Progress thread for ne

[nicnak68]

I finally cancelled the gym membership I haven't been using, but I did walk the pain-in-the-foot-puppy twice today, so there's that. (Honestly, I can't lose too much weight. I finally broke down and bought clothes for this body which is much bigger than the last body. Fortunately, at age 46, I'm not likely to drop xx pounds in a matter of a couple of months. Maybe by spring? Then I won't have to buy clothes for that season! And I'll use these clothes for...mumus. [Just kidding.])[/QUOTE]

This is a quote by Ne,can't work out how to do the quote box


I used to be 112lbs in my early to mid 30's.
Fast forward to age 47 and I'm now 175lbs and only 5'2"......mostly because of alcohol and what I ate with my wine,
This has depressed me greatly,I hate being fat!!

[Ne/Neva Eva]

...
Voluntary muscles, ie the muscles you use when you exercise, run, lift weights, are different - these are what L00p would be referring to. He's probably right that you can exercise more easily & build strength in these muscles if they are more relaxed. Core muscles which keep you upright aren't under voluntary control - you are unaware of them.

I sense I'm on a loser with this discussion. I'll try to find some articles about use of bac in cerebral palsy.

Or maybe I'll just give up & go to bed.

Hiya, Molly. I suppose what I was trying to get to, in the nicest way possible, is where you found information that suggests that baclofen weakens any kind of muscle. Involuntary muscles are only found in a couple of places. Your blood vessels, bladder, GI tract, respiratory tract and your heart. (See the wiki on smooth muscle here: https://en.wikipedia.org/wiki/Smooth_muscle_tissue and the one on cardiac muscle here: https://en.wikipedia.org/wiki/Cardiac_muscle) All other muscles in the body are voluntary. Lo0p found evidence that baclofen did increase Human Growth Hormone and therefore allowed people to build more muscle more quickly. That's why I was asking, very nicely I hope, that you further explain the suggestion that baclofen caused you to have any problems with your spine. It simply doesn't make sense to me.

And not to be persnickety, because I really don't actually like to be pedantic, but the truth is that while you are correct that the half-life of baclofen remains the same (and is static) the longer you take it the less often you have to take it. The amount in your blood plasma stays much more consistent over a longer period of time. I can find the research article if you like. The ONLY reason I bring this up is because on the other thread I was trying to make light of the fact that people can take it all kinds of ways, but if you're new to the medication, the half-life actually does make a difference. After a while, meh, not so much. I can take 200mg in a swallow at this point, as long as I'm not titrating up, and it doesn't phase me. Should a newbie do that? Hell no! Not unless s/he wants a very, very unpleasant several hours.

I used to be 112lbs in my early to mid 30's.
Fast forward to age 47 and I'm now 175lbs and only 5'2"......mostly because of alcohol and what I ate with my wine,
This has depressed me greatly,I hate being fat!!

To make a quote box you just have to make sure the beginning quote thing-y is there. It starts like this [QUOTE=....] and the last quote thing-y is there, which simply says [QUOTE]. You can delete anything in it you don't want to use but you have to keep those two things completely intact.

The weight sucks, man. But whatever. I've got bigger fish to fry and I know what to do and how to do it when I'm ready to stop eating fried fish (yum) and fit into my favorite designer jeans again. Now I just look at them with lust. And it's winter. Thank the gods.

(As an aside, when I first got sober with baclofen, at age 40, I was working it at the gym and lost a bunch of weight. My east-coast very overweight relatives thought I was anorexic. My west-coast California relatives thought I had work done. And I was wearing a bikini to the beach. Booyah! Don't underestimate a little bit of sobriety and a whole bunch of ass-busting. I'll get there again. No bikini, though. Maybe.)

Hang in there!

[Ne/Neva Eva]

Actually, I guess I was 41. Whatever. That's just another annoying number.

[Molly78]

Actually, I didn't use the term "involuntary" muscles, I just said they weren't under voluntary control - you can easily make yourself aware of them & exercise them via systems like pilates.

And actually I should have used the term "reduces tone" rather than "weakens". Tone & strenght are different things.

Ne, I'm sorry I hijacked your thread the other night with discussion about SE. I clearly annoyed you. I get a bit OCD at times! I have continued the discussion on another thread & won't bother you again.

And Ne - you can be kinder to yourself for putting on weight around the age of 40. It happens to most of us & it isn't entirely due to alcohol!

[Ne/Neva Eva]

You're right. I apologize that I was so snippy. It was a very long day for me, but a good one! And I have to admit, I'm not fond of pedantics. But I like you and I'd like to be friends.

