Topical Meds?
 

Hi,

Although I read this forum often, I rarely post in this forum.

I have had episodes of what doctors have diagnosed as "RSD/CRPS" in the past. I have had episodes in response to surgeries (an ulnar nerve surgery and a sural nerve biopsy) and also in response to an injured achilles tendon.
I am very afraid of ever needing any surgery in the future, as it becomes quite a mess, with a flare and severe pain for years thereafter.

(I also have advanced neuropathy in both feet.)

I have a recent injury to a foot. I am told this is a mid-foot sprain or stress fracture. We are waiting for swelling to calm down, as mid-foot injuries can be difficult to fully diagnose for a few weeks.

It looks/feels like I am having another flare, now in both feet again.

I did not have much help with my prior episodes. Lots of pain meds yet nobody treating me was well-versed in treating this. I did a lot of work on my own. I am very lucky I have done as well as I have done.

Feet and lower legs are swollen. Feet are red, one is purple and red. It feels like my feet and lower legs are sitting in a huge fire. I have severe spasms in my toes and feet. Sometimes, it feels like my feet/ankles are being crushed.
(I have not been able to ice my feet since the initial episodes, years ago. I have to keep them warm.)

As you know, the pain is excruciating. No pain med, no AED med touches this pain. One leg has superficial thrombosis from calf down to top of foot.
(We have checked twice for DVTs and find none.)

The examinations have been excruciating! In some cases, one person had to hold my leg so another could lightly touch my leg/foot. Everyone was shocked with the degree of pain I was in upon examination.
it's all spreading through my body. Now that I am in a flare, just the pressure of a blood pressure cuff sends me through the roof. That pain lingers for days, just from one BP reading. My upper limbs are not turning colors, although they are becoming increasingly painful.

I have been doing lots of Epsom salt soaks. Lots of magnesium lotion/spray. I have found topical Soma helpful. (I also take oral pain meds.)

I have been researching topical approaches. I am very intolerant of meds.

In the past, I have used a bupivicaine/ketoprofen topical.

As I am looking up current topicals used, I see some prescribe a topical mix with a high percentage of ketamine or a high percentage of DSMO.

Has anyone found specific topicals helpful?

Thanks so much for reading.
Any response is deeply appreciated.

:grouphug:
DejaVu

If you have swelling, I highly recommend Morton's Epsom Salt lotion. It's available at Walgreen's or Amazon if you have Prime, and maybe Walmart. I've been surprised how well it works and my Mom also loves it (she doesn't have RSD).

Oh, I wish I could say I could help you, but I have read several of your posts that you have left over the years and I would have to say, you certainly know a lot more than I do about this whole mess. I have not yet had a chance to try using any topicals, so there is not much that I can help you with. I do remember my original surgeon trying to offer a topical compounded lidocaine/ketamine creme for my, at the time artritis, but at the time I knew nothing about CRPS. I did not think it would help back then and my insurance would not cover it either. If I only had the opportunity to try it again.

For the most part, I just wanted to take the opportunity to say Hi! I am pretty sure that I remember others talking about topicals. I am sure someone will give their experiences here eventually.
:hug:
Alaina

Hi Lit Love,

Thank you for your suggestion. It's a very important one!
I have been using the Epsom salts topical lotion and the chloride spray. I have also been soaking in the Epsom salts.
I am so glad you have mentioned this though, as it cannot be mentioned enough! :hug:

Hi PurpleFoot721,
Oh, you'd be surprised at what I have likely forgotten, even if I did post about something at one time. Lol. ;) It's a part of the mess.
I have found that doctors will often prescribe topical meds IF I bring up the topic and bring the information and/or IF I have spoken with the compounding pharmacist first. My rheumatologist is more open to this and tends to research it herself. Yet, she also gets very busy in her private solo practice and is helped along if I have some info ready for her.

I am surprised with how well topical Soma has worked. :)

The commercial compounding usually uses a PLO gel which is supposed to help to transport the medication more deeply. I do not like paying the high prices of compounded topicals.

I have found I can negotiate with the local compounding pharmacist, as a part of his pricing equation is based upon getting his mill messed up with a certain percentage or mix of medications and he has to take time to clean the mill prior to making up the next prescription. I had a talk with him and he could make me twice as much (200%) in volume for only 120% of the cost, if I would take twice as much at a time. That helps with the cost.

I also look around on the internet for any topical percentages and sometimes make my own with an OTC cream. The delivery system is not as good, for sure. I urge caution with this. I also watch herbalists make various topicals on youtube, etc.

I think you may find you can still access the ketamine cream if you request it.
It's hard on everyone that insurance does not cover this. It's such a great way to treat pain and inflammation when people have difficulties with meds.

I swear my body does not want another med, no matter what it is. I have always been sensitive to meds and it seems I am only getting more sensitive to meds with time and med exposures.

I am glad you've jumped in to say "hi!"
Welcome to NeuroTalk!
:hug:
DejaVu

oh I am sorry that you have such pain.
you poor thing...
((((HUGS))))
bizi

Hi Bizi!:)

Thanks for checking in and commenting.
I have missed you while I have been away.
:hug:
DejaVu

Thanks for any responses!
 

I am trying to catch up a bit on the forum...

Yet burning pain is just spreading everywhere. Upper limbs too now, especially the arm that had surgery and prior CRPS. :(

I have an appointment in the late morning and hope to have my final ideas together for a potential topical mix. I may need to modify the formula over time, yet I need to get something started asap.

I will check back in.

:grouphug:

Darn it! You know I'm fond of you but I just don't want to see you over here for this! i am so sorry you aren't just dropping in to say hi. :(

I am going to suggest a simple med, prednisone. It is often overlooked but is recommended several places, including practice guidelines given by bigwig Dr. Stanton-hicks in 2014. I ended up taking a couple rounds of it early on and it made a big difference in swelling, pain and temp changes. Guidelines call for 10mg three times daily for ten days to three weeks depending on response. That is not a terribly big dose and while steroids do have side effects (and are no good for diabetics if that is a problem) they do have their place.

Start hitting 500 mg of Vit C daily. DMSO is good, but hard to find in the right percentage. I ordered online and cut it with aloe Vera to get it to a percentage that didn't irritate my skin.

What are they doing with your foot? Are you in a boot? Surgical shoe? assisted weight-bearing is recommended for stress fracture but immobilization is bad for CRPS. If you are permitted keep that foot moving with whatever alphabet spelling and ankle circles you can tolerate. Get in a pool and gently swish with a weight belt.

I use a topical of ketoprofen, gabapentin and ketamine that I like. I order lidocaine 4% separately because I don't always want it.

I find it hopeful you have beat back this kind of reaction before. My physical medicine doc in Houston who I am so happy with once told me they have some patients who react this way every time they have surgery. He said he and the other docs start PT and pain control, wait quietly for a few months and hope that it will go away. He said it typically does.

I hope you get relief soon!
Sending hugs and healing love, :hug:

Thanks, Littlepaw!
 

Hi Littlepaw,

You see, I was subconsciously trying to think of a way to hang out with you and this warm-hearted crowd more often...and see what I have created? Lol.

I am grateful for your response.:D

Interesting about prednisone. You have helped me to recall some of what I had read. Interestingly, I am already on 15 mg a day, and have been for three years. I was trying methotrexate to get off of the prednisone and had not yet tapered the prednisone. MTX can elevate the platelet count, although I had only had two weekly injections before the clotting had showed up. We are not sure of the cause of the clotting at this point. I have a history of antibodies which can also cause clotting, so we are searching for those.

My rheumatologist is in charge of my prednisone, so maybe she will jack up the dose for a few days. I see her in the morning. I can only hope so. It's an interesting strategy and may work. Thanks for mentioning this.

I find I am not retaining information well when I am reading up. I forget more than usual lately and must print out anything I want to recall.

Thanks for the info on DMSO and aloe. Also for the information on the topical mix. It's wise, I feel , to keep some of these separate, as you have done, as sometimes we want a certain component and not others. Smart. :winky:

I am in a boot. I cannot stay immobilized due to the clotting, as well as the CRPS. I am instructed to do no weight bearing yet. I can have the boot off when foot is elevated and the Ortho agrees I can move the ankle when the foot is elevated.

