About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

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Prednisone and Methotrexate; Oh the Side Effects!

Prednisone and Methotrexate; Oh the Side Effects!

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I have a love/hate relationship with my medication.  I am well aware that it is saving my life but my god the side effects are not fun at all.  They are starting to work.  I can walk a lot more smoothly; I am able to get in and out of chairs and up and down stairs.  Each day I am able to walk further and further distances and I can lift my arms to brush my hair and reach things off of shelves.  I am nowhere near back to where I was this winter as I was reminded yesterday when I went to eat a piece of cake only to have my mouth muscles not respond as quickly as I am used to and ended up caking myself right in the face.  Yup, my family watched me lift a piece of cake and splat it into my own face.  Best thing they saw all day, at least I am comic relief in our house hold.  Then today my friends and I escaped for the afternoon to go check out the Dream of a Lifetime House and we wanted to see if two of us could fit in the bathtub.  Neither of us could get back out again and my friends ended up hauling me out by the waist band of my jeans.  We later found out that the whole mess was caught on film and the staff was watching the whole thing on the monitors downstairs.  They came running up to tell us not to touch anything, but they were still chuckling while they were scolding us so we were let off the hook pretty easily.  So yes, I have a long way to go but every day my movements seem to get a little bit better but there are days when I feel that the side effects from these drugs may kill me.

I am currently sitting at 100 mg of Prednisone and a dose of Methotrexate (Chemo) three times what I would normally take which apparently are massive doses and I was warned by my doctors that the side effects would be horrible.  Throughout my past illnesses with Lupus I have never had to go above 10 mg of Prednisone combined with Methotrexate so I did not have to deal with such horrible side effects.  The side effects themselves also require additional medications to counteract the damage that the drugs do so I wind up taking a handful of pills each morning, 43 pills to be exact,  and lord do they make me sick.  Taking this high of a dose of Prednisone is like nothing I have ever felt before.  First the Prednisone gives you excessive energy.  I am literally like a live wire that cannot sit still.  The other day I was waiting for blood work and found myself jiggling my legs so hard that I was bouncing the entire row of people up and down.  I am not sure how long I was doing that for as I was preoccupied with my candy crush game but I assume a long time as most of the people in the row were already making throat clearing noises and glancing my way.  It is super frustrating to have that much energy but not have the muscle strength to move around for very long so I often find myself rocking and bouncing on the spot where ever I am.  I also cannot focus on anything for longer than a few seconds at a time and find myself drifting away during conversations having to constantly remind myself to focus and listen.  I am literally like a kid suffering from ADHD.  Those poor kids, I don’t know how they sit in those classrooms all day with this much energy.  In addition, my heart is constantly racing and my level of anxiety is through the roof.  If someone drops a pan in the kitchen I am like a cat flying into action, you would literally have to peel me off of the ceiling.  My kids have noticed my increased irritation lately at their little squabbles because every time they shout at each other I fall into a fit of facial tics and heart palpitations while yelling “stop fighting you are sending me into a panic attack!”  Guilt does work and the level of arguments has come down, although sneaking up and scaring mom has become far more interesting now that they can send me airborne with one simple “Boo!”

One of the worst side effects is the excessive hunger!  I give new meaning to the word “Hangry!”  Even though I have nausea all of the time, I am also constantly looking for ways to stop the horrible hunger pains.  Thank god for weight watchers or I am certain I would have gained a ton of weight.  These hunger pains can make me a little bit cranky but I openly admit why I am snapping at everyone around me.  On the way home from weight watchers this week my weight loss buddy and me were swinging through the McDonalds drive through…. Hey, no judging, we have both lost 10 lbs now and we were counting our points.  We just don’t eat anything before weigh in night so we leave there both super hungry and being a good weight loss buddy when I asked “McDonalds?” she was as usual supportive and right on board!  So we pulled up to the drive through window and the teenager working the cash was not getting our order correct.  We kept repeating ourselves and she would always forget to say one of the fries.  She could tell that we were getting irritated and she was getting annoyed at us too so I simply told her the truth.  “We are coming from Weight Watchers and we are super Hangry so we really need to get this order right so we get all of the food!  If you want to throw extra in there, we are good with that but if we have to fight over one order of fries things may get really ugly in this car on the way home.”  She thought this was really funny and suddenly she managed to get our order correct, we even got ketchup and were sent on our way with a big smile.  I think everyone can understand the feeling of being Hangry and could empathise with our situation.

