Comment

Comment by Kath UK on April 19, 2013 at 4:58pm

Hello Debs
Thank you for posting your information from Dr. Harries. It was really helpful as I see my derm in 2 weeks and I now make a note to ask for the Plaquenil and not the generic hydroxychloroquine if she suggests I start this drug. The possibility of a turmeric derived drug is also interesting. Someone in this group some weeks ago mentioned that she was taking turmeric tablets from her health shop. I wonder how soon the cucumin pills will be available and prescribed and if it would be worth trying turmeric in the meantime?
Hope the plaquenil works for you and thanks again for sharing your information.

Comment by Simone NJ USA on April 19, 2013 at 4:56pm

Hi Debs: Thank you so much for all the info and asking Dr Harries all the questions and glad it all went well...

Comment by Debs on April 19, 2013 at 2:39pm

ANSWERS FROM DR HARRIES:

1.. IS FFA HEREDITARY (Liz) - not enough historial data on this condition as it was only first diagnosed as we know in 1994, LIZ Dr Harries would like you to discuss you and your mum both being affected, he could do some comparisons of your DNA to see if it throughs any light on this condition. He is interested in people with mothers with FFA and siblings.

2. RESULTS FROM THE FFA SURVEY (Celia) Dr Harries had 52 patients complete surveys and another 50 patients at a clinic in Sheffield. The stats are still being collated and will be done in 2/3 months time.

3. WHAT CAN WE USE AFTER PLAQUENIL IF IT DOESN'T WORK (Pam) - there are other drugs. Immunosupressants and diabetic meds. The diabetic meds are not often used in the UK but he said they are more commonly used in the USA. Recently Drs are also talking about using CUCUMIN (an active part of TUMERIC) for FFA. It has already been used to treat other autoimmune conditions with success.

4. WHY DOES YOU HEAD BURN/ITCH AT DIFFERENT TIMES OF THE DAY (Pam) there is no scientific reason for this, it is just one of those things.

This was my 2nd visit. I had an eye test and a blood test to make sure I am OK to continue with the plaquenil.. I have another 3 months supply. Please note all Dr Harries ladies on plaquenil - when I went to the hospital pharmacy to get my meds they gave me the generic version, I opened the bag to check my meds and asked them to give me plaquenil because the generic version can give people upset tummies. They changed them. Please check your meds before you leave the pharmacy at the Royal Salford and make sure you get plaquenil which is gentle on tummies.

Comment by Simone NJ USA on April 18, 2013 at 9:24am

Good luck today, Debs

Comment by Jules UK on April 18, 2013 at 6:36am

Yes, the first derm I saw, Dr Rajpar, mentioned it. As I remember, he implied it was effective but not recommended for long term use - it sounded very strong and quite scary..... Xxx

Comment by Debs on April 18, 2013 at 6:11am

Hello Julie, good grief I didn't realise there was another anti-malarial after the plaquenil... I will be poised tomorrow with my pen and paper so I won't forget anything... XXX

Comment by Jules UK on April 18, 2013 at 4:14am

Hi Debs, Dr Harries photographed my hairline on my 1st visit, but not my 2nd. He only measured the loss when I asked him to. He's the 3rd doctor to tell me I'm coping well with this - how little they know! Inside it's "Aaaaaaargh!!" But I was surprised to find I'd lost 2cm from the front already. It'll be interesting to see what he suggests to follow plaquenil. There is a stronger anti- malarial drug but it's side effects usually preclude its use, especially if you've had any form of cancer. Sorry, can't remember it's name.
Good luck, and enjoy your concert! Julie x

Comment by Debs on April 18, 2013 at 4:06am

Celia thanks for the encouragement. I am going into London tonight to see a classical concert at St Martins In The Field with a few friends. That will take my mind off my appointment tomorrow. Last time I had my head photographed, I imagine I will have another photo taken tomorrow to compare the hair loss, I know there has been some. Tonight though I will be wearing a nice long wig out so I will have hair by whatever means necessary. XXXX

Comment by Debs on April 17, 2013 at 7:28am

Pam thanks for the questions, it doesn't really make sense that your scalp changes over the course of the day... and of course what is his 'plan B' after the plaqeunil... yikes, I hope he has one!!!

Comment by Heidi Short UK on April 17, 2013 at 3:21am

Hi everyone, hope all goes well for you with Dr Harries Debs! Celia as buses are out of the question how about by train, is there a station near you? I will speak to work today regarding getting 15th off, looking forward to seeing you all face to face!!

• ‹ Previous
• 1
• …
• 425
• 426
• 427
• 428
• 429
• …
• 507
• Next ›
• Page