I lost hair last time I was on high dose of prednisone (60) and 10 years later I am on high dose (60) and hair is fine. Who knows with this disease. That is why they call it snowflake disease because it effects us all differently. I would say it is from your wonderful gift of prednisone.
haha

My guess too....:-)

Going to the VA for IVIG tomorrow and will ask my favorite Nurse Rhonda.

Scott

If she knows the answer to that one please let us know.

My favorite Nurse Rhonda, said that she had never heard of that before with MG. She said she would do some research to see if she can find something.

I'll try my PCP next. :-)

I searched with google for Imuran, prednisone and IVIG and in each found that they can cause hair loss. So you have a triple opportunity.
However, each say that it reverses gradually after you stop taking them. I did have some hair thinning with prednisone, but after I got off it, mine returned.
I think a solution is one of those Groucho Marx glasses, eyebrows and mustache kits ;-)
Kidding aside, the side effects of immune suppression are wide-ranging and distressing, but we are lacking in alternatives.

Good Luck
Russ

The interesting thing is that I do not appear to have lost hair anywhere else???

Search on Madarosis -- it says you should contact your doctor about losing eyelashes, and gives some possible causes and includes immunotherapy as one.
However, as we are always susceptible to opportunistic conditions, one should try to get an eye specialist to check this out to make sure it is not blepharitis - which can be caused by an infection.

Good luck
Russ

Thanks Russ -

I have sent an email to my PCP.

Scott

My Daughter is getting her hair done and the gal that colors and cuts her hair also does eyelash extensions. She said that in the fall more eyelashes shed than at other times of year. Has something to do with the season change in terms of cooler temps. They don't know why.

It will be interesting to see what my PCP says.

Scott

My PCP consulted with the VA in house eye doc.

They are giving me a referral to a civilian Ophthalmologist for review.

The VA in house eye doc attached this from "Case Rep Ophthalmol 2020;11:322–329":

"Our patient had both OMG and ocular surface disease due to blepharitis. According to the
intertwined course of both diseases, a shared immune cause is suspected. Her systemic treatment included high-dose corticosteroids, amifampridine, azathioprine, and intravenous immunoglobulins. Despite the intensive regimen, only minor relief was achieved. The blepharitis
and ocular surface symptoms were also treated intensively, by a combination of topical corticosteroid drops, tacrolimus ointment, frequent lubrication, and oral doxycycline, with symptomatic relief. However, when systemic corticosteroid treatment was tapered down, a relapse
in the ocular surface disease occurred, which required increased topical treatment.
Even though literature is lacking regarding ocular surface disease associated with OMG,
there is some evidence of corneal damage, corneal nerve alterations, ocular surface changes,
dry eye, and reduced corneal sensitivity in MG and other immunologic diseases [15].
Case Rep Ophthalmol 2020;11:322–329
DOI: 10.1159/000508815 © 2020 The Author(s). Published by S. Karger AG, Basel
www.karger.com/cop
Arnon et al.: A Case of Ocular Myasthenia Gravis with Severe Blepharitis and Ocular
Surface Disease
327
Conclusion
We describe an adolescent with OMG and severe ocular surface disease. Despite intensive
topical and systemic immunomodulatory treatments, both diseases were refractory to therapy. We suggest that a severe immune response may be the underlying cause for both OMG
and blepharitis in our patient."

The above is a cut-and -paste from the document. I did not see a way to attach the PDF so I pasted this.

I am waiting for the referral and we shall see what we shall see. :-)

Scott

Thanks to sseibert3 for writing all this.

Just go and talk to a doctor and I'm sure that you'll be fine. Maybe this is a side effect of the medication that you're currently taking. I would suggest you try out a kit from https://nickylashes.com/products/nicky-lash-lift-kit but you're going to have them grown in order to do that. It's normal to be scared since this seems like a weird issue, but I'm sure that they're going to grow back. Have you experienced this before? It can be hereditary if your parents or grandparents had this. The last option would be to get an implant and after that, you're going to get rid of this problem

Thanks for the info Scott!

With MG, I think we have to be much more aware of our symptoms, and rather than dismiss them as either MG or side effects of our medication, do a little research as well as bring them to the attention of our doctor.

I learned this somewhat the hard way as when on high doses of prednisone, I got things like thrush, fungal foot issues, and others -- what we can get from a suppressed immune. My family doctor and neuro said to try to get out of the view that most of us have while normal, that ignored issues will go away. With MG, they often need some attention!

I also found out that my best protection from most problems was trying to avoid close contact with others. I think now wearing an n95 mask (available at chain stores) is much more acceptable, and worth doing.

I just bought a box of n95 ones at our hardware chain in WI (Menards). They not only protect others from our germs but us from theirs, whereas the regular masks are mostly meant to protect others. I looked for Honeywell and 3M brands as they seem, to me, to be honest in their production versus many questionable ones found on the internet.

Good luck
Russ

We have been wearing N95 masks since the beginning of this thing. We were/are fortunate as our son has access to them early and he stocked us up.

Looking forward to getting my referral to see my Ophthalmologist - hopefully soon.

Scott

Have an appt with the Ophthalmologist on Nov. 23rd. :-(