My Neuro visit, Vit D, and Steroids

I saw my MS neurologist yesterday.  It was routine checkup.  I told him about the waves of increasing right-sided weakness.  Of course, it was not one of my bad days.  He examined me - always with incredible thoroughness - and compared the exam to all of his prior exams. (Yes, really!)  He found that, yesterday the arm weakness was stable from as far back as last fall.  However, he did find noticeable increased weakness in my right hip flexors.  He wasn't happy about the level of symptoms I've been having, but was glad the exam showed little change.

He discussed - in depth - his thinking about where to go from here.  The Avonex should be just in full effect now.  And my exam is pretty stable and my MRI from 6 months ago was pretty much unchanged, so objectively I look good.  But, I am having more symptoms than either of us are comfortable with.  So, first thing is he wants to check to see if I have neutralizing antibodies to the Avonex.  If I do and they are in high titer, then there is no sense in continuing with the Avonex or any other Interferon-beta.

The test for antibodies is highly specialized and done by very few labs.  The one he trusts is on the East Coast and it costs $1000.  It sounds like Medicare will cover it (????)  We'll see.  They actually send a kit for the specimen draw to your home and then send out a traveling phlebotomist to draw it, package it up and ship it back to Massachussets.

If the antibodies are negative or in low titer, he suggests that we continue with the Avonex and begin monthly 1-day steroid infusions.  This would continue indefinitely.  If the symptoms increase or continue this badly or my exam worsens he would recommend going to Rebif which is the same med at a higher dose, probably with the monthly steroid pulsing.  He doesn't like Betaseron.

If the antibodies are positive, then he would recommend Copaxone, probably with the monthly steroids.  Only if I then fail that would he recommend that we go to a second-line drug, Tysabri or Novantrone.  Clearly his choice would be Tysabri.  He says about 35,000 people are back on Tysabri at this point.  I forgot to ask if any of those on Tsabri have developed PML, the fatal infection.  All the cases of fatal PML in MS were on Tysabri PLUS one of the CRAB drugs Most researchers feel that it was the combination that led to the infection.  Now Tysabri is used alone.

Because I am started a regular 1 day monthly steroid regime he wants me to get a DEXA bone density scan.   Long term use of steroids causes calcium loss from bones, and can cause osteoporosis.   However, that effect is more related to the total time on steroids and not the dose.  Most people believe that one day a month will not cause this effect.  It has not been well studied.  The one published study showed no effect on the bones.  Dr. M says that he discussed this with the regional endocrine and Vit D specialist who has studied it, but has not published the data.  The results from this study also showed no increase or causing of osteoporosis.  But, Dr. M fels it is something that should be done anyway, becasue the hard scientific facts just aren't known for sure.  I am learning that Dr. M tries to keep his practice and advice to what is really known.

Then, he had the result of a Vit D level that I had asked my PCP to do.  My level was 23.  (I have been taking about 600IU daily for the last several years)  The lowest acceptable level is officially 20, but everyone is beginning to agree that people need a higher level than this - more like 55 - 70.  Severe toxicity has been seen at levels in the high 80's.  He had also discussed this with the Vit D guru at OHSU who says that lower levels should be supplemented.  There is not absolute proof that low Vit D levels help cause MS, but the data is very suggestive.  Also, there are no confirming studies showing that higher Vit D levels actually change the course of MS.  Dr. M said that while he doesn't actively advocate Vit D supplementation, he also doesn't discourage it.  He actually said that if "he" had MS he would take Vit D supplementation.  I asked him how much and for how long.  He said 2000 IU per day forever, or until I became an outdoor lifeguard in SoCal again.

Vit D has an important role in the immune system which I am just beginning to learn about and am not ready to answer questions on.  So, there is some real scientific basis for theories that a deficiency might set up the body for MS (probably combined with other factors).