There is one positive side effect that I have always gotten from Prednisone; a weird sense of euphoria.  I am really pretty happy all of the time and it helps me to laugh off all of the horrible side effects I have been dealing with and it results in some very weird announcements in our house.

“Holy Moly, seven years without hair and the first hair I get back is on my chin!  Who wants to see it?” “What are you doing now,” “I am looking for a vest for the dog,”  “Why?” “I need to turn him into a Seeing Eye Dog, because I can’t see anymore,”  “What?  You can’t see?”  “Nope, but just think I will be able to bring him in to restaurants and everything.”

These are the crazy things I find myself saying and doing.  This sense of euphoria helps me to not panic when the problems arise because I genuinely am not upset about them and very little embarrasses me anymore.  I will literally sit down in the middle of a store, in the aisle, because I am just too tired to move on.  My awesome friends don’t mind at all either and they will sit right down with me.  They are also having fun with my shenanigans and I think we have had as much fun together in the past three months as we have had all year.  Having one of us sick has given us all an attitude of life being too short so we need to just have fun and we are grabbing every second of happiness we can get.

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Better fill you all in on my eye sight as I did slip in that Seeing Eye Dog incident.  The Prednisone has started affecting my eyes.  It came on very quickly and before I even noticed it happening I realized that I had my face only inches from the computer screen to see the words and I could no longer make out anyone’s faces.  It is like looking at everyone underwater.   Initially I did respond by trying to dress my dog up like a guide dog but later on I began to realize that this was something that should be a little concerning to me so I followed up with a flurry of messages to my doctors, brother, parents and friends announcing that I could no longer see.  Bless my friends’ hearts who responded that was great now I had something new to blog about and I could name future blogs “Live From Under the Sea!”  Ha! How do they always know the right thing to say?  I go to see the eye doctor tomorrow to check up on the pressure the fluid is causing and to make sure that cataracts and glaucoma has not started as these are both side effects of being on this high of a dose of Prednisone but my doctors have assured me that this is most likely just fluid buildup behind my lenses from the excessive swelling that the drugs cause in your face.  Like I needed reminding that my face is starting to inflate like a beach ball.  They explained that it is not permanent and will go away as my dose goes down but then reminded me that this may not be for some time. Sigh. So I literally am looking through water.  I feel like I can live with this except for the eye strain and pressure in my head near the end of the day after straining to see the computer screen all day as my job requires me to be on the computer for a large portion of the day.  I am hoping that the eye doctor can hook me up with a set of reading glasses that may help while I am on the medication so I can stop having my face pressed close to the screen like I am Mr. Magoo.

Another embarrassing side effect are the horrible hot flashes.  These are no light hot flashes either.  I will go from feeling normal to suddenly feeling like my skin is burning off of my body.  My skin even changes colour.  My kids will announce “She is red,”  “Now she is white” “Now she is white with red spots!” “Now just her nose is bright red!”  I have turned into a sweaty, hot chameleon.  In addition to my skin burning I will suddenly be soaked with sweat and I never sweat.  I have Sjogren’s disease which causes me to sweat far less than the average person but this medication has caused me to completely soak through my entire outfit in a matter of minutes.  I am jumping in and out of the shower all day and changing my clothing all of the time.  It puts me in a state of panic though as I never know when it is going to happen.  My husband and I were in line at the toy sale yesterday when I started to burn up.  He watched as I remove layer after layer of clothing tying them all around my waist.  My skin turned bright red as we stood waiting and the exertion of having to stand in line soon had me soaked like I had jumped in a swimming pool.  Nice!  When I am not overheated then I am completely freezing and my hands and feet are like blocks of ice which I am constantly shoving under my husband’s shirt or sticking under the bottom of which ever child sits down beside me on the couch.  The thermostat in our house is constantly being adjusted and all family members are either walking around in blankets because I am having a hot flash or are in shorts and t-shirts because mom is freezing again.

