I remember, a couple of months ago, being curled up on our bed one night, crying hysterically. After months of chronic, severe pain, exhaustion, a horrid rheumatologist and drowning financially, I felt like there was simply no light at the end of the tunnel. I would never be well. I would never again walk properly or be able to play with the boys.
Joel held me in his arms and whispered reassurances. The one we both clung to "It's ok. You see Ian (GP) tomorrow, we'll get you started on the prednisone".
It had been such a big step to take - the decision to start me on Oral Prednisilone was not one that we or my 2 Doctors took lightly. I am an insulin dependant diabetic. I have Bipolar 2 - severe anxiety and depression. I have IBS and Fibromyalgia and I suffer from chronic migraines. I have PCOS and am morbidly obese. I was diagnosed with my first stomach ulcer at the age of 9 (A dodgy gene in my mother's family - both of my grandparents, my mother and 5 of her siblings all have/had duodenal ulcers). I am a chronic insomniac.
Side Effects of Prednisone:
upset stomach - tick this. It's causing so much of a problem that my body isn't able to absorb my other ide Effects of Prednisone
Prednisone can weaken your immune system, which can make it easier for your body to acquire new infections or make it harder for your body to fight off infections that you already have. It took almost a month, and 4 courses of antibiotics to clear the kidney infection that gave me the kidney stones last month. As i'm run down, I'm also covered in cold sores and the Prednisone is giving them plenty of leeway.
Problems with your vision Yep.
Swelling Can't get my wedding rings on and my feet are swelling so much, they are painfully tight. My face is puffy - I look like I've been crying for hours, even when I've not at all.
Rapid weight gain The cause of a LOT of tears so far. I've been on Prednisone (starting at a 60mg dose) for about 6 weeks. I had started to put on weight earlier, when I started the insulin. But the weight gain since starting Insulin has been astonishing. I've literally never heard of anyone putting on this much weight this fast, for anything. I wore clothes today that I last wore when I was 7 months pregnant with Samuel. Clothes that haven't fit me in 4 years.
Shortness of breath
Severe depression So far the most crippling of the side effects. It is worse than I was at the end of 2009. And I thought that was as low as I could go. Tonight I was thinking about suicide, yet again. And I swear, I suddenly saw an image of myself on a morgue table. And was mortified. I am so disgusted with myself that I can't bear the thought of being seen, even by medical staff. It's a bad sign for your self esteem when you're too embarrassed to commit suicide.
Unusual thoughts or behavior Yes. Intrusive thoughts again.
Seizures No
Bloody stools No
Coughing up blood No I think it's safe to say I'm relieved to at least have escaped these side effects).
Severe stomach pain, resulting in nausea or vomiting (this can be a sign of pancreatitis) Yes.
Uneven heart rate, extreme thirst, increase urination, leg or muscle discomfort (this is a sign of low potassium) Yes (not the heart rate, but the rest).
Severe headache, blurred vision, buzzing in your ears, anxiety, chest pain (these symptoms, together, are a sign of low blood pressure) Yes Yes Yes Yes Yes
The following symptoms are less severe, but your healthcare provider should know about them as they occur.
Sleep problems I'm lucky if I'm getting 3 hours a night. And that is with the sleeping pills the Dr prescribed me.
Mood changes Whiplash, anyone?
Acne Yep. Fun stuff, no?
Dry skin Yes
Thinning skin or bruising or discoloration Yes
Slow wound healing Yes
Increased sweating This one has been mortifying.
Headache As above - this is one of the worst side effects I'm experiencing.
Dizziness Yes
Nausea
Drug Interactions
Some drugs can have negative effects if they are taken at the same time as steroid drugs such as Prednisone. These side effects may sometimes be more likely to occur in these instances as well. They include:
Aspirin, if taken on a daily basis
A diuretic
A blood thinner
Cyclosporine
Insulin or Diabetes’ medication taken orally
Rifampin
Seizure medications
So. Clearly a drug for me, don't you think? When they started me on the high dose, my body reacted immediately. At 60mgs, my joints showed immediate improvement (within just a few days). They weren't all better, but there was at least a 50%-60% improvement right away. Since weaning me down to 10mgs (where he plans to leave me a while, probably until I see the new rheumatologist at the end of July), I'm back almost to where I started. It's better than it was - I'm not hobbling. My joints and back/neck/shoulders hurt - a lot. But I can walk and drive most days (provided the headache or dizziness don't prevent me).
But I'm probably back down to only a 20% improvement. It's enough to prove my GPs insistance that this was a systemic, autoimmune inflammatory disorder. He was LIVID that the rheumatologist dismissed me as a hyperchondriac fibromyalgia patient and reccomended no further treatment, but rather a psych assessment. As my GP said, he didn't even look at my blood test results. Fibromyalgia and Bipolar do NOT cause the levels of inflammatory markers (CRP, ANA, Sed rate and white cell count - the ANA was only borderline, but the others are through the roof) showing up in my system.
I'm falling apart over here. I've never, ever in my life, felt more hopeless or alone. I am only functional (mentally) when I'm with the boys. I seem to be able at this point to engage, most of the time (when I have to). But as soon as they are gone, or asleep - I'm a weeping, angry, suicidal mess. It is not so much the anxiety (previously always far outweighed my depression) as the depression. Utter hopelessness.
Nothing in my life is going right. My body is falling apart almost as quickly as my mind. I am virtually friendless. I have rapidly gained more weight than I imagined possible. I am in constant pain and am often dizzy and confused.
And Centrelink denied my Disability Pension because my arthritis wasn't fully treated....I hadn't tried prednisone.
I remember those words of Joel's, just months ago - the hope I felt as I thought about starting this drug that would surely be the answer to my problems. But tonight, he stroked my hair as I sobbed insconsolably for 2 hours and whispered that we'd talk to Ian (GP) and talk about stopping the Prednisone.
I would not have imagined having this conversation 2 months ago. What am I going to do? Is a 10 or 20% improvement in mobility worth the rest of this?
Tell me what to do. Please. I'm so lost and I feel so alone.
Oh my dear. You poor, poor thing. I'm so sorry this is happening to you. I wish I could give you a magic answer or a magic pill. I can't.
ReplyDeleteI can let you know that you're not alone. I'm here [virtually] by your side. xxx
Oh you poor thing, I honestly feel so sorry that you are in so much despair, pain, the whole darn lot of it. Life is so cruel and unfair and I so wish I knew something I could say that could make it feel a bit better for you.
ReplyDeleteI wish that I lived nearby so I could come and give you a hand or even just sit and have a coffee and a chat to help take your mind off things.
The lack of friends isn't you alone, many of us are in the "no friends" boat and it sucks, truly sucks.
I guess the best I can offer is for you to know that we "blog friends" are out here and will stick by you.
Chin up
Colleen
Lissa I'm so upset for you. You sound so sad and over it all and I wish I could help in some way.
ReplyDeleteI'm here listening if that helps at all.
Pen
xxxxx
Oh, Melissa.
ReplyDeleteThings sound so hard right now.
Just seems unfair.
I