[laurid8967]

Hello everyone-
My name is Lauri and I am Dxd with SLE (lupus) for the past few years. My lupus is pretty severe, having attacked my kidneys last year and my lungs before that. THis past fall, I was in somewhat of a remission (you know how it is...never feel GREAT, but functioning pretty well) and was able to be off my prednisone after 10 months.
In Dec, I began flaring (swollen joints, extreme fatigue, rash, headaches, vision problems, etc) however, something very different began occuring. For one, Ihad EXTREME weakness and shortness of breath(very diff from anything before). Also, I had a severe, pressure-like headache on the left side of my head like there was an air bubble in there getting bigger and bgger. One evening, the "bubble" felt as if it burst and I "blipped" out for a few seconds. I immediately thought I had had a seizure (had a few years ago). I ahd another the next day, and they continued on and off for a few days. My doc immediately thought CNS Lupus (attacks the brain and nervous system) and referred me to a great neuro.
The neuro ordered a TON of tests, but the initial EEG was abnormal with NO seizure activity. Over the next couple of weeks I had brain MRI, EMG, 2nd EEG, neuro exam, blood work, Xray, etc. My reg doc put me on 60mg prednisone and 150mg Imuran (in addition to ton of meds Im already on). Now, my lupus sxs started to get under control (fatigue less, swelling down, rahses cleared, etc) but the weakness got worse and worse. The test done showed that Yes, the lupus was attacking the brain (inflammation on MRI, EEG) but the neuro felt strongly that I also had MG due to fatiguable weakness, my difficulty swallowing and chewing, and vision issues. (Incidentally, we always thought these problems were caused by the lupus, but they werent being resolved like the other sxs with the meds).
Now, I went this past week for a RSST? The neuro put an EEG-like wire on my wrist and then my jaw and sent signals (like zaps) to these areas. Their conclusion was that they "didnt cpature it" but that that was common. He apparently does not do the Tensilon test, OR SFEMG unless they HAVE to(?). They gave me Mestinon to take home to start at 30mg every 8hrs the 1st day, up to 6hrs the next, 60mg ev 8hrs the next, then 60 every 6 the next(sorry if confusing). Now, the first day, trying NOT to get my hopes up though, (NOTE - I do NOT want another AI disease, Ihave my hnds full as it is, than you very much. But the thought of having a med that can help THAT FAST? THat is something we DONOT have with lupus), I was able to actually make dinner for my family for the first time in two months! BUT!! The next day was my first day going down to 25mg on pred, and up to 200 on the Imuran. I was hoping now that the Mestinon dose was to be increased a little bit that I would feel even better...nope. I felt LOUSY ALL DAY. Now, I dont know if it was the prednisone being DEcreased, the Imuran being INcreased, or just a bad day with my lupus? But the Mestinon did not work...
My question is (Im SO SORRY about the long post)does that mean it WONT work? Do I need to just keep on with the increased dosage and see what happens? Uuuuggghhhh...this is longest flare Ive EVER had (I am STILL unable to do much at ALL - I get so weak - my legs literally are so weak it hurts to walk and I cannot get any breath (Xrays are clear - no attack from lupus). Its like the lupus is pretty much under control, but this issue with weakness is still keeping me debilitated.
I thank you all for ANY suggestions in advance . Sorry again for the long post!! Hope everyone here is feeling "OK" (Im aware that sometimes OK is a GREAT thing!!)
God Bless you all
Lauri

[AnnieB3]

Hi, Lauri. Welcome.

I'm not doing well right now but will post a little. Did your docs do the Acetylcholine Receptor antibody tests (binding, blocking and modulating)? Since you are immunousuppressed, they may not come back positive. Who you really need is an MG expert to evaluate your situation. A SFEMG may be negative too while on those drugs. Just like they make lupus "disappear" they will make signs of MG disappear too.

I'm sorry your lupus is so bad. The kidney involvement is so hard to handle. I don't have lupus but volunteered to the local organization for ten years. It's a horrid disease. I do know of a few people who have had lupus and MG.

Have you been to either of these two websites?

www.myasthenia.org
www.mdausa.org

Some drugs, even some for lupus, can be relatively contraindicated in MG. Do a search here for that topic.

