Is remission unreasonable?
 

When I met my neuromuscular specialist, he was doing my SFemg which was positive. He talked about treatment options like mestinon, steroids, cellcept, thymectomy, IVIG and plasmapharesis. I knew from this forum that they were all the typical treatment option for MG. So I was very confident in making him my doctor for MG. Since then, all the treatment I received was mestinon, steroids (weaning off) and 1 IVIG treatment that went very badly.

At my last appointment, he said he would wean me off steroids for 1 more month then start a non-steroid immunosuppresant. I called him back after a month and he has no further treatment options for me, just mestinon.

Is wanting to try for remission unreasonable? He laughed at me when I asked about thymectomy. He said thymectomy is only for patients with tumours, although the recent literature says differently. He mentioned something about treating patients of all ages equally. I am only 54, I still want to try for remission, I want my life back or at least try to get it back, before I settle for my small world.

I am going to a new neuro as well as submitting the paperwork for John Hopkins, but again, I have to wait 3 months. Will I get the same treatment at John Hopkins? Is Dr Drachman more aggresive in treating MG? Please let me know if you have been to him.
Thanks,
kathie

Hi Kathie,

Sadly, I do think actual remission is more than likely not going to happen. It doesn't happen often, especially a drug free remission. However, it doesn't mean that you can't have a functional and full life along with MG. Management and reduction of symptoms is the main goal, and if a remission happens, that's "gravy." Doctors don't go into treatment plans with remission as the sole goal.

I have a teeny bit of experience with Dr Drachman, but haven't been treated by him. I contacted him via email 3 years ago when I began pursuing the reboot option. He was very gracious, explained everything to me via email, and was more than willing for me to come to Baltimore and he'd do the reboot. As it turned out, one of his colleagues had recently transferred to Dallas and I was able to do it there.

If offering to do a reboot via email isn't aggressive, I don't know what is! He is experienced with all of the immune suppressors, so I believe he could help you find something that you can tolerate, and hopefully will give you some symptom relief.

Sorry you are having such a tough time. Keep fighting!

I don't think it is unreasonable to want remission, who wouldn't if it is at all possible? At the very least, your doctor should want to explore every available option to get you more functional.

Your doc shouldn't be making you feel worse by laughing at your questions. One question though, after (s)he laughed, were you told a reason why you wouldn't be a good candidate for a thymectomy? If they think a question like that is so 'funny', there should be an easy answer. Was there?

I hope you keep looking for a path to remission. Good luck on that path.

Hi Kathie - I was diagnosed at 50 and had my thymectomy at 55. My scans did not show any thymic tumors or any other problems. However, I had to have a biopsy of lymph nodes in my chest for another issue, so I insisted they do a thymectomy. My neuro at the time agreed with me and they actually found a Stage II malignant tumor in my thymus for which I had 28 radiation treatments. I did not go into remission, but I did work for 5 more years before I had a bad mg relapse that finally required me to retire on disability.

So the moral of my story is that no doctor is always right and if you feel in your gut that you need more aggressive treatment, you do need to find another doctor. I don't know that remission is around the corner for you, but you definitely have a right to live as full a life as possible.

Those are very wise answers from the other posters......

• I think that it is reasonable to hope that your symptoms will get better

• I think it is reasonable to expect that you will have a better working relationship with another doctor

• I think it is reasonable that you don´t give up hope

Hope by itself will not cure a disease like MG, but I do often believe that hope draws opportunities to us whilst despair pushes them away :circlelove:

Something to think about....

How much does insurance coverage have to do with treatment options?

The reason I ask this is that when I had cadillac insurance, there was no end to the tests the my docs thought I should have, the treatment options that were discussed, etc. (And I not just talking about MG related)

Now the cadillac plan is no more...my insurance coverage is VERY minimal...and no one in the medical community seems as aggressive with treatment options.

Perhaps it's just my imagination (don't really think this!) - - but what are others experiencing?

Hi Kathie,
Your last post confirms that the neuro you have been seeing is not an MG expert: start steroids, wean off and THEN start an immunosuppressant is a bizare prescription. You should know that immunosuppressants may take quite a long time to act, some for several months or maybe a year. That´s why usually steroids AND immunosuppressants have both to be taken for quite a period of time to give a chance to the immunosuppressant to kick in and only after that, start tapering...
I think you´ll be in better hands with Dr Drachman.
Maurice.
You should have a look at
http://neuromuscular.wustl.edu/mtime/mgrx.html

Thanks everyone. I was beginning to think I was being irrational for expecting more. The resident wanted to send me to some specialist doctor that tried to help improve the quality of my life. I am not ready to settle yet. I feel I have not even begun the fight (treatment) yet. I just have to wait 3 more months and hope Dr Drachman takes me on.

Maurice, this is an excellent link for treatment options, giving the dosage and how to wean off the pregnisone. I knew the method they were using did not seem right. This really helps me since it looks like I am on my own until the new neuro appointment in early October. I did not follow the resident instruction of 15 mg every day and instead tried to mimic everyone's else past experiences. I am felling much better. The headaches, muscle and joint aches have subsided. Even the fatigue is a little better. I feel like I can hang in there for the new neuro and Dr Drachman. Before I did not even feel functional.

Thank again everyone, I do not know what I would do without this forum,
kathie

I saw my new neuro today. She did the most thorough exam I ever had. She seemed surprised I was walking without a mobility aid. We did discover that without my prism glasses, everything is double vision now.

I am down to 10 mg of pregnisone now. I am extremely fatigued at onlt 10 of pregnisone. My new neuro wanted to know why I was not on cellcept or imuran. That was my question. She upped my mestinon to 90 x 4 and the 180 at night. She is gathering all my records. She is also performing upper and lower Emg on my limbs.

I was sent back to the rheumy by the gastro for more autoimmune testing. They ordered a bunch more antibody test for lupus, Sjorjens and others. I told him he was right about the MG. He said he has another patient at his other office with probably MG and asked who diagnosed me.

I think the new neuro will treat more aggressively.
Finally,
kathie