Ok, it's time for an update and the brimonidine trial pics have been up long enough. They were just as depressing as the results, so gone with them. 2011 has been up and down, but overall my skin wasn't too bad, withing the stil severe ranges generally. I can't post the worst of the worst flushes, I wasn;t in the mood to picture them, but these are some impressions of the good days and the less good days. Besides, I am still on the same medication (clonidine, propranolol, remeron, Xyzal when needed).
Uhmmmmmmm.. not my best day in every respect. Just turned 32!
Ok, I NEED to post 15 links at least here, to stay up in the air, so excuse my narcissiism, I just added some links to posts I made on the rosacea forum.... (blush).
Ran out of fantasy for other link options, just ignore them if you are already bored at this point.
Another not so bad day (apologies for the bad posing)
Aaaaaaaand another one. All are on a relative good day.I am usually not in the mood to photograph the bad days of the still pretty dominant rosacea life I'm in, here it's doing fairly good.
Just turned 32
I was actually in a good mood here :)
Ok, this one hurts, even looking back. Was too optimistic about biking during the day..... :/
It did calm down after some cold packs and fan use and some hours...
And this one hurt as well. I'm fed up!!!
Doing a bit better again
Just keep smiling (sort of)
No photoshop, that speaks for itself.....
With my dear rosacea friend. Ok, that's it for now.
Best wishes Nat
A question on the forum about medication use for flushing:
Does anyone know why people with rosacea use propranolol and clonidine? If many flushes are brought on by anxiety wouldn't other anxiety medications work, as well - if not better? I'm just wondering why it's a universal treatment on these boards. Everyone seems to always use Propranolol and clonidine over any other anxiety medication. My flushes have caused me to have extreme social anxiety, and I now flush even just thinking about interactions with other people. Would other medications help me more for these anxiety related flushes?
Thanks!
Hi Nana,
clonidine is used by some here, because it acts on the central nervous system, in such a way that both menopausal hot flashes and rosacea flushing is controlled somewhat. It also is a blood pressure lowering med and therefore makes sure the bigger arteries in the heart area are dilated, and because of that the smaller arteries and blood vessels in the extremities (hands, feet and face) get less blood. It can give you colder hands, feet ánd a cooler face therefore.
Propranolol also does this, but it doesn't act as much on the central nervous system. But it does act on adrenalin levels in the body; it reduces the amount of adrenaline that is released and therefore it can help with the 'fight and flight' flushing, that can come from stress, anxiety and tension. So both meds work partly the same and partly different and that's why they can be used together for extra effect. Social blushers tend to have more effect from propranolol, because this drug has more effect on the adrenaline that is involved with social blushing.
Remeron can help some flushers, as it also acts on the central nervous system, minimising the flushing response from the body, and it is an antihistamine and anti-inflammatory.
Hope this helps,
best wishes Natalja
I forgot to mention other anti anxiety meds:
some people have succes with anti anxiety medication like clonazepam and diazepam (valium). The problem with these medication is, that they are very addictive, and within a short time of using them, and that they knock you out pretty bad. They can make you very tired and dizzy and spaced out, from a single dose and make it hard to function, especially when you use them long term.
So if you want to tackle the anxiety driven flushing, a medication like propranolol is a safer and wiser choice normally.
Hello,
Has anyone noticing teeth grinding/jaw clenching as a side effect of remeron? I have been on 15mgs for a little over 2 weeks and I have very vivid dreams and jaw clenching. I cannot seem to tolerate any SSRI's due to the side effect of teeth grinding and now it is happening on the remeron.
I love how it's helping me sleep but have not noticed any effect on my burning/flushing. In fact, it may have worsened a little since beginning the med. I also take clonidine .5mgs 2x a day but I don't think the grinding could be from that but not sure.
Thanks!
Hi,
hmmm, that is a weird side effect for sure!
But a very annoying and disturbing one for you too. I used remeron for the last 6 years and I have very vivid dreams on it too (remeron is actually one of the few antidepressants that doesn't shorten the REM sleep, but makes you have a longer REM sleep, which is a good thing). I also talk in my sleep
But no grinding of the teeth.
