Hi Dejavu,

I'm so happy that your clonodine is working for your allodynia.

How much of a dose are you on please?

These bee stings are unbearable !!!

Thanks


vintagewine

Hi Vintagewine,

My sincere apologies for a delay in response.
I have been needing more rest and have not been online.

I am currently getting good pain relief with clonidine 0.1 mg 3 times daily. If needed and tolerated, a doctor might prescribe more. We are going with the least amount necessary for adequate pain control (which is individualized, of course).

I hope you've already contacted your doctor for assistance.

Please let us know how you are doing?

Warmly,
DejaVu

A Warm Hello to All,

Thanks so much to each of you for your assistance and support.

It has taken me a few days to get used to the clonidine side-effects.

In addition, we have started the Lovenox injections for the clotting issues. This is an effort to prevent the superficial vein thrombosis from progressing to a deep vein thrombosis. Risk factors for a DVT are high right now. I am also still in an air cast on the same leg/foot as the thrombosis.

I am experiencing additional side-effects from adding the Lovenox injections.
I am needing more rest. Additional sleepiness has been a major side-effect of both meds recently added.

I also continue with magnesium lotion/magnesium chloride spray/Epsom salt soaks. I also use topical lidocaine when needed. I am needing less lidocaine with the increased clonidine.

I have not secured prescribed topical meds yet. My doctors are urging me to also consider some form of a topical cannabinoid.

I continue with follow-up appointments. I will know more about my mid-foot injury next week. I will have another ultrasound to check on the thrombosis in three weeks.

I hope to be around more soon. I am trying to get used to side-effects and we are trying to complete projects before winter sets in here.

You each have my admiration and my deepest gratitude.



Love All Around,

DejaVu

Thanks for keeping us updated DejaVu.

Glad to hear you're getting some of your symptoms under control and they seem to be monitoring things well. Hope the side effects from the new meds aren't too rough.

Thinking of you and hoping you're getting lots of those much needed zzzzzzz's

Take care - we'll look forward to seeing you back when you're able & ready.

cheers bluesfan

Hi Bluesfan,

Thanks for your post.
Thanks to everyone -- I see your names noted on the bottom of my last post.

The clonidine is getting to be too much. I have realized the heavy side-effects are from clonidine (as opposed to other meds). I am having debilitating side-effects. I am cutting back on the dose, slowly.

Unfortunately, the pain is flooding in quickly. I will be asking for a different med, likely in the same drug class, first thing in the morning will be hoping my request will be granted before the end of the work day, as it will be Friday. I need to get through the weekend and at least until I see rheumatology, neurology and orthopedics next week. (I am supposed to get my topical med prescriptions next week.)

I hope all is well with you, Bluesfan.
Love to All,
DejaVu

You might consider giving your system a couple of weeks to adjust to the clonidine.

Thanks, LITLOVE.

I would likely give the same advice. It takes time to get used to meds, some take longer than others. However, in this case, I am experiencing very severe side-effects and am not at all comfortable with continuing this medication. It's severe enough I am choosing the pain over the med as I write.

I am glad to hear from you and hope all is well with you, LITLOVE.


DejaVu

Much to my delight, my rheumatologist's office called me yesterday to see if I could come in within the hour, as they'd had a cancellation. Her office is nearby and I was thrilled to get in earlier than next week.

We'd spent a lot of time looking at other options (to replace clonidine).
She was looking at the receptors involved and the meds available.

This is further complicated by the fact that she knows I tend to have many drug reactions/side-effects. She is going away for a couple of weeks and will not be in town to follow-up in person should I have difficulties.

Most of my doctors are pushing for me to try cannabinoids. They are hoping doing so will be helpful. In this state, I will have to wait at least 30 days for a case review, after the review panel has received all pertinent info from my primary care doctor. I will likely try some form of this, hopefully a topical. I have such major reactions to many types of substances, including plants/herbs, etc.

The doctors think we don't have many options which will not create intense side-effects in my case. I certainly understand, as I do have many med intolerances.

The bottom line is: I can use clonidine at various doses, tweaking the dose while hoping to find some relief without overwhelming side-effects. I can substitute tizanidine for the clonidine. She states it's her goal to get me through this way until the approval comes through for trying cannabinoids.

They also feel strongly I should not attempt any compounded topical until the thrombosis in my leg is cleared up with Lovenox, until Othopedics has further evaluated my recent foot injury, and until Neurology has completed an updated consult on "all things neuro."

I have a consult with Neurology within a few days. I will meet my new Resident. Docs want to know what Neuro thinks of ketamine use.

(I should add: I have more than one Neuro diagnosis. Doctors want to hear from Neurology, as I have had severe exacerbations of a neuromuscular condition, which has, at its worst, left me unable to use my hands, my feet, etc. I had to be fed, dressed, had to have someone adjust my pillows, etc. We don't want to go there again, if we can help it. I am having increased symptoms/signs of this condition at this point. I think it's the overall increase in stress causing this to flare.)

I will see Orthopedics in a few days, as well.

I had slowly tapered the clonidine and was on super low dose when I saw the rheumatologist yesterday. Pain was increasing by the hour, flooding back in.

By early evening, I was in so much pain I simply had to take more clonidine.
I was not able to sleep all night due to the severity of pain.

It looks like I will have to try to live with the debilitating side-effects.
It clouds my thinking and affects my mood in a major way.
While I have found tizanidine helpful for spasticity in the past, it has not been as helpful with this type of pain.

When the clonidine starts to wash out of my system, the pain is too severe. I simply cannot tolerate the intense burning pain. I feel like my whole body has been set on fire. My feet and lower legs are the most painful; however, during the clonidine taper, my whole body felt like it was immersed in a raging fire. I am still on the edge of that type of pain now. I had gotten significant pain relief, overall, with several days of clonidine use.

If I disappear again for a few days, you will know where I am. Zzzzzzz!

Thanks to each of you for sharing your knowledge, your experiences and for showing authentic compassion. Your support means a lot to me.

I hope everyone is enjoying the weekend.



DejaVu

I would think one clonidine a day would be doable.
Its half life is 14-16 hrs. What you were given was 3 times a day?

You could try 1/2 of a 0.1 mg twice a day. That is what the ADHD kids typically get. Topically in a transdermal gel, there would be minimal systemic effects.

I took clonidine for a while in low dose for blood pressure. The only side effect I developed was a manic type reaction after a month. I couldn't sleep at all and that made me so hyper I was forced to stop it.

Hi mrsD,

Yes, it was originally prescribed at 0.1 mg three times a day.
I had to quickly decrease that amount.

When I had written about side-effects, I had been at 0.1 mg at night and one-half that dose in the AM. A dose every 12 hours.

It may be my system had more in it for a few days, even though I had decreased the dose?

I had also read the clonidine used for ADHD is a specific brand? Maybe because the specific brand is a topical, as you have mentioned?

I had started back at 0.1 mg because I needed relief asap.
I will cut back once I have relief on a consistent basis. I will then try half that dose. I cannot wait to get enough back into my system.

Interestingly, clonidine helped significantly with the pain, with the drenching sweats and the rapid heart beat which had accompanied the pain.

My resting heart rate was 112 when I was at the doctor's office yesterday. high! My BP was fine 117/68, which is my usual BP. (On clonidine, my resting heart rate is 62.)

Thanks again, I truly appreciate you and your generosity of spirit.



DejaVu