Side Effects

Today I want to talk about side effects. Many people get handed a medication, don't read through the papers that come with it, and sort of shrug off the possibility of anything bad happening... yeah right? Me? Nah.

For me, and for many people with chronic illnesses, especially specifically regarding MG, that is different.

I'm just going to mention some of the many medications I have been given and the side effects they caused me. Some, because no joke within 9 months of misdiagnoses, I was placed on 50 different medications. I kept track. So I'll only talk about the most serious side effects I encountered.

I hope this brings awareness that the word "medicine" doesn't always mean "helpful" or "a fix". In some instances, the side effects could be worse than what it's being used to treat. In some instances, side effects could mean the cause of a life long problem to deal with. And in some instances, yes rare but possible nonetheless, side effects could mean death. If not for yourself, read this to understand for another- another who is dealing with many medications day in and day out and all the side effects that come along with them in addition to the illnesses they fight.

Disclaimer- I am not a medical professional of any sort. I am merely discussing my own situation and what could be possible for others. Do not use this as medical advice and always talk to your physician before starting or stopping any treatment.

• Levaquin- This is an antibiotic I was given to treat the pneumonia that started this whole thing back in 2010. After just one pill, ONE pill, I stiffened up like the tin man. Nearly every joint in my body was in pain, tendons popping audibly and felt in the inside, difficult to move. This medication has a black box warning for possible tendon rupture. Since this medication, this ONE pill, I now have joint and tendon problems that flair up whenever they want and I have to take flax seed for inflammation. I occasionally have to wear support braces on my knees because of this. Another side effect was weakness in which it was hard to walk or really do anything else. That part is most likely related to the MG. Could it have brought on the MG? Possibly. Anything in the quinolone family needs to be given, if at all, only very cautiously to anyone with MG. It could bring on crisis.

• Bactrim- This is another antibiotic I was given in 2012 for an infection. This could have been what forever changed my life. Taking this medication, slowly my body felt as if it was shutting off. At first we thought maybe this is it killing the infection. My heart rate, typically high (undiagnosed POTS), went very low. However then my breathing started to be affected. Every breath became a struggle. Vomiting, chills. My temperature, again typically high 99+, went low... 96. The biggest concern, my severe weakness. Weakness as in I couldn't walk. I had to be carried, down the stairs, to the car, into the ER. All of these things happening to me were listed as severe side effects and yet the ER wrote me off and I had to later be admitted to a different hospital for 2 weeks. Since this medication I've never been able to get rid of the wheel chair. If I didn't already have MG, Bactrim caused me to have it. This is another medication that could bring on an MG crisis, anything in the sulfa drug family. 

• Beta Blockers- I was given this in attempt to treat POTS just last year. The purpose of this medication is to regulate your heart rate. This messed with me in a completely different way. I had an extreme surge of energy- I'm talking like I had 20+ cups of coffee all at once, maybe even more. I was talking non-stop, pacing non-stop. After being weak for so long, you'd think that would be nice. No, it was far from. It also caused this insane brain fog. I couldn't remember what I was doing, what I was saying, how to do basic things. It like took everything that went to my brain and sent it to my body... but then my body was on super high speed... like I went manic or something. It also gave me irregular heart beats and caused more breathing trouble. The breathing scared me the most probably, because yet again beta blockers are something to be extremely cautious with in anyone with MG, again could bring on crisis.

• Midodrine- Another medication I was given to help POTS, specifically this one is supposed to help prevent the blood pooling in your legs and thus the goal to stand upright longer, less dizziness/lightheadedness, etc. Typical side effects with this include weird crawling sensations on your body. Some people can't tolerate it and stop just because of that. For me it caused severe weakness, again listed as a serious side effect. I'm talking worse than MG weakness as far as my legs are concerned. One leg would stop working. I literally had to drag it in order to move myself to a chair. I thought I was just going to topple over. At least with MG you can rest and it usually improves, or you typically have some sort of warning to stop before it gets to that point. It was as if someone took my foot and glued it to the floor. Insane.

• Prednisone- This is a steroid that was given to me twice before, maybe three times- once for MG and once for God only knows what while they were misdiagnosing me along the way. All I know is I will never ever ever ever take this medication again. I'll start with what would probably be the most minor side effect- it makes you eat like crazy- eat eat eat that's all I would do. Some people gain a TON of weight taking this, and there is nothing you can do about it. Fortunately the weight came off for me once I stopped it each time. Now more seriously, this stuff messes with you mentally in a very severe way. I had tons of horrible panic attacks, crying spells, anger fits, everything. My mood was out of control. I will never ever take this again. In addition, it's used for so many MG patients yet it has the possibility of making MG worse. I was again the rarity, it made my MG worse. 

• Veramyst- This is a steroid nasal spray. I was put on this several times as no one would listen to me. It caused drug induced acute glaucoma. Fortunately since it was acute, not chronic like my other illnesses, it went away a while after stopping Veramyst and hasn't come back.  

• IVIG- This is an infusion treatment used for MG. It's supposed to help decrease symptoms and many people get these infusions regularly either in a hospital or at home from a nurse. I had this in 2012 after a near MG crisis to try to bring me out of it. It caused a severe headache and increased breathing trouble. It felt so bad I would never want to do IVIG ever again. But some people have it worse, getting drug induced meningitis. It did help my eyes in regards to MG, very much so, but to me it's not worth those side effects for that one portion that it helped. There is also a risk of blood clots with IVIG and since I'm already at greater risk for blood clots for 2 other reasons, I don't think I could ever do this again anyways.

Again, this is only a few of the many many medications with many side effects I have had. There are much more serious side effects out there that are life long side effects. Way too often doctors are too quick to throw medication at you... without fully understanding your individual case, without understanding the risks, without your input. Remember it is YOUR body and those side effects are going to happen to you, not the doctor. I hope they don't but I also hope this makes you aware. 

Medications and treatments can be very helpful, if/when they are needed and with the right person. Some people have bodies like my own that resist medication. My body hates medication. I seem to always get the bad side effects. When your side effects are worse than your symptoms, it's time to say enough is enough. 

At this very moment I am on 0 prescription medication, only zofran as needed. Some might say that's amazing. Some might say it's stupid. Some might say no wonder you haven't improved. I'm not on 0 medication because I'm well enough to be, I'm on 0 medication because nothing works for me or it causes serious side effects that give me no choice but to stop. I'm on 0 medication because I've found supplements as alternative treatment. I'm on 0 medication because I said enough is enough.

Sometimes medication is the answer, but sometimes it's not. Always read the papers that come with the medication and make sure there are no interactions or risks with your other medications or illnesses (such as MG). Please be careful about what you put into your body. You only have one; take care of it the best you can. Good health is such a blessing, one that I took for granted until I realized how quickly and easily it could be taken away.