Dearest Neuro friends,

My Immunologist gave me a RX of Medrol (Methylprednisolone), 4 MG.

I have to take one today and one tomorrow before my IVIG. My question is: Is this a big dose?

I have 30 tablets, so clearly I can take them more than just before this IVIG.

Also do any of you take Medrol or Prednisone regularly? How much?

I am so hopeful that it will help me avoid a negative 'flare' from the IVIG.

And I also am hopeful that this medication will help me if I have a flare.

A 'flare' for those of you who don't have autoimmune conditions, is a systemic tsunami of bad stuff happening all at once. All 'flares' feature profound fatigue, depresssion, pain (systemic myalgia) and for me severe itching/burning/tingling skin.

My face burns like a bad sunburn, for example. All I can do is sit, with my eyes closed. It is an effort to even open my eyes, and reading or using the computer is very exhausting.

A flare can go on for days. After my 10th infusion with Hizentra, the flare lasted for 10 days. I can also have a flare without an infusion, just a conjunction of 'the stars' or whatever influences my immune system to switch into overdrive and attack me.

I'm not so worried about long term side effects of Medrol since I'm already 71 and my bones are very strong, for example.

But I'm curious to know how others deal with this drug.

Hugs, Elaine

No, that is not a big dose. I think it's about equivalent to 5 mg of Prednisone.

It's a pretty standard low maintenance dose for regular use in autoimmune disease.

However, it is NOT a standard pre-med dose for IVIG. Most taking IVIG get one larger dose by IV just prior to infusion (along with benadryl and tylenol). I either receive 40 mg of medrol or 10 mg of dexamethasone IV. This was the standard dose even when I first started getting IVIG back in 1997 (for 9 years). Everyone in the infusion room got the same.

Since you got 30 days worth, it seems she wants you on it daily. Maybe she thinks in your case a steady dose will work better...for your flares.

Reactions to IVIG usually occur within the first 5 days. It would be quite rare to do fine the first week and then react after that, so I don't think the daily medrol is just for the IVIG. That being said, maybe a daily dose will just help you with 'flares' and keep your AI disease more stable. Maybe she will give you IV medrol also before your infusion.

Most common side effects are weight gain, bones loss, GI upset (take it with food to help this). I had problems with hot flashes from it. I had no idea it was the medicine until I researched. When I tapered off, the hot flashes tapered down too...and stopped after I stopped the steroid. However, I don't get the hot flashes with the large one time IV dose before my IVIG...hmm

I will add: If you take this for more then one week, then you MUST taper off it carefully to avoid withdraw syndrome.

Thanks so MUCH en bloc.

Your words confirm what I was thinking. I will see what happens with the IVIG today. I thought she said IV Medrol, as well. But I'm not sure what will happen.

I took prednisone YEARS ago (we're talking 55 years ago!) and my mother took me off of it suddenly since she was worried about side effects.

Needless to say I 'crashed' horribly and then got Mono. Probably all due to the sudden, dangerous withdrawal from Prednisone, which was very NEW then.

Now I am in charge of things and am very compliant with medications and very aware of issues with Prednisone.

I just SO MUCH want this IVIG to work for me. I have not been sick since I started adding IgG to my system. And my IgG has risen by 100 points, from 388 to 488, which is over 25% since the end of August.

I hope you know how valuable your comments are for me. And how much I appreciate that you took the time to share your knowledge, experience, strength and hope.

I know we are all different (boy, do I ever know!) but hearing from those who have 'walked the walk' is an enormous reassurance to me.

I'll let you know how things go today. And I know that any reaction I have will be delayed by at least 48 hours or longer. I had no problems with the actual subcutaneous infusion at all, AT THE TIME. And I liked self infusing….but a weekly reaction, increasing in length and strength, made is impossible to continue with the weekly treatments.

Hugs, Elaine