So, I am understanding the full, immediate plans for my treatment.  I am going to begin Vit D supplementation and make sure I continue my calcium.  You MUST take calcium if you are supplementing with D.  Iam getting checked for neurtalizing antibodies.  I'm starting monthly IV steroid infusions and getting a baseline DEXA scan.  (Not a bad idea since my sister had a pathologic fracture last year and has osteopenia)

I thought you all might enjoy the full description of my Dr's analysis of my symptoms, my exam and what his plan is; plus the bit on monthly steroids, and a little bit more on Vitamin D levels and supplementation.  Elaine, has a lot more information on Vit D and levels and dose of supplementing.  There are doctors who are recommending doses as high as 50,000 IU per day, but there is some real risk in this.  Vitamin D toxicity can be life-threatening.  The Vit D expert at OHSU feels that the upper safe limit for daily dose is 10,000IU.

Elaine and others, I'm sure you have a lot to add.

Quix

[Rena705]

Thanks for letting us in on the information that you gleaned from your doctor and also the information on your specific case!  It's nice to know where you are sitting as well since you are always giving advice on others results now we know what you are dealing with as well as a member of medhelp!

I particularly found the information and the numbers on vitamin d that you have supplied and thank you for pointing out that Elaine has more info on this subject...I will be bothering her shortly instead of you for a change tee hee

Glad to hear that you and your doctor seem to have a good relationship and that you have a good MS Specialist.  I sure wish they were all as open and helpful as yours sounds!  I hope that your antibody test comes out ok so that you don't have to switch to Tysrabi and start a whole new regimen again...I tend to believe in the "let sleeping dogs lie" adage and I hope you will be able to do just that!

Lots of Hugs,

Rena

[mae1]

Hi Quix, sorry to here this but glad to here your MRI and exam have not changed to much. Do you know why your neuro doesn't like Betaseron??
just curious, I was on betaseron for almost two years but as you may know I had 3 attacks in a 3 month period. I also had the antibodies test done. that wasn't a problem for me.
after my last attack in Feb. my neuro decided to switch my to Tysabri. I just had my 3rd infusion and still have had no side effects.
I just recieved my first stable MRI report since my dx. so we are both very happy about that.
I did alot of homework before starting the Tysabri and their has been no reports of PML  since it has returned to the market... Let's hope it stays like that.
good luck with every thing.
april

[mae1]

Sorry, that was suppose to be 3 attacks in a 6 month period. it's late heh,heh.

[Momzilla]

I'm glad to hear Dr. M. is treating you with such great care and has such a well-laid out plan for you.  You have been meandering around with too many awful symptoms for too long.  Good for him and good for you!

I am 'buzzing' all over my left side tonight and it's hard for me to concentrate, but I'd love to hear more talk here about the Vit D connection.  As you know, My endo caught my deficiency last year, so I started taking 400 IUs, and now it's up to a whopping 17.

The thing I mistakenly figured was that MS somehow robbed the body's ability to absorb or utilize or retain Vit D or something like that.  I thought the converse thing, I guess.  Not that the deficiency caused the immune prob, but that the MS contributed to the Vit D prob.  So, that's interesting.  I guess it's interesting how foolish I can be!  But it makes more sense with the cooler climates being populated with more MS patients.  Duh.

Well, now I have finished Nurse Elaine's recommendation of 5,000 units per day for two weeks, and am down to 3,000 per day.  I am eager to see what my blood test would show next time.

Have been really overdoing things, and have SO many parasthesias.  Mouth is lazy on left.  Somebody had better find me a Dr. M. pretty soon, or a couple of lesions, dagnabbit.....

Glad the visit went well, Quix.  And thanks for explaining about the neutralizing antibodies.  I hope you are able to keep things under good control with just this (huge, long) treatment of steroids.  Good luck with the antibody testing.  

Feel well.  More ToMorrow,

Z*

[Quixotic1]

My doctor doesn't think there is any harm in Betaseron.  But the side effect profile and neutralizing antibody rate he felt made it a hassle to deal with.  When someone is doing well on it, if they come to him, he would certainly continue it.  And, if I had asked for it, he said he would prescribe it to me.

Both the significant side effects (enough to make people go off of it) and the antibody rate is right around 50% +/-.  So, he spent a lot of his time deling with those and switching people to other drugs.

That's all.

