Hi,

I would like to know if some of you, RSD pain patients, use clonidine patches for their RSD. If yes, what is the role of these patches? Pain control? Something else? Thanks for your information.

P.S. Clonidine patches, called Catapress in the USA, are usually used against hypertension, but they might have one or several off-label uses for one symptom or another of RSD.

[firegirl]

I was prescribed Clonidine during the 1st year that I got RSD. It is supposed to calm down your nervous system. I had to discontinue use for a few reasons. First, my blood pressure is normally around 90/60.... since Clonidine is a med designed to lower your blood pressure.....it lowered my bp way too low. Also, I was using the patches & I was allergic to the adhesive. It really irritated my skin & itched very bad. So, the patch was always on my mid back. I would wake up in the night & had ripped it off while I was sleeping. It would be stuck anywhere from in my hair, on the bed sheets, to on my boyfriends arm hahahaha!!!! Anyways, it didnt help for me & I couldnt take it, but maybe it will help others. I am about to have to take it very temporarily. I am switching pain meds & they are giving it to me for the detox/withdrawal process. Hope this helps & it works for you!!

[nyt2]

Clonidine is usually used for high blood pressure but the mechanism of action that is believed to help in pain control is different than for blood pressure control. What is thought to happen is clonidine binds in the brainstem to cells with alpha2-receptors. This binding stops the influx of calcium into the cell which in turns stops the release of the neurotransmittor norepinephrine.
Decreasing levels of norepineprine lowers the activity of the sympathetic nervous. As you know individuals with CRPS/RSD have over active sympathetic nervous syptoms and so this drug decreases the activity of the nervous system and thus pain.

I tried it but it dropped my blood pressure too much. If you use this medication as a patch and find it helpful, if you ever need an MRI you need to remove the patch for the test as the backing of the patch has metal in it.

[gramE]

Maybe you could try voltaren gel. I take the Clonidine orally, but my BP was high too.

[firegirl]

Originally Posted by gramE

Maybe you could try voltaren gel. I take the Clonidine orally, but my BP was high too.

Did Voltaren gel work for you? I tried it, but it didnt help. Applying the gel was very painful as my RSD areas are so sensitive. Besides, I have RSD in so many areas that I would go through a whole tube in one use. hahaha!!!

[gramE]

Dear Firegirl,
My feet, bottom and top are my most difficult areas to treat. I massage to reduce sensitivity, but yes the gel stings a bit in the beginning and is painful moreso behind and between my toes, but I do think I get some relief. Especially if I'm going to wear some shoes/sandals. I don't like taking pain meds as it isn't my brain that hurts and that is about the only place the pain meds impact. I do take them, but sometimes I just use the gel. For me the issue is that it takes soooooo long to dry.

[yiisd]

I took Clonidine orally & had no problems.
As far as I'm concerned, if your doctor feels
It is safe for. Your blood pressure (not too Low)
I'd go for it.
For me the Voltaren was a disaster. It always
Amazes me how doctors want you to "Rub" something
On the most painful spot of your body.
In my opinion Clonidine Orally ( so the dosage
Can be adjusted easily) - YES ...... Voltaren Gel/Cream
- NO !
I've had RSD 8.5 years and tried MANY
medications.

L

Originally Posted by kittycapucine1974

Hi,

I would like to know if some of you, RSD pain patients, use clonidine patches for their RSD. If yes, what is the role of these patches? Pain control? Something else? Thanks for your information.

P.S. Clonidine patches, called Catapress in the USA, are usually used against hypertension, but they might have one or several off-label uses for one symptom or another of RSD.

Hi, everybody:

I think I want, if the Neuro Talk Support Group moderators allow it, to change my screen name to icycoldgirl because I am really, really sick and tired of this icy cold feeling running through my veins and arteries. As time goes by, it is getting more and more difficult to live with this feeling. I feel sooo sad and desperate, especially when I have this icy cold feeling. I do not know if you will believe me, but I feel I need to tell you that I also have vasospasms (is this their name?) in the center of my body, right between my two breasts. I did not think this was possible or I must be crazy. The feeling (vasospasms?) I have in the center of my body is much, much worse than my icy cold feeling. It feels like insects are running inside the veins and arteries of the center of my body. It literally drives me crazy: I am lying on my bed in such a way, writhing as if to shake the insects off of my veins and arteries, which is of course impossible, because these are not real insects but just a feeling, a horrible feeling.

I was hoping Catapress (clonidine) patches would help fight this. If this medication does not help, then what will!? Aren’t there ANY medications for this icy cold feeling and for this insect feeling, which probably have the same cause(s) and treatment(s)? If there are no treatments, what will be left for me? Death? I cannot abandon my two-year-old baby boy but, on the other hand, I feel like this full body RSD really is preventing me from being the good mother I would like to be for my son.