If you don't find it to help you with the flushing, I would go off it and see how you do without it. If you think then that it might in fact have helped, you can always start again. You don't want to ruin your teeth over a med that doesn't help your rosacea. I discontinued with the remeron for the last few weeks, to see if it still helps me, but for me the flushing has become much more severe and noticeable for people around me again. I will go back on it therefore, but unfortunately it helps some people here, but not all. It is a frustrating condition that we have.
I find the remeron to help within 2 weeks, usually sooner.
Best wishes Natalja
Thanks, Natalja for your reply. I have read a lot of your posts-- you are very helpful and seem to know a lot about anti flushing meds. I am not sure if it's the remeron that is causing me to grind or not. I have a history or teeth grinding and I cannot take SSRI's because of it (I know that remeron is not an ssri though). Maybe it's just coincidental that I started grinding when I started the remeron. It comes and goes so maybe it is just stress. YES- I have VERY vivid dreams too. Does this go away? I am only on 15 mgs and my dr. will probably bump me up to 30 next time I see him.
This is my 3rd week on it and the first 2 I was on it, it put me to sleep like a baby which was nice because I suffer from insomnia sometimes. It isn't working as well now for sleep so maybe 30 will do it although I think I read on here that s/effects are higher at lower dosages? I am not sure. I think maybe the remeron and clonidine may be helping with the flushing. I don't really flush now- my skin just will get red and irritated at times. The wind kicks it up-- burning is my main problem but it seems to get better, worse, etc. I really want to get that under control because it HURTS. I think I will stay on the remeron for a little longer and hope that the teeth grinding goes away.
Also, do you know if everyone gains weight on it? If it is going to happen, is it early on? I really haven't gained much which is good and I hope that it stays that way. What is your dosage? I am sorry to hear that when you stopped the drug that your flushing got worse. That must be very frustrating for you.
Like I said above, I have read a lot of your posts and some of you blog.. you have been making a lot of progress it seems which is good. I hope that I can stabilize this so it only gets better.
Thank you so much!
I find that 15 mg of remeron makes me sleep very well at all times. I used it for the last 6 years and it makes me fall asleep within I'd say half an hour after taking it at night. I have vivid dreams on it yes, this doesn't seem to lessen with time. I don't mind it too much though. I also used 30 mg for the first few years and I had the same side effects on this dose. Sleep and vivid dreaming were exactey the same, it gave me slightly less hunger feelings, and this is because at a lower dose (15 mg) it acts stronger on the antihistamine receptors, while above 30 mg it activates noradrenaline, which balances some of the antihistamine side-effects (which become less at this dose anyway).
Yes, the medication makes me feel more hungry, mainly for the wrong foods (sugar, carbs etc). I am unsure if it is increased calorie intake that makes you gain weight on this med or if it does something with metabolism. What I found so far about it, indicates that it is mainly increased calorie intake, and that it has perhaps some affects on insuline levels, but I did gain some weight on this med. For me, the advantages of it are too important to discontinue, I accept the increased appetite and the discipline I need to have with food. I used to be naturally thin, so it has been a bit awkward. I can understand that people who struggle with blushing or flushing, but who don't find it debilitating enough yet to use a med like this, might be disencouraged after reading this, but I like to be honest and clear about my experiences with remeron. However, everybody is different and I know some 'non-rosacea' aquiantences who use it and not everybody gains weight on it necessairily. Some of them don't need to do anything different to stay on their normal weight. However, the general conscensus does seem to be that you might crave more foods and especially that your brains no longer give you the signal that you are 'full', like it normally would. You just feel you can continue eating and most things taste good too, much better than before. I didn't find this to lessen with time. The weight gain did stagnate and balance again after a few months for me. With a bit of excersize, healthy diet and lots of water I foudn a weight that I am ok with now (but in all honesty, I prefer the effortless slimline I used to have..) I love the good nights sleep on it though, the blunting of facial flushing and it is also a strong anti-depressant and anti-anxiety med, and I definitely feel those effects, even on the lowest starting dose of 15 mg.