Vit C sounds great.
I have also read some about NAC being used, I need to go back and read again. I am forgetting things I rarely forget. :o

My PCP hasn't been much help thus far. He thinks it's best if people go to a group to talk about their pain. I don't disagree. Yet, if they have a choice of being treated and attending PT or talking about their pain, I think the best choice involves the actual treatment and PT first and foremost. Lol. Our state has new guidelines and has a database overseeing all doctors and patients affiliated with the University and he is not thinking straight. He did order Namenda. I had told him I thought the studies done now show Namenda is too weak and if it works at all, will not work for at least 6 months. He said he thought my info was correct and sent the order into the drug store anyway.:confused:

MSContin, dilaudid, Depakote and soma... just not touching the pain.

Interestingly, topical soma did stop the severe spasms in feet, toes, ankles and calves through the night.

I am having severe drenching sweats. Anyone else having drenching sweats with these flares of severe pain?

Thanks again, Littlepaw! I appreciate your knowledge and your love for all.
:hug:
DejaVu

I am on my phone and linking is tough for me.

But I'd like to suggest Deja that you Google
"Topical clonidine for neuropathic pain".

We've had some discussions about this on the
PN forum here. Dose appears to be 0.1%.
People using this should monitor blood pressure.

I'll look in on this thread when I am
back on my
Computer.
I also second the Vit C suggestion.. Perhaps 1000mg
A day to start... You can reduce to 500mg later.

Thank you, mrsD!
 

Hi mrsD,

Oh, thanks for the clonidine suggestion!
I had read about clonidine and had forgotten already.
My memory is not the best right now. I will write this all down for my appointment.
I will also do a search on clonidine, as you've suggested.

I will talk with the compounding pharmacist, as well, prior to my appointment. It will help to facilitate getting something prescribed tomorrow.

I will increase the vitamin C, pronto.

Thanks so much for suggestions. This is all moving along rapidly. Every test which involved any form of pressure on tissue/nerves made this all worse each time, immediately. I had to have the ultrasound testing and one of the techs was not well-trained and put so much pressure on, I haven't recovered from that ultrasound. (Too much pressure also skews the view and can cause a false reading by the radiologist.) I have gotten to where even the lightest touch is too much now.

I am supposed to wear compression socks for the thrombosis. I have worn them since my last episode with this in my feet/legs. I cannot do it now, it's too painful. I just have to keep my feet up and keep doing ankle pumps and the alphabet.

I am deeply grateful for the suggestions offered.
:grouphug:

I can not stand the compression stockings. My ortho originally prescribed a pair of 20-30 mmhg for me. I tried them twice but found they are impossible to put on without causing a ton of pain. When I was finally able to get them on, I could only wear them for about an hour before I would have to rip them off from them causing excruciating pain.
:hug:
Alaina

Hi Dejavu,

I'm so sorry you are also experiencing being in so much pain. Chronic pain is a beast, isn' it ?!


One of the things I have is allodynia that feels like thousands of bees are stinging my skin in addition to other types of nerve pain.

I use a compound cream four times a day .

Can you speak to your doctor to get a RX for a compound cream with capsaisin, marcaine, lidocaine or bupivocaine and ketamine. Sometimes the doctor will put in topical amitryptyline too in place of one of the other things or in addition to it.

I hope this helps you.

Thank you, Purplefoot and Vintagewine!
 

Hi Alaina!:)

Thanks for sharing your experience with compression stockings. :)
I have been fine with them, for several years now, until this episode of pain and edema. (I have liked the open-toed style.)

Some compression stockings are made of some materials which just do not go well with profuse sweating. This episode/flare involves extreme sweating. I am constantly changing socks and all clothing.

Thanks again! :hug:


Hi Vintagewine! :)

Yes, chronic pain is quite a challenge. :eek:
I do fairly well with coping until it flares to this degree again.

