Prednisone

Let me just say that I HATE Prednisone. I know that some do not like that word. Hate. “You don’t really ‘hate’ *such & such* a thing.” Yes I do. From the bottom of my heart. I like to try to be positive & perhaps tomorrow will be a better day since I finally fell asleep sometime after 5 am this morning & woke up at 3 pm with my mom scolding me again as if I’m a child. As she also did last night. We both seem to be getting on each other’s last nerve lately & the Prednisone doesn’t help. I’m normally moody & impatient anyway. Something I don’t like to admit and try to hide under silence or a smile while internalizing all of my feelings. However with feeling as crappy as I do, I sometimes lash out or have brief episodes of “Tourette’s.”ย It is embarrassing afterwards but I get in this “zone” where I don’t really know what’s going on or what’s coming out of my mouth until it’s over. I am not so proud that I won’t apologize if I was wrong or even if I don’t feel like I was wrong I will sometimes apologize if I hurt someone’s feelings. Especially if that person is my mom who is always there for me and who I have probably worn out by now with my health condition(s) over the past four months. But by that time it’s too late. Apologies can only go so far and doesn’t make everything better. So then comes the guilt and depression. Along with everything else I must worry about, it is all too much for me at times. Surprise!ย It’s easier for me to just “forget” and not think about it. At least it makes everything easier for the moment. I tell myself I won’t doย it again and what do you know? It happens again.

I first was introduced to Prednisone back in 2001 when I was officially diagnosed with Lupus and Membranous Glomerulonephritis. I was seeing a handful of doctors and it felt like a full time job. I was doing that along with all kinds of tests & procedures, going to the university full time, and working full time, sometimes overtime to make up for the money that my “significant other” was gambling away faster than I was making it. I was uncomfortable aside from the constant pain that never settled in a single place in my body, horrendous headaches from hell that would not go away even with the two medications that my Neurologist prescribed (Frova worked some of the time, maybe 20% of the time) but my insurance didn’t cover it and I couldn’t afford to pay over $300 for a monthly prescription so my Neurologist would give me samples and continued to prescribe me Maxalt. I don’t even know why I kept refilling it as it didn’t help at all. It was apparent that he was not going to try to give me anything else to try and had “run out of ideas?” So I guess I was just taking what I could get in the hopes that it would someday magically work. The Prednisone made me so much more exhausted than I already was on a daily basis, I was getting so big that I couldn’t fit in my clothes anymore which made me depressed, my face became huge and round (I would say it was like a dinosaur’s head), my appearance really changed and bothered me a lot, I was very depressed, scared because I didn’t know what was going on with my health, just that I had two diseases “all of a sudden” which had no cure, and it didn’t help that I didn’t have a lot of emotional support by my family and friends. They didn’t understand any of it. They could see that my physical appearance had changed but other than that, I acted “normal,” I could still go to school and work at that time, I didn’t “look” sick, just altered by medication… But I was never one to complain about every single thing that I felt or was going through. Especially when I would share and they still didn’t understand and used it against me or accused me of making things up, or “conveniently” being “tired” to get out of going out for an all day event in the sun, or that I had a low pain tolerance if I needed pain medication and was in pain every day. Why talk about it anymore? Everyday was the same as the last, just with slight variations. So if someone asked how I was doing, I was “good.” I was “fine.” It was simpler and still is. Prednisone made me grouchy but maybe I was mostly just exhausted and physically and emotionally taxed. I was in a bad relationship and under a lot of stress in every aspect of my life. Needless to say I was very unhappy. At least this time I don’t have all of those stress factors in my life (just new ones). ๐Ÿ™‚ The good thing is that I moved home a couple of years ago. It would’ve been so hard to go through all of this completely alone if I was still in Colorado. It made me sad that my good friends stopped calling, coming by to visit, and stopped asking me to go out. I understand that sometimes I had to cancel plans and tried to explain with an apology because I was taught to keep my word, if I said I would do something or made a plan or obligation, I should always keep it. I disappointed myself when I could not do this anymore. So I stopped making plans to avoid feeling bad. I told them to please continue to invite me because if I felt okay, I would definitely want to hang out. But it didn’t work out that way. I wasn’t fun to be around anymore or cancelled one too many times. So I shut myself off from everyone and just did my own thing, except I was in that relationship where I would get yelled at every single day for hours. The same old thing repeated in different ways over and over again like a broken record. Once I finally yelled to shut up! That was a few days after my gall bladder surgery. I then got hit with a pillow in the stomach. After my kidney biopsy when I was trying to open the bedroom door to escape another cornered “battle” where I just got yelled at over and over again, I was kicked right where I had my biopsy and fell to the floor. “Don’t be so dramatic!” he said. As soon as I could get up, I reached for the door and got out of there. “It was an accident,” he said about both incidences. Hmmm. Accident. Most of the time I kept my mouth shut because I have a “smart” mouth but confrontation and unnecessary arguments I do not like and do not have time for. Especially when I’m “sick.” Once I was finally off of the Prednisone, I started to lose weight. I was so happy when I could finally see my facial features again instead of one big dinosaur head, I slowly could fit in all of my old clothes and then they eventually became baggy, I started to feel my head clear up, and I felt so much better. I told myself, “Never again.” And I declined Prednisone up until January of this year.