With regards to neuropathic pain, I find my face less painful when I use this med. It might be from the reduced flushing, but I found a link that explains how remeron can affect neuropathic pain:
http://www.sciencedirect.com/science...04394007013171
Hope this helps you. If you don't see much improvement in the next weeks, I would taper it off and see how you do without medication, and if you feel you are getting worse again, perhaps try these meds again at another time. But I would make sure then, to not try out other things too and just set up a trialperiod for remeron (and clonidine if you stop that one too later on). Only then you can sort of objectively say if it affects you in a positive or negative way.
Best of luck Natalja
hello everyone.
I am going to my PCP tomorrow to ask for Remeron and Clonidine. How can I urge my doctor to prescribe these meds for me? My dermatologisit would not and said that "they don't work" which doesn't make sense because many of you are finding relief from your flushing.
Are there articles written by Dr. Chu that I can access and bring to my appt... or by any other well-known derm?
Thanks in advance as I would really like to get these meds prescribed to me. And clonidine works best taken 3x a day (every 8 hrs?).
Please help.. thank you thank you!
Hey,
here are some links to medical sites where clonidine, mirtazapine and propranolol are mentioned as anti flushing meds:
http://www.angelfire.com/journal2/sadhelp/othertx.htm
http://www.netdoctor.co.uk/medicines/100000829.html
http://www.aafp.org/afp/2006/0201/p457.html
http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract
http://www.angelfire.com/journal2/sa...irtazapine.htm
http://www.dundee.ac.uk/medther/taye...ropranolol.htm
http://rosacea-support.org/rosacea-f...opranolol.html
Some reports are on hot flashes, but the mechanism of facial flushing and hot flashes are very similar. I would advice you to print
them out and bring them along. I would try to explain to the doc how much rosacea and facial flushing and burning is limiting
you in your life. How debilitating it is for you and that you like to try some meds out to see if it improves things for you.
I asked my doctor and said that I wanted to have a month trial period, and that we would evaluate afterwards. That gave the
doctor a sense of control and it gave me the time to try it out. When I came back and was less flushed and red, we agreed to
continue with it. Of course I would try to get a trial period that is as long as possible (or not at all if the doc agrees without
the need for such negotiations tactics lol). You can say that many people on a rosacea forum have good experience with it
and that a knowledged and experienced professor in London uses it for bad rosacea flushers (maybe print out his name and hospital,
he's in Hammersmith Hospital).
Let us know how things went?
Best wishes Natalja
Hi Nataljoo, thanks for your help.
Well,.I went to my GP and he did prescribe me remeron, although he did not have any scientific knowledge that it helps for rosacea, but he didn't put up much of a fight because I'm depressed and need an antidepressant.
The Clonidine was a different story and he said that he was hesitatant in prescribing a med that could drop my blood pressure so much. I printed out some info that it can be helpful for flushing with rosacea but that wasn't enough for him to do it. So when I went home, I did some more research and found a small write up on rosacea and that clonidine and low dose beta blockers can help and guess what?? This was written by the very hospital that I went to (University of Pittsburgh)!! So I emailed this over to him and he responded that I can try a low does but I NEED to come back and get my blood pressure checked. I am yet to see it come through to the pharmacy but I am keeping my fingers crossed.
My question to you is should I try the clonidine alone first to see if it helps? YES, as much as I feel I need an antidepressant, I am scared of the remeron and the weight gain. Do most people gain weight on it? I am on a no carb, no sugar, no grains and no dairy diet and my face has felt cooler to the touch and my night flushes haven't really been happening (I hope that I haven't spoken too soon) but will the remeron make me ravenous and not be able to follow my diet? Sugar and carbs are my downfall.and I lived off of them.. and some protein but very little vegetables at all. What are your thoughts?