The severe burning, the crushing pain, etc. Well, you know all too well.;)

You have mentioned allodynia. It's a tough one to deal with, for sure.
I do understand. Exacerbated allodynia is a part of this flare for me, as well.
I think it's difficult to imagine just what you've described until/unless someone has felt it him/herself. I was awake last night, for hours, feeling like my legs/feet were covered in stinging bees, just as you have mentioned.

I appreciate your suggestions for topical meds! :D

We are considering some topical/topical combinations. (Hurry up already!;) When things feel as though they are on fire, I know I don't want to wait longer for some major relief.)

My rheumatologist and primary care are consulting with one another and we will choose a topical formulation or two.

I know the literature often states people do not react as strongly to topical meds; yet, I react very strongly to a topical if it's the wrong one. I have had batches of topicals ruined because a doctor had decided, at the last moment, to include a med I cannot tolerate (serious shortness of breath).

We are trying to make sure we are all on the same page, have considered all med allergies/sensitivities and all potential interactions with oral meds, etc.

Thanks, again, so much for your suggestions!:hug:

Clonidine and topical meds
 

I am deeply grateful to everyone taking the time to respond, sharing knowledge and experiences.

I saw my rheumatologist. She had spent a tremendous amount of time with me, assessing the types of pain, the locations, etc.

She is up-to-date on using magnesium and her first question to me was inquiring if I had been using magnesium and in which ways and how often I had been using magnesium. :D

She feels the recent trauma to my foot, along with flared inflammatory arthritis, is all contributing to the CRPS flare.

Her first inclination is to try clonidine, just as mrsD had suggested. We are trying tablets first. She feels the topical clonidine patches are too caustic. We may try it in a topical cream at some point; yet, it is taking several days or longer to get topicals made up and she wants to get the clonidine started asap.

We have talked about the possibilities for topicals/topical blends.
In the meantime, she will be talking with the compounding pharmacist and with my primary care. I will be meeting with my primary care later this week, as well. He is staying late to see me.

None of this seems like it's happening soon enough when we are in so much pain! I try to remain patient while still pushing for swift movement in the most helpful direction. Both doctors agree, the sooner we get this flare shut down, the better.

The pain gets much worse for me at night, for whatever reason.
Just excruciating. :eek:

Both feet are equally uncomfortable, even though one has recent "trauma."
I keep my feet warm and continue to use the topical magnesium, lidocaine 4%, topical soma, etc. I take another Epsom salts soak just before bedtime.

Thanks again, to each of you, for sharing your knowledge and experiences with me. Thanks, too, to each of you sending personal notes of support. I am so very fortunate and deeply grateful to each of you.

:grouphug:

DejaVu

Oral may not get into the region well. Inflammation stagnates blood flow...so things in the blood may not reach the target.

This is why the magnesium lotion works so well... it gets into places that have poor blood flow.

The transdermal cream may be the best route for the acute phase.

If you take oral for any length of time, you should taper off it carefully when stopping...removal of clonidine causes a spike of high blood pressure, a rebound of sorts.
Also you should monitor your blood pressure daily.

Dejavu

I am glad to hear you had such a good visit with your rheumy. Thank goodness for that! Clonidine might be just the thing. Not only are you increasing circulation but as an alpha blocker it is damping down the adrenoreceptors on your inflamed nerves. Yeah!

I had to wear compression for a long time after my surgeries. They are cumbersome when you feel hot and sweaty. If toeless works for you, you may also like some of the compression athletic sleeves. A lot of them were too tight for my comfort since they are intended for use during exercise. However I LOVED the Zensah calf sleeves. Good with heat, comfy, wash and wear well.

Thanks for the update. I hope you start getting some relief soon. Allodynia is just the pits but it does bring out one's creativity. You should see some of the pillow constructions I came up with to keep air space around my foot in the beginning. My husband had a ball razzing me about my 'fortress'!

Sending hugs and healing love, :hug:

Thank you, mrsD!
 

Hi mrsD,

Thank you for commenting! Your response makes so much sense. The circulation issue is a real one in this type of condition. Additionally, I have been having repeated ultrasounds showing extensive superficial thrombosis in one leg/foot. You make an excellent point!