Butterfly

I love flowers and butterflies. They are my symbols for peace & happiness. Kind of ironic, huh?


A few years after being diagnosed, I was officially in “remission.” At first I thought that meant that the disease was dormant/ inactive and would not affect me. I guess it wasn’t as bad as when my kidneys were acting up and the Lupus was active but I did still have the pain, the headaches had gone away, I was only on a few medications and no longer felt like a “pharmacy,” but was still tired all the time. But after going through everything that I did, I would opt for remission. It made me kind of sad when the people at the pharmacy started to call me by name and knew who I was. I ended up with two Morton Neuromas (nerve damage), one in each foot (just so that the other foot wouldn’t feel left out I guess). I’ll talk about that on a later date. Various joints would hurt at different times, the winter months or when the weather changed seemed like the worst as far as pain, I would get this pain in my shoulder that was so bad that sometimes I couldn’t even move my arm (I still don’t know what that is), and various other things that I cannot recall off the top of my head as they all became my “norm.”

I don’t know what happened but after we got home from my sister’s birthday get together on December 13th, I was laying on my bed playing games on my phone to pass the time as I was too tired to do anything else. All of a sudden it felt like my throat was closing up and I was having trouble breathing. So I sat up. I could breathe a little better but was still having problems. I knew that any time someone has trouble breathing, they should go to the ER but I could still breathe, why waste my time and money to go to the ER for nothing? But what if I should go in? What if I don’t go and I stop breathing in the middle of the night? I didn’t want to wake up my mom so I was debating whether or not drive myself to the ER. After an hour of debating, I was too tired to drive and decided to go to sleep. In the meantime I had text my mom just in case I drove myself and wasn’t home by the time she woke up, she would know where I was. She was mad at me the next day for not waking her up and since I was still having issues breathing, she brought me in to Urgent Care (which I knew they were going to send me to the ER per protocol). The ER doctor did some blood work, a chest x-ray, EKG, etc. An Echo Cardiogram (I think, I can never tell the difference between the EKG and Echo or if those are the same tests or what) was ordered but a technician wouldn’t be in until Monday (it was Saturday). The ER doctor came in after he received all of my results. He asked me at what point was I told that I had Congestive Heart Failure. I looked at him surprised because I did not know. He told me it was in my charts. I thought back to when I was first diagnosed and living in Las Vegas but could not think of any time that someone told me that I had CHF. So I found out that day that I had CHF, my kidney function had rapidly declined in a fairly short amount of time and was closer to dialysis than to anything else (which my kidneys had always been my biggest fear), there was fluid in my lungs, my blood pressure was sky high, and I had bad edema in my legs because my kidneys weren’t doing it’s job. I called it the “Bizarre Love Triangle,” knowing they were all connected somehow and somehow I needed to make something stop to halt the damage that all three things were doing to my body. He wanted to admit me to the hospital until at least Monday for the ECHO and go from there. Actually I didn’t know how bad my kidneys were doing until a week and a half later when I established care with a Nephrologist. I’m glad I didn’t know in the hospital because everything else made my world turn upside down and inside out. I had really hoped that since I was living a more positive life, was doing so well in many aspects of my life, and was taking all of my medication again like I was supposed to even though I was in “remission,” I didn’t know what I had done wrong or where it all went wrong.

