Wednesday, November 05, 2008

I'm Putting On My Nurse's Cap...

Yes, in the picture, that IS dear Florence Nightingale or Sister Flo...patron saint to all nurses. And no, I am NOT Florence Nightingale by ANY stretch of the imagination. Heck, in some medical circles, I'm not even considered a "real" nurse because I work in psychiatry!

But I thought I'd share with all y'all some *tips of the trade* in regard to IV Solumedrol/steroids and oral Prednisone. Since my personal financial DEBACLE while on IV Soly, I'm probably the LAST person who should even be talking about this subject. LOL And then again, this may actually qualify me as an *expert* on the topic...who knows.

Of course, any time I address ANY medical issues here on CHEESE, I feel compelled to add a very serious disclaimer...the disclaimer being, "I AM NOT A MEDICAL DOCTOR". Any concerns you have about your own condition or medications should be discussed with your physician. I only PLAY a doctor on CHEESE/the Internet at times...much like Marcus Welby, M.D. did in the late 60's and early 70's. And THAT show only ran for about seven years, so... :-)

So, back to the topic at hand: IV Solumedrol/IV steroids and the use of oral steroid agents to treat Multiple Sclerosis relapse.

Anyone who has been mindlessly following the *story* line here on CHEESE of my MS saga and treatments knows I have had several series of IV Solumedrol pumped into my system over the past 5 years since diagnosis (as well as most of the disease-modifying medications, but that's a different story). Some of you have been bold enough to ask "why?", while others either thought this treatment was basically fine or simply didn't question. Either way, I'll respond here to explain.

When I first began seeking treatment for my personal brand of MS, I advised my physician(s) I wanted to do whatever was possible to keep me working the longest without impending disability or loss of my job. For a physician dealing with all the uncertainties of Multiple Sclerosis, that's a tall order to ask. And for a patient with MS, that's a thin line of rope to balance upon (especially WITH balance issues!). When in a relapse, I am constantly (as is Dr. SWWNBN) weighing out how LONG to allow my body to simply REST and how SOON it would be appropriate to TREAT the relapse with steroids.

Because I cannot afford to be out ill from my job for extended periods of time (or risk LOSING my job and thus having no INSURANCE!), and because of the type of occupation I have which requires all of my faculties working, I cannot go to work *half baked* or partially functioning. I do not have a desk job and must be capable of rapid, physical response if needed for my own safety and the safety of my coworkers and clients. In other words, it's ALL OR NOTHING at my job...I'm not at liberty to experience extended periods of vertigo, numbness, incoordination, cognitive changes, etc. So, I choose to TREAT most relapses fairly quickly with what has PROVEN to be effective for my own brand of MS...STEROIDS. This is a prearranged agreement I have with my physician(s)...and we can discuss WHY I don't find a different job that is more accommodating to my physical needs at a DIFFERENT time, but not now. :-)

Most of the time, Dr. SWWNBN will order a flat series of IV Solumedrol for either 3 or 5 doses...that's one IV a day, 3 or 5 times. The usual dose of cocktail for ME is 1,000mg...for some, it's 1500mg. And for other MSers, it may even be LESS than 1,000mg. I have a hard time tolerating anything in a higher dose than the even number of ONE THOUSAND, so that's what gets popped into my veins.

I head up to Club Med and have an indwelling catheter (IV or Heparin lock) placed (usually in my hand now, because my veins in my arms were blown from IV Phenergan while hospitalized a couple of years ago...sigh), which stays in my hand for as long as it will remain patent (usable)...sometimes the entire 3 days, sometimes not. I'm just fickle that way. I bring home latex gloves and tape that I can use to cover my hand (taping up the arm opening while on my hand to make a water-proof seal for showering) whenever needed for basic hygiene or dish washing purposes. I prefer to only be stuck ONCE if I can get away with it...because finding a second site for an IV start can get tricky on me.

Steroids are powerful drugs. IV steroids are even more powerful than oral. Interestingly enough, I oddly TOLERATE IV steroids much better than oral Prednisone, as the Pred. tends to make me battier than a bell ringer (but we'll get to THAT issue a bit later)!

Methylprednisolone, or as we know it to be called Solu-Medrol here in the States, is a powerful synthetic glucocorticoid steroid. It is primarily used as an anti-inflammatory which, in theory (please don't make me explain the theory of MS lesions here?!?), lessens the inflammation in the brain of an MSer, thus relieving symptoms CAUSED by that inflammatory response (relapse). But, like ANY drug that has a benefit, THIS particular drug comes with a rap sheet of potential problems (side effects), too.