:))  Quix

[6-paq]

I'm glad that your recent MRIs have been stable and your exams show little change, but I'm sorry that your symptoms seem to be bothering you so much.

Your doctor is so on-the-ball!!!   I used to work as a Computer Programmer in a previous life and your neuro's analysis and plans sounds like an extensive flow char!!!.  Very detailed and thorough!!!

I do hope that the antibody test goes ok.  

Like Rena said, we do want to hear what is going on with you as you always give so much of your time and yourself in helping others here.

Take care, Pat :)

[LLWB]

I am so glad that your MRI's and exams were stable. Hopefull the Avonex will really kick in, and kick a** on some of those symptoms. Are the monthly steroids to help with the weakness and hip flexor symptooms? Take good care of yourself, I'm sure you're tired after a visit to Dr. M.

I will see him a week from Mon, the 16th, to go over my MRI's, and get his recommendations. For me he did seem very thorough. Take care.

Maggie

[essdipity]

Dr. M is certainly the most thorough neuro I've ever heard about. I really like the way he explains his thinking at every point and immediately tells you all his findings (level of weakness, etc.). I'm wondering if he does that with all his patients or if he communicates with you more because of your medical knowledge, thus making it colleague to colleague. Guess you just have to wait out the process of antibody testing to know for sure what your next steps will be.

As to steroids, I too would be hesitant, although the issue has not yet come up for me. A huge number of women, maybe even the majority, lose significant calcium as they age, so a DEXA scan is a good idea no matter what. I've been having them for the past 9 years, and officially have osteopenia, which does not seem to be getting worse, though I have another scan coming up in a few months. I medicate faithfully with Boniva, which is only once a month, hardly a blip on the radar screen. I also pay lots of attention to calcium intake, and in addition to every other source, I chew 2 ultra strength Tums every night before bed.

My women's multi-vitamin also has calcium, as well as vitamin D, but the D is only at 400 iu, so I take an extra 400 as well. At the end of April, during a routine blood draw by my PCP, I asked for a vitamin check. D came back at 34, with the report giving a normal range of 15-60. Are you saying this is outdated? At this time of year I'm out in the sunshine quite a bit.

Osteoporosis runs in my family, and my sister who is 10 years younger has the full-blown variety and has had for several years. She's finally getting serious about the meds and supplements. Since that disease is associated with a lot of other complications of aging (which death certainly is!!), I know it's important to keep my bones in good shape. Steroid infusions are scary.

This afternoon I see my neuro, whom I haven't seen since my diagnosis in January, though we've communicated otherwise fairly much. I think it's really time for a tune-up, as my quality of life is down the tubes. It'll be interesting see how thorough he is this time around.

ess

[sllowe]

Thank you so much for detailing your appointment for us.  All docs should be this thorough.  

Pestka's lab may do the NAB tests as well.

You are in good hands Quixy.

Folks - this should serve as a baseline appt. for us.  Obviously, not all docs will be this thorough or knowledgeable in all of these areas.  However gives us something to strive for.  

It's clear to me, that "trust" and "confidence" plays a key role in any staying in, or adding onto any therapy for this disease.  I'd be interested to know how many people "stop" treatment simply due to doctor care, or lack of.

Again Quix, so grateful for this!
Thank you,
-SL

[wishforchange]

You seem to have found a really good neurologist and I hope things improve for you soon.  The vitamin d story has interested me.  About a month ago I had a blood test and had very low vitamin d levels, just 27.  I was given 1000IU to take for a month but then had it stopped until new blood levels are back.  They're now checking my calcium levels too.  The tests were ordered to see if there was any link to my hip and leg problems, and osteomalacia was mentioned, but I was fairly unaware of the links to MS.  As you know nobody has ever suggested this as a diagnosis to me.  Being on this forum though does get me thinking, which may or may not be a good thing.  To be honest the month's worth of vitamin d did not noticably improve my symptoms.  However just recently things have got very much worse, and I am no longer taking the supplement.  Maybe it was helping.  Did not realise there was a link to calcium.  You are such a great source of information.  Thank you for sharing your experiences with us.