Since then it’s been crazy. I had to get another spinal tap the last time I was in the hospital last month which I was so scared of because of my first awful experience when it took forever, hurt, I could feel nerves being pinched in my thighs, it was painful, uncomfortable, and afterwards spinal fluid was leaking for days and I had the most horrid headaches that I had never experienced before in my life and never want to experience again. This time it was better. Quick and not painful (as I don’t mind needles anyway). My medication is hard to keep track of and I still don’t know them all by name. I’ve been in the hospital three times in the last four months (twice because my sodium dropped so low), found out I still have edema but it’s manifesting itself on the inside of my body that’s why it seems like I’m not retaining water because you can’t see it in my ankles and legs anymore. I get bad headaches that last for days, all of my “normal” symptoms are way worse than usual that I can’t even work so I’m on leave right now but have to get better by May 1st and go back to work on the 2nd. I was hoping I’d be better by then but I don’t know. I had to wear a holter monitor for 2 weeks per my new Cardiologist to “record” any irregularities I noticed during that time. I got to do a CT scan of my brain again (how fun, being claustrophobic), but they had music, Valium, and an eye mask so I was good. And he let me keep them. I got bossed around by a nurse that was younger than me, almost was given another patient’s meds as a frantic nurse was looking in the wrong person’s chart and luckily I caught it because she mentioned that the hospitalist wanted to give me Motrin which I knew could not possibly be correct because of my kidneys, my arms looked like I was a drug addict that loved needles, and all kinds of fun stuff. Of course most of the tests show nothing. They’re always like that. I got used to the doctors giving me shrugs, saying, “I don’t know,” or “It’s just the Lupus.” I didn’t like that there were no answers as I had always thought doctors always had the answers. It was and is frustrating to say the least. One thing that made me angry was that I was having edema for a while. The first time was back in March of last year. And to my surprise, it stayed there for days so I was able to show my new Rheumatologist. He pressed on it which left a big indentation that ever so slowly regained it’s huge shape. I had done that a lot, played with it like silly putty. “See this,” he asked as he pressed down on my leg. Yep, I’m not blind, I already know it does that. (I was thinking this, I wouldn’t say it out loud). ๐Ÿ™‚ “You’re retaining water.” Okay. And I guess that was that. So I thought it wasn’t a big deal since he just blew it off and was more concerned about me being a cigarette smoker than anything else. The edema would come and go every so often, always lasting between 1-3 days. Then it started to get really bad in December, and the headaches started (it was so bad that I would need to call in sick for work and I never call in sick). The edema got so bad that you couldn’t see any of the bones in my boney feet, I had no ankles (just cankles), it went all the way up my thighs. It was really bad but I thought it wasn’t a big deal. Until one day one of the nurses I worked with said that I looked pale lately and she had seen my legs (I showed her), and she said that my face was bloated too. So I went to my doctor who immediately ordered blood work and stuff that the Rheumatologist should have done. My blood work jumps around so much that I can be fine one day and the next day something else is wrong. I am now officially anemic and my red blood cells and hematocrit has been low lately. My doctor was thinking about doing a blood transfusion but my Nephrologist wanted to hold off on it. He prescribed me some Iron last Thursday when I saw him. “Finally, I thought. I’ve been asking for something, anything that could possibly give me the least amount of energy or tell me what to do to get energy. I’m not sure if the Zinc will work but it’s worth a try.

The most important thing that I do right now is the hardest thing for me to do. I’m under liquid restriction for what I believe is for the rest of my life. 64 oz. I’m used to drinking 3-4 times as much as that. I am still failing miserably daily but I am drinking less than I used to, however I know that’s not good enough. My Nephrologist told me that when I was in the hospital this last time, I had enough water in me to last me six days. So I have to try harder until I finally get it and know how to ration my liquid throughout the day. My blood pressure in the meantime is still high but better. A couple of times it hit the normal range which made me happy. 200/114 is not good at all. I never had problems with my bp before.

I had one of the biggest scares of myย life in December when I landed myself in the hospital for several days, sleeping most of the time because of the headache that wouldn’t go away, and the Nephrologist wanted to put me on Prednisone and that was the only option, I had to do it. He assured me that a small pill wouldn’t make me “fat,” that it’s the person eating, not the pill. Well I beg to differ because I’m not eating any more than I usually do and even though at least 10 lbs. is water weight, I have still gained weight and my face is huge. It’s not a dinosaur head this time, it’s a “Muppet Head.” Yea, I cut my hair super short at the wrong time because my head became bigger, like a Muppet. ๐Ÿ™‚ I don’t know why saying those things make me smile or makes me feel better. I think a part of me would rather say that to someone that I haven’t seen in a long time than for them to think it or even say that I gained weight or that my face looks swollen. As if I didn’t take notice. My Rheumatologist said I could start taking 20 mg a day instead of 30 mg of Prednisone but I still don’t see a difference. I asked my Nephrologist when did he think I could start taking less Prednisone and also start reducing the CellCept and some of the other meds. He said we would discuss that later, he wants me to do a few tests first and seeย me in a month. A month seems too far away. I want to be able to reduce my medication sooner. He had at one time discussed Cytoxan with me (in case the CellCept/ Prednisone/ and other meds didn’t work) but he hasn’t mentioned it again so I’m crossing my fingers.