Also, anything can be said on this thread or any thread, so long as it isn't troll-ish. Ya' know?

Again, sorry for being short.

Oh, and I put on weight in my 30s. Lost it in my early 40s, and I weigh more now because I completely stopped exercising when I got depressed. I cancelled the gym membership because I hate it there. But I'm officially un-depressed and think that at an exercise routine is soon to follow. Everything, everything, everything, is on hold until Dec. 19th when I cross that stage in a cap and gown.

Except the new forum! It is actually being worked on. I don't expect it to be up and running until January, but I made contact with a whiz and he's on board and there will be a forum dedicated to baclofen! Yipppeeee!

[Ne/Neva Eva]

I guess my real concern, Molly, was the suggestion that baclofen causes flaccid muscles (I've never read this anywhere) and that it may contribute to scoliosis or other deformities of the skeleton.

And that is why I got a bee in my bonnet about it. And rather than just saying that, and asking you where you found the information, I got crabby and persnickety. Which makes me rather embarrassed and remorseful.

But it would be helpful if you would explain how our muscles become flaccid. Particularly the skeletal muscles? Or something? That's confusing.

[Molly78]

Thanks for that Ne. Not only do I get pedantic, but I don't explain things very well!

What baclofen does is reduce "tone". I have to be careful here, or I still might not get the message over. Tone is the sort of default state of the muscle, the state of tension our muscles are in at rest - they aren't completely flaccid. Otherwise we would fall down when we stopped thinking about standing up if you see what I mean. Kids with cerebral palsy have increased tone, & bac helps reduce that, but if you give too much, they lose the whole lot because they have a sort of "all or nothing" setting caused by the neurological damage which caused their condition. A friend of mine has a little boy with CP who recently stated on bac. At 5mg 3x a day, things were much better, his spasms were reduced, she could get his orthoses on without a struggle. Increasing up to 10mg 3x a day was a disaster - he couldn't any longer stand up in his frame.

Anyway, my theory (& it is only a theory) about my scoliosis is that I probably had a small twist to begin with (most older people do) but the bac reduced the tone in my core muscles, allowing the stupid excessive physical activities I was attempting to make it much worse.

I can see that slightly reducing the tone in normal muscles actually makes it easier to exercise, because you're not working so hard against natural resistance, so you get more out of your exercise, & build muscle bulk faster, as L00p apparently found. This applies to properly conducted exercises of course, not the stuff I was doing!

Well Ne, I have read that through & it makes sense to me. I'm holding my breath that it will to you as well.

[Ne/Neva Eva]

Thank you very much, Molly. And yep. That makes perfect sense.

By the way, I'm sorry about your back. Should've said that a couple of pages ago. Do you have to wear a brace? I have a 12 year old friend who just started to wear a brace and the poor girl thinks the world has ended. Which I suppose is accurate if one is in middle school and a girl and wearing a brace...

Thanks again.

[Molly78]

No I don't wear a brace. That only helps if you are young & still growing, makes sure your spine gets as straight as possible, especially during your adolescent growth spurt. For us oldies, the spinal surgeon told me, they won't do anything until we get nerve entrapment! There's something to look forward to!

Actually, it is only intermittently painful if I exercise too much. I do notice though that I can feel it more on higher doses of bac, which is what makes me think my theory might be correct. One thing I know, I'm never going to try to use a strimmer again. Is that what they are called in the US? Those things you swing from side to side to cut down weeds & long grass? The stupid thing is, the following year I got a man to come & do it, he did in 2 hours what had taken me days & charged peanuts!

Live & learn.

[terryk]

While we're on SE, I just want to refer to some posts on "that" thread (I think) about serious SE such as prolonged QT interval. I don't think I can find the exchange again & I haven't got the hang of quoting yet anyway.

However, there were comments along the line of "that particular SE has never been described with baclofen", & I just wanted to say that that may be true for those taking it under license at 100mg daily. We actually have no idea what the SE might be at the doses some of us are taking. I can tell you one of mine, which took a while to emerge.

When I started on bac in 2010 just after I read Ameisen's book, I took the dose up stupidly fast (I'm one of the "lucky" people who don't get many imediate SE), carried on drinking, spent a whole summer doing heavy gardening using equipment I could hardly lift & - surprise surprise! - developed quite severe back pain. Did I stop? No I swallowed bucketloads of strong painkillers & carried on.


In the autumn I noticed that I seemed to look a bit asymmetrical about the hips, got a spinal X ray which confirmed a lumbo-sacral scoliosis, then went for an MRI. When I walked into the orthopod clinic room my scan results were up on the light box, & I had to sit down quickly. My spine is twisted out of shape in an alarming way. The orthopod told me I had probably always had a degree of scoliosis, & age had made it worse. But I think I know better. Bac at high doses destabilises the core trunk muscles which are what keep you upright. I had gone at a physical activity which put them under strain, ignored the warning pain & here I am.

I don't think it has got any worse in the last few years, but for my 2nd attempt at sobriety I stopped drinking while I was titrating up. Actually I think that helped in other ways.

Just making the point that the doses some of us are taking are a whole new ballgame. I suspect new SE's will emerge which have never been described or even seen before.

Small price to pay for sobriety having a twisted back. It causes some discomfort, prevents me from walking long distances & might need surgery if I get nerve entrapment. If HDB gets general acceptance I could write myself up as a case history!

Here is my quote of, and replies to Speller's QT Interval post. "I still cannot find a single connection to baclofen and QT intervals mentioned in the literature or anywhere, and I feel confident that it is not a risk for most people." was my exact response. Spellers has yet to respond with the article(s) describing baclofen as having caused that (or any other) type of heart arrhythmia.

Concerning side-effects and what "may be true for those taking it under license at 100mg daily:" before implantable intrathecal baclofen pumps were available, neurologists routinely prescribed baclofen (as mentioned in Ameisen's book) over the 80mg/day maximum dosage described in the PDR to treat severe spasticity, and there are many reports in the literature that attest to its safety.

From "The safety of high dose baclofen" link in my signature -

High-dose oral baclofen: Experience with patients with Multiple Sclerosis:"There are several references to long-term, high-dose baclofen treatment for spasticity. Jones and Lance summarised their experience with 113 patients with spasticity treated with baclofen for up to 6 years. Baclofen dosage ranged from 30 to 200mg daily with the mean varying from 60 to 110mg depending on the cause of spasticity. Treatment was abandoned in only four patients because of intolerable side effects, and another 20% required a reduction in dosage. [...] Pinto et al identified patients who had taken up to 225mg daily for up to 30 months and emphasized that many patients need more than 100 mg daily and that side effects are only infrequently a persisting problem."

And from

Clinical and Phamacokinetic Aspects of High-Dose Oral Baclofen "A recent trend among clinicials is the use of high-dose baclofen (80 to 300mg/day) to control severe spasticity" and "In this pilot sudy of baclofen kinetics and and synamics in eleven patients, the safety and efficacy of baclofen was confirmed."

I think those studies show that most, and most serious side-effects (even among high-dose users) *probably* would have surfaced in the literature by now. One caveat is that the studies only cover dosages up to 300mg/day, and there's clearly a small, but significant population that is using more than that. Another is that nearly all of the patients mentioned in the literature were being treated for spinal cord injury, MS, or CP - so it might be hard to recognize, in those subjects, adverse effects attributable to baclofen that might blend in with the symptoms of the affliction for which baclofen is prescibed in the first place (for example, scoliosis).

Scoliosis can be a result of a congenital defect, neuromuscular disorders (including hypotonia *or* hypertonia), age related (bone) degeneratiion, or any number of idiopathic other causes. Adolescence and menopause are risk periods for developing the condition.

Some food for thought:

This study suggests that implanted intrathecal baclofen pumps (which most likely expose the spine to a higher concentration of baclofen than oral dosing) do not worsen the incidence or outcome of scoliosis in this very specific population (where curvature is most likely caused by spasticity/hypertonia):

Spine (Phila Pa 1976). 2007 Oct 1;32(21):2348-54.
The risk of progression of scoliosis in cerebral palsy patients after intrathecal baclofen therapy.
Senaran H1, Shah SA, Presedo A, Dabney KW, Glutting JW, Miller F.
Author information
Abstract
STUDY DESIGN:

Retrospective radiographic and medical chart review with matched control group.
OBJECTIVE:

To identify the effect of intrathecal baclofen on the incidence of scoliosis, rate of curve progression, and pelvic obliquity compared with a matched cohort.
SUMMARY OF BACKGROUND DATA:

Although intrathecal baclofen therapy (ITB) has been shown to be effective in decreasing spasticity, case reports have described some children receiving ITB in whom progressive scoliosis was noted; other authors have described no effect on the spinal column. A controlled study has not been performed.
METHODS:

