Hi Not at all. Perth is my first port of call in Oz as I fly there from KL on 26 April. Please contact me privately at pdreyer@... and let's see if we...
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willjay17@...
willjay17...
Apr 1, 2009 2:30 pm
So far So good. after 3 days. Now taking 16 tabs daily,20 when PUVA day Using 50/50 moisturiser, which is very greasy, but skin very dry, according to Puva...
115
pat.dreyer
Apr 2, 2009 6:37 am
Hi Judy recommended that I see this specialist while on holiday in Australia. This is the response (after many phonecalls) that a friend received after making...
116
brendabillam
Apr 2, 2009 12:38 pm
Hi Pat, It is an awful lot of money, the exchange rate over here is approx two Australian dollars to the pound which means half the amounts quoted, which...
117
Pat Dreyer
pat.dreyer
Apr 2, 2009 2:14 pm
Thanks for those words and the offer Brenda.... I've been through a variety of treatments and the one which worked best for me was the low-grade radiation. I...
118
alliance15
Apr 3, 2009 6:44 am
Pat, Free of charge consult...buy one of these instead and enjoy the heat! http://www.thewolfeclinic.com/newsletters/2007/heat_that_heals.html Good luck, Lew...
119
willjay17@...
willjay17...
Apr 3, 2009 2:26 pm
Copy of Dr Whittaker's report today. I am stage 1b. Targretin +PUVA, perhaps gradually reducing PUVA.If innefective,could be a canditate for total skin...
120
Pat Dreyer
pat.dreyer
Apr 3, 2009 7:15 pm
Hey Jim It's good news that you're 1B - sounds more promising that they can get you under control. Keep us posted. Cheers Pat...
121
brendabillam
Apr 6, 2009 11:52 pm
Hi Jim, I agree with Pat, this is good news that you are stage 1B, which means it is early stage diease rather than advanced stage disease. lets hope they can...
122
Jim Taylor
willjay17...
Apr 7, 2009 9:31 am
Dear Brenda. Sorry to hear of your terrible Itch. Mine has been worse,, and I take 10mg Prednisolone a day, and I think that helps. I have been on Targretin...
123
brendabillam
Apr 9, 2009 12:03 am
Hi All, Just a quick update, had a lovely holiday with our friends who live in Spain, it was just what we both needed. I hope you enjoy your holiday Pat and...
124
willjay17@...
willjay17...
Apr 12, 2009 11:54 am
Have taken50 Targretin,so far, and skin on hands, arms and legs is peelinggreatly. Some bubbles up, and some is yellow patches, which are soft,and can be...
125
pat.dreyer
Apr 12, 2009 1:00 pm
Hi Jim Don't get despondent - these things take time to work and often you seem to get worse before you get better. People talk of having taken Targretin for...
126
brendabillam
Apr 13, 2009 5:12 am
Hi Jim, Pat is right do not get too down and despondent, if you recall from my posts and if you look at the last few photos in my album you will see my hands...
127
Marianne
meanne2257
Apr 15, 2009 9:05 pm
Hi all- I just joined yesterday, I am not an MF patient, but my boyfriend (someday husband) is. He was diagnosed at 13 I believe and was in remission until...
128
brendabillam
Apr 16, 2009 11:01 pm
Hi Marianne, Welcome to the group, I am sure you will find lots of willing volunteers on here to answer any questions you may have. I joined just over a year...
129
pat.dreyer
Apr 21, 2009 3:04 pm
Hello everyone Am writing this from Krabi in Thailand, having been in this part of the world for about 10 days now. Was in Kuala Lumpur, a small coastal...
130
brendabillam
Apr 22, 2009 4:08 pm
Hi Pat, I replied to this once but don't know where the message went, it's not here anyway. Have been following your trip on facebook and the photo's are...
131
willjay17@...
willjay17...
Apr 22, 2009 4:10 pm
After 25 Doses Hands and feet are half skinned, and I have to use the Vac. to clean the floor. The PUVA nurse says my skin is better, guts dead skin off my...
132
brendabillam
Apr 22, 2009 6:49 pm
Hi Pat, Have been following you on facebook and the pictures are fantastic, thought you looked great sat behind that tray full of food! enjoy enjoy! My skin...
133
Paul Joosten
paul_joosten
Apr 23, 2009 6:42 am
... Now here's an idea I hadn't thought of but would like to share with anybody else that has a Facebook profile. There is an MF Group you can join, there are...
134
Lovita Crasto
lovita_crasto
Apr 23, 2009 3:09 pm
Hi All, Â The facebook group is an open group. Anyone can come and see what you write/share. Yes sharing the info of your disease is better but I am...
135
First name Last name
pat.dreyer
Apr 24, 2009 3:36 am
Hi All Thanks for the info Paul - I looked them up and although a bigger group than ours, the number of messages - and therefore information - is not high. I...
136
snowbear75
Apr 24, 2009 7:41 pm
Hi All, I've just started PUVA again, I was diagnosed in Jan last year, had PUVA from Feb to June which cleared all but one patch. Was reacting to the PUVA in...
137
Lovita Crasto
lovita_crasto
Apr 25, 2009 7:20 am
Hi Claire, Â I understand how you feel. PUVA is comparatively the easiest treatment for MF and when that too causes ill effects like burns/redness you kindda...
138
willjay17@...
willjay17...
Apr 25, 2009 5:04 pm
Just a quickie, to say that my Feet and Legs are badly swollen, and I find it hard to put on socks and shoes, as knees do not bend as usual.I waddle along when...
139
snowbear75
Apr 26, 2009 10:38 am
Hi Lovita, Yes, it was disappointing to not start well on the treatment, I was so pleased at how well it worked last year, after 4 years of patches spreading...
140
twinks0771
Apr 29, 2009 4:26 pm
Hi The group you found on Multiply may have been the interim group we set up. We started off on MSN Groups, then when that closed down we transferred the...
141
willjay17@...
willjay17...
May 4, 2009 3:13 pm
Just tosay, that my Legs, Knees and left Arm are very swollen and it is difficult to waddle, let alone walk. Hospital on Wed, for PUVA and Haemotologist, and...
142
brendabillam
May 6, 2009 11:40 pm
Hi Jim, so sorry to hear you are having a bad time of it. Is it the targretin that has caused the swelling? I know my feet and ankles swelled up after a few...