For instance (and this is just for starters), Solumedrol can have an immediate affect on a MSer's metabolism and their immune system. In layman's terms, it can make one EAT LIKE A HORSE and not even KNOW THEY ARE ILL if they come down with SOMETHING LIKE AN INFECTION. It is not known WHY IV Soly (or steroids in general) cause such weight gain/stimulate the appetite (again, consult your OWN physician here, because sometimes people report LACK of appetite with this drug!), but it is a serious side effect that can occur. I will typically gain anywhere from 5-15 pounds when on steroids, depending on how long the course of treatment is...and I REALLY can't afford to pack on the pounds here...seriously!

It is always important for me to be aware of signs/symptoms of *other* opportunistic infections popping up whenever I am on steroids because the drug "masks" these symptoms. MSers typically report an increased occurrence of bladder/kidney infections, or respiratory infections, and/or poor wound healing. Of note, steroids ALSO can increase a person's WBC (white blood count...the cells responsible for fighting infections) well above *normal* range, which certainly doesn't make sense at all if steroids ALSO can increase one's risk for DEVELOPING an infection, now does it?!? I had to argue with a doctor once in an ER (got sick with an Adenovirus right after IV Soly treatment) that my elevated White Count was NOT due to infection, but most likely due to Soly treatment...he STILL insisted on other tests (like chest X-ray, Urinalysis, etc.) to *rule out* an infection, only to discover I was dehydrated, had a low potassium level, and had a VIRUS instead...whatever. I'm no doctor, am I?!?

IV Solumedrol can also mess with a person's blood glucose levels...messing with equals ELEVATING the level. Yes, that's right. You can ALSO develop drug-induced hyperglycemia (just like me)! I'm not a diabetic, even though I'm probably on my way to developing adult onset diabetes mellitus because I'm too frickin' fat. I typically run a blood sugar (glucose level) of around 80 (*normal*, depending on what lab you believe, is somewhere between 60 - 90 or 70 - 100). But when on IV Soly, my BS (blood sugar, silly!) can creep its way up into the 300's...and THAT'S way too high on any skinny OR fat person's scale.

If I know I'm going to be getting IV Soly, I try to rid my hut of unnecessary sugars and stock my shelves with fresh vegetables, fruits, and lots of protein items (or I have a kind friend make a store run for me). Protein DOES help to combat the rapid conversion carbohydrates will cause when on Soly because it takes the body more effort to convert protein than's simple KREBS CYCLE info here, for that scientific mind I know everyone who reads CHEESE has...(truly LOL here AND rolling on the floor laughing). I also have my own glucometer (blood sugar checker thingy) to monitor my BS (if I only had a *real* BS monitor to gauge the B@!! S#!+ that I spew THERE'S an invention!) and keep watchful eye on the increase. Because it always DOES clockwork. But this CAN be controlled with careful dietary restrictions...which is very hard to do when I am considering eating my cat's food out of binging desperation when ON IV Soly!

I take a *water pill* (diuretic) daily...I was prescribed Dyazide a few years ago (after my Rituxan Study when I developed severe hypertension) and, although my blood pressure has returned to normal for the past 6 months to a year, I just haven't seen my ARNP to discuss stopping the medication (because I'm non-compliant like that). I rather LIKE having a pill that taps off excess fluid every's a *fat thing*...Hehe.

But Dyazide (and MOST diuretics) has its own side effect of not only running the extra water out of my system, but also taking my blood potassium with it through my kidneys and causing me to pee (urinate...ehem) it out (what's called *non-potassium sparing*). Because of this, I typically run a lower or below normal range potassium level (K+ on your lab reports, which usually is found to be *normal* between 3.5 and 5.0). Unfortunately, IV Solumedrol (and MOST steroids) are also potassium depleting...I have had instances when on IV Soly that my K+ level has dropped to a dangerously low 2.8 (people tend to experience cardiac symptoms around 2.5!). So, rather than ALSO having a heart attack while on Soly, I take a prescription potassium supplement whenever I'm on steroid treatments. This ensures my K+ level will hang on to a normal range and I won't be seeing a cardiologist AND a neurologist any time soon. And, symptoms of hypokalemia (low potassium levels) can mimic MS neurological symptoms...because potassium affects how well our muscles work. Too low a level can cause cramping in the extremities and a whole HOST of other symptoms.

Other sometimes annoying/sometimes relieving side effects of IV Soly for me are, a noticeable decrease in my typical irritable bowel syndrome/diarrhea, flushing (or redness) of my face, increased acne, abdominal bloating, hand tremors, increased body temperature, and photosensitivity (lights bothering my eyes).

Now...FINALLY I swing into an area of steroid side effects I know something about. Mental changes.

Most any MSer can describe to you what it "feels" like to be on IV Solumedrol...because the mental changes the drug can cause are what we tend to notice FIRST. Steroids not only work as an anti-inflammatory on the brain, they also MESS with the FUNCTIONING of the brain. I have both observed and experienced what can only be labeled as *drug-induced psychosis* with IV Solumedrol. That's right...the mental health expert is drawing upon personal experience to provide you with this information!

It is not known WHY steroids affect the emotional/mental functioning of the brain. Some theorize it may be due to the restlessness and insomnia the drug(s) can produce, while still others believe the drug(s) actually alter the brain functioning itself, causing an interruption in perception within the brain. Personally, I think it's probably a combination of BOTH.

One of the many benefits of IV Soly I get is a decrease in my incessant fatigue level. That's because steroids cause me to have an increase in energy well above what has become *normal* for me. Steroids also cause my to experience *jitters*, irritability, and restlessness as well as an inability to sleep (insomnia). I once had an episode (early in my experience of MS) where I remained awake for over 56 hours due to steroid-induced insomnia. Needless to say, I began seeing "shadows" and movement that wasn't occurring as well as developing my own crazy brand of paranoia (well...I "thought" people who were trying to help me were actually trying to kill me and the medications they were giving me were actually poison...and THAT, my friends, is called *psychosis*). Once I was finally KNOCKED OUT by my psychiatrist and the psychiatric symptoms were treated, I returned to my BASELINE level of regular paranoia!

What I do now (knowing I am susceptible to this type of episode) is to always contact my shrinky dink and therapist (Hey! I work in the *field* and one can NEVER have too many people to talk to!) so they are on board with my treatment plan. They both step up their monitoring. Which means I can expect phone calls from either or both of them, just "checking". I also begin a low dose regimen of Klonopin at the start of my treatment just to get some benzodiazapines (anti-anxiety medication) under my belt...just in case. I have a PRN (as needed) prescription for Zyprexa, which IS an anti-psychotic medication (used to treat a host of disorders, but also psychosis), which I will generally take if I have experienced insomnia for one or more nights. I don't *like* to take the Zyprexa because it is highly sedating and also has a side effect of weight gain...but it sure beats hole-ing up and hiding behind locked doors because I *think* someone is trying to kill me! Sigh...

Steroids can also trigger serious depressive episodes (Jen, over at MSStrength, has written a wonderful and heartfelt post about this very experience) and anxiety attacks that a person might not *normally* experience. For some, suicidal thinking (or suicidal ideation) raises its ugly head while on steroids. And because the brain is already whizzing around and firing weird signals (most likely from the frontal lobe, but again, nobody knows for sure), a MSer on steroids BELIEVES or can easily buy into this thinking...because the mind has a way of convincing itself it has ALWAYS felt this way and will NEVER feel better. That's not to say the depressive/anxiety symptoms and feelings are not REAL, they are just drug-induced and not necessarily coming from the *normal* brain...or at least the part of the brain that uses reason and logic to resolve this type of experience on its own. IT IS CHEMICALLY-INDUCED.

MSers are already at a very high increased risk for suicide (I've read various studies on this phenomenon, and NONE of which, are recent studies)...anywhere from 3 to 5 times at a higher risk. Again, *speculators* (what I like to call researchers and psychiatrists!) have various theories about why this is true, ranging from depressive symptoms due to physical disability/changes and depressive symptoms due to altered brain chemistry. That's WITHOUT steroids on board. "We" may already have a propensity toward negative psychiatric symptoms just by HAVING makes sense if "we" pump a highly toxic chemical like Solumedrol (or ANY steroid) into our system, "we" might set off a dangerous chain reaction.

A few other things I do (just to be certain I keep my sanity) while on IV Soly, is to print out a list of my emergency phone numbers and keep this list by my phone and/or on my kitchen counter top. This is because I can become so cognitively impaired (DUMB, for a lack of a better word), I might not be able to LOCATE these numbers if I needed them. I usually make sure a friend or two knows I am doing IV Soly treatments "just in case" I'm not found dead 3 weeks later because my cat and I tangled while I was in a steroid-induced fit, and the CAT won! I leave this list out in plain sight because I live alone, and if a friend needed to know who to call, they could easily find my doctor's numbers on this list.

I also try never to engage in any mental activities that require concentration...which leads me all the way back to the origins of this post and my checkbook debacle! Boy, did I slap myself to remember THIS one the hard way...due to paying my bills while on steroids, I have managed to rack up ONLY $75.00 in overdraft fees with my bank...something I have never done in my LIFE! So, if you need proof of this last suggestion, well...I'm the scientific experiment. DON'T TRY TO DO ANYTHING THAT REQUIRES A HIGH LEVEL OF CONCENTRATION WHILE TAKING STEROIDS!!

And yes, that last line WAS a **note to self**...


Blindbeard said...

I never thought about taking a high dose of benodiazapines (sp?) while on the steroids... maybe that would help me. I had to take zyprezia (again sp?) in the loony bin and it made me so dizzy I almost fell in the barely warm shower and froze to death. Then one of the neurologists there, who had some serious death breath that annoyed me to the point I didn't want to listen to anything she had to say, was horrified they put me on zyprexia when I have such bad problems with balance and veritgo. I almost liked her even though I REALLY wanted her to brush her teeth before talking to me ever again.

