Steroid pulse on SPMS (no relapse), reason for improvements?

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Steroid pulse on SPMS (no relapse), reason for improvements?

Postby CureOrBust » Tue Apr 05, 2016 6:02 pm

I have been flagged as SPMS. On my latest MRI (while checking for Campath eligibility), no enhancing lesions were found, which would indicate to my simple understanding that no current inflammation was found.

However, recently I did a 75mg/day 3 day pulse with prednisone, but not in response to a relapse. During the pulse and for a few days after it, I definitely noticed an improvement in my symptoms.

My question is, if the MRI shows no enhancements (ie inflammation), then why do I respond favorably to a steroid pulse? anyone have any pubmed/study links that would help explain it?
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby hargarah » Thu Apr 07, 2016 8:09 am

The correlaton of the MRI to actual MS Symptoms is about 30%. Otherwise stated, the MRI and related plaques/lesions only help to tell 30% of the story. There are so many other things going on in the brain that are unknown and that is why you can be PPMS/SPMS and have no worsening lesions...but have your symptoms worsening.

"The Brain is a Big Black Box of Voodoo", as my GP says :)
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby CureOrBust » Thu Apr 07, 2016 8:40 am

hargarah wrote:The correlaton of the MRI to actual MS Symptoms is about 30%. Otherwise stated, the MRI and related plaques/lesions only help to tell 30% of the story. There are so many other things going on in the brain that are unknown and that is why you can be PPMS/SPMS and have no worsening lesions...but have your symptoms worsening.
I was not asking about lesions in general, but inflammation; which I understand are referred to as enhancing lesions.

Steroids are thought to work by decreasing inflammation, yet my MRI (with enhancement) does not show any active inflammation; ie enhanced lesions.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby centenarian100 » Fri Apr 08, 2016 12:48 pm

Steroids sometimes have positive systemic side effects. People taking steroids often have decreased muscle soreness and pain and increased energy. Even if you are taking prednisone for poison oak, you may feel subjectively good. This isn't specific to multiple sclerosis. However, if steroids lead to objective changes in your examination, that is a different story.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby CureOrBust » Fri Apr 08, 2016 4:28 pm

centenarian100 wrote:Steroids sometimes have positive systemic side effects. People taking steroids often have decreased muscle soreness and pain and increased energy. Even if you are taking prednisone for poison oak, you may feel subjectively good. This isn't specific to multiple sclerosis. However, if steroids lead to objective changes in your examination, that is a different story.
I understand that steroids can cause a mild "euphoria" or general well being. However, this is not the effect I notice. I can specifically notice my walking is "better"; notably better balance and I don't drag my right foot/toe or stumble/almost trip ie much less ataxia and also endurance is increased, which I accept could be the increased energy and possibly be the feelling subjectively good (euphoria) you have pointed out. I do notice I find it harder to sleep when I take Prednisone (75mg in morning).

Additionally, when I exercise, I take Ritalin which is specifically known/made to cause increased energy/euphoria (which is why I use it, the energy that is). The slight euphoria may also let someone care less about pain/tiredness. I admit that Ritalin does help with my walking also (endurance mostly and probably a little euphoria), the Steroids help much more distinctly with my ataxia & balance. I am also in no pain/muscle soreness, so I don't think its that.

It's definitely a reduction in EDSS.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby Scott1 » Sat Apr 09, 2016 5:11 am

Hi,

I think you are associating lesions with inflammation and that is not quite right. Lesions are a possible outcome but they are not inflammation. MS myelin is unlike normal myelin as it is soft. (see - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC296292/ )
It may not require inflammation to break down and inflammation can affect a variety of cells without impacting on myelin.

Prednisolone can reduce inflammation by modulating the immune response. It won't change the nature of lesions at all.

Your capacities are improved by modulating your immune response; the innate immune system, the adaptive immune system, the lymphatic system, intracellular responses and so on. Demyelination is just a small part. It is the definitive signature of MS and provides the name but it is far from the whole story.
What your experience shows is if that you break the symptoms down and deal with each as its own problem you can make a difference.
Look at the sources of inflammation and how energy is made.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby CureOrBust » Sat Apr 09, 2016 6:16 pm

Scott1 wrote:I think you are associating lesions with inflammation and that is not quite right. Lesions are a possible outcome but they are not inflammation.
I am not trying to focus on lesions par-se, its simply what I understand an enhancing area is called on an MRI. Its terminology/association of the language used when reading an MRI. My understanding is that
1) an enhancing region on an MRI displays an area having a higher concentration of water.
2) Higher concentrations of water are normally found at areas of inflammation.
3) Areas of inflammation on an MRI of an MS sufferer are labelled enhancing lesions.
4) Areas of inflammation, are areas that are currently undergoing demylination

Which of the above understandings / statements are incorrect?

