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Thread: PREVENTION OF ROSACEA INFLAMMATION (Patent Published by Gallo et al)

  1. #21
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    Default Chromolyn

    Hi Hg24 -

    I have taken Brom and Quer but quite honestly not for a long enough period to notice a difference. I hope that my allergist will give me a trial of it. If not, I will go back to brom and quer for at least a 45 day trial. My dermatologist feels that there is something going on in my system beyond just rosacea. I am 50 now and have been in menopause for a year. This I am certain is wrecking havoc. Thankfully the clonidine helps a ton with the flushing. I am being monitored by a hematologist for Primary Thrombocythemia which is essentially a high level of platelets in the blood. I had a bone marrow biopsy about a year and a half ago. My allergist is going to ask the hospital (who still holds the sample) do a stain for mastocystosis. I know it is rare and unlikely but I think he wants to be sure. Currently I take 0.1 and 0.05 mg of clonidine daily as well as benadryl in the morning and before bed. I have been receiving IPL treatments on my nose to try and break down the vasculature around the tip. After my 1.5 years of horror after aggressive IPL, I don't think that I would ever use it anywhere else on my face but my nose. I wish I could have regular IPL treatments because it made my skin far less sensitive where I could actually put make up products on my face like foundation, etc. I continue to give consideration to Accutane at a very low dose just to help with my nose. I take 400 UI vitamin E daily and 10,000 IU of Vitamin three times a week.

    I would just like to get to a point where I can get the rosacea skin and nose under control. I continue to remove food items. I just hope at some point post-menopause, that i can find some relief.

    You have an abundance of knowledge and I enjoy reading your posts.

    All my best.

    Wendy

  2. #22
    Senior Member Mistica's Avatar
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    I take 400 UI vitamin E daily and 10,000 IU of Vitamin three times a week.
    What is the latter vitamin? Vitamin A, perhaps?

    Also, why do you take such large doses of vitamin E? It is very vasodilating.
    Supposedly, if we avoid excess inflammatory omega 6's, our requirement for vitamin E is minimal.
    What type of vitamin E is it? Some are more beneficial than others.

    Have you tried other antioxidants, such as selenium, iodine, zinc, vitamin C, NAC.
    Prof Paul recommends larger doses of B5 for oiliness in conjunction with the above, but I think you might find it worsens flushing. It certainly did for me and some other members here.
    However, you could still try a small dose. You'd have to cut the tablets into small pieces.

    I am going to raise the option of niacinamide yet again. It has so many uses, including reducing free fatty acids.
    The topical I use seems superior to what is available on the shelf. I firmly believe the vehicle (base) plays a large role.

    NAC. I have had difficulties with it in the past, as it worsened my flushing considerably, but recently seeing this supplement came to my attention again, I have been running another trial with caution.
    It is not making me flush furiously this time round and I would have to have, it is having some benefits. Nothing dramatic, but some, nevertheless.
    It is a high sulphur product.

    I'd avoid accutane if I were you. It can create disaster. Try everything else (within reason) first.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA.

    Treating for gut dysbiosis under specialist care. (This is helping).
    Previous GAPS diet. Testing tolerance of resistant starch.
    Fermented Foods. 2 to 3 days per week, Intermittent fasting -16-18 hours.

  3. #23
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    Default

    Hi Mistica -

    Yes, sorry, the second Vitamin is A. I know you suggested liver Mistica, but I just cannot tolerate it. My food is so limited now (vegetables and chicken and salmon) that I just do not want to eat another thing that I do not like. I still have a coffee every day which I also must cut out. I thought that the Vitamin A supplement would give me some A and maybe help my nose without going to Accutane which I know I do not want to do. However, seeing an enlarged nose is very, very upsetting. I was used to the skin burning but when the nose hit two years ago, it make me feel so awful. I have a big nose to begin with.

