[Stellatum]

So I saw my neuro. I told him how much better I was over the summer, presumably in response to my new dose of Imuran (from 150 to 200 mg. starting last April), but how I'd relapsed somewhat in August. He expressed reluctance to raise my dose of Imuran, but agreed that I am probably a fast metabolizer of the stuff. There's something about the size of my red blood cells (MCV, I think). Mine aren't as big as they could be, which indicates that the immunosuppressant isn't working at peak efficiency. I don't quite understand this, but the doctor saw it as evidence in favor of my theory that I need a higher dose of Imuran. So, in the end he agreed to give it a try, and I'm going to 250, which is higher than the maximum dose for my weight.

I'm hopeful it will help. I haven't used my walker since around May. Today I parked in the far parking lot (I have a handicapped tag, but don't need it any more). I enjoyed the walk around the medical buildings--the neuro's office is part of a huge complex of hospitals. So I'm definitely better than I was, since these things would have been out of the question before. But I think this is the time to push things a bit. If I can't get better than this, I will deal with being sick. But I don't want to settle for less than I could have.

Abby

[Anacrusis]

Originally Posted by Stellatum

If I can't get better than this, I will deal with being sick. But I don't want to settle for less than I could have.

Abby

You prepared well for this medication change and you are well prepared for whatever the outcome! Good luck

[pingpongman]

Abby, I understand what you are saying about getting by but not normal. That is where I am now. I can do things but need to rest a lot and can't do anything that takes a lot of energy. I am going to push the doctors until they say this is how it is going to be. Then I will have to make a mental and physical adjustment.
Mike

[AnnieB3]

Hey, Abby. I'm glad you're doing relatively better. That's good news.

I'm a little confused. Red blood cells are larger when they are "born" from the marrow. They get smaller as they age. So young RBC's are larger and mature RBC's are smaller.

http://www.getbodysmart.com/ap/circu.../tutorial.html

Did your doctor look at both the size of the cells and the amount of them? Have they done a peripheral blood smear to look at them (often more accurate than the machine counts).

Have you been doing more this summer? Sort of taking this feeling better thing out for a spin? Maybe it's not the Imuran not working but you working too much.

Even if you're on Imuran and other drugs, you do still have MG. No one wants to settle for less of a life than they can have. Ask yourself how far you're willing to push that drug envelope to feel good. There are way too many examples of patients using those drugs to make a disease better and then ending up with cancer.

I hope you'll get the right balance between disease and treatment. It's not too predictable. It would be great if we could control MG. If we could, then we'd all be happy.

Annie

[alice md]

If I can't get better than this, I will deal with being sick. But I don't want to settle for less than I could have.

This is pretty much word to word what I said to my neurologist last time we met. So, I can understand how you feel.

I think this is one of the hardest problems with this illness. There are (supposedly) numerous effective treatments, but no one really knows how effective they are or what are the true risks and benefits of each.

There are days I say to myself-why take the risk? And other days I think it is stupid not to try once more to get some benefit.
I am very fortunate to have a neurologist who stops me from such "adventures".

I think you should be happy with your level of function, but I can understand why you wan't more.

There's something about the size of my red blood cells (MCV, I think). Mine aren't as big as they could be, which indicates that the immunosuppressant isn't working at peak efficiency.

Increased MCV (and other hematological changes) are a side-effect of imuran not a desired goal. It can alter the production or blood cells, in a somewhat similar way that B12 deficiency does. You can go above the recommended doses, but your risks of unwanted side-effects and complications increases with that. So, I personally wouldn't stay on that dose for long.

It is also true that different people have different metabolism of medications, so the recommended doses are true for the average/majority of the population but may be too high or too low for some. But, we are unfortunately not yet in the era of being able to determine those parameters for most medications. Adding more complexity to an already complicated situation.

[Stellatum]

Annie and Alice,

Why yes, I did sort of overdo things this summer. I was thinking, what's the point of being able to do more if I don't do more? I might as well still be unable to do more. What's the point of saving up my energy if I never get to spend it? That was my mindset. I'm sure you all understand. I took the kids to the beach a lot.

I am approaching a natural turning-point in my life. I've been raising kids, and the youngest will soon be in school (I mean middle school--I've been homeschooling them). I had always thought this would be the time for me to go to work, maybe even go back to school first. Then I could do something really meaningful, like special ed, and help my kids through college at the same time.

When my MG was bad, I was used to the idea that none of this would happen. Now that I'm better, I feel like I just need a nudge. Suddenly it's within the realm of possibility again.

I understand that I'm taking a risk of over-treatment. But under-treatment is a risk, too. I risk MG crises; I risk permanent damage to my nmjs; I risk (this one's big in my mind) getting other autoimmune diseases like RA; and I risk missing a part of my life I've dreamed about for a long time.

That said, my doctor wants to minimize the risk of too-high dose of Imuran. If I get better on it, we will still try to back off it.

By the way--does anyone know if the fact that I still never get sick--never get the cold that the rest of the house has, etc.--means the Imuran isn't working very well? Is that evidence that I can tolerate a higher dose?