From what you are saying, I am garnering that an MRI (3T) does not show up all areas of inflammation, and hence does not show all areas of damage, and therefore not all regions of demylination? or are you saying that not all demylination occurs at sites of inflammation? or is it simply that we cannot register the lower level of inflammation on MRI? My understanding is that anywhere that the immune system is trying to clear up debris (ie damaged myelin at sites of demylination), will create an area of inflammation.

Scott1 wrote:Your capacities are improved by modulating your immune response; the innate immune system, the adaptive immune system, the lymphatic system, intracellular responses and so on. Demyelination is just a small part. It is the definitive signature of MS and provides the name but it is far from the whole story.
OK, so if it is accepted that demylination is a small part of the cause of symptoms, what are the other treatments/medications the medical world are using to improve symptoms? Or is the above your beleifs / items not currently supported by research?

Scott1 wrote:Look at the sources of inflammation and how energy is made.
Huh? you are now back to inflammation. As for how energy is made, I also use Biotin, ALCAR, creatin monohydrate etc etc etc none of which works as well as prednisone.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby Scott1 » Sat Apr 09, 2016 7:48 pm

Hi,

I'll answer this in bits as I have (I mean really have ) to go the football! Hawthorn v Western Bulldogs is going to be a very good game. Please support Hawthorn. They have won the last three Grand Finals and are beating the odds by staying on top. We should try to do the same things. Stay away from the cellar dwellers.

Of your 4 statements, I'd say 2 and 4 are not absolutes. They are true under certain circumstances. An MRI shows lots of interesting things. It will show accumulations of water and signs of damage. A simple catscan will also show inflammation in muscles and joints. You don't need an MRI for that level. The lesions are largely after the event. A bit like a bomb crater. Just because there is a crater doesn't mean its a dangerous place to stand.
Inflammation is normally a reaction to injury or infection. Usually it's white blood cells and their products streaming in to an area to protect it from viruses or infection. Autoimmune diseases are assumed to be a misguided response although the more you look the more confused that line of thinking becomes. The Lymphatic system can push lymph which is full of white blood cells in response to infection but it has no pump. If it doesn't return to the blood stream it leads to oedema. For some people with MS that is more significant than demyelination.
The lesion is important but it is after the event.The nature of ROS (reactive oxygen species) and RNS (reactive nitrogen species) is more important than damage that results. They are integral to inflammation. As weird as it sounds, this is a case of keeping your eye on the doughnut not on the hole.
Got to go to the football. Cheer for the champion team. They defy the odds.

I'll come back.

Regards,
Last edited by Scott1 on Sun Apr 10, 2016 4:30 am, edited 1 time in total.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby Scott1 » Sun Apr 10, 2016 4:08 am

Hi again,

Hawthorn won when the statistics said they should not have. Just shows that statistics are not always the whole story and winning can be about ignoring them and sticking to a plan.

All the blockbuster drugs used for MS are looking at aspects of inflammation.

The interferons activate natural killer cells to attack viruses. When I first started to take Avonex in the early 90's they had a pamphlet in the box proclaiming its antiviral properties. They don't now.

Tecfedira, Tysabri and Gilenya try to shift the immune response from Th1 to Th2 to lengthen the space between attacks. They aim to modulate the immune response to inflammation. It's a guessing game with copaxone.

You're looking at Campath (alemtuzumab) which is a monoclonal antibody targeting abnormal B lymphocytes which are a type of white blood cell. It's really a drug that targets lymphoma or leukemic B cells. So the question there is what causes that?

Essentially they are all modulating aspects of inflammation.

The issue is what causes the inflammation? The consequences can be observed but nailing the cause is where theory breaks down. That's why it is a disease of unknown origin.

Spasticity may be a consequence of inflammation and extremely difficult to deal with but it's too simple to say controlling inflammation leads to a resolution of spasticity. The same is true of fatigue.

Without going into detail, for spasticity, we need to control the rate at which calcium signals our muscles to tighten and how we make ATP to signal them to release. If inflammation has caused proteins to fold the wrong way or disabled enzymes then controlling that doesn't make proteins fold the other way or just bring enzymes back to normal function. It is also a process that's independent of demyelination.

Making energy is about the efficient activation of the sodium potassium pump. That, in turn is dependent on making sufficient ATP. I would be taking large doses of Q10 and aceytl-l-carnitine for that. It has nothing to do with lesions at all. I don't think what you are taking will work as well as they do.

If you believe in EBV as a possible agent in MS then an EBV immortalised B Cell is a prolific producer of superoxide which can lead to overproduction of peroxynitrite. and that can cause inflammation. I like an antiviral for that such as valacyclovir.

