Does anybody have experience with clonidine...

Does anybody have experience with clonidine?

Clonidine has been my wonder drug. 0.1 mg twice a day has greatly reduced the number, frequency, and severity of my flares-- with no side effects. It has been especially helpful for my facial EM.

What type of doc prescribed it? How long after taking it did you notice a difference? How long have you been taking it?

I might try it. Someone else on here raved about it the other day. Said it was a silver bullet of sorts (my words). laura0: Is your EM primary, or secondary?

It was first prescribed by the dermatology team that diagnosed my EM. Now my primary care doc prescribes it. I've been on it two years now. It took a couple days to start being really effective, if I recall correctly

bob548, my EM is secondary to a mild autoimmune disease.

laura0 Which disease is it, if you don't mind sharing? I'm looking for things to research.?

Extended release?

bob548 it's UCTD-- undifferentiated connective tissue disease.

tammi9 I take the regular pills.

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One person I personally know with EM who found it life changing.

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That would be me lol. In combination with nortriptyline that I was already on, it put my EM into remission. But recently it started coming back again so I increased clonidine again and it's gone again. Nervous about how long it will last but also enjoying it while it does! Also on a concoction of other meds due to hyperadrenergic POTS. The hyperadrenergic pots was actually the reason I went on clonidine....was totally shocked when it got the EM under control. I personally found that the pills work well but the patches did not work well...duno why,..and I developed a skin allergy to them after 8 weeks anyway

andrea9, Can I ask what was the severity of your EM before you started taking clonidine? and after how long did you start feeling any change with your pain..?

adit99 unfortunately my improvement on clonidine was short-lived and I've worsened again over time and now having flares in places I didn't have them in before. From what I've heard, it's only temporarily helped others too. Wish I had better news to share. From memory the improvement was quite quick, like within a week

andrea9 Oh I am sorry! Did you find other meds that can help you?

andrea9 Yes it is... I can understand you... which meds did you try?

andrea9 I am trying Cream of amitriptyline and lidocaine too but meanwhile havent notice any cange... thinking of lidocaine infusion.. mexilitine..

adit99 I've thought about that too, although it's not an easy treatment to go through, even though it's made a big difference to some people

andrea9 Why not easy? bc the side effect while the infusions...?

adit99 yeah cause I'm pretty sure they have to put it up to your toxic dose and then taper it off

I would take the risk.... are you on constant pain..?

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That's great that it's worked so well for you! My family doctor prescribed it yesterday I haven't filled the script yet though because I've recently come off all meds (for another condition) due to side effects. Anybody experience side effects?

Zero side effects for me. I think the most common one is dizziness/light-headedness.

I sometimes experience side effects to drugs initially, but the side effects often go away within a couple of weeks. I would only stop the drug if side effects were severe.....which has happened to me a couple of times. I had long term side effects to one drug fludrocortisone and had to come off it. But fine on all my current Meds. Good luck, I hope it helps you!!!

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Made me too zooped up and as I recall you need higher and higher dosing as time goes by.

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robert72878, that has not been the case for me. I've been on 0.1mg for over 2 years, and it continues to work well.

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I've been on it for many years - 10 or more. It was the. First med I used andv it helped some. Then I added Gabapentin and have increased it. When I stopped clonidine I noticed a difference and restarted the clonidine -.1 mg twice daily.

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I tend to have low blood pressure. I would assume it's not recommended for those with low blood pressure?

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It can lower BP, yes. That said, I have low-ish BP (around 90/70 usually), and I could take the low dose of clonidine without a problem. All depends on how your body reacts. There's also a clonidine patch that gives a slower release, which can work for people who get dizzy from the pill.

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Yeah definitely discuss with your doctor Laura. Yeah guess it depends what form of clonidine you take and whether or not your BP gets dangerously low or makes u pass out. Your doctor could hopefully determine if it's suitable for u. I always had high BP because of hyperadrenergic pots, and now on 175 micrograms clonidine tablets per day, my BP sits around 90/70ish. I usually have narrow pulse pressure around 15-20 because of low blood volume from POTS

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I talked to my doctor about it this afternoon and he though it was definitely worth a try. Starting it tonight!

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Yay good luck Betsy! I really hope it helps! I wish it was a one size fits all help everyone kind of thing, but we are all different. Fingers crossed its a good one for u!

Thank you!! Here's hoping!! I never would have known about it without this group.....while I hate that so many of us suffer with this horrific disease, I am grateful for such a wonderful group of people that share their knowledge and journey.

Totally agree, we have a great little community going on here ? let us know how u get on. I had side effects for first couple of weeks on clonidine but then they went away

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