    As for the vitamin E (Jamieson), I did not know it was a vasodilator. The reason I take it is that after the 5 disaterous IPLs which left my skin damaged and dry (lines and dints) and then moved into menopause which dried it even further, I read that it was a good skin moisturizer (from the inside). I was so distraught from the results of the IPL that I started taking taking Cymbalta (anti-depressant) and Clonazapam (anti-anxiety). While I am trying to come to terms with the damage, I find myself hiding my face behind glasses and hair (no longer behind ears). The daily burden of stress is so hard.

    I will stop the vitamin E and see if I notice any difference.

    I would be willing to try the niacinamide. Can you recommend what you use?

    I cannot put ANY topicals on my face. My skin is far too sensitive. I continue with IPL on my nose only to help reduce the vasculature. Even that is not helping much. It is unfortunate that I cannot do regular IPL sessions because it really did help to desensitize my skin.

    Thank you Mistica for all of your help. I truly appreciate it.

    Wendy

  4. #24
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    Default

    HI Wendy, I second Mistica's recommendation re: niacinamide. My new derm actually prescribed it. I've been taking 500 mg 2x day for the last few weeks. It's definitely helped me. That and the quercetin/bromelain are my two main supplements. Some vit C, zinc and magnesium but not daily for those.

    I definitely re-recommend the quercetain/bromelain as Queta had your same symptoms. Her swollen nose and cheeks were greatly helped with it. If you look at the other rosacea discussion site - Rosacea Support - there are folks there in addition to here whose swelling improved with quercetin. It may be that you weren't taking a high enough dose or taking it for long enough to test it properly.

    Both niacinamide and quercetin have health benefits beyond our rosacea - so their good supplements to take.

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    Default

    I recently found out that I have an MTHFR mutation, which means I need to take a methylated form of folic acid because my body cannot perform the necessary methylation. I read that sometimes when people take the methylated vitamins, they start feeling poorly because their body is not used to them but that they can break the methyl pathway quickly if this happens by taking niacin and feel better. I assume, possibly incorrectly because I have no idea about the chemistry of these pathways, that the same would be true of taking niacinamide. I had previously considered taking niacinamide but now that I know it might break methylation pathways, it would seem it would be a bad thing for someone with MTHFR mutation to take unless the scenario I describe above occurs. Can Mistica or anyone comment on this? Even my doctor did not have any answer to this question.

  6. #26
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    Default Rebound flushing from Cromolyn?

    Quote Originally Posted by buratino29 View Post
    Unfortunately, I think all those remedies mentioned, might prove scientific concept rather than have any beneficial and realistic effect on rosacea.
    I have tried cromolyn sodium before. It has very little impact, maybe 10% of what brimonidine achieves. But has nearly as good rebound flushing as brimonidine. That said, liquid concentration and duration of treatment might amend results.
    I really doubt, any of those substances will ever come to significantly improve red face.
    Hey buratino29, I know this post is quite old but Iím interested in trying Cromolyn for subtype 1, but after reading your post about rebound flushing I'm apprehensive about trying it. Can I ask which form of the medication you tried, was it topical eye-drops? I understand you found the rebound-effect almost as bad as brimonidine. Do you think it made your situation worse in the long-run after using Cromolyn?

  7. #27
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    Quote Originally Posted by Brooks View Post
    Hey buratino29, I know this post is quite old but Iím interested in trying Cromolyn for subtype 1, but after reading your post about rebound flushing I'm apprehensive about trying it. Can I ask which form of the medication you tried, was it topical eye-drops? I understand you found the rebound-effect almost as bad as brimonidine. Do you think it made your situation worse in the long-run after using Cromolyn?
    Hi Brooks,
    As far as I remember, I used cromolyn sodium in form of eye drops. Although there was some improvement initially, in the end it was not significant. It did nothing for flushing (cold/warm) temperature impact. It does slightly brighten face up but it did nothing for flushing. So, perhaps it wasnít flushing due to cromolyn sodium but rather to my normal rosacea pathway.
    Even if you experience rebound flushing after cromolyn sodium, as soon as you stop it, it will go.
    If you had not tried Mirvaso, I recommend you to try it. So far it is the only medicine that does a miracle. Unfortunately in my case rebound flushing. But you never know. Some people are fine.
    I hope it will help.

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