I know there are others out there with Lupus who are taking Prednisone. What is experience with it? How do you feel about it?

Advertisements

7 Comments (+add yours?)

  1. Estela Caballero 4utu
    Apr 13, 2014 @ 15:19:45

    Biopsies, tigers, and prednisone, oh my ๐Ÿ™‚ So familiar and painful. I have some pictures posted of the transformation my body and face went through….hair loss and all. I had to get chemotherapy after the more common treatments wouldn’t snap me out of a mega flare..I made mega flare up but it just means the big flares ๐Ÿ™‚ Hope you are better soon.

    I recently posted something called Lupus and Me: Feathers and Music about the fatigue and how I experienced that. The deep fatigue isn’t always something seen as challenging but wow did it knock me down several times.

    Reply

  2. mkingr
    Apr 13, 2014 @ 15:39:22

    I’ll read that post next. ๐Ÿ™‚ At first I thought that posting a Prednisone picture of me would help me “accept” it & make it easier to cope with. But as my face and body inflated even more, it was one more thing that I was embarrassed and ashamed of. I wouldn’t want to take a photo of myself now as I don’t even recognize myself anymore.

    Reply

  3. jessieefrost
    Apr 13, 2014 @ 18:48:14

    I love reading what you are going through, maybe Lupians are masochists? Sorry about your troubles. I don’t know what the health system is like in the US, only what I have heard, but I normally try a few drs until I get one that will listen and do something. (or keep trying anything)
    i hate the preds too, I did a post recently on it-Second Intermisson: The Preds-I empathise completely. I had to eat a bunch of celery and a whole lettuce daily so my water/fibre intake increased bowel movements to the point that I was constantly digesting and eating. It sucks yoo when you can’t exercise to drop weight.
    I’d recommend talking to nutritionists and psychologists/counsellors when you have to go on these ‘Heavy Meds’.
    Big Love strong girl!

    Reply

    • mkingr
      Apr 13, 2014 @ 20:26:20

      Your comment about masochists made me laugh. ๐Ÿ™‚ Maybe, who knows? Lol. Moving back home and needing to find new doctors, especially specialists was pretty difficult because there aren’t a lot of options. Luckily I like my PCP a lot as there aren’t many taking new patients. There are no Rheumatologists on the island and there were two that came to Kaua’i on at least a monthly basis after the initial visit on Oah’u. I “divorced” my first choice after the second visit which I almost walked out on and my other choice is okay for now. If it doesn’t work out my option would be to look for another one on Oah’u and have to pay airfare & at least for a rental car every time I see him or her. Right now my problem is my Rheumatologist doesn’t want to be my main contact because he lives on a different island, my Nephrologist refuses to be my main contact because he just wants to “take care of my kidneys,” and my PCP doesn’t know wth is going on with me because of the complexity of my problems right now. So I have to take care of everything. My mom was coming with me to my appointments to be the second pair of ears but she doesn’t remember what they say either & really doesn’t seem to be paying attention anymore. I think she’s over it and I don’t want to inconvenience her anymore so I’m going to just start doing everything by myself no matter what. At least my Nephrologist is smart and appears to be thorough so I don’t have to worry right now about looking for one on Oah’u. I like my Nutritionist/ Dietician. She works in the same department I work in. In the last month I’ve thought of finding a psychologist but am a little hesitant as options aren’t that great here and I don’t have the time or energy to play the hit and miss game. I’ve asked around and all the ones who were highly recommended have moved elsewhere so they aren’t options. I guess I’ll figure that one out the next time I feel like I’m going crazy. ๐Ÿ™‚ I’ll see what I can do and appreciate your suggestions. One good thing is I got out today to see my sister & she’s making me laugh a lot today. I miss these times with her where we can’t stop laughing. Have a good night. ๐Ÿ™‚

      Reply

      • jessieefrost
        Apr 13, 2014 @ 20:52:28

        I know the trouble! It’s good that other people can decide whether or not to deal with parts of your illness (sarcasm). It’s cool your sister is good. In Australia it is mandatory, though not very known, to have 10 visits to a psychologist when you’re diagnosed and I go back for 2-5 every 2nd year. Even if they aren’t good they are always a great source of knowledge and support. Else there is WordPress ๐Ÿ˜‰

      • mkingr
        Apr 13, 2014 @ 22:53:29

        ๐Ÿ™‚ Yep. And either one could probably do the same thing and wordpress is free. ๐Ÿ™‚

  4. devrivelazquez
    Apr 24, 2014 @ 16:11:06

    you’re not alone! and I hate prednisone too… I have been on it for about 3 years now, off and on. I hate it.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: