question for Quix re: your steroid treatment

[doublevision1]

Quix, a while ago you told us you were going to be receiving IV steroids, every other month I think.  I was wondering if you are now doing so, how is it going so far? What is the rationale?  Is there a time limit on how long you can do this?

I mentioned that the neuro at Brigham has recommended I do a 3-day course of Solu-Medrol every other month for six months, early in my Copaxone treatment.  His opinion was that the steroids have some protective effect, in addition to their anti-inflammatory efffects.  He felt it would give my DMD treatment an early 'boost.'  Unfortunately we then went off on another track and I forgot to come back to this during my consultation.  I am looking for a more technical description than that it may give a 'boost'?  Have you heard of such a thing?

You know me....I need to know the what, why and how.  I was curious about the rationale for your treatment plan and wondered if it is similar to the reasons that this has been recommended to me.  

I see my neuro in Edmonton next month and plan to discuss this with him then.  I'm doing my homework now so that I am prepared to have a reasonably intelligent conversation with him.  I'm thinking that if he thought this was a good idea, he would have already recommeded it.  I suspect this is one of the many areas where neuros disagree.

I thought others may benefit form your words of wisdom so am posting rather than PM'ing you on this.

Thanks a bunch!

DeeBee

[Lulu54]

I just had a DEXA scan done last month - most difficult part is being on your back like a turtle with your legs up on a cushioned block to align the spine.  It is non-invasive and takes about as much time and effort as an x-ray.

Laura

[doublevision1]

Thanks for that info.  I will inquire about the dexa scan at my next appt, esp if my neuro agrees with the Brigham doc, and I start doing the bi-monthly steroids infusions.  I'm thinking it would be good for me to have a baseline now.  I am 40, not yet menopausal, but concerned about my risk for osteoporosis given I've already done a 5 day and 3 day steroid infusion within a 6 month period.  Also my calcium intake has been low most of my life and I only recently started on supplements on a regular basis.  

[essdipity]

A DEXA scan is a bone density scan. It's done with a special machine, not MRI, and takes hardly any time. I get this at least every other year as osteoporosis runs in my family. I have osteopenia, which is reduced bone density (<2.5 standard deviations from the mean for my age). Osteoporosis is more than 2.5. I aim to keep things at my current level if I can, and take meds and calcium, etc.

I would think that any woman past menopause or anyone at all with bone issues would be well advised to have this test if steroids will be administered, to establish a baseline if nothing else.

ess

[doublevision1]

Thanks for the reminder about this.  I too had forgotten.  That's good to know that NYU also recommends this.  It reassures me that this approach is not way out in left field.

Elaine and or Quix --- this is the first time I've heard the term dexa scan.  Sounds like a bone density test?  Is it done with MRI?

[doublevision1]

Good advice.  That neuro gave me his card with his email address on it, so I will write him about this.  He actually did mention that there were a couple of related studies that supported this approach, but during our discussion he could not recall the names of the authors.  If he's got the time and interest, perhaps he'll look this up for me.  As you say, the worst that would happen is that he ignores me.  He seems way too sweet and innocent to put a hit out on me. lol.  Did I mention he looked so young that I had to restrain myself from reaching across his desk and pinching his cheeks?

[Quixotic1]

I had forgotten that!  You told us that a long time ago, wasn't it a week or so?

More evidence of my TB - Teflon Brain.

Quix

[monotreme]

Craig's neuro at NYU also told him that IV steroids give Copaxone a "boost" early in treatment.  

Since Craig already has spine osteoporosis, NYU wants a dexa scan and a clearance from an endocrinologist before the steroids can be given.

I'll have to see if I can find any studies on this too.

Elaine

[Quixotic1]

Yes, this is an accepted next step in treating MS that is responding to the DMD, but not quite as well as the neuro hoped for.  In my case my exam and my MRI look okay, but I was having an unacceptable number of little relapses.

His plan for me was to give one day of steroids at 1000mg IV monthly.  If it helped, I asked him how long we would continue it.  He answer was, "Indefinitely."  Then we had the discussion about whether this was detrimental in the long run, mostly in terms of osteoporosis.  That's when he told me this exact regimin hasn't been studied, but one close to it has and the answer is no, it does not appear to cause osteoporosis.  Then he said that the big Vitamin D guru at OHSU studied it and came to the same conclusion, but that it was not published and reviewed.  He clearly has great respect for this guy, though.  He did order a baseline DEXA.

Now, this is not a "standard." There are many attitudes and approaches to the use of routine intermittent steroids.  I have heard about this one, about the use of three days every other month and about 5 days every other month.  As I add up the total usage over a year, I found that 5 days made me uncomfortable.  This is a total of 30 days per year.  I think the danger of "steroid dependence" is pretty high there.  At three days every other month, we are talking about only 18 days per year.  Not bad.

Other neuros do not use this at all.  I'll look to see if there are studies on it.  My doc did say that he was using it to augment (boost) the effect of the DMD.  Your doc sounds like he is going to use it to boost the early effect of the DMD as it was increasing in it's early effectiveness.  This is a little different, but it makes sense to me.

Still I think that it would be a good idea to carry an alert stating "Steroid Dependence."  In an emergency, if you didn't need additional steroids, but got it that would be okay.  But, if you did need it and didn't get additional steroids, as Ada would tell you, that would not be okay.  You could certainly ask your doc about this.

And I agree.  This use of steroids at the beginning of DMD use is something I have not heard of before.  Why not write a letter to the Brigham doc and ask if there are studies showing its effectiveness, so you could mention this to your neuro in Edmonton.  the worst thing that could happen is that the letter would be ignored.  (I suppose he could put a "hit" out on you, but that seems like an overreaction, lol)

Quix