With the virus and everyone being advised to stay away from places we might get exposed to it, others in our society are getting a hint of what it is like for us most of the time we are on immunosuppresants.  

When I first was diagnosed in 2012, I was quite scared of not only MG, treatment, my future, but of living while immunosuppressed.  I felt like I needed someone to hold my hand along the way, and that should be my neurologist.  However, getting an appointment with her and contacting her through the usual appointment route seemed almost always a month out before this would happen.  So I asked her if there were some way we could solve this that would not take much of her time yet be timely. 

Mayo Clinic- Rochester MN (my neuro's place) was just experimenting with a messaging system for patient - nurse- doctor contact.  And so my neuro thought it might be a good test case for her as well as Mayo.  But it wasn't quite ready yet.  So my neuro gave me an email address for her directly at Mayo and said that she checked it nightly and although there was junk mail in there, she would look for an email from me.  But save it for serious questions, and be concise and limit it to once a week at most unless there is something you really have to deal with.  And come to the emergency room if you really need help.  

And so for the next year, about 6 times I used that route to  coordinate tapering prednisone changes, ask a few symptom questions and report progress. During that period --starting about 3 months after diagnosis, I didn't go into the clinic again for MG as we handled it all through emails.  And after I went into remission, I did a yearly report on my ongoing remission status.  After that first year, Mayo had their official messaging system for patients up and running so I use that now and although my neuro is retired from MG treatment, I contact my other doctors that way too.  About the only things I need to do in person is come in for tests and a pep-talks occasionally where I get told what I should be doing in contrast with what I am doing ;-)   

Mayo's messaging system is triaged by staff and escalated as needed to nurse, physician assistant, family doctor or specialist.  I find this excellent for my type of person --one who doesn't feel the need for emotional support, stable in most of my problems but tweaking meds along the way.  Mayo also puts all of my tests online, images, all of the notes the doctors and staff have - so I can see my whole medical history online.  

The bottom line-- for some of us medicine practiced at a distance works good.  I always thought my most likely exposure to any germs would be in the medical waiting rooms anyway.  

It appears that we are going to rapidly move into that kind of either phone or electronic contact rapidly as the medical system gets overwhelmed for now.   And my advice is that you try to figure out something with your own medical support folks to try this out too. It worked well for me.  

However, my neuro was very clear to me that she didn't want to be overwhelmed by details and multiple complaints, just stick to the primary problem.  I include one email interaction below when I had just gotten to feel pretty good after lots of prednisone and had, previously worked out an overall plan to taper it, under my own decreasing dosages and notifying her of problems or changes in my tapering efforts.   The reason I did "self tapering" was primarily because the way the doctor decided if I was tapering too fast or too far, or too whatever was by asking me about my symptoms and then adjusting the medications.  We agreed that I could do that on my own under the overall guidelines she provided.  It was perfect for my type of person.  

****** My email to the neuro-- note I had not been in for an in-person visit since July having done all electronically*****

Russ Hanson  Diagnosed in May 2012. December 1, 2012 email I sent.  

Currently on 30 mg prednisone daily after a high of 60 mg.

Most MG symptoms are gone and I am reasonably functional.  My current plans are to gradually try again to taper down to about 20/0 alternate days over the next 2 months--with the idea that I am trying to find a minimal dose of prednisone that will keep me reasonably functional.  Thank you for the 5 mg prednisone prescription--it will help with the tapering. (***I has asked her for that additional prednisone prescription by mail having one for 20mg, one for 10 mg already****)

  My last try at tapering down was a little too fast, and possibly too low as at 20/15 I had some MG weakness again, and the process of going down was somewhat uncomfortable. I am going to do it very gradually this time.

   My blood sugar, although on the upper edge of normal, is OK. My BP is somewhat above normal (175/95 is typical).  I am on fosamax for osteoporosis as of a few weeks ago.  I had a hypogonadism test that indicated low levels--no followup.   

(*** note:  I did BP and glucose tests at home with Walmart purchased machines-- blood sugar because prednisone was pushing it up to diabetes.  The Mayo lab test indicating very low testosterone level showed up in the osteoporosis testing and led me to begin testosterone replacement in February 2013 -- and, at least in my mind, was what put me into remission from MG.  Of course that is not a scientific conclusion but one somewhat supported by both my endocrinologist and neuro as hypogonadism can wreak havoc with multiple systems in one's body.)  

I have gained about 15 lbs since I started treatment (after having lost that amount in the 6 months before treatment as part of a self-improvement effort).  Now that I am able to get out and walk for long distances and be more active, I will try to get that back under control. 

I have experienced some blurriness in my left eye, which appears to be more like astigmatism or maybe a cataract, so plan to get a check on that in early 2013. No double vision and very little eye focus problems or other symptoms I had early on.  

So, the bottom line question:  Do I continue with prednisone and the efforts to reduce it?  Is there some alternative med that is better for long term treatment?  Is there anything else that I should be doing?

Generally speaking, I feel OK, functional, and that things are reasonable.  

Thanks Russ Hanson    

************Reply from Neuro next day ********

xxxxxx , M.D., Ph.D.

Mon, Dec 3, 2012, 4:15 PM

to me

Thanks for the follow up. Glad to hear your MG symptoms are under such good control.

Would next taper toward 30 every other day. Keeping 30 mg for high dose day will work best.

As to best long term management:  it is a matter of maintaining satisfactory control while minimizing side effects and risks. No one size fits all. For many patients modest doses of alternate day prednisone is best option. But for some individuals even low doses of steroids are problematic, and then steroid sparing agents are better.

Given your osteoporosis I think it would be better for you to try to get off prednisone altogether if possible. This would mean starting a steroid sparing agent such as azathioprine, mycophenolate, or methotrexate.

I suggest you discuss this with your primary doctor and the endocrinologist if you question this recommendation. I would be happy to see you to discuss initiating a steroid sparing agent if you decide to go that route. 

Sent from my iPhone