Thanks, Annie and Alice. I greatly appreciate your input.

Abby

[southblues]

Abby,
I understand about you wanting to get back to work. I am still working full time. It tires me out and sometimes I wonder if I can make it, but it is worth it as long as I can do it. It is the only way that I can help my daughter financially so that she can finish college. It is the only way that I can have anything nice as far as material wealth goes. (I don't care anything about fancy clothes, but I am glad to have my needs met.) I plan to keep on keeping on as long as I can.

[alice md]

Abby,

I realize that there is a difference among us.

I have had PLEX, IVIG, steroids and Imuran. All either did nothing, led to transient and even dramatic improvement (followed by a major crash), or made things much worse (Not to mention other unwanted side-effects).

I also tried graded exercise, acupuncture and probably other things I don't remember.

I was not ready to accept my illness and wanted nothing less than full recovery. I was determined to recover and get back to what I was before.
I was told during my first crisis that within a few weeks I will be back to normal and I was expecting this promise to be kept.

I blamed myself for being too determined, then blamed myself for not doing enough and then realized that there is a reality I have to accept.
After 10 months of being nearly bed-ridden and very far from what I wanted to be (following "very effective" treatment), I am grateful for what I have and my perspectives have significantly changed. (not that I ever stopped wanting to fully recover from this illness, but it is not a major issue in my life any more).

That being said, I am trying to understand where you are.

The point I am trying to make is that most MG patients will have significant improvement and better control of their illness with the currently used treatments (or possibly even without, as suggested by some small historical studies), but most will not have full resolution of their symptoms and will require some adjustment in their life-style.

Yes, I am sure we can all understand when you say-"what's the point of being able to do more if I don't do more? I might as well still be unable to do more. What's the point of saving up my energy if I never get to spend it? That was my mindset". I am sure most, if not all of us have experienced that and many of us more than once.

But, the price of that is a less stable disease, more ups and downs and less predictability of what can and can not be done. And also (what I call the MG paradox) being able to do less. As well as possibly worsening of the illness.

Just like a patient with diabetes can't take insulin and keep on eating cakes. I don't think a patient with MG can trust the medications to do it all.

This does not mean that you have to give up your dreams and plans. It just means that you may have to find the way to do them somewhat differently.
It is not an "all or nothing" situation and there are lots of in-between options.

[Stellatum]

Alice,

Keep talking, please. I'm not sure I understand.

It seems to me there are two extremes: insisting on full remission and not being at peace with anything less, even when you've tried every reasonable treatment (by "reasonable" I mean its risks are not greater than its benefits). The other extreme is just accepting the illness and not pursuing other treatments, even when they're reasonable.

If I sounded to you like I was falling into the first extreme, then I over-stated myself. When I talk about being healthy enough to pursue my dreams, I'm talking about my goal, not my expectations. As things stand now, I am making many, many concessions to my illness. I'm prioritizing, giving up things I love, letting my husband take on more than his share of the work of raising a family, and lowering my standards. I will do that as long as I need to.

So...like I say, keep talking, please. This is very helpful to me. It's a tricky balance.

Abby

Originally Posted by alice md

Abby,

I realize that there is a difference among us.

I have had PLEX, IVIG, steroids and Imuran. All either did nothing, led to transient and even dramatic improvement (followed by a major crash), or made things much worse (Not to mention other unwanted side-effects).

I also tried graded exercise, acupuncture and probably other things I don't remember.

I was not ready to accept my illness and wanted nothing less than full recovery. I was determined to recover and get back to what I was before.
I was told during my first crisis that within a few weeks I will be back to normal and I was expecting this promise to be kept.

I blamed myself for being too determined, then blamed myself for not doing enough and then realized that there is a reality I have to accept.
After 10 months of being nearly bed-ridden and very far from what I wanted to be (following "very effective" treatment), I am grateful for what I have and my perspectives have significantly changed. (not that I ever stopped wanting to fully recover from this illness, but it is not a major issue in my life any more).

That being said, I am trying to understand where you are.

The point I am trying to make is that most MG patients will have significant improvement and better control of their illness with the currently used treatments (or possibly even without, as suggested by some small historical studies), but most will not have full resolution of their symptoms and will require some adjustment in their life-style.

Yes, I am sure we can all understand when you say-"what's the point of being able to do more if I don't do more? I might as well still be unable to do more. What's the point of saving up my energy if I never get to spend it? That was my mindset". I am sure most, if not all of us have experienced that and many of us more than once.

But, the price of that is a less stable disease, more ups and downs and less predictability of what can and can not be done. And also (what I call the MG paradox) being able to do less. As well as possibly worsening of the illness.

Just like a patient with diabetes can't take insulin and keep on eating cakes. I don't think a patient with MG can trust the medications to do it all.

This does not mean that you have to give up your dreams and plans. It just means that you may have to find the way to do them somewhat differently.
It is not an "all or nothing" situation and there are lots of in-between options.

[pingpongman]

Yes Alice more please.
Mike