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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby CureOrBust » Sun Apr 10, 2016 6:53 am

Scott1 wrote:I would be taking large doses of Q10 and aceytl-l-carnitine for that.
Done...and...errr...done. I am on 800-1600mg of CoQ10 along with high doses of ALCAR. I have a 1/2Kg bag of pure ALCAR powder, which I encapsulate myself.
Scott1 wrote:It has nothing to do with lesions at all. I don't think what you are taking will work as well as they do.
They do not work as well for me as some of the other things i take. But I continue as an insurance policy.
Scott1 wrote:If you believe in EBV as a possible agent in MS then an EBV immortalised B Cell is a prolific producer of superoxide which can lead to overproduction of peroxynitrite. and that can cause inflammation. I like an antiviral for that such as valacyclovir.
And ... done. I am also currently on 400mg x 3 of valacyclovir, and a few weeks back I actually tried raltegravir. I also have and have used Amantadine and Tamiflu (not for EBV)

None of these work anywhere near as well as Prednisone.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby Scott1 » Sun Apr 10, 2016 8:13 am

OK and good,
Except you can't stay on the steroid.
It will take a while. What brand of Q10 are you using?
I don't know too much about Amantadine. I can see some people have used it. Did it make you drowsy? It's interesting they were trying different flu treatments. What were they specifically trying to achieve?
Presumably you have had the full range of tests for everything. Did anything show up?
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby CureOrBust » Sun Apr 10, 2016 4:03 pm

Scott1 wrote:Except you can't stay on the steroid.
And done. The steroids (Prednisone) are only a three day pulse. ie 75mg in morning for three days. No taper.

Scott1 wrote:It will take a while. What brand of Q10 are you using?
ummm... over five years? The original driver for CoQ10 was Statins (Lipitor appears to help my MS). However, its only the last 12 months I upped the dose beyond 100mg/day. I use "Doctor's Best, High Absorption CoQ10 with BioPerine, 400 mg".

Scott1 wrote:I don't know too much about Amantadine. I can see some people have used it. Did it make you drowsy? It's interesting they were trying different flu treatments. What were they specifically trying to achieve?
When I was RRMS, my only known trigger for a relapse was a cold or flu. I personally used the Amantadine to minimize my rate of infections. However, I do know most research has found it ineffective against common infections. Generally, it is used off-label by people with MS to counteract fatigue (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4252198/). I personally don t notice these effects. And to answer your specific question, it does not make me drowsy.

Scott1 wrote:Presumably you have had the full range of tests for everything. Did anything show up?
We would be here all day to run through all my test results. But quickly, on my first blood test i came up as low uric acid (which I had read back then, was very common for MS), so I have been on high Inosine (aprox 2g-4g/day). I have also been found with and have had 3 treatments for CCSVI (by three different clinics, including Dr S). No measurable changes for me.

It would be probably best if you have any specific questions. As you have seen above, there is so much I have tried or am doing, to cover a non-specific question would take pages and I may accidentally skip over something. Generally, most medical tests come back good. I am otherwise generally healthy, not overweight , exercise regularly and eat well.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby Scott1 » Sun Apr 10, 2016 6:54 pm

OK.

So the real issue is fatigue or tightness or both?

The low uric acid indicates that the metabolisation of purines is awry. My view (for what it's worth) is that indicates that you struggle to make ATP. The 'A' is adenosine which is adenine plus d-ribose. That's a purine. If you don't make ATP the response in the cell is to combine two ADP to make one ATP and one AMP. The AMP is washed from the cell (hence you lose that 'A') that ATP is spent and has to then find another ADP and the process repeats. Slowly you have less ATP and fatigue develops and your uric acid level falls. When your uric acid level falls too much you lose the neuroprotective benefit as it is scavenging radicals such as peroxynitrite. It becomes a vicious cycle.

When do you take the Q10? From experience I know not all Q10's are the same. I use this one and it works for me - https://www.bioceuticals.com.au/product ... xcel-150mg . If price means anything then I am paying for efficacy because it's much more expensive. I've tried cheaper brands and get no bang at all for my buck. I couldn't see what sort of oil the product you take is in. It does make a difference.

There must be something in you that is still a source of inflammation. EBV primes certain cells to be inflammatory when exposed to a peptidoglycan (bacterial cell wall). I think, but I don't know, that when I had my last big attack I gained a great benefit from taking Zinnat. I sort of bullied my doctor into giving it to me. It's a nuclear warhead for gramm positive bacteria and I took 300 doses of it. I think it cleared some nonspecific bacterial infection (probably in my gut). It may be worth doing exactly what your doing but taking a course of antibiotics such as Zinnat to smash a nonspecific source of inflammation. You will need a strong personality and a compliant doctor to do this as they are now gun shy of antibiotics. Basically, if you have EBV you are primed to be inflammatory. Knowing what underlying bugs you have becomes secondary. Simple dietary changes that proclaim antiviral properties wont hurt either (ie pomegranate juice).