I think she'd felt this was the fastest way to get clonidine into my system, as it's going to take some time for any topical to be made up. One of the major compounding pharmacies in this area has just closed. All of the business went to the other one. I do know she is considering clonidine topical when we decide upon topicals. (I know she wants to know if I can tolerate clonidine before mixing it into an expensive compounded cream.)

She states clonidine has worked well enough to cancel plans for nerve blocks in a couple of her patients.

We will assist the thrombosis in approx. 2 weeks, if it does not clear up on its own. We are thinking we will use a Low Molecular Weight Heparin if/when we intervene.

Thanks so much for the reminders to monitor my BP!
I will do so while taking clonidine and if/when I taper off the oral clonidine.
I imagine I will be using the topical soon.

I deeply appreciate your assistance, mrsD!

:hug:
DejaVu

Thanks, Littlepaw!
 

Hi Littlepaw,

Thanks for your response.:)

I am pleased my rheumatologist took it all seriously and was ready to move quickly. She does want to coordinate, if possible, with my primary care, as some of this is his to handle. She is more readily available than he is most of the time. She will be away for a conference soon and wants to be sure he is totally up-to-speed and ready to step up should I need anything while she is away. My PCP has agreed to work beyond his usual hours, in order to see me this week. (He is not in private practice. He teaches at the local medical school.) I am thankful this is all coming together.

You had mentioned prednisone and I want to let you know prednisone was a top consideration, along with clonidine. The concern is: I am already on 15 mg a day and the last time we had to raise that dose, my immune system fell drastically. My CD4 count was under 200. The numbers went back to normal once we'd lowered the prednisone dose. In another case, prednisone would be more likely prescribed/increased.

Thanks for the information on the compression sleeves. I have been using sleeves which are knee high. I need the large style made for large calves, as I was an avid athlete for the first part of my life and my calf muscles continue to appear athletic. I am interested in the material of the type you have mentioned and will look them up. Thank you!

Yes, we do have to become a bit creative, don't we? ;)

For some reason, the pain is further exacerbated in the night. I hope to get some better sleep tonight.:)

Thanks so much for your input, as well, Littlepaw. Deeply appreciated.
:hug:
DejaVu

Clonidine
 

I am surprised, yet quite pleased, the first dose of oral clonidine has helped with all pain. Allodynia (whole body) is also much more calm, as well.

I am more sleepy; yet, I may develop a tolerance.
M.D. gave me a schedule for a slow increase.

The whole-body drenching sweats have also calmed down.

Easy does it. ;)

Love and Light to All,
DejaVu

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


:hug:vintagewine

(((((( 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? :hug:

Warmly,
DejaVu

Quick Update
 

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.

:grouphug:

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 :Yawn:

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

cheers bluesfan

Clonidine Side-Effects
 

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!
 

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.

:hug:
DejaVu

Putting Out the Fire
 

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. :D

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.:eek:

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. :)

:grouphug:

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.

Thanks, mrsD!
 

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.

:hug:

DejaVu

Clonidine is recommended for some women in menopause who have that drenching sweating issue.

I never noticed much effect on pain for me back then, but my arthritis was not as severe as it is today. I never used it transdermally.

I might discuss it again at my upcoming yearly physical though.
http://www.medicinenet.com/alternati...shes/page3.htm

Interesting Article, mrsD!
 

Hi mrsD,

Thanks for sharing the interesting article. :)

I am not totally clear if the sweats were related to the pain or not.

Prior to using clonidine, and in addition to this severe episode of neuropathic pain, I also had drenching sweats, my BP was a bit erratic for the first time ever and I was experiencing ongoing and unexplained tachycardia.

I was having drenching sweats, day and night. Clothing soaked repeatedly.

Clonidine did stop those overwhelming sweating episodes and the episodes of tachycardia.
As soon as I tapered the clonidine to "vapors of clonidine," the sweats and the tachycardia had returned.

