Vitamin D3 and K2 Replacement to Prednisone?

[rickalex2]

I have had MS for 31 years. I'm 55. I am still ambulatory and can't really complain after all these years. But I will... As we all know, MS isn't what you "see" most times, its internal in so many ways. I have lots of those struggles even without being in a wheelchair. And currently I am in a relapse. I've been put back on high doses of steroids and because I am on Mavenclad I have barely any White Blood Cells left to fight off anything. So.. I'm looking at an alternative to steroids so I don't really "get sick" with no way to fight it. And because Prednisone is awful for our bodies. Great at fighting Inflammation... but not great when it comes to everything else.

So I looked at some YouTube videos and other discussions and I have found that 30,000 D3 IU's daily along with K2 supplements are a great way to fight inflammation during this relapse. I have ALWAYS taken Vit. D3, but only 2,000 units daily. This is quite a bit more! But I have heard of this in the past, so I know people do it. I've seen Doctors prescribe 50,000 but in a weekly dosage.

Just wondering if people could tell me what they take and if they do increase it during a flare up? I'm not looking for other ideas just yet on a prednisone replacement, so I'd appreciate not getting responses like that. Right now, I want to just hear what everyone is saying about Vitamin D3 IU's they are taking daily and why they are taking them. Thanks!! Kathy

[pennstater]

Sorry to hear you are in a relapse. Hope it resolves quickly for you. As you said, steroids are no fun. I actually do not tolerate Prednisone well(actually manic reaction), so following IV solumedrol, I did not use a Prednisone taper after first relapse.

As for vitamin D, I am still on 2000mg daily. It was recommended by my first neuro and the 2 subsequent neuros concur. I have my bloodwork drawn every 3 months due to Tysabri usage and they monitor my D level 2x a year. Since I am still in the higher end of the normal range, no increase is needed. I do get dairy in each day and try to be outside at least 30 minutes each day to get exposure naturally, when the sn cooperates.

When I had asked each of my 3 neuros, they all said the higher amounts are warranted if someone can't keep their levels in the normal range. But there is a risk of too much vitamin D, which can result in calcium in the bloodstream and cause other issues.

Before starting, I would discuss with your neuro and have your levels monitored.

Lots of luck to you!

[rickalex2]

Good idea. I don't know why it didn't hit me to have my levels checked first! I will wait until after I check in with my Neuro on Monday and have him issue a lab test. I am sure he will. He's known me for 27 of the 31 years I've had MS. How do you like Tysabri? I personally loved it. Did it for 5 years but with each passing year my risk of pml was just too much. And "back" when I was on it you could test to see if you had the JCV virus in you and I did...but back then you couldn't check the level you were at. Now I know I'm low risk, but then Mavenclad came out. So what the heck. I've tried almost all the others out there, so let's try this now. Thanks for your quick and clear response! I really appreciate it!

[pennstater]

Good plan. I love Tysabri. In my 10th year and fortunate to still be JCV negative. I did have to get a port, as the veins stopped cooperating.

Feel better soon.

[Mamabug]

I was on a vitamin D protocol for awhile through my functional medicine doctor. I'm order to avoid the possible toxic side effects from high school doses of vitamin D3, in addition to vitamin K (more kinds of K than just K2,), it was also important to add calcium in f the right type and the right dosage.

I'd be very cautious about taking such high doses of D3 without a knowledgeable doctor monitoring you. Vitamin D toxicity is real.