There is also a very sound augment to try to activate the nitrite/nitrate pathway so I go to boost juice and get a regular mixed juice of beetroot (heaps), carrot, ginger and kale each day. It's $6.60 and it won't kill you.

Nothing will happen quickly. The steroid gives you a breather and I'm not anti doing that.

I love that you exercise. What do you do?

Regards,
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby CureOrBust » Tue Apr 12, 2016 2:35 am

Scott1 wrote:So the real issue is fatigue or tightness or both?
The real issues I note are with balance and ataxia. The fatigue will set in if I walk a long distance (ie >500m to about 1km max) and thereby make my ataxia much worse. ie limit the distance I can actual walk, without tumbling over.

Scott1 wrote:The low uric acid indicates that the metabolisation of purines is awry. My view (for what it's worth) is that indicates that you struggle to make ATP. ... When your uric acid level falls too much you lose the neuroprotective benefit as it is scavenging radicals such as peroxynitrite. It becomes a vicious cycle.
And hence the Inosine. I am now in a region normally associated with a very high risk for Gout.

Scott1 wrote:When do you take the Q10? ... I couldn't see what sort of oil the product you take is in. It does make a difference.
I take it in the morning and night with 4-6Gm of fish oil; 4-6 tablets of 750DHA.

Scott1 wrote:There must be something in you that is still a source of inflammation. EBV primes certain cells to be inflammatory when exposed to a peptidoglycan (bacterial cell wall). I think, but I don't know, that when I had my last big attack I gained a great benefit from taking Zinnat. .... Basically, if you have EBV you are primed to be inflammatory. Knowing what underlying bugs you have becomes secondary. Simple dietary changes that proclaim antiviral properties wont hurt either (ie pomegranate juice).
I was actually on the ABX protocol a few years back. I think I came out worse than what I went in.

Scott1 wrote:There is also a very sound argument to try to activate the nitrite/nitrate pathway so I go to boost juice and get a regular mixed juice of beetroot (heaps), carrot, ginger and kale each day.
I'm a bit of a boost junkie (for the flavour mainly) as well, but I normally go for one of their non-dairy (also a coconut junkie) "green"/coconut based drinks. Yes, I understand yours is probably just the juice.

Scott1 wrote:I love that you exercise. What do you do?
Some feel worse the day after exercise, I feel better. I have a fancy-smancy cross-trainer, with a 26" stride length and a more natural stride path (ie my toe is NOT pointing down on the forward cycle https://www.youtube.com/watch?v=2G2e0sCDv6g). I also have the resistance waaaay up high at about 12 out of a possible 20 (slowly increasing over the years), and manage to do about 45min (slowly have been increasing the time as well). Coming off of it, I can hardly stand. I try to do that every second day. On the alternate days, I try to also walk as far as I can. A trick I use is to walk around the shopping center/mall as long as I can, and then actually do my shopping whereby I can hold myself up on the trolley; and hence push myself harder/further/longer. I have also started to hold onto the door frame and jump on the spot. I try to increase the number of times I can jump each time. I do this on the alternate day also.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby Scott1 » Tue Apr 12, 2016 6:14 am

Hi,

Please don't get gout. I had it once and it's not just a sore toe. The whole body doesn't feel great. Maybe back it off a little. More is not always better. If you do get gout remember that Valacyclovir is a purine nucleotide analogue so if they give allopurinol you will be taking a purine and an antipurine. Hard to exert yourself when that battle is happening.

I watched the video. What happens if I said climb a couple of flights of actual stairs? Where would you feel it?

Is your gait normal or do you lift one hip and move your leg in an arc? If you lie on your back and pull one leg back so the knee is above the hip and the lower part of the leg make the leg into a L shape which way do your toes want to point then?

It's interesting what you said about ABX. A lot of bacteria have pumps built into their walls, particularly the ones with thicker peptidoglycan layers. When an antibiotic attacks them, they sort of shut down and go into hibernation and devote all their energy to pumping the antibiotic out. When the antibiotic ceases they resume normal activity virtually unscathed. This is how resistance has developed. While you are on the antibiotic you think there's an improvement and as soon as you cease using it the bacteria hit back hard. You may have experienced that problem or you may have had a herximer response. In either case the course may not have done its job.

On the Q10, I was thinking about what sort of oil the gel capsule has in it rather than what oil you take along with it. You do take a lot of the brand you use. It would be interesting to see if the type I take makes a difference. They cost more but you wouldn't take a dose as high.

My mix is just the juice. The colour is often disgusting depending on who makes it. Kale makes it go brown.

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