My PCP had theorized I was entering menopause, in addition to having this flare. It's a viable theory. However, we probably should have checked an FSH. I can call him and have him order an FSH and along with a vitamin D level, which I can see needs an updated check. I have had difficulties keeping my vit D level up with supplementation (D3) and have been told (by my doctors) the daily prednisone interferes with Vitamin D levels.

Another concern/theory may be the onset of POTS? (Tachycardia and sweating)

I see Neurology next week. I will ask what they think about testing for POTS.

Thanks again, mrsD! :D

:hug:

DejaVu

People using opiates often have sweating spells.
Also high dose NSAIDS will do it. And low blood sugar
Attacks.

Interesting situation with the Clonidine. My son had a terrible reaction to it and almost the reverse of what's happened to you by the sound of it. He was on Clonidine when he was little but wasn't on it for all that long. Maybe a few months in total and the exact dose I forget but it was pretty low and was a bedtime dose only. It used to be a first line medication in children who had severe tics plus he had migraines, sleep issues and suspected ADHD at that time. The Doctor was trying to see if it would help multiple problems.

He had a terrible time on it. He was so pale and he perspired all the time. His skin was cold and clammy and was very tired all the time even though the dose was night time dose only. He had to be weaned off it slowly. It didn't help any of his symptoms at all. In fact, I think it made his BP wayyy too low.

I hope you get some relief DejaVu. I totally understand that this is prescribed for a totally different issue for you, but just wanted to tell you about our experience.

Thanks!
Interestingly, I have been on opiates for over 13 years. I have kept the baseline of MS Contin the same or less. I have increased the dilaudid frequency.

Once I have had a few days of clonidine, I can taper the dilaudid dose down and go back to using it more like a "prn" med, which is was meant to be.

We will see what happens with the sweats, it's looking like clonidine has gone to work on them again, as they are less intrusive.

I am more concerned about the tachycardia which keeps showing up. It was documented in the ER and in office visits.
My thyroid labs are fine. Clonidine seems to help the tachycardia, as well.

Thanks again, mrsD.

:hug:
DejaVu

Thanks, Lara!
 

Hi Lara,

Thanks so much for sharing. :)

I am sorry your son has had so many challenges. Must have been very concerning to him and to you, as I know you are a very involved and conscientious mom.

Side-effects and/or drug reactions occur no matter the reason they were prescribed. Thus, your son's reaction to the med is pertinent, of course.

Clonidine does make me very tired. In all fairness, I must mention I am adding clonidine to a mix which I find fatiguing as it is. I take opiates, Depakote, prednisone as the major daily meds. I am not sure just how much Lovenox is also playing into these side-effects. Lovenox was introduced shortly after the clonidine was introduced. The current plan for Lovenox is a total of 15 days only, as long as it clears up the thrombosis during that time period.

I guess I should just relax with it all. I have daily responsibilities though and am finding it difficult to impossible to attend to them. I am finding it very difficult to simply attend these medical appointments. I come home from one appointment and am in extreme pain and exhausted. The more I walk on my feet, the worse it gets. I have found wheelchairs very helpful, especially at the large hospital.

I may look into getting some help here in the house if this continues.
I am often one to cook meals for people in need of help or elderly/disabled people living alone in our neighborhood.
I can barely make it to the kitchen for anything.
We have company arriving visiting from another state. They will be here brunch tomorrow morning.
I have told them I cannot make/cook brunch tomorrow morning. They will work it all out with my husband, as he will be home all day tomorrow. We really want to see them while they are in the area.

Ooops. I think I may be rambling.:rolleyes:

I always enjoy hearing from you, Lara. I hope you and your son are well.:)

Thanks again!