Miss Chris said...

I think of you more as a doctor! Not a nurse...

Jen said...

Can you please become a nurse consultant? Is there such a position? Your knowledge is vast, both experience-wise and pharmaceutically speaking.

Yeah-- now I know to take a form of benzodiazapine (Klonopin-- 1 mg) before bed. Nothing else works-- I've tried Lunesta, Ambien CR, and Tylenol PM (a joke.) I get completely sleepless and crazed otherwise. It's another joke that when I went to the ER to get a bottle of sanity, the social worker who assessed me (not even a shrink because there was only one on call in the evening-- I guess she spoke with him after talking to me) didn't even THINK to give me a script for an anti-anxiety med that would knock me out. I kept saying to her,"I just want to sleep. I just want to sleep. Please give me something to sleep.." My neurologist's partner (mine was on vacation) finally had the sense to prescribe this.

I also understand about working in the medical field and always having to be "ON." As a former ultrasound tech, I could barely ever call out because I was the only one there (small imaging center.) I had to keep the pace and squeeze in other patients, then do a stat call every 3rd week at a rehab center (venous doppler exams to rule out blood clots in the legs.) I shared this with the 2 other techs at their 2 other imaging centers. Such greed on the parts of the doctors and we techs were treated like circus animals. I can no longer do this type of work due to the MS, and I honestly can't say I miss it.

Spaz Attack said...

Once again, Cheese IT, on your sane days you amaze me with your powerful insight, knowledge and journalism.

When reading your blogs it's in my nature to try to "fix" things, or offer suggestions i THINK would be helpful. Yet, your very well thought-out "letter" helps me to understand how on top of your life situation you are. Thanks for sharing this information.

I now have even greater respect for you and the validity of your health and work decisions. I'll try not to question your decisions or splurt out my "fixes." For now I'm just gonna sit back and enjoy your blogs.

the operative word is TRY, because you already know what a compulsive SPAZ I AM! :-)

Hang in there BABE!

pUNKrOCKfairy said...

I agree with Spaz, you seem really on top of your shit. I mean, I KNOW the score with SoluMedrol too, but I still feel like I gain from you sharing your experiences and tips. Some of those things I wouldn't have thought of; like juggling finances and psychosis at the same time. Plus, I'm stubborn as hell and I may refer my DH to this post so he can know what kind of things to look for when I'm on roids. I'll never admit defeat so he might have to do it for me.

Seriously, thanks for this.

Bubbie said...

It surely has been a Long Strange Trip with you these last couple of years.You certainly have been through the gambit of treatments and protocols. On one hand I'm thankful I don't need to be employed to keep my benefits, and on the other I wish I could contribute. So, I don't rush for solu unless I can't wait it out, or the flare just plain scares the hell out of me, cuz being on Solu not only scares me, but the one's I live with when I'm on it.

Denver Refashionista said...

Great post but I'm feeling super ADD and flighty so I'll just fixate on a point or two. I also know what it is like to have a job where you always have to be on and can't afford to not be 100%. The MS has made me long for something else.

I also know what it's like to become so sleep-deprived on steroids that you hallucinate. Crazy stuff!

:Pedestriancrossing-colleen said...

I am one of those people who lose weight.

My first (and so far only) treatment of steroids (3 days with the shunt in my arm) made me crazy. I guess it was really the oral steroids that made me crazy. The IVs bothered my vision. I was at my busiest time at work (computer stuff), had just been dxd with MS, was looking at back surgery (my initial problem before the MS dx!) and was so wired. I felt like I was vibrating at a different frequency than the rest of the universe.

I couldn't eat a thing. I lost 10 lbs. I ran out of the house in my pj's mad at my husband and everyone else. At 10 p.m. in the dark in November. No purse, slippers. I only knew enough NOT to get into the car. I walked and walked and walked (with my back problem and limp!).

Wonderful, wonderful neurosurgeon heard I was "having problems" and insisted on talking to me even tho I tried to avoid him. He e-mailed me "Talk to me, I can help you." So we talked. For an hour on the phone. He was very helpful and understanding. And phoned in sleeping pills which were wonderful at night, but I was still a crazy person during the day. Had to add xanax to my regular rx of lexapro!

Then I had my surgery (the steroids were so the inflammation would be reduced so I COULD have surgery). As soon as I was in recovery I realized they hooked me up to steroids again. My vision was getting weird. I cried. Neurosurgeon saw how I was upset and opted to take the steroids off the IV.

I pray I never have to take them again!

Bless you and everyone else who has to have them. And thank you for all the details. It's not like the medical professionals really tell you much ("you might gain weight; watch your intake of salt and sugar" that was it)