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Thread: Protopic magical for swelling

  1. #41
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    Just looking for advice on the best way to treat edema ( fluid build up). Pure neurogenic rosacea-absolutely no p&ps, no real flushing any more and nerve pain under control most of the time.
    The edema is really bothering me though-my blood vessels must be leaking plasma etc all the time.
    Has anybody here tried anti-inflammatories like Voltaren etc? Or anything else that works for swelling?
    All advice welcome. I tried Protopic for a short time but it didn?t agree with my sensitive skin

  2. #42
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    Quote Originally Posted by Momof View Post
    Just looking for advice on the best way to treat edema ( fluid build up). Pure neurogenic rosacea-absolutely no p&ps, no real flushing any more and nerve pain under control most of the time.
    The edema is really bothering me though-my blood vessels must be leaking plasma etc all the time.
    Has anybody here tried anti-inflammatories like Voltaren etc? Or anything else that works for swelling?
    All advice welcome. I tried Protopic for a short time but it didn?t agree with my sensitive skin
    that's too bad about protopic - I just got elidel to try. Was told elidel was gentler by a doc. But ... probably won't agree with me either. I'm going to try applying to my jawline where al lot of the lymph nodes are

    I'm on full dose doxy 100 mg BID now and it helps with my swelling (and flushing). My doc has gone back and forth with me on accutane - saying he thinks it can help but it might make me worse. He would only do a slow titration 10 mg / wk or so with me. He said that nsaid's, antibiotics, and accutane are the treatments for lymph buildup and sometimes he recommends lymph massage and custom face mask to wear overnight. Odd things I've found to help me (swelling) are clonazepam and benadryl.

    Voltaren burned my skin just fyi

  3. #43
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    Quote Originally Posted by laser_cat View Post
    that's too bad about protopic - I just got elidel to try. Was told elidel was gentler by a doc. But ... probably won't agree with me either. I'm going to try applying to my jawline where al lot of the lymph nodes are

    I'm on full dose doxy 100 mg BID now and it helps with my swelling (and flushing). My doc has gone back and forth with me on accutane - saying he thinks it can help but it might make me worse. He would only do a slow titration 10 mg / wk or so with me. He said that nsaid's, antibiotics, and accutane are the treatments for lymph buildup and sometimes he recommends lymph massage and custom face mask to wear overnight. Odd things I've found to help me (swelling) are clonazepam and benadryl.

    Voltaren burned my skin just fyi
    Thank you so much for that lasercat. Maybe I should continue with NSAIDs and see how it goes. I tried 100mg doxy 2 years ago and I don?t think it helped but maybe swelling wasn?t as big an issue for me then. It is difficult to remember!

  4. #44
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    Quote Originally Posted by laser_cat View Post
    that's too bad about protopic - I just got elidel to try. Was told elidel was gentler by a doc. But ... probably won't agree with me either. I'm going to try applying to my jawline where al lot of the lymph nodes are

    I'm on full dose doxy 100 mg BID now and it helps with my swelling (and flushing). My doc has gone back and forth with me on accutane - saying he thinks it can help but it might make me worse. He would only do a slow titration 10 mg / wk or so with me. He said that nsaid's, antibiotics, and accutane are the treatments for lymph buildup and sometimes he recommends lymph massage and custom face mask to wear overnight. Odd things I've found to help me (swelling) are clonazepam and benadryl.

    Voltaren burned my skin just fyi
    That's interesting that you may be trying accutane soon. I'm also about the restart taking it again at a really low dose of 10mg a week, (5mg 2 x a week). I've also been prescribed Protopic for the intensely itchy red patches I have on my cheeks.

    Both my rheumatologist and the new dermatologist that I'm seeing who specialises in lupus and other autoimmune diseases said accutane may be the best bet for me. I've since been diagnosed with cutaneous lupus. Apparently it works well for lupus lesions- must be via some anti-inflammatory pathway. I also wonder if it somehow helps in a minor way by regulating cell turnover and shedding all the dead skin cells that build up more efficiently. Apparently lupus skin has problems shedding these dead cells.

    I am obviously a bit scared that this may backfire on me and trigger all the painful flushing. So it's a bit of a risk and could go either way but I'm willing to give it a shot. To be honest all the flushing that started 2 years ago was when I lowered my maintenance dose of accutane and prior to that I had amazing skin in all the 15 years I was on the drug. But who knows- let's see what happens and fingers crossed it won't aggravate anything!

  5. #45
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    Quote Originally Posted by Momof View Post
    Just looking for advice on the best way to treat edema ( fluid build up). Pure neurogenic rosacea-absolutely no p&ps, no real flushing any more and nerve pain under control most of the time.
    The edema is really bothering me though-my blood vessels must be leaking plasma etc all the time.
    Has anybody here tried anti-inflammatories like Voltaren etc? Or anything else that works for swelling?
    All advice welcome. I tried Protopic for a short time but it didn?t agree with my sensitive skin
    Have you ever tried accutane? I started at the beginning of November taking 5 mg twice a week, Monday and Friday, so total of 10mg a week. It has definitely started helping the swelling of my nose.
    I never had any pustules or papules just flushing and swelling from the first day this started. In the morning before I could actually feel fluid under my skin if I gently press my nose in the morning. Classic edema. If it keeps helping I will go down to 5mg once a week. No side effects yet, only very, very slightly dry lips. No increase in redness or flushing.

  6. #46
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    Quote Originally Posted by Johndlwdbm View Post
    Have you ever tried accutane? I started at the beginning of November taking 5 mg twice a week, Monday and Friday, so total of 10mg a week. It has definitely started helping the swelling of my nose.
    I never had any pustules or papules just flushing and swelling from the first day this started. In the morning before I could actually feel fluid under my skin if I gently press my nose in the morning. Classic edema. If it keeps helping I will go down to 5mg once a week. No side effects yet, only very, very slightly dry lips. No increase in redness or flushing.
    No I haven?t tried accutane but I think I will try a low dose. I am determined to get rid of the edema and I know it?s just a case of hitting on the right drug. I?m hoping to see a neurologist soon and would like to hear his thoughts on the swelling. This all started with nerve pain for me from vbeam treatment.

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