:hug:

DejaVu

Topical Meds
 

I have meet several people who are in the same situation I am in regarding topical meds no longer working. Personally knowing two pharmaceutical chemist & they have told us that a LOT of the drugs are constantly being changed which is causing serious side effects or just doesn't work, this even includes toxic materials ending up in some of them!
I have full body CRPS for over 15 yrs which includes all organs, tissues, etc traveling daily resulting in sensitivity to many different meds. One of my doctors a few years ago helped me in learning/being involved in variety types of herbs & yes even cannabis. So I now make my own oils, teas, salves, etc to help my body heal as best as possible while decreasing some of my pain. Since doing these I've been able to cut down my infections & recovery time for flareups use to be quick until my doctor stopped prescribing certain meds to all patients (due to *DEA regs?)
Not having a doctor prescribe any pain meds has seriously affected my health, so I've been left trying to find alternatives & do many different ones just to survive each day.
I hope you get relief from your pain and if I can help in any way I'd be glad to.
Gentle hugs

Welcome, AlaskaLady!
 

Hi AlaskanLady,

Welcome to NeuroTalk. :D

Thank you so very much for sharing.

I agree there are so many fillers/excipients in meds, it can be tough to tolerate the excipients, even if tolerating the pure med itself. I often have to obtain the brand version of meds because many generics have fillers or formulations I cannot tolerate. (I know they are supposed to be the same; however, they are most often not the same. I am very sensitive to substances and it has taken me a long time to teach this to most of my doctors. They now see more and more people reacting to meds in ways they did not used to react.)


For instance, many meds are not gluten-free and many doctors and patients do not realize this. I need my meds and food as pure as possible. Shouldn't meds be as pure as possible? It seems simply logical to me.

I have read some pain meds have been re-formulated on purpose so people cannot change the form of delivery. I have also read this can make the pain med less helpful to the person with pain and only slows someone trying to alter the med by 90 minutes. People wanting to change the form of delivery into a different form will likely figure out how to do so. People in pain should not suffer because of this. Just my own opinion, of course.

I am sorry you cannot obtain the pain meds you need to help get the pain under more control. :hug:

In my state, there is a newly instituted method of watching over doctors, pharmacies, patients, when any controlled substance is prescribed. Doctors have to report any prescription they write to this database. Pharmacies have to report if they fill a prescription of a controlled substance. For instance, there is a file on me. Data is compiled. It shows the prescription dosage and frequency and the prescribing doctor's name. The pharmacy then reports the same information when they fill the script. There is information on how many days I take to fill the prescription, etc. If there is a dosage adjustment, that also must be reported. We must submit to random pill counts and to random drug testing when called in by our doctors' office. We must show up with pill bottles and submit to a urine test within 2-4 hours of being called in by phone. If we do not show up, we are tapered off pain meds, starting immediately. (I know there are days I simply could not make it. If I am heavily sedated on meds, I won't be driving. I don't always have back-up transportation, etc.) This is all a hardship upon doctors and upon patients.
It is driven by people illegally selling/dealing these meds. I say put the hardship upon the people illegally dealing/distributing drugs, rather than upon the medical practices and the people in need trying to get help through legal channels. (Just my own opinion, of course.) My point: Many doctors do not want all of this additional headache. This is an external database and it takes extra time to sign in, to do the data entry, etc. This is an even heavier burden for smaller or private practices.

My doctors are strongly encouraging me to try cannabinoids. I have the written recommendation from my physicians. This is sent to a state regulatory panel, where it is reviewed and approved or denied. I expect approval. All of my doctors want to explore this avenue and I have more than one qualifying condition for approval.

When approved, I have a choice to make: I can either sign up with a dispensary or I can grow plants and make my own product. I can also start out with a dispensary and then ask to switch over to growing my own.
I will be studying up.

I am sorry you have been dealing with full body CRPS. :hug:
Wow, I don't know how one copes with full body involvement for 15 years.
You must be a very strong person. :)

I have had intermittent episodes of this. I have had episodes in a specific limb after and injury or a surgery. It has taken time to get things calmed down. Sometimes up to three years. This time is a bit different. This time involves 2 limbs at a time, with a 3rd limb starting to chime in. Severe pain is also spreading to other areas of my body, with allodynia over my whole body. I am in worse pain if I have used the limbs involved and the pain gets much worse in the night. :eek:

I am sure you know what this is like...and more.:(

I appreciate your heartful post and your generous spirit.

So glad you have joined us here.

Gentle Hugs in return to you.

:hug:
DejaVu