Mestinon is a good drug for most people with MG. It is not easy to determine what the best dose amount and how often to take it right away. With Mestinon, if you get too much of it, you can get weaker. Same with not enough! Some docs start with lower dose amounts and slowly increase. You really need an expert to guide you through all of this.

It's pretty tough to have a new disease - another learning curve. One, make sure you have it. Two, get an expert to help you deal with it (by way of a 2nd opinion).

I hope you can figure out what works for you. Hang in there.

Annie

Have they checked your thyroid and electrolytes lately? B12?

[Maxwell'sMom]

Hi Lauri
I don't think it means it won't work, it's sounds like you have lot going on in your body, and with your meds. I have met MG'ers who took Mestinon, and it did nothing for them, and they were sero positive, so the MG diagnosis wasn't a question. They got on prednisone, and other immuno suppressant drugs, and those worked for them.
You said you had an increase of Imuran? I had a horrible experience with Imuran, it made me violently ill. It's possible it could be doing it, and it is also possible that the decrease in the Prednisone is making you ill. You have some serious variables that can be causing you to feel so bad.
And I would guess, it would be hard to tell if Mestinon was working with all that going on.
Hang in there, and take it one step at a time.
You have a lot on your plate right now, and I do understand you not wanting another AI disease, but the possiblities of having more than one, are pretty high. "They tend to like to hang out with each other"
Best of Wishes
Much Love,and Prayers
Lizzie

[laurid8967]

Lizzie and Annie - thank you for your replies. Your both so right about SO many variables to consider. Even with just the lupus, its hard to differentiate between a flare, meds or a plain old infection when not feeling well.
Incidentally, my earlier post was from this morning and it is now 12 hrs later. I felt better today than I have in a LONG time. Was up and about for a couple hours at a time without feeling weak or winded. But - again - dont want to jump to any conclusions yet...keeping it in the day - sometimes the moment(as Im sure many of you are familiar with) and will continue the meds as directed.
Praying tonight for wellness for all...grateful to have found this site
Good night and God bless
Lauri

Originally Posted by Maxwell'sMom

Hi Lauri
I don't think it means it won't work, it's sounds like you have lot going on in your body, and with your meds. I have met MG'ers who took Mestinon, and it did nothing for them, and they were sero positive, so the MG diagnosis wasn't a question. They got on prednisone, and other immuno suppressant drugs, and those worked for them.
You said you had an increase of Imuran? I had a horrible experience with Imuran, it made me violently ill. It's possible it could be doing it, and it is also possible that the decrease in the Prednisone is making you ill. You have some serious variables that can be causing you to feel so bad.
And I would guess, it would be hard to tell if Mestinon was working with all that going on.
Hang in there, and take it one step at a time.
You have a lot on your plate right now, and I do understand you not wanting another AI disease, but the possiblities of having more than one, are pretty high. "They tend to like to hang out with each other"
Best of Wishes
Much Love,and Prayers
Lizzie

[Joanmarie63]

Welcome to a great site for input and support.

I was tested for Lupus many years ago and finally DXed for the MG. It seems to me they have you on so many meds your body doesn't know what to do.

Sometimes our bodies rebel against all the meds and we need to "start over" Talk to your Dr and ask if they can readjust your meds and start fresh. MG is so tricky and so confusing, and when you have more than one AI illness than it is even more difficult. I know, took that trip.

I hope all works out and you continue to keep us updated.

[EllenW]

Originally Posted by laurid8967

Hello everyone-
My name is Lauri and I am Dxd with SLE (lupus) for the past few years. My lupus is pretty severe, having attacked my kidneys last year and my lungs before that. THis past fall, I was in somewhat of a remission (you know how it is...never feel GREAT, but functioning pretty well) and was able to be off my prednisone after 10 months.
In Dec, I began flaring (swollen joints, extreme fatigue, rash, headaches, vision problems, etc) however, something very different began occuring. For one, Ihad EXTREME weakness and shortness of breath(very diff from anything before). Also, I had a severe, pressure-like headache on the left side of my head like there was an air bubble in there getting bigger and bgger. One evening, the "bubble" felt as if it burst and I "blipped" out for a few seconds. I immediately thought I had had a seizure (had a few years ago). I ahd another the next day, and they continued on and off for a few days. My doc immediately thought CNS Lupus (attacks the brain and nervous system) and referred me to a great neuro.
The neuro ordered a TON of tests, but the initial EEG was abnormal with NO seizure activity. Over the next couple of weeks I had brain MRI, EMG, 2nd EEG, neuro exam, blood work, Xray, etc. My reg doc put me on 60mg prednisone and 150mg Imuran (in addition to ton of meds Im already on). Now, my lupus sxs started to get under control (fatigue less, swelling down, rahses cleared, etc) but the weakness got worse and worse. The test done showed that Yes, the lupus was attacking the brain (inflammation on MRI, EEG) but the neuro felt strongly that I also had MG due to fatiguable weakness, my difficulty swallowing and chewing, and vision issues. (Incidentally, we always thought these problems were caused by the lupus, but they werent being resolved like the other sxs with the meds).
Now, I went this past week for a RSST? The neuro put an EEG-like wire on my wrist and then my jaw and sent signals (like zaps) to these areas. Their conclusion was that they "didnt cpature it" but that that was common. He apparently does not do the Tensilon test, OR SFEMG unless they HAVE to(?). They gave me Mestinon to take home to start at 30mg every 8hrs the 1st day, up to 6hrs the next, 60mg ev 8hrs the next, then 60 every 6 the next(sorry if confusing). Now, the first day, trying NOT to get my hopes up though, (NOTE - I do NOT want another AI disease, Ihave my hnds full as it is, than you very much. But the thought of having a med that can help THAT FAST? THat is something we DONOT have with lupus), I was able to actually make dinner for my family for the first time in two months! BUT!! The next day was my first day going down to 25mg on pred, and up to 200 on the Imuran. I was hoping now that the Mestinon dose was to be increased a little bit that I would feel even better...nope. I felt LOUSY ALL DAY. Now, I dont know if it was the prednisone being DEcreased, the Imuran being INcreased, or just a bad day with my lupus? But the Mestinon did not work...
My question is (Im SO SORRY about the long post)does that mean it WONT work? Do I need to just keep on with the increased dosage and see what happens? Uuuuggghhhh...this is longest flare Ive EVER had (I am STILL unable to do much at ALL - I get so weak - my legs literally are so weak it hurts to walk and I cannot get any breath (Xrays are clear - no attack from lupus). Its like the lupus is pretty much under control, but this issue with weakness is still keeping me debilitated.
I thank you all for ANY suggestions in advance . Sorry again for the long post!! Hope everyone here is feeling "OK" (Im aware that sometimes OK is a GREAT thing!!)
God Bless you all
Lauri

Hi Lauri,
I also have MG and Lupus! Not a fun combination. I take Cellcept, 2000 mgs per day, and 60 mgs of Mestinon four times per day and a Mestinon Timspan and bedtime. The Cellcept allowed me to et off Pred when I was origianlly only dianosed with a Lupus illness. I didn't get diagnosed with MG for a few more years and that's when Mestinon was added. The Mestinon really helped me feels stronger. Lately I feel like it may not be working quite as well as it did initially. I don't call my neuro all the time. Mainly because he'll just keep uping dosages or send me for surgery. My neck seems to be sinking into my shoulders and it hurts when I move my arms toward my back. But i'm coping! Thought I might be the only person with MG anbd Lupus. Welcome to my world!

[laurid8967]

Hey Ellen -
Wow - another lupie with MG. Or should I say another MGer with lupus! I was officially Dxd with lupus 2 yrs ago, but was sick and undiagnosed for a long time before that. Im on Imuran 200/Plaquneil 400/ and down to 20 on the prednisone (though I started to get mouth and nose sores with the decrease so may have ot go back up to 25mg).
I have (since my first post) found the Mestinon working as well, though I find it a little inconsistent? But DEF more strength than I had...Im currently on 60mg every 6 hours. Ive been looking through the posts here and have found that this med is very induviualized, and that I probably need some time to find what works well for me.
Id like to thank everyone for their replies Ive found that I can learn so much from other patients experiences with regards to meds, etc. and Im grateful to have found this site.
I continually pray for the wellness of my fellow MGers and lupus sufferers...and hope this post finds others feeling ok.
Again thank you and look forward to learning more
Lauri