ET and tiredness

[diane1959]

Thank you to all who replied to my query on tiredness.  I will take on board what was said re exercise and hydration.  This mornings results were that my platelets continue to remain around 400 so my medication will remain the same for another 4 months..

It is reassuring to be part of this commmunity.

[bordeauxgirl]

Hi Everyone, I haven't been very busy on the site for a long time. I have PVR along with the associated itching, been on Hyroxy for nearly a year now and I'm wearing well, but the itch is something else, does anyone else suffer?

 I have been offered another round of UVB Light  treatment which helped last year so hoping it will set me up for the summer with less itching. A side to the PV I had developed a strange rash on my shins, looks like crazy paving/ bubble wrap. Flat but raised bumps, very hot to the touch and immense itching (double trouble with the body itch) I saw the consultant for Dermatology and he did a biopsy which came back as Dermatitis, so gave me every cream know to man to no avail.He couldn't find anything to get rid of it.

 In the end all I got was a shoulder shrug. My husband searched the net and found a site in New Zealand who recommended just simple Vaseline, thickly coated and a wrap bandage to keep it in. It seems to be working. So if anyone is suffering from extremely dry skin due to this horrible disease we have , try it. It won't interfere with any of your meds. Regards to all, June

[DENICE66 in reply to bordeauxgirl]

Hi June. Fortunately I haven't suffered any itching or skin problems but I imagine it must drive you crazy. Have you thought about trying seaweed? One of my friends had awful psoriasis and tried every cream and med going with no improvement. Then she tried seaweed soaks and her skin cleared up within a few weeks. I don't know how it worked - it just did. You can get stuff online to use at home or there are some spa's around that seem to specialise in seaweed soak treatments - depends where you are. Maybe worth a try? Good luck!

justseaweed.com/seaweed-onl...

[bordeauxgirl in reply to DENICE66]

Thanks for the info re itching possible solutions. I have just started another round of UVB light treatment at y local hospital so I am told not to try anything at the same time as we wont know which e is best ( sounds right) this treatment  will go on for quite a few months. Thanks again for your trouble. Regards June

[lizzziep in reply to bordeauxgirl]

I get itchy hands and feet, I've been known to rub my bare feet on the door mat to get some relief!! I've tried various things to stop the itching, running under the cold tap, hand lotion, calamine lotion etc nothing in particular works it just goes on it's own - eventually and when my hands and feet are raw with scratching, fortunately it doesn't seem to happen very often these days. (famous last words!)

XX

[lizzziep]

Pleased your platelets are more or less behaving!!

And yes it is very reassuring when you read about others with the same problems and how they cope.

XX

[garden41BULBS]

Any. Sponsored runs in the CHESTER AREA. UK?

[Adlon57]

Always feel tired in morning, due to medication Epilim, what I find really helps is a good shower, wakes me up to some sort of normality, although never a good sleeper, but it definitely is the Epilim I take that causes it. Do you get numbness, bad circulation, especially around the legs?