[jensequitur]

Quix, does your neuro still think you're RRMS?  

I'm on Copaxone, and aside from the site reactions, it's been okay.  Just gotta be careful not to hit a vein!

I'm curious - have you gotten another round of MRIs?  I know after a certain level of progression that there's really no point to getting another one, except to check how well the drugs are working.  

My right side weakness has been attributed to the lesion in my right creebellum, although I think there's also something in my thoracic (around T4-T7)

[Quixotic1]

ess - I completely overspoke when I mentioned the Vitamin D levels.  You are correct.  Current accepted levels for Vit D are about 15 to 60.  However, there is growing belief that the lower limits are excessively low, and that some people may function as though they had a defeciency down below about 30.  The people that are advocating the much higher levels are the ones looking at Vit D and immune dysfunction.

all - the data that Vit D supplementation will improve the symptoms of MS is still questionable.  The studies that look at whether supplementing with Vit D will reverse the disease process or slow it have showed pretty clearly that it will not affect the course of MS.

Jen - Yes, my doc believes that I have RRMS.  He agrees that my symptom course is more suggestive of a progressive course, but he says he has never seen anyone with progressive MS, either primary or secondary, with as little MRI lesion load as I have.  And I do have very few lesions and no atrophy.  So, I understand his thinking, but I can't get beyond the fact that once each of my main symptoms has appeared it has NEVER improved and has only VERY gradually worsened.  Those symptoms are the weakness in my right leg and right arm and the spasticity in my right leg.

My neuro is also a neuro-ophthalmologist and has his own OCT machine.  He will be doing that next fall when I see him again.

I'm willing to wait.  

Quix

[pennst8r]

I have a DEXA scheduled for Monday - we can compare notes! PCP thought I should get one - wrote Rx in March, but I didn't schedule till May. Didn't quite get its purpose. I take vit D too. That was all that came of my endcrinologist consult - low vit D.

Quix, my sister has been on Tysabri for a year now and is doing sooo well.

So the rest of this discussion is over my head, so I'll butt out now, lol!

[alastria]

Hi Quix,
I'm new here but have been reading old and new posts and trying to catch up on this community.

It sounds like your doc really listens!  How cool!

You also answered one of my earlier questions about how long people do monthly IV solumedrol - infinite, huh?  I'm going to get my fifth one and then see my neuro at the end of the month.  My home nurse for the infusion says my doc usually prescribes them for a very long time if they are working.  For me, they are helping a lot.  I think my symptoms are more stable and I have gained back some quality of life that I had lost.  The down side is suffering through a week of intense weakness and fatigue after the infusion (I would so love to be one of those people who gets the energy to clean their house).

I will be curious to see how you respond to the IVSM treatments and I really hope it can relieve some of your symptoms!

Thanks for sharing so much of your journey.

[Quixotic1]

Hi, again!  I don't think you can take my doctor's intent to use the steroids indefinitely as gospel.  I'm aware of several others here whose doctors used 1 day of monthly steroids for a few months to see if they could bring more active disease under control and then see if the CRAB drug could maintain it.   Or those that use 1 day a month until the DMD "kicks in."

My doc's opinion is that if you need them to stabilize with your DMD, then you'll need them as along as you are on it.

Sorry about your obnoxious reaction to steroids.  I would recommend that you get enough potassium before and just after the infusion to try to help with the muscle weakness.  You can use OTC supplements, which are very safe.  I could tell  you about them if you want.

Quix

[Quixotic1]

Well, I had my first monthly steroid infusion yesterday.  I don't know what it is, but it have been flying high all day.  I actually feel decent for the first time in many months.

I received the kit to have my blood drawn for the neutralizing antibodies to Avonex.  Now I just have to call to have them come draw my blood.

My mood is sooo good, but I'm afraid I have overdone it today.  Well... it was worth it!

You may have noticed I've been on here alllll day.

Carry on!

Quix

[ohwild]

Good morning!  Im so glad that you have found some relief, enjoy yourself you deserve it...but like you tell everyone else dont overdo it
Im really happy for you
hugs
CJ