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Celery Peach
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« on: Wednesday October 27, 2004, 10:20:01 AM » |
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 Just thought I would post about the success I am having on this drug. Most of the regular members know that I have been in a lot of pain over the last few years with the HS. I was stage 2-3 at my worst point. I argued with my Derm about trying the Acitretin but I relented when he said it was this drug or hit the road. Now I have to eat my shorts  I dont care tho, I'll eat em gratefully ! I havnt been this good in 2 years. I have been taking them now for 7 weeks and they started working within a week. What I thought were side effects that first week must of been down to something else. The only side effect I am having now is severly chapped lips, tho this is much preferably to HS. Now where I would have constant pain, with at least 6 boils that would fill and drain all the time along with new ones daily that would fill, drain & go...I have only had 3 x 2 day flares and just the odd painful lump that goes down quickly. I do realize that this drug isnt for everyone. It can give severe side effects. It can also cause serious birth defects so must not be taken whilst pregnant, nor should you get pregnant for 3 years after coming off it. Also that what works for one HS patient might not work for another BUT, if you have finished your family and are finding nothing else is working, it may be worth trying. It requires 6 weekly blood tests for liver/kidney function which I have just had. As long as these come back okay then I will continue with the drug. I dont know how long the Derm intends to keep me on them and I will admit I do worry about the HS returning if I come off them, but for now I am just enjoying being pain free ! http://www.netdoctor.co.uk/medicines/100001821.html
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« Last Edit: Sunday January 01, 2006, 08:44:34 AM by Celery Peach »
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totalfolly
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« Reply #1 on: Wednesday October 27, 2004, 06:34:41 PM » |
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CP, I'm so glad something is finally working for you!  totalfolly |
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 "If you hear a voice within you say 'You cannot paint' then by all means paint, and that voice will be silenced." -- Vincent vanGogh  |
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Fortuna
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« Reply #2 on: Monday November 01, 2004, 02:48:56 PM » |
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ME, too, sorry to be late about this, and I am soooo glad to hear that it's working for you. Especially since you've been through the treatment that I am on now.
Pain free days are no joke!
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"Try anything once, come hot, come cold. If we're not foolish young, we're foolish old."
Canterbury Tales, Geoffrey Chaucer
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." - Gaius Julius Caesar
Luceo Non Uro "I shine not burn
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totalfolly
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« Reply #3 on: Sunday November 07, 2004, 01:33:09 AM » |
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CP, I'm so happy for you! You really deserved to get some relief at last. totalfolly |
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"If you hear a voice within you say 'You cannot paint' then by all means paint, and that voice will be silenced." -- Vincent vanGogh
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Fortuna
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« Reply #4 on: Wednesday November 10, 2004, 02:34:00 PM » |
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That's why I was so happy that the Doxycyclines worked for me, no pain is a highly underrated state of affairs, especially for us HS'rs.
Glad the new meds worked so well for you, hopefully there will be no liver complications at all. Told my Physician's Assistant, that if these pills will eat out my stomach, then no stomach lining is better than not being able to move from the couch!
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"Try anything once, come hot, come cold. If we're not foolish young, we're foolish old."
Canterbury Tales, Geoffrey Chaucer
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." - Gaius Julius Caesar
Luceo Non Uro "I shine not burn
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totalfolly
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« Reply #5 on: Saturday November 27, 2004, 04:31:13 PM » |
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CP, I'm glad to hear they're working! totalfolly |
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"If you hear a voice within you say 'You cannot paint' then by all means paint, and that voice will be silenced." -- Vincent vanGogh
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totalfolly
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« Reply #6 on: Thursday December 23, 2004, 02:45:54 AM » |
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 for you, CP. Hope you're soon feeling better. totalfolly |
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"If you hear a voice within you say 'You cannot paint' then by all means paint, and that voice will be silenced." -- Vincent vanGogh
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Fortuna
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« Reply #7 on: Monday January 03, 2005, 04:12:10 PM » |
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"Try anything once, come hot, come cold. If we're not foolish young, we're foolish old."