Firegirl, I do not have high blood pressure and I do not have low blood pressure either. I would so much like to try Catapress, hoping it is the solution to the problems mentioned above, but I am also afraid Catapress will lower my blood pressure too much and I will pass out, for example from orthostatic hypotension.

I have no big problems with the adhesive of Duragesic (apart from bad itchiness sometimes), but Catapress might use a different adhesive, which my skin will not tolerate. I use tape on all four sides of all the medications that come in patch form because I do not want them to come off and get stuck on my boyfriend (Ha! Ha! A police officer! I imagine his reaction!) or worse, on my baby, whose body is much too small to stand this kind of medication without dying (Duragesic or Catapress). Of course, I could also use tape on all four sides of my Catapress patch to keep it from coming off.

Firegirl, how will Catapress help you if you use it only very temporarily? If I understand right, you are not using it for pain control, but for the control of the withdrawal symptoms from some other medication?

Nyt2, you said decreasing levels of norepinephrine would lower the activity of the sympathetic nervous system. I sure hope Catapress will help with the icy cold feeling and with the insect feeling (described in the first paragraph), if both these feelings are caused by an overactive sympathetic nervous system.

Quote: “If you use this medication as a patch and find it helpful, if you ever need an MRI you need to remove the patch for the test as the backing of the patch has metal in it.” Once removed, does the Catapress patch stick again or does a new patch have to be used? Is there not a way to shield or protect the Catapress patch from the MRI rays? I shielded my fentanyl patch (Duragesic) with something quite thick (lead?), which the radiologist gave me and which I put over the arm that was wearing the fentanyl patch. I was having a knee X-ray and a neck X-ray. I might have other knee MRIs, but the “shield system” used with the X-ray machine probably would not work with the MRI machine.

gramE, I tried the Voltaren gel, but it did not help much. All the doctors claimed it was because topical creams or gels do not penetrate deep enough inside the body to work. They claim Voltaren only helps in cases where the pain is near the skin surface.

The clonidine pills you took were for the treatment of hypertension, not for the treatment of anything related to RSD? Even if this were the case, your high blood pressure would sort of prevent you from passing out because of sudden low blood pressure caused by clonidine.

yiisd, did you have high blood pressure for the clonidine not to cause your blood pressure to drop to a point where you would pass out? If you have normal blood pressure, you are lucky you did not have to suffer from sudden orthostatic hypotension or other type of hypotension. I hope I will be as lucky as you and that these feelings of icy cold and of insects running through my veins and arteries will stop.

You say the dosage of clonidine taken orally can be adjusted easily. What about the clonidine patches? Do the doctors not have available to them the clonidine patches in different dosages, to be adjusted as needed, the same way fentanyl patches are available in different dosages for easier adjustment to the patient’s needs?

Thank you all for the interesting information you gave me, which I will share with my doctors.

[firegirl]

Originally Posted by kittycapucine1974

Hi, everybody:

I think I want, if the Neuro Talk Support Group moderators allow it, to change my screen name to icycoldgirl because I am really, really sick and tired of this icy cold feeling running through my veins and arteries. As time goes by, it is getting more and more difficult to live with this feeling. I feel sooo sad and desperate, especially when I have this icy cold feeling. I do not know if you will believe me, but I feel I need to tell you that I also have vasospasms (is this their name?) in the center of my body, right between my two breasts. I did not think this was possible or I must be crazy. The feeling (vasospasms?) I have in the center of my body is much, much worse than my icy cold feeling. It feels like insects are running inside the veins and arteries of the center of my body. It literally drives me crazy: I am lying on my bed in such a way, writhing as if to shake the insects off of my veins and arteries, which is of course impossible, because these are not real insects but just a feeling, a horrible feeling.

I was hoping Catapress (clonidine) patches would help fight this. If this medication does not help, then what will!? Aren’t there ANY medications for this icy cold feeling and for this insect feeling, which probably have the same cause(s) and treatment(s)? If there are no treatments, what will be left for me? Death? I cannot abandon my two-year-old baby boy but, on the other hand, I feel like this full body RSD really is preventing me from being the good mother I would like to be for my son.

Firegirl, I do not have high blood pressure and I do not have low blood pressure either. I would so much like to try Catapress, hoping it is the solution to the problems mentioned above, but I am also afraid Catapress will lower my blood pressure too much and I will pass out, for example from orthostatic hypotension.