Let me tell you about the first derm I went to. She said that "there is no treatment for flushing" and people just have to avoid their triggers... and burning is NOT rosacea. Burning is anxiety." I was floored. She gave me metrocream and she told me that if it's not helping then she doesn't think that I have rosacea. UGHH?! She then said that doxycycline and metrocream help most rosacea and she will not prescriibe beta blockers because those are not treatment for rosacea. So she wants me to go on doxy. But I dont have any p&p's.. will it help the inflammation? UNREAL!!
Well, I am not giving up and am happy that my GP is kind of willing to work with me but he wants me to find some more hard evidence that clonidine and beta blockers help with rosacea. So, that is what I will look for next.
What a ride this is. As for my swollen nose problem, dr. looked inside and said the turbinates are very swollen almost touching and that is my allergies. I asked if that could be rosacea and he said no. I have had allergies all of my life though and don't ever remember my nose hurting like this. Maybe it's both but I am concerned with it growing
Maybe I just need to relax....I am just scared. I am flushy when I wake up but that tends to leave when I wash my face and move around.. but since I haven't been eating carbs/sugar/wheat or dairy, I have been less flushy so my diet seems to be helping. I do crave some fruit though and am wondering if there is something that wouldn't spike my blood sugar too high?
Thanks for your help! This forum is a godsend!
Hi,
I have seen an immunologist recently. He has done intensive blood work tests and says I have auto-immune activity, which might´play
a role in my rosacea and colitis and some other immune related problems. The interesting thing: he of course adviced to take low dose
prednison (no option with my rosacea), but explained for a long time how this over active immune system works and interferes with
normal body functions, how it increases inflammation and what I can do apart from steroids to help normalising it.
Vitamin D (my level was extremely low) and omega 3 (are anti-inflammatory, can be fish oil or in my case algae oil with high DHA,
NO omega 6, they are pro-inflammatory).They both help with regulating the immune system.
He warned however against vitamin C and multivitamins. They stimulate the immune system and that is the opposite of what we want
to achieve, according to him.
Vitamin B and zinc are fine, but he kept stressing to absoltuely avoid vitamin C supplements and multivitamins.
I wonder if this will be helpful for other rosaceans. I noticed for years that vitamin C and multivits made me a lot redder and
never used them long term. But perhaps there are more rosaceans here who have an underlying auto-immune problem, that adds
to the rosacea (not sure if it is causing it, but the verdict is not out on that one).
It might be an idea to reconsider if vitamin C and multivits are actually helping you or not.
This is just an opinion of an immunologist (Dr. Pfeiffer, Dùsseldorf), but he seemed pretty knowledged and convinced and had
interesting background theories.
Best wishes Natalja
Hey,
it was with an immunologist in Germany indeed, Dr. Sebastian Pfeiffer (Standort: Labor Benrath).
The main reason why I had been sent there, was not rosacea but recurrent miscarriages.
However, the outcome also pointed towards systemic inflammation and auto-immune problems the doc said and
might be connected with my rosacea and colitis (although doctors are careful to say this is a full fact, but he seemed
pretty convinced they are all related).
Vicky, I had already been tested on ANA levels, antinuclear antibodies. They are elevated with me, 1/80, but
this is not a very high score. Normal is zero up till 1/20, 1/40 is borderline and mild positive and from 1/80
up it's positive (numbers double, and can double up to in the thousand with some severe auto-immune diseases).
The test that I had now was on the following things (but note that things are tested because of the fertility problems and not necessairy for rosacea research perhaps):
-Allergy: IgE (normal with me)
-Entzündungsmarker (Tumor-Nekrose-Faktor alpha)
-Interleukkin-6, 2 and 10
-Hematologie:
Leukozyten, erythrozyten, Hemaglobin, Hematokrit, MCV, MCH, MCHC trombozyten, neutrophile, Lymphozyten, Eosinophile, Basophile, Monozyten.
-Immunologie (!):
CD8+CD11ah, Akuter aktivierungsmarker (CD8+HLA-DR+), chron. Aktivierungsmarker (CD8+CD28+), Chron. Aktivierungsmarker (CD8+ CD57+), Regulatorische T-Zellen (Regulatoric T-cells, these are important), zirkulierendes IgA, IgG, IgM and C3.
Immunglobulin G, IgG1, 2, 3 and 4.
Immunglobulin M and A.
-Infektionsserologie: EBV-DNA Viruslast.
-Klinische Chemie: C3-Komplement, C4 and C1 Komplement and C3-Fragmente.
-Kl. Chemie-Sonstige:
Ferritin, Transferrin-Rezeptor. 25-Vitamin D3
-Lymphozyten-Subpopulation:
Leukozyten (absolut), Lymphozyten (absolut), Lymphozyten (relativ), Granulozyten (relativ), Monozyten (absolut), Monozyten (relativ), T-Lymphozyten (CD3+) relativ
T-lymphozyten (CD3+) absolut, T-Helfer (Helper) (CD4+) relativ, T-Helfer (CD4+) absolut, Zytotox. T-Zellen (CD8+) absolut, Zytotox. T-Zellen (CD8+) relativ, CD4/CD8 Ratio, B-Lymphozyten (CD19+) relativ, B-Lymphozyten (CD19+) absolut. Nat. Killerzellen (CD16+/CD56+) relativ, Nat. Killerzellen (CD16+/CD56+) absolut.
Abnormal with me were: Basophile, regulatoric T-cells, C1 Komplement, Vitamin D, Absolute Monozyten, T-Helper (CD4+), Zytotox T-Cells (CD8+), B-Lymphozyten (CD19+),
Regulatory T-cells are good to regulate pro-inflammatory auto-immune substances the doc said and the most basic things you can do for this is to take omega 3 supplements and need to have your vitamin D levels at sufficient levels (54-90 ng/ml).
Dave, I got rosacea from a steroid creme (very short term use) and the dermatologist that I see, dr Chu in London, strongly advises me against it, as the risk is significant according to him that it can stirr my rosacea further up, as he sees in his practice often and even on very low dose. I don't want to take the risk therefore.
Sorry to read Ronald, how terrible that the flu shot gave you even more problems.. I saw a homeopath once, and he couldn't do much for my rosacea in the end but did mention that he often saw people with problems that started after having some form of vaccination. I had a pretty bad worsening of my rosacea after a hepatitis A vaccination, and thought at the time that I should have listened to the homeopath. But it's pretty inpredicatble I think in general what will happen in those situations.
Hi Judworth and rcb67, I am really not sure if this immonologist is correct, although it seems to make some sense in theory. I am not sure if vitamin C is helping you are not,
it is indeed said to act as an antihistamine as well, so that would be beneficial. It is not even sure if rosacea is an auto-immune condition after all. I just got this advice and found it interesting. I think if you find the vit C to not help you, it might be worth trying how you do without it. But if it's helping you, I wouldn't say stop it. I read it helps to strengthen the blood vessels walls as well, not sure if this is correct, but the positives might overtake the negatives.
Snuffle, wow, you are travelling all the way to Europe for treatments? May I ask where you will go in Poland? And what type of treatments are you after in Europe? I am not sure the doctors are much better here then in Canada or the US. I found the many dermatologists I saw in Holland mostly useless (only had the basic treatments from the book on offer, didn't know anything about controlling flushing), and only found one good dermatologist in London. France and the southern countries have good specialists, but not so much experience with rosacea, as most people there don't have the nordic pale skintype.
Best wishes Natalja
After a ruggy winter, with increased redness, burning and flushing as usual, the milder temperatures improve matter again. I am confused over diets: the limited, healthy, rosacea friendly diet helps to a degree, but my skin seems to look better (!!) when I limit my diet to icecream, gluten free sweet treats like caramel slices and other cr*p like that. Confused!! But not gutted lol, it's the best diet I've been on so far. Just wonder how long I can keep up with it and keep getting away with it. Still on the same medication, no real change apart from the seasonal ups and downs. Happy the winter is over though. I try to just ignore the rosacea as much as possible, do as many nice things in my life as possible and within rosacea restrictions and hope I can keep things a bit stable.
had to use a progesterone supplement (natural gel) and after a day or two my face had the by now well known hormone flare, which took about 5 days to subside again after discontinuing of the hormone. To drive one crazy, this hypersensitivity to everything and anything :/ Constant flushing and burning and swelling, this pic was taken at day 5, so it went well down already.
Am back on the diclofenac. after a few years of discontinuinng with it. I feel it makes me less red, less easily flushed and less broken out. Am still a bit nervous about using it daily (100 mg) with regards to heart problems, but my doctor says this doesn't apply for me as an, uhm well, not very sporty person. Top sporters who take this stuff long term have some extra risk of heart faillure - not the least of possible side effects I'd say. But I'll take a little risk, as long as my face behaves.
Sticking to my other rosacea guns; mirtazapine (15 mg), clonidine and propranolol. Experimenting with diets still and probiotics and natural supplements, but not much worthworthy news on that front.
I have been on most of my medication for the last years, well, basically since 2006. Mostly, things have become much better in that time frame. 2005 was just the worst of the worst in many respects, but the medication (broadly documented in the first blog page as well: http://vascular-rosacea-experiences-...jouwpagina.nl/ ) just dampens the worst; I am generally less flushed, less inflamened and less sore. The flushing is no longer 24/7, but limited to certain triggers; foods, hormones, hot environments, sleep, extremely cold weather and sun of course. I am able to keep the flushing limited to the evening hours when I use a small fan on a low speed during the day, and when I keep the temperatures from getting too high (below 18 degrees inside if possible). Fluorescent lightning is still a crime, I try to wear a hat (glad that I loved them even before I got rosacea) when I have to go into supermarkets with their lovely lightning. I was a bit fed up with the hunger pans and need of constant discipline that remeron brings on and stopped taking them lately. I tried this before, but always went back on them within a month and unfortunately it is going the same this time. am doing ok for about 5 or 6 days, then the flushing sets in again uncontrollable and for no apparant reason. I sleep incredibly poorly on top of all and being nauseous and not hungry all day, and losing the kilo's again all of the sudden are less satisfying than I had imagined. I prefer a less inflamened face over extra weight I concluded once again this week. It's a shame that I need to use these bloody meds for it, but I have little options right now.
I tried another test patch of both IPL with dr Chrouch and laser (Candela), both on another cheek and both on the lower jaw region. A fair area though, enough to see any differences. I think that it made the treated skin more pale, but only when I am unflushed. As soon as I flush, the whole area fills up again. But when I am moderate and normal rosy coloured (this is wehn unflushed, for good order), it appears a bit paler. I think I need a lot of treatments though to 'paint' the whole area paler, and since a full face treatment has proved time after time to make me worse, I will need a lot of time, patience and most of all money to get some decent results. I have time though, I have this for over ten years now and the intense and urgent need to change it now and immediately has weaned off sort of. I realise I am not doing too bad (or at least not as bad as I did in 2005) and that I will need a lot more patience. That's just how it is right now.
With the winter cold here, I added diclofenac again to my regime, it dampens some of the general redness and burning I feel. I react to salycilates, so also to asperin and ibuprufen, but diclofenac (another NSAID) doesn't contain salycilates, and it goes fine for me. I just need to be careful to make sure I always take it straight after dinner, to prevent a sore stumach.
My plan is to stay on this regime, use my vitamin D uv narrow band lamp (doesn't that sound fancy??) to get vitamin D levels up to a normal range and try to stick to my gluten free, dairy free, low sugar, all round boring diet. In summer time I try to get some sun exposure on my body daily, say 30 minutes a day at midday, for more vitamin D. I hope to be able to convince the health insurance to cover some of the IPL treatments, and go more often to Dr Chrouch for more small skin area treatments. I don't want to rush it though (understatement for the lenght of time I take for all this to be honest) and give my skin a few months after every round to recover. I get extra flushing for the first 21st days approx., no matter how big or small the treated facial area, it just makes my body to send repairing signals and extra blood flow to the face for that duration of time. So I don't want that to happen every month.
Best wishes Nat
