can resume trying to find another route for clearance

I owe you a slice of our special cake

[Sandra]

Jim, I'm too stubborn to be pushed by anyone, ask my husband, lol. In fact I chose Acitretin over other drugs and the annoying thing is, it worked and worked quickly! If it wasn't for the blasted side effects I'd still be on it! I've already informed dermatology, I want my phototherapy back and consultant has agreed but wants to wait for results of tests. If I get it I will be clear for a couple of months in the summer which would be nice.
Speak soon
Sandra

[jiml]

Jim, I'm too stubborn to be pushed by anyone, ask my husband, lol. In fact I chose Acitretin over other drugs and the annoying thing is, it worked and worked quickly! If it wasn't for the blasted side effects I'd still be on it! I've already informed dermatology, I want my phototherapy back and consultant has agreed but wants to wait for results of tests. If I get it I will be clear for a couple of months in the summer which would be nice.
Speak soon
Sandra

let's hope you are clear for the summer

[Caroline]

Still, also take care with the photo therapie Sandra. It is a very high dose of UV you are getting there and will bring you more risks in the future on problems with your skin.
Be also sure that the Acetretin is really out of your system before starting photo therapy.

Anyway good luck with the results, I hope they will be reassuring for you.

[Kat]

Good luck Sandra!