I have no big problems with the adhesive of Duragesic (apart from bad itchiness sometimes), but Catapress might use a different adhesive, which my skin will not tolerate. I use tape on all four sides of all the medications that come in patch form because I do not want them to come off and get stuck on my boyfriend (Ha! Ha! A police officer! I imagine his reaction!) or worse, on my baby, whose body is much too small to stand this kind of medication without dying (Duragesic or Catapress). Of course, I could also use tape on all four sides of my Catapress patch to keep it from coming off.

Firegirl, how will Catapress help you if you use it only very temporarily? If I understand right, you are not using it for pain control, but for the control of the withdrawal symptoms from some other medication?

Nyt2, you said decreasing levels of norepinephrine would lower the activity of the sympathetic nervous system. I sure hope Catapress will help with the icy cold feeling and with the insect feeling (described in the first paragraph), if both these feelings are caused by an overactive sympathetic nervous system.

Quote: “If you use this medication as a patch and find it helpful, if you ever need an MRI you need to remove the patch for the test as the backing of the patch has metal in it.” Once removed, does the Catapress patch stick again or does a new patch have to be used? Is there not a way to shield or protect the Catapress patch from the MRI rays? I shielded my fentanyl patch (Duragesic) with something quite thick (lead?), which the radiologist gave me and which I put over the arm that was wearing the fentanyl patch. I was having a knee X-ray and a neck X-ray. I might have other knee MRIs, but the “shield system” used with the X-ray machine probably would not work with the MRI machine.

gramE, I tried the Voltaren gel, but it did not help much. All the doctors claimed it was because topical creams or gels do not penetrate deep enough inside the body to work. They claim Voltaren only helps in cases where the pain is near the skin surface.

The clonidine pills you took were for the treatment of hypertension, not for the treatment of anything related to RSD? Even if this were the case, your high blood pressure would sort of prevent you from passing out because of sudden low blood pressure caused by clonidine.

yiisd, did you have high blood pressure for the clonidine not to cause your blood pressure to drop to a point where you would pass out? If you have normal blood pressure, you are lucky you did not have to suffer from sudden orthostatic hypotension or other type of hypotension. I hope I will be as lucky as you and that these feelings of icy cold and of insects running through my veins and arteries will stop.

You say the dosage of clonidine taken orally can be adjusted easily. What about the clonidine patches? Do the doctors not have available to them the clonidine patches in different dosages, to be adjusted as needed, the same way fentanyl patches are available in different dosages for easier adjustment to the patient’s needs?

Thank you all for the interesting information you gave me, which I will share with my doctors.

When I took the Catapres patches, they came with a clear cover that covered the patch to help it stay on....didnt help me but maybe does for others. I am not exactly sure how the Catapres works for detox/withdrawals. My doctor recommended it. I've also read up on alot of detox centers & have talked to people I know who have detoxed from substances. Apparently it is very widely used for this purpose and sometimes given with Ativn. It is supposed to kind of just chill out your nervous system when it is going crazy........I guess kinda like RSD hhmmmm???? Anyways, hope it works for you. THat would be so great if it does!!!!

Hi, firegirl:

How large is the Catapress patch? I guess it depends on the dosage of clonidine contained in the patch. It is the same thing with the fentanyl patches. Feel free to let me know if I am wrong.

If the Catapress patches I buy come with the clear cover you mentioned, I will use them. Maybe the cardiologist will not prescribe clonidine patches, but clonidine pills, because it would then be easier for him to titrate the dosage. Maybe he will not prescribe clonidine or anything at all for the feeling of icy cold running through my veins and arteries and for the feeling of insects crawling through my veins and arteries in the center of my body (I think this is near the area of the sternum). In this case, I will have two options:

1) Order the clonidine (patches or pills) on the Internet (but I am afraid the French Polynesian customs will seize them or that the web site, wherever it is, will not be willing to send them to French Polynesia, where I am right now)

2) Since I cannot stand anymore the two feelings described above (icy cold and insects), *admin edit*

Anyway, if my cardiologist does not prescribe anything for me to help with the feelings of icy cold and insects described above, I will cry and cry so much I could fill a swimming pool with all my tears and drown myself in it. I have a bad feeling for tomorrow's appointment with my cardiologist. Something is not going to go right with this appointment.

Quote: "It is supposed to kind of just chill out your nervous system when it is going crazy... I guess kinda like RSD hhmmmm????" Do you have any links to documents that prove clonidine does help for RSD? I could show these documents to my cardiologist tomorrow morning.

Does anyone have any advice on how I should handle this appointment and convince the cardiologist to prescribe the clonidine (patches or pills) for me?

Thanks for your information and kind words. Right now, I am just going to cry because I am sick and tired of living like that, with these feelings of icy cold and insects. I know there are people in worse situations than mine, but knowing this does not help me.