All patients with spastic CP treated with ITB between 1997 and 2003 at a single institution were reviewed. A total of 107 patients undergoing ITB for a minimum of 2 years were identified, of which 26 patients subsequently developed or had progression of scoliosis. Twenty-five age, gender, and gross motor function classification system (GMFCS) score-matched quadriplegic CP patients with scoliosis who did not receive ITB constituted the control group used to compare the rate of curve progression and pelvic obliquity.
RESULTS:

The average curve progression for the baclofen group after pump implantation was 16.3 degrees per year; and for the control group was 16.1 degrees per year. Both groups' curves progressed over time during growth (P = 0.001), but baclofen did not have an independent effect on curve progression (P = 0.181). Average pelvic obliquity for the 2 groups increased over time (P = 0.001), but there was no difference between the groups (P = 0.536). Twelve of 57 patients (21%) developed scoliosis after pump implantation during a mean of 3.6 years of follow-up. Thirty of 92 matched control patients (32%) not treated with ITB within the same time interval had scoliosis by maturity.
CONCLUSION:

This study demonstrates that ITB has no significant effect on curve progression, pelvic obliquity, or the incidence of scoliosis when compared with an age, gender, and GMFCS score-matched control group of patients with spastic CP without ITB.

(continued)

[terryk]

A study showing rapid progression of scoliosis in a *non-ambulatory* *quadriplegic* on baclofen:

Progression of scoliosis after intrathecal baclofen in an adult patient with multiple sclerosis

J. Beaufils a, ⁎ , A.L. Ferrapie a, M. Dinomais a, V. Saout a, P. Menei b, I. Richard a
a C3RF, 28, rue des Capucins, 49100 Angers, France
b CHU, France

Corresponding author.

Keywords : Intrathecal baclofen, Scoliosis, Multiple sclerosis


Introduction .– Intrathecal baclofen (ITB) induces modification of axial tonus. The role of ITB in the evolution of scoliosis has been studied mainly in cerebral palsy. We present the case report of an adult female multiple sclerosis patient who developed a major scoliosis after implantation of a baclofen pump.

Case report .– A woman, 45 years old, with spastic quadriplegia secondary to multiple sclerosis evolving since 1984 presents thoracolumbar pain 30 months after intrathecal baclofen pump insertion in 2006 at the age of 40. Plain X-rays show a rapidly progressing right thoracolumbar scoliotic curve (Cobb angle 15/10/2008: 7° versus 54° on the 12/01/12) requiring a T3-sacrum posterior fusion (01/02/2012). This patient has no history of idiopathic scoliosis and had not reported backpain prior to implantation.

Discussion .– Several studies report the evolution of scoliosis after BIT in cerebral palsy and discuss the role of the treatment versus the evolution due to skeletal maturation [1, 2]. Our case report highlights that major aggravation of scoliosis may occur after ITB, in adults outside the risk periods of adolescence and menopause. This draws our attention to the necessity of regular follow up of the spine after ITB.


Spine (Phila Pa 1976). 2005 May 1;30(9):1082-5.
Adult scoliosis: prevalence, SF-36, and nutritional parameters in an elderly volunteer population.
Schwab F1, Dubey A, Gamez L, El Fegoun AB, Hwang K, Pagala M, Farcy JP.
Author information
Abstract
STUDY DESIGN:

A prospective self-assessment analysis and evaluation of nutritional and radiographic parameters in a consecutive series of healthy adult volunteers older than 60 years.
OBJECTIVES:

To ascertain the prevalence of adult scoliosis, assess radiographic parameters, and determine if there is a correlation with functional self-assessment in an aged volunteer population.
SUMMARY OF BACKGROUND DATA:

There exists little data studying the prevalence of scoliosis in a volunteer aged population, and correlation between deformity and self-assessment parameters.
METHODS:

There were 75 subjects in the study. Inclusion criteria were: age > or =60 years, no known history of scoliosis, and no prior spine surgery. Each subject answered a RAND 36-Item Health Survey questionnaire, a full-length anteroposterior standing radiographic assessment of the spine was obtained, and nutritional parameters were analyzed from blood samples. For each subject, radiographic, laboratory, and clinical data were evaluated. The study population was divided into 3 groups based on frontal plane Cobb angulation of the spine. Comparison of the RAND 36-Item Health Surveys data among groups of the volunteer population and with United States population benchmark data (age 65-74 years) was undertaken using an unpaired t test. Any correlation between radiographic, laboratory, and self-assessment data were also investigated.
RESULTS:

The mean age of the patients in this study was 70.5 years (range 60-90). Mean Cobb angle was 17 degrees in the frontal plane. In the study group, 68% of subjects met the definition of scoliosis (Cobb angle >10 degrees). No significant correlation was noted among radiographic parameters and visual analog scale scores, albumin, lymphocytes, or transferrin levels in the study group as a whole. Prevalence of scoliosis was not significantly different between males and females (P > 0.03). The scoliosis prevalence rate of 68% found in this study reveals a rate significantly higher than reported in other studies. These findings most likely reflect the targeted selection of an elderly group. Although many patients with adult scoliosis have pain and dysfunction, there appears to be a large group (such as the volunteers in this study) that has no marked physical or social impairment.
CONCLUSIONS:

Previous reports note a prevalence of adult scoliosis up to 32%. In this study, results indicate a scoliosis rate of 68% in a healthy adult population, with an average age of 70.5 years. This study found no significant correlations between adult scoliosis and visual analog scale scores or nutritional status in healthy, elderly volunteers.

And

A Patient's Guide to Degenerative Adult Scoliosis: "Degenerative adult scoliosis occurs when the combination of age and deterioration of the spine leads to the development of a scoliosis curve in the spine. Degenerative scoliosis begins after the age of 40. In older patients, particularly women, it is also often related to osteoporosis. The osteoporosis weakens the bone making the bone more likely to deteriorate. The combination of these changes causes the spine to lose its ability to maintain a normal shape. The spine begins to "sag" and as the condition progresses, a scoliotic curve can slowly develop. "


Can high-dose baclofen cause scoliosis in patients with normal spines, or exacerbate it in those with a propensity to develop it? I don't know. Molly's argument that baclofen reduces muscle tone in the spinal column in a way that could cause, or increase, curvature to develop seems at least *plausible*.

I think it pays to be cautious, listen to our bodies, and seek medical attention for any marked changes in our physiology. We also have to remember that correlation does not imply causation... In my case, I have congenital spondylolisthesis, and was also diagnosed with (very) slight scoliosis in adolescence. Since I found indifference, I've taken to powerlifting and my back is stronger than ever - even at 200mg+/day. I currently high-bar squat 315 and deadlift 450 (I'm a biggish guy in my mid-forties), but I know that my experience is not universal.

Disclaimer: I am obviously not a medical professional. -tk

[Ne/Neva Eva]

Thanks, Tk. I was hoping you'd chime in.

That's interesting and alarming considering how absolutely sedentary I am. Thanks, again, Molly, for bringing it to our attention.

Bottom line is (once again) I need to get exercising in the way that Lo0p recommended (minus the crazy) and the way Terryk picked up...Regardless of whether there is an increased risk of scoliosis from baclofen, we all know that weight bearing exercises help us keep our bones upright and strong. And annoyingly, I'm at the age when the process has begun that my skeleton and muscles are deteriorating. Middle age...<sigh> (More annoying that I just got a new prescription 6 months ago and I can already tell I need stronger bifocals.)

Dec 19th. Then game on.

(Though I'm not going to even attempt to quit smoking until I lose this weight. Despite the fact that I felt like every patient I treated yesterday was there because they smoked and they were all kinds of banged up. Seriously. WAY worse even than the diabetics and kidney failures. Smoking is bad for us, folks. Just in case you didn't already know.)

[Molly78]

Thanks, Terry. These all seem to be neurologically damaged patients. It will be interesting when we have data (in the distant future I guess) on a population of fully mobile ex-alcoholics on HDB, including older ones who do have quite a high incidence of scoliosis from natural aging.

[Molly78]

The problem is, Terry, that anyone with basic IT skills can do a literature search & show the results. The interpretation of the studies is more complex, & probably if you gave the same results to several professionals you would get several different conclusions.

Questions to consider are: how many in the study, what population are they drawn from, what age, how long did they take the treatment. what were their underlying conditions, the list is endless. For instance all the participants in the bac studies you show are disabled, most significantly so. To extrapolate these results to a healthy population is misleading at best.

And at the end of each paper is usually a suggestion about what more needs to be done eg "It would be useful to look at these patients again in a year" or "further studies are needed with higher numbers of participants". No researcher ever assumes his results are definitive.......whereas you are presenting these papers as "proof".

Sorry to be pedantic (again) but it starts to feel a bit like being bullied when every comment you make is met with a barage of "studies" which prove it's nonsense. I'm not the only one who has been treated this way, I imagine Spellers felt intimidated as well. And actually it was her clinician who knows her case her background, her predisposing factors, who raised the possibility of bac causing the problem. This has more weight in my view than any number of papers pulled off the internet.

I'm not saying literature searches aren't useful, but using them to tell people their concerns are stupid or invalid is not helpful.

[Spellers]

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