Botox & Muscle Spasms

Keah · June 21, 2005, 6:45am

Hi everyone,

I'm scheduled to have Botox injected into my neck and shoulder muscles on Friday. The idea is to weaken the muscles enough to relax them into some sort of normal tissue instead of the rocks I am used to. The Radio Frequency relieved the pain, but failed to do much for the spasms, so this is the next step.

My Rheumy freaked on me 2 weeks ago and told me to stop having these invasive procedures. Since I take Enbrel, I'm at too high of a risk for infection. I think he's nuts and am now searching for a new Rheumy. However, as the day gets closer, I am starting to get a little worried about this. Has anyone had this done? I know that Botox was developed to use for muscle spasms and that it's cosmetic use came later. I'm just a little nervous about possible side effects because of Enbrel. Well, I also havent had any Enbrel for 3 weeks because my insurance messed up the shipping. It's coming tomorrow. Maybe I won't take it until next week.

Ah, decisions, decisions. I hope you're all having a good night!

Keah a.k.a. Wormy

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user11 · June 22, 2005, 2:30am

hey keah!
does your rheumy know you are going for the botox? i don't know if the botox is a dead culture, attenuated, or alive.....but if it is an active botulinium injection, i would make sure you find out. on enbrel, we are not allowed to recieve live vaccines because of our immune systems. i'm sure the doctor will tell you the corect thing to do. that would be great if it works. i get terrible back spasms from AS and they are torture, having to crush 2 to 3 antispasmodics at once and swallow just to STOP the spasm from spreading. been good latley though. knock on wood! much much luck! let me know what comes up! i'm very curious!
erin

Keah · June 22, 2005, 2:59am

Thanks Erin. Let's just say that the Rheumy is a little whcky about infections. He doesn't want me to even have any cortisone injections because he's afraid of infection. He wants me to pull out my teeth and get dentures because that's safer than having dental work and last but not least, he is demanding that I have a chest x-ray to rule out TB even though I had a negative PPD and have no symptoms to indicate TB. He really has gone overboard and would hit the roof if I mentioned Botox.

The Pain Mgmt Doc is well aware that I am on Ebrel and the risk of opportunistic infections. I finally received my shipment today, but have decided not to take it until after the Doc gives me the go ahead. I haven't had an injection for over 3 weeks, so I'm pretty confident that my immune system is working well.

I will post the outcome once it's done (ir not).

Keah a.k.a. Wormy

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user11 · June 22, 2005, 3:34am

the last thing we want is for you to actually get boltulism!!! well, at least the rhuemy is concerned! i think it is wise to have the CXrays done while on enbrel. even though a ppd is negative, only an xray and sputum cultures actually will diagnose TB. it's so funny how much doctors vary with their logic!! i had strep throat and continued enbrel and he's always jabbing me with needles. i hate the dentist and refuse to see one (never any cavities, but my gums bleed). look up the Botox and read if it's a dead bacteria or if it is attenuated. cause like with the flu-mist vaccine, it's a weakened virus so its alive and if on enbrel and immunosuppressed, you can end up getting the flu. the Botox though is sososososo small and harmless...i'm just wondering if its attenuated. this is really interesting! i'm glad you posted about this. again..good luck!
best wishes
erin

Keah · June 26, 2005, 4:49am

Well, since I haven't had an Enbrel injection in 3 weeks, I decided to go ahead with the Botox. I won't be taking my next dose for a week, just to make sure that I don't get any big reactions.

My injections went pretty well. I'd say there were about 12 along the trapezius muscles across my shoulders and up into my neck. He even got the tiny muscles up at the base of my skull and the worst of the areas along my shoulder blade. One of the injection sites blew up into a marble sized ball and got a dark bruise rather quickly, but that's not an uncommon imjection site reaction for me. Today the swelling is down, but I have several small bruises from the injections. I've also got a killer headache partially from the injections which caused a tension headache and partially from a hormone induced migraine. I can't yet feel any difference in the spasms.

The Doc told me that the next few days would be worse and then gradually the effects would begin to set in with maximum effect in about 4 weeks. Just once I want instant gratification. Sigh.

And so I'll let you know how it all works out in the end. So far nothing has helped the spasms, I'm really countin gon this to work.

Be well.

Keah a.k.a. Wormy

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Keah · June 26, 2005, 5:17am

Oops. Sorry Erin, you asked about whether it's a live or dead bacteria. In fact, it's not a bacteria at all. Botox is a protein created by the bacterium Clostridium botulinum which blocks the release of acetylcholine and relaxes the muscles.

I can't find any studies that looked at immunosuppression and the use of Botox, but I don't think that I need to be all that worried since I'm not actually receiving the bacterium. Also, as I mentioned before, while on Enbrel, my last WBC was 11.2. That is slightly high, so I have no reason to believe that I'm all that immunosuppressed. My immune system is still working well and I haven't had any opportunistic infections at all.

There is some mention in the literature about the possibility of building antibodies to the protein. Although I'm specualting here, I would imagine that this is similar to the antibody reaction that can occure with Remicade and so maybe being immunosupporessed is a good thing. I'll have to discuss this idea further with my doctors.

Have a great night!

Keah a.k.a. Wormy

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fatigued · June 26, 2005, 1:48pm

Dear Keah,

I am sorry, I meant to write to you quite awhile ago.

Around last September I had a botox injection in my lower back for fibromyalgia pain. It was administered to me by Dr. Ko. He is a Canadian Doctor working out of Princess Margaret Hospital. He has done some incredible work in the area of the use of botox.

I did not get any relief intially. Dr. Ko also did some sort of injection about one month before he gave me the injection. He also gave me a freezing injection one day in the lower back area and in my knee. I could not believe the relief that gave me it was instantaneous.

I did eventually get relief from the injection. It was amazing. The injection provided me relief of pain in the lower back and hip area. I was able to walk again. I could bend. It was so wonderful to have so much less pain.

Unfortunately my drug plan does not cover these injections. They are almost five hundred dollars. So I have not been able to go back for any more.

I am scheduled to go on Humira any day now. I have been taking methotrexate for almost one year. I take 7 tablets 2.5 dosage once a week. It took a long time for the methotrexate to give me any relief, but it finally did. the way it works in Ontario, Canada, is that one has to try things like methotrexate and arava before our health system will allow a patient to try the more expensive biologics like Humira.

BTW my rheumy also went crazy when I mentioned that I was getting Botox injections and said my risk of infection from them was just too high.

I had a brother in law who was given Botox injections for pleursy. Unfortunately he fell on the ice one winter night. He thought he just had a few bruises. A couple of days later he passed out at home while going down a flight of stairs. He was in the hospital for quite awhile. they finally opened him up for exploratory surgery. When they did this his spleen just fell apart in the doctors hands. They said it was from the Botox. he had received several Botox injections. The doctor he was seeing was experimenting with the use of Botox for respiratory infections.
Sadly my brother in law passed away on the operating table.

I hope you get the same relief that I did. I wish you well. I am glad that Erin gave you some words of caution. She is a very wise young woman. you are also wise, so I trust between the two of your brains this will all work out.
judy/effie

Keah · June 27, 2005, 3:28am

Hi Effie, Thanks for sharing your story. There are actually 7 different proteins produced by Clostridium botulinum and each has a different method of action. The one they use for muscle spasms is botulinum toxin A. I can't see how this would work for someone with chronic respiratory infections, although maybe someone might look into the use for chronic bronchospasms.

I'm very sorry to hear about the experience that your Brother-in-Law went through. That must have been such a tough time for your family. I am glad though that you had such great results.

I haven't tried any of the immune system modifiers like Methotrexate or Imuran/6MP although they are common for those of us with Crohn's. Having been so sick for so long, I put off having a family and am trying to get well enough to do that. I will have to wait a few months after the Botox injections, but I am hoping the between those injections, massage therapy and Enbrel, I will be able to manage to stay well enough to get through a pregnancy. Oh yeah, I'm also using the worm treatment (TSO) to try and get my CD under control. Once I have a baby or two, I will likely move on to Humira and Imuran to control both the CD and AS. I would just prefer to stay on the milder meds until then.

I do have a background in Health Care and so I am pretty up to date on all the info regarding my conditions and treatment options. I think that I am doing the best thing for me for now anyway.

Thanks again for your input. Be well.

Keah a.k.a. Wormy

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user11 · June 27, 2005, 5:15pm

hey there Keah! a-hah, now i get it.....it's the protein derivitive! i see. and i agree with you that it sounds like it was experimental with bronchospasms, makes more sense. so were the Botox inj IM or SC? i would think IM right? OUCH!!! so many...makes me tense just thinking about it. you're a tough cookie! must be sore eh? how is it today so far? i also found your journal on TSO fascinating!

Keah · June 28, 2005, 4:08am

Yeah Erin, they were all IM injections and they sure hurt like heck! Actually, the Doc called me a tough cookie too! I am still very sore from the injections, but the bruises are fading! LOL I have such sensitive skin - I should have been a Princess. I think that maybe, just maybe there is some slight relaxation of the muscles going on. Shhhh! Don't say it out loud though. I don't want to jinx myself!

Hope you're having a good night!

Keah a.k.a. Wormy

God helps those who help themselves.

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user11 · June 28, 2005, 7:03am

goodevening tough cookie!

user11 · June 28, 2005, 7:08am

oh and speaking of clostridium botulinum....those were very cool to gram stain and look at under a microscope!!!! we were lucky enough on eyear to have sent to our microlab a vial of the culture. they cluster together!
hee hee hee.....i luv bugs............ :)

Keah · June 29, 2005, 4:41pm

Hey Erin. I have found that the quick jab is actually better for me then the smooth slow slide, at least as far as my SC Enbrel. I dont' really know what the Doc did as far as the Botox injections. I have had chronic pain for amny years and have learned a way to separate myself from the pain, so I wasn't paying much attention. The other times that I had injecitons were mostly the quick jab and those work well enough for me. To be honest, the needle itself is not my problem. I have much more pain from the pressure of whatever is injected into the muscles. There have been times where this pressure was enough to irritate the nerves and leave me with numbness & tingling down my thigh from a single Demerol inj into my hip. After the first tiem that happened, I had the next injection into the other side and had Mom (an RN) watch to make sure that they didn't hit the nerve. Although the injection was prefectly placed, I still ended up with numbness. As I said before, I shoudl have been a Princess! LOL

The Botox injections that Ihad were part of treating the AS. I have long had spasms in my back and it was believed that they are AS related. The nerves get irritated by the inflammation surrounding the facet joints. The muscles then spasms to protect the spine and themselves. The spasms further irritate the nerves and create more pain. It had become a snowball effect with no end in site.

I did have great success with cort inj into my SI but there is only so much of that they will do. I had a total of three, two months apart and each gave me almost total relief. The cort also arrested the fusion that was starting. After the 3, we tried Radio Frequency and that has been wonderful. So far, it's been 2 months and I only get pain if I have been on my feet or walking too much, but even then, the pain is mild compared to what I had before.

I did try epidural cort into my T spine and Lumbar spine. Those gave me limited relief, but were not soemthing worth doing again. There was very little residual pain from the lumabr inj, but the T spine made it impossible to lift my arms for 3 days. I couldn't even use my mouse and I was in agony.

I tried trigger poitn inj into my traps and along the scapula too. That only created more spasms and an intractable tension headache. Then we tried Rado Frequency and while that relieved most of the pain, it did nothing for the spasms. I was still occasionally have pain down my arm from the nerve irritation so the next step was Botox. Like the trigger point inj, Botox caused more spasms and another intractable headache. By last night I was almost serious about needing a guillotine, but I think there's some real relief this morning. yes, I'm loaded up to my gills with narcs, I can function better than yesterday. So maybe there is a light at the end of the tunnel.

As far as Enbrel goes, it certainly had given me some relief, but I would like more than I'm getting. Ultimately, I would prefer to be using Humira, although I've heard that the med itself burns upon injection while Enbrel doesn't. Of course Humira isn't approved for AS and in order to get it for Crohn's I would need to do a trial of Remicade first. I don't have the veins for that and wold need a PICC or port for that and I refuse both. That in itself is another lonf story, so for now, I am stuck (literally) with Enbrel.

Have a great day!

Keah a.k.a. Wormy

God helps those who help themselves.

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user11 · June 29, 2005, 6:50pm

KEAH, KEAH, KEAH.......so far it seems that lite @ the end of the tunnel doesn't it?

gretchl1987 · March 23, 2017, 7:35pm

So glad I found your posts, they have helped me so much. Thank you.

Gretchen Lawry