After I was on Imuran for almost a year with no improvement, my doctor boosted my dose in the spring. I started getting stronger in May, and felt really good in June and July. I thought the Imuran was kicking in, finally. But over the past couple of weeks I've been getting weaker again, and now I seem to be back to where I was last winter.

So, does that mean my improvement was coincidental? Or could it still have been the Imuran? I'm racking my brain to try to figure out what else could have made me better, and what could be making me worse now, but I can't think of anything I'm doing different.

Well, I'm disappointed, but trying to be grateful for the things I can still do.

Abby

Call your neuro. It's probably time to add in something.

You can go crazy trying to put together what is different, what works, etc. I have learned that there are times of the year when I am just worse. August is one of those times. I have another friend who also has a tougher time in August. Med adjustments help.

Take care!

Thanks for this, 4-eyes, and for all your other recent help.

Last I saw my neuro, he didn't have any suggestions about how else to treat me. He didn't want to go any higher on the Imuran (I'm on 200mg/day); I'm not a great candidate for a thymectomy; I could have IVIg, but it hasn't helped much and my illness isn't severe; neither of us wants to try Prednisone. Any suggestions? I have an appointment in a week or two.

Thanks.

Abby

Hi Abby,

Hmmmmmmmm, I would still suggest that you consider steroids, but perhaps in an "untraditional" form. A few years ago, I tried some fairly low dose IV solumedrol (200 mg or less). I used it at the same time as IVIG and it kept me from having to increase my pred dosage, and the side effects are much less and it worked very well. You could also re-explore IVIG, perhaps using a different brand (Gamunex is considered the best by most people.)

Please refer to the Osserman scale below. It can help you truly look at and consider the severity of your symptoms. Remember that you don't have to be "severe" to warrant treatment. :

Class I MG is characterized by the following:

Any ocular muscle weakness

May have weakness of eye closure

All other muscle strength is normal


Class II MG is characterized by the following:

Mild weakness affecting other than ocular muscles

May also have ocular muscle weakness of any severity


Class IIa MG is characterized by the following:

Predominantly affecting limb, axial muscles, or both

May also have lesser involvement of oropharyngeal muscles


Class IIb MG is characterized by the following:

Predominantly affecting oropharyngeal, respiratory muscles, or both

May also have lesser or equal involvement of limb, axial muscles, or both


Class III MG is characterized by the following:

Moderate weakness affecting other than ocular muscles

May also have ocular muscle weakness of any severity


Class IIIa MG is characterized by the following:

Predominantly affecting limb, axial muscles, or both

May also have lesser involvement of oropharyngeal muscles


Class IIIb MG is characterized by the following:

Predominantly affecting oropharyngeal, respiratory muscles, or both

May also have lesser or equal involvement of limb, axial muscles, or both


Class IV MG is characterized by the following:

Severe weakness affecting other than ocular muscles

May also have ocular muscle weakness of any severity


Class IVa MG is characterized by the following:

Predominantly affecting limb, axial muscles, or both

May also have lesser involvement of oropharyngeal muscles


Class IVb MG is characterized by the following:

Predominantly affecting oropharyngeal, respiratory muscles, or both

May also have lesser or equal involvement of limb, axial muscles, or both


Class V MG is characterized by the following:

Defined by intubation, with or without mechanical ventilation, except when used during routine postoperative management

Use of a feeding tube without intubation places the patient in class IVb


Hope this helps a bit. I was looking for a better "functional scale" but this was the best I could find!

It may be time to revisit the idea of steroids.

I have trouble classifying my symptoms with regard to severity because they're so episodic. If I'm not having an "episode" you would call me mild. I walk normally as long as I don't have to be on my feet too long. I tire easily--much more than normal for my age--and feel a bit of weakness during the day if I have to hold up my arms. I can't sit too long without resting my neck. That's about all. But during an episode, you'd call me severe, because I can't walk at all--I collapse. The episodes last an hour or two.

Last time I saw my endo, I asked him if we could look into channelopathies (I'm seronegative, and don't response to Mestinon. My response to IVIg is questionable). He said he'd talk to his partner and get back to me, but didn't, and I didn't push it because I was feeling so much better.

I've had this disease for about three years now, and I'm still baffled.

Thanks,

Abby

Yeah, well, your less than stellar response to treatments also increases the overall severity as well. Just the fact that you need assistive devices for mobility at all speaks to that.

For reference, I was IIIB when I was evaluated for the reboot. I then went off my meds so I could do the chemo and by the time I was admitted I was a very unstable IV. Try to avoid that if you can!

MG is nothing, if not baffling! If you figure it out, please let me know!

Abby
I'm so sad to hear you have gotten worse. I had such high hopes for you. As for the steroids my experence has been horrible. My neuromuscular Dr said some people can't take prednisone. This was during the time I lost all strength in my legs. He said I was one of those people. I am down to 20mg and it will likely take another year to taper me off. I started at 60mg. Like you I feel IVIG has no effect nor does Mestinon. Remember I am positive for 4 different antibodies. I don't know what the answers are for us. My wife says we are refractory.
Prayers for you
Mike

Thanks, Mike. As I was posting my relapse news, I was thinking, Oh, rats, Mike is going to be disappointed. It's so hard to tell. It may be that the Imuran is doing wonders and I'd be worse off without it.

Yes, I guess we're "refractory." I like the word. I think it used to be applied to stubborn and disobedient children.

Or it may be that this is a temporary relapse and I'll get stronger again. It's such an up-and-down disease that there's some real hope in that.

Abby

Hi Abby,

This is a wrong way of looking at MG.

Many autoimmune diseases tend to fluctuate in severity, and if you add to that the fact that muscle strength and endurance can be effected by numerous other factors, you can easily see why the symptoms change in their severity over the course of time.

Not every improvement is long-lasting remission and not every worsening is a relapse. MG decreases your reserves and therefore your ability to easily adjust to what for others may be minor and hardly noticed changes in the environment.

The best way to assess MG severity (and this too has its limitations) is probably by using the MG composite score.

http://www.ncbi.nlm.nih.gov/pubmed/20439845

http://www.aan.com/news/?event=read&article_id=8885

Many times a few days of rest, can lead to significant improvement, without the need to make any changes in medications. (just like a few days of over-doing it can do the opposite).

Hope you feel better soon.

Alice

Hi, Mike,

It's not you which is refractory, but your disease!

I was just talking about how much better I was on Friday.
Then on Saturday, my right leg gave out and I fell. In the chicken house. Not a pretty sight. At least my landing was padded......... Then my vision was blurry that evening. My ptosis was terrible by bedtime.
I was thinking that I spoke too loud and the "Fates" overheard me.
I feel frustrated. I guess I am saying all this to say that I know how you are feeling.