And oh the nausea and stomach upset is awful.  I wake up in the morning feeling pretty good and then I have to take my medication.  I absolutely hate it and I know that within the hour my stomach will be rebelling against everything that was just put into it.  My husband phones every day to remind me to take my meds as he knows that I am at home stalling and putting it off as long as I can.  The prednisone is the worst of the pills as it also tastes terrible.  The pills begin dissolving in your mouth almost immediately and have a strong taste of cleaning fluid that immediately fills your mouth.  The pharmacy will also only give you these pills in 5 mg tablets, which means that I have to take 20 of them in one dose.  I place these poisonous tasting tablets in my mouth one after the other while chugging massive amounts of water and gagging and choking my way through.  My husband felt that I was being dramatic so I touched one of the pills to his tongue, just touched it and he was grabbing for the glass of water too.  They are terrible.  Then I follow up the prednisone with the zinc, iron, vitamin D, and probiotics that are designed to make sure that I absorb the medicine properly.  These meds make sure that, even though I am sick to my stomach, I can’t go to the bathroom and am thoroughly constipated until it is time for my weekly Chemo dose.  I then have to take a bone loss tablet which makes my stomach really ill because the Prednisone I have had to take in the past has already made me develop osteoporosis and the doctors are desperately trying to stop me from having too many breaks which has been a bit of a problem for me in the past.  Finally, once a week I have the joy of injecting myself with a vile dose of methotrexate which is a form of chemo.  Some people have little side effects from the chemo but I have never been lucky in that area.  The methotrexate has always made me sick.  I am fine for about a day after my injection but soon can feel the nausea, diarrhea, shakes and fever that will be my friend for the next three days.

Phew!  That is a lot of complaining but I really did want to give everyone a good idea of what these drugs can do.  That being said I don’t let this hold me back.  I refuse to let this illness get the best of me and I will venture out into the world as much as I can even on those days that I get sick.  The result is not always that great.  Last weekend I dropped my son off for his football game the required two hours before it started and headed to the mall to get some Christmas shopping done.  I ended up driving all of the way to Place D’Orleans to spend an hour in the public washroom throwing up.  Perfect!  I did get some Christmas shopping done though so I left the mall feeling pretty accomplished and I had completely emptied myself so I had no problem sitting through the whole football game munching on Twizzlers to try and get the poisonous chemical taste out of my mouth.  Everyone around me has learned not to make a fuss about it either.  At lunch today with my friends I had to disappear and deal with a bout of nausea in the bathroom for about 20 minutes and they just gave me a pat and asked if I now had room for desert.  I am always ready for desert.  They all know that they aren’t going to be able to hold me back.  Sometimes it is a struggle to get things done and be out in the world when I am feeling poorly but the feeling of accomplishment that I get after doing so gives me a high far greater than the comfort I would have gotten staying at home.  A trip to the mall can make me feel like I have climbed my own little mountain and I go to bed each night knowing that I tried my hardest each day.

Although these medications are truly horrible and tend to make me feel like dirt I am grateful that they exist and I know that this is only temporary.  I am very blessed that I have a condition that can be managed as I have friends who not only take much worse drugs but are taking them to try and save their lives.  For me it is more of a nuisance that must be dealt with for now and although I look forward to remission and a time when I no longer have to take them I will continue having fun, going out and enjoying my time with my family and friends because this beautifully broken life still has a whole lot of fun in it even if you have to stop to throw up along the way.

 

2 Comments

  1. Sharon Cervantes

    15th Jan 2017 - 2:50 pm

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About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

Stay Connected

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