Canterbury Tales, Geoffrey Chaucer
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." - Gaius Julius Caesar
Luceo Non Uro "I shine not burn
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kirksbaby
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« Reply #8 on: Sunday January 16, 2005, 02:51:33 PM » |
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That's awsome CP!! I'm so glad that's working for you. Are you moving so far that you couldn't continue seeing him? Becareful that the stress of moving doesn't become to much! KB  |
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kirksbaby
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« Reply #9 on: Sunday January 16, 2005, 07:01:18 PM » |
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It would be a good excuse to spend some time with family, it all depends on, if you like to travel. I personally love to travel! I am always looking for a good reason to drive, in the country(not much on heavy traffic) Play it by ear and don't stress about it yet. KB |
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« Last Edit: Monday January 17, 2005, 12:10:14 AM by kirksbaby »
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Mickster
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« Reply #10 on: Tuesday March 29, 2005, 04:45:04 AM » |
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Awesome CP, and the spam juice (I mean shea butter) IS really good for the dry skin. I scrap my feet with those things that look like little cheese graters aond apply shea butter, and It really works well. I haven't had a lumpie since dec. I felt one coming a week ago, but it went down and is now completely non existant (dunno why, but Yay!!)
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k
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Mickster
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« Reply #11 on: Tuesday March 29, 2005, 05:14:31 AM » |
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CP, I do the salad thing, I'm a low carber and I eat a ton of salad for lunch every week. Tonight I had smoked prime rib roast with wasabi mustard and asparagus with butter....Life is good, and I have lost 55 lbs in the last 3 1/2 years without even trying very hard.  (I'm a cheater though, about once every month I eat a pint of ice cream, it's my weakness). |
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Mickster
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« Reply #12 on: Tuesday March 29, 2005, 05:46:19 AM » |
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cp, you can have all the veggies in the world other than potato's. And I eat fruit all the time, but just not every day. Probably once a week. Read the book, it's really informative, can help you get that choesterol down too.
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k
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Mickster
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« Reply #13 on: Tuesday March 29, 2005, 05:53:11 AM » |
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What about choccy cake ? Is that allowed ?  LOL, not a chance in hell.... |
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k
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Ellen ON VACATION
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« Reply #14 on: Saturday April 09, 2005, 02:26:42 PM » |
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Hello Celery Peach,
I have been reading your progress through these posts regarding your Acitretin treatment. Is Acitretin the same product that we call Accutane here in the states?
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Ellen ON VACATION
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« Reply #15 on: Saturday April 09, 2005, 04:35:30 PM » |
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Interesting...I have taken Accutane 4 different times starting at age 18 and all 4 times it cleared me up for 6 - 8 months and then the cysts and boils came back again.
Someone once told me that the definition of insanity is to repeat the same action over and over again expecting a different outcome each time...hmmmm. Crazy and I appear to be old friends!!
I've been reading your progress with this drug and I'm happy that it's working so well for you. Maybe it will be an option for me if necessary sometime in the future. I pray that the Rifampicin and Clindamycin that I'm taking will keep the HS at bay.
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Ellen ON VACATION
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« Reply #16 on: Saturday April 09, 2005, 05:03:07 PM » |
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I was right in my assessment of you from reading your posts. You're a real sweetheart!
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Ellen ON VACATION
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« Reply #17 on: Monday April 25, 2005, 08:49:13 PM » |
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Good for you!!! Brave girl!
Remember, if you don't like it you don't have to take it!!
Hugs..
Ellen
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Ellen ON VACATION
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« Reply #18 on: Thursday April 28, 2005, 03:20:25 PM » |
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Wonderful Spiky!!! You are well on your way and we are all holding your hand. Great idea about the pictures.
I'm sorry about the headache...have a rest.
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kirksbaby
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« Reply #19 on: Monday May 02, 2005, 12:04:27 PM » |
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CP, It is wonderful to see your success on this med! I pray for your continued success. a quick note: have your protien level checked, when the hair starts falling out , a lot of the times a protein supp. will help. KB |
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