Drug induced MG
 

I've been diagnosed with lupus/SLE in 2012 and have been on mycophenolate and Plaquenil (an anti-malarial used in the treatment of lupus) until this summer when mycophenolate stopped helping. The rheumatologist changed it with ciclosporine and continued with the Plaquenil as usual.

In the first month of taking ciclosporine I had blurry vision in my right eye that went away rapidly. I went to have it checked, however, but all was ok. I then needed to increase the dose of ciclosporine to get to the therapeutic range for lupus. The day after starting the increased dose I started having blurriness in my left eye and also difficulty opening my lid to that eye during the night.

I left it like this for few days thinking it is a side effect and the body will soon get used to it. It didn't. I went to emergency twice with my eye. They did all the tests possible but my eye is fine. The ophtalmologist said, however, that the combined ciclo and Plaquenil may have exacerbated the side effects of Plaquenil.

Spoke to rheumatologist and he's told me to stop taking both drugs for two weeks. There is no improvement. Not only that but yesterday and today I'm having a feeling like something is stuck in my throat. I can still swallow at this point in time but the feeling of having swollen throat is dreadful.

I've looked into Plaquenil and there are some articles online suggesting that it could cause temporary MG. Temporary as in 2-6 months.

I am now seriously worried. It wasn't enough to have lupus, now I have to worry about this too.

Has anyone experienced drug induced MG? If so, how long before it removed itself and mor importantly, has it ever resolved itself?

Hi, Purpletop. Welcome.

I'm sorry you have lupus. It can be managed, but it's a really tough disease. Just like MG, it has triggers that make it worse.

The anti-malarial drugs can cause drug-induced MG, or can exacerbate it.

http://neuromuscular.wustl.edu/mtime/mgdrug.html

What you need to do is get yourself to a neurologist right away! It doesn't matter if you have drug-induced MG or might have it permanently. You need to be evaluated and possibly have treatment for it. Only a neurologist is qualified to do that!

And it doesn't matter if you aren't diagnosed with MG (temporary or permanent), if you can't swallow, breathe well, or move well, you need to dial 911. There's something called a myasthenic crisis that can be life-threatening and it needs immediate care. Don't be freaked out by that, just know what you need to do and when. :hug:

The problem is that even if someone else experienced drug-induced MG, there's no way to know if that will be your experience. My Mom had it from Ketek/Telithromycin and she was lucky that her symptoms went away right away with the cessation of the drug. That isn't always the case. Neurontin, for example, is another drug that can cause or exacerbate MG.

Go to www.myasthenia.org to see the other drugs that might cause MG to be worse. Since you might be sensitive to this reaction, you need to be aware of the other drugs that can do it (also in the above article).

There are people who have both MG and lupus. No, it's not "fun." But there are treatments that can help both at the same time.

The best thing right now is to take it easy and get to a neuro ASAP. Or to the hospital if you get worse. BTW, extremes of heat and cold can make MG worse, not only drugs, infections, stress, lack of sleep, etc.!

I hope you'll be okay and that this is only temporary. But you still need help, so find a neuro, okay? Or have your rheumy refer you to one. A MG expert would be best.

Annie

Thank you, Annie, what an amazingly concise and useful reply! I'm based in the UK. Both GPs at my local practice were reluctant to send me to a neuro - they sent me to my rheumy, for him to deal with it. I can't see my rheumy's until this Friday at 5pm and the next available (private) neuro that appears on paper as having useful experience is next Tuesday.

Because lupus is such an unpredictable disease, as is MG, I'm expecting reluctance to believe my symptoms when I see the rheumy's. If he doesn't believe me, then he won't send me to the neuro. So I have to again make an effort to convince him there is a case to answer here.

I know we are all different but we cling to any little hope - so your story about your mum recovering made me a bit calmer, thank you.

I get the urgency re breathing - good thing to point out, many thanks, I feel prepared now.

Autoimmunity is a pain, huh?

Yes, AIs are completely useless and should be abolished. ;)

I wondered if you were in the UK. The system isn't perfect, and the neuros tend to be arrogant and condescending, but you can work with them.

The way you can tell the difference between lupus and MG is simple. MG is fatigable, meaning that the weakness and symptoms fluctuate. They can be relatively worse the more you do, and, again, relatively better with rest/drugs.

A big example of that is the ptosis/eyelid drooping you described. That is not related to lupus, but to MG. Same with the swallowing and breathing (that's variable, right?). So that is what I mean by fatigable (fancy word for "weaker").

MG is tricky, too. It can tank rapidly. It's not only the breathing, but the swallowing and moving. And it's very hard to predict.

Document all of this! Write it down. Take photographs of your face when it's drooping, etc. If you have a "witness" to all of this, that will help, too! That shouldn't be necessary, but I "get" how the UK system is after speaking to so many within it.

Okay, just take it easy!!

Annie