My short experience with clonidine, sorry for the not so short story.

[Alba]

My short experience with clonidine, sorry for the not so short story.

My primary doctor was kind enough to give me the prescription for the clonidine. I told him how I have read positive results from this forum and he is a very kind doctor and agreed that it might help. I had asked him previously but he always said that this drug can have dangerous side effects and would rather I didn’t try it. But this time after seeing no improvement and that I was so miserable he agreed. I was suppose to start .05mg once at night, then increase slowly to 2 times a day then 3 times a day which would be every 8 hours.

So I started last Wednesday night with .05mg. Then on Thursday at night again. Friday I took it in the morning and evening. During Friday I noticed that I flushed less I woke up slightly pink and then it went down to normal color quicker then when not on the clonidine. I did feel very sleepy, tired, nauseous, and just crappie. Yet my face was not flushed at times I thought I was then I would look in the mirror and I was just slightly pink. Usually I have the a/c at home around 72 degrees and with and ice pack gel with me where ever I am in the house (if I could hang it around my neck I would). Yet not Friday no need for the ice pack gel and I had to raise the a/c around 74 degrees cause I was cold. I started to feel my hands and feet more cold than usual (I take atelenol for my high blood pressure for many years which is a beta blocker), I think because of the beta blocker I tend to have very cold hands and feet and when under the covers my feet get too warm at times. I slept well Friday night woke up Saturday again my face was a pale pink.

I have to sleep with a fan next to my bed aiming directly at my face in order to be able to sleep w/o burning flushing pain. My only good fan just the right size died on me so I have a new one that is not good enough for me. If the fan doesn’t hit my face correctly while Im sleeping I will be woken up in the middle of the night from the burning pain on my face. Yet Thursday and Friday I woke up and the fan wasn’t even aiming correctly at my face and my face was still a pink color. I was so happy to wake up not red and thinking wow this med is working already.

Saturday I took the clonodine 3 times once in the morning then 8 or 9 hours later the next one b/4 bed. During Saturday I was so stupidly drowsy felt like if I had a hangover, even b/4 I took the 2nd pill, I fell asleep watching tv for an hour ( I can never nap). I felt very cold went under the covers and I was asleep. Went to a b/day party, the house I was at is always warm at least for me around 78 degrees. I felt warm I know my ears were flushed I wore my hair over my ears and covered them with makeup so I knew no one could tell. But I felt them just a bit warm not the severe purple color that is so painful and my cheeks were just warm. I didn’t get the severe flush which usually happens mainly on my right ear.

Then when I arrive at home I took of my makeup expecting the worse purple color but no it was a medium pink. I woke up Sunday a bit pinker than the 2 previous days. I took my dose in the morning and one b/4 bed. During Sunday I felt more drowsy than previous days more nauseous and very cold to the point of chills. I fell asleep around 4pm while watching tv, slept for 2 hours and I could have continued. I had not energy what so ever all day, it was terrible. During the night I didn’t sleep well was feeling my feet more hot than usual. During all this days since being on the clonidine one great thing was when I got out of the shower my ears were normal color usually they are red and my right one is purple.

I woke up Monday with my face more red than previous days. I took my morning dose. During work I was very cold, my face for sure was happy but my body way too cold. So sleepy, terribly drowsy. I also notice that I was forgetting things I just did or said very weird, I think it was from how drowsy I was it was like if I was doped up. This was happening a lot 4getting things. I got nervous, my heart was racing, I had no patience, don’t know if it is from how drowsy I felt all the time. Also had been noticing that my breathing was strange I just wasn’t breathing like usual and day by day I had notice this to be worse. Monday night at home I had the a/c on 72 and I was so freezing I was almost shaking ofcourse my face was very happy but I felt so sick from how freezing I felt. I took my dose b/4 bed. Monday night was the worse woke up around 4am my face felt like it was on fire and at same time my feet. My feet felt like they were pulsing they were severely hot and the worst pain I have ever felt. I took them out of the covers, ( my room is around 68 degrees) and no matter what my face and feet would not cool down. Around 7 am they finally cooled down. Also during this time my skin on my neck and legs were itching really bad.

Also my dry eyes were feeling dryer even more.

On Monday I exercised on my tred mill and it felt like I had run a marathon. It was so hard to finish my usual 30 minutes, I was actually in pain as exhausted pain. I have never felt this bad not even when I’ve had the flu.

After all this I just decided to stop. I don’t know if it was going to get better as time went on but I just could not function like this anymore I was afraid while I was driving to fall asleep almost happened several times. Also the side effects of this medicine can be more dangerous than even the rosacea. Some are very blessed not to get the side effects but from several reviews I read on the internet many more have very bad side effects.

Yesterday (Tuesday) I didn’t take the clonidine at all, I’ve been more flushed but yet I feel alive and not like a zombie. I worked out yesterday and it was great yes back to having my ice pack gel by my side but I was awake alive not doped up. Last night my feet got warm I took them out of the covers and within a minute they got cold and back in the covers. Yes I did wake up flushed which is horrible and since I’m going w/o the medicine I pray my body will adjust quickly.

Its terrible that what one medicine makes better screws us up in another way.

I took accutane for 6 months and I had side effects but never as bad as this medicine on 5 days.

Alba

[Judworth]

My dear friend Alba,

You know how I feel about what you have had to endure,, but at least you have

tried!

I hope others can give you more hope.................

Hugs Jx

[Alba]

Yes thank you Jx for your kind words and support.

Just thought I would share my personal experience with everyone.

Im flushing more today, I pray it calms down. Yes you are right, at least i can say i tried. Its funny how we think we are so bad and then we try something new and think wow this is really bad more bad than b/4 trying new stuff. But how else are we going to find something that works only by experimenting trial and error i guess.

The worse but also good is that everyone is different and react so different.

Everyone here on this forum gives us hope, we are all on the same boat trying to find something that will help and improve our quality of every day life.

Alba

[BMBM]

Hi Alba

I had many of the problems you mentioned with Clonidine - the worst being the drowsiness. It took my body about 6 or 7 weeks to get used to it but once my body adjusted then the drowsiness, the dry mouth etc stopped. Sadly, it did nothing for my flushing so I've stopped taking it.

Maybe you could try on half the dosage 0.025mg/25mcg and see if that is more tolerable as it seems it is helping you in other areas.

You could also ask your doctor to look at Moxonidine as it acts similarly to Clonidine without the side effects. I've been taking it 3 weeks so far but it's too early to tell if it is making things better.

Good luck.

BMBM

[Alba]

Thanks BMBM for your suggestion and input.

My doctor's office called me back and left me a message that he had called in a prescription for me called generic name amitriptyline, brand name Elevil. When I saw him I told him that other members on this board were having success with Remeron and Elavil. He said we would 1st try clonidine and then if that didn't work Elavil. He said both Remeron and Elavil had possible dangerous side effects but he would choose the lesser of the 2 evils which would be Elavil. He said that many patients with diabetes had neurological pain and that Elavil somehow blocked this pain. I know the member on this board Rosabolic has taking Elavil and took his flushes away. My doctor prescribed 25mg Elavil to take at night.

I just looked up the side effects and many are similar to the clonidine. My body is just adjusting to being off the clonidine. yesterday afternoon i was feeling nervous jittery it was horrible so i took a whole xanax (usually for special occassions i take half of a xanax) and thankfully it calmed me down so weird i wasnt even super sleepy i just felt normal so imagine what the withdrawal of the clonidine was doing to me :o(

So for now Im not going to take the elavil, just give my body and face time to rest from these meds.

I couldnt imagine going through the 7 wks feeling like i did on the clonidine. It was helping me at i could notice the difference in the color of the redness going to a light pink it was great but just feeling so crappy all i wanted to to was stay in bed i had to force myself to do things but i think one of the worse was how it was affecting my memory this was really scary!

My primary doctor is a sweetheart so if i mention the monoxide im sure he will give it to me but he always has told me that all these medicines are so dangerous but that if our rosacea is affecting our every day so serverely that i guess we have no other choice but to take a chance.

Please keep us updated on the monoxidine. See on the clonidine i noticed a positive reaction on the rosacea from the very 1st dose but side effects horrible and wondering how much damage this could do to me in the future.

Is monoxidine the same as clonidine in reference to the rebound flushing? From what i experience the last night at 4am it must have been a rebound flush which lasted 3 hours extremely the most painful flush ever to even include my feet. From this i think i probably would have to been on a higher dose which would mean more possibitly of more severe side effects. also the feeling of being so extremely cold, freezing to feel those extreme chills not good either.

God help us all please...

Alba

[seascape]

Hi Alba
sorry the clonidine didn't work out for you. we place hope in getting new prescriptions and then they either have no effect or have bad side effects we have to stop them. i know it can be hard to stay hopeful.
i thought it might be helpful to hear my experience of clondine - over 3 weeks i worked up to 0.1mg twice a day. i was taking this dose for 5 weeks, didn't see any improvement and then realised i had been feeling really lethargic and brain foggy. took my blood pressure in walmart when i was picking up the rx, it was 89/54 which is much lower than normal, and this was what was making me feel so tired. my derm said stop taking it but come off it slowly, reducing it over a 2 week period. this is because you can get high blood pressure spikes.
be careful taking these meds and always ask your doc before changing dosage etc.
hope something helps you.
seascape

[Alba]

Hi Seascape,

Thank you for sharing your experience makes me feel better that this wasnt just in my head.

Yes that's exactly it foggy brain OMG and this was being on it for only 6 days. This morning i was thinking maybe i should have tried it longer but the thought of continuing to be so forgetfull besides all the other i told myself no i couldnt. But after hearing your story im surely glad i didnt.

Too bad cuase i did see a difference in the morning i woke up slightly pink, i was able to apply my makeup faster not having to go for the ice pak or fan to cool my face down it was great. I also felt colder like last night the a/c was on 72 and my face was still hot i had to be applying cool ice pak gel while watching tv. Yet on the clonidine around the same time as last night the a/c was on 74 and i was freezing yes my face was so happy no ice pak gel needed but i had to put a warm cover around me i was shaking from how cold i felt i didnt even want to get up. So everything to the extreme, totally sucks.

Yesterday when the nurse called me to confirm if i had picked up the Elavil i told her i was scared to try again after my awful experience with the clonidine. She said, unfortunately this is the only way you will find out if something works is to try. I know she is right this is why i tried the clonidine but for now im just still trying to get through the day w/o the clonidine.

My face is flushing more than b/4 the clonidine i pray it gets better. It's funny how we think we are so bad with the rosacea then we try something and its worse and then we pray to at least go back to the way it was b/4 which i thought was really bad.

yes my blood pressure went down one day 75/59 also too low. This pill is so tiny and i was taking half of the pill hard to imagine how really powerful this tiny pill is.

Well our search continues...

[BMBM]

Originally Posted by Alba

Thanks BMBM for your suggestion and input.

My primary doctor is a sweetheart so if i mention the monoxide im sure he will give it to me but he always has told me that all these medicines are so dangerous but that if our rosacea is affecting our every day so serverely that i guess we have no other choice but to take a chance.

Please keep us updated on the monoxidine. See on the clonidine i noticed a positive reaction on the rosacea from the very 1st dose but side effects horrible and wondering how much damage this could do to me in the future.

Is monoxidine the same as clonidine in reference to the rebound flushing? From what i experience the last night at 4am it must have been a rebound flush which lasted 3 hours extremely the most painful flush ever to even include my feet. From this i think i probably would have to been on a higher dose which would mean more possibitly of more severe side effects. also the feeling of being so extremely cold, freezing to feel those extreme chills not good either.

God help us all please...

Alba

Hi Alba

Both Clonidine and Moxonidine are antihypertensives so work in similar ways. I did have rebound flushing with Clonidine and initially when I started taking it I believe it made my flushes worse although they went back to 'normal' after a while.

I've not had any rebound flushing with Moxonidine and none of the side effects of Clonidine - drowsiness, dry mouth, sedation. I believe this is because Moxonidine targets different brain receptors than Clonidine. I'm still unsure if it's improving my flushing as in the past 3 weeks I've not had too many of my triggers.

I've just checked and Moxonidine is a very safe drug - it has had over 70 clinical trials and the safety profile is excellent. It will obviously lower your blood pressure (as will Clonidine) so getting that tested regularly would be a good idea.

Regards

BMBM

[nataljaoo]

Hi Alba,
I'm sorry about your clonidine ordeal. Clonidine gives side-effects as well, but less than the remeron for most and they will pass for most. It can make you dizzy, spaced out, sleepy and light haded. This is partly because it is a blood pressure lowering med, so withy normal blood pressure yours can go down too much. But, your body will most likely adaot to it in time. For me it took some time, I would say at least a month, before the sleepyness wore off. But it was worth it for me. My bp is now normal, even on two blood pressure lowering meds. And I don't have any other side-effects any more.
With clonidine you always should taper it off when you want to stop. Immediate discontinuing gives rebound flushing...

I tried amitryptiline (Elavil) as well and it made my flushing much worse. be aware, one of the side-effects can actually be facial flushing. It can help some perhaps, but I don't know about it's effect for rosacea. Remeron actually does have a proven possitive effect on facial flushing, it is registered as a med for menopausal hot flashes, which are basically very much related to our type of flushing.
But, remeron has the same tiring and dizzy making side-effects once you start it. It will wear off in time thoug. It will also most likely make you more hungry or gain some weight (like most anti-depressants, but remeron is infamous for it). Overall it has been manageable for me and well worth whie, since my facial flushing has become manageable for me with it. Remeron works also as an antihistamine (Good for us rosaceans) and has anti-inflammatory actions (also good for rosaceans).

Keep in mind that everything you will try can have side-effects... Lasers do, IPL does, medication does. Most will wear off as your body adjusts. Always be aware of how your body responses, but most side-effects are temporary and unharmful. I don't knwo anything about Elavil and remeron being dangerous meds, with regard to side-effects. They are widely used by many, many patients. Don't read all the side-effects frantically I would say (although you should always be well informed of course); even asperin or paracetamol comes with a list of possible side-effects. Especially the US pharmacies are writing down every side-effect that has been mentioned by every person, because of fears of medical or insurance claims...
Good luck,
Natalja

[phlika29]

Hi alba

I also had a bad experience with both clonidine and moxonidine. The worst bit was the rebound flushing which I seemed to get within a few hours of taking the medication. it was strange because I suffered worse flushing on the rebound than I would normally get.

For the laset few years I have just stuck with the timed release propanolol, no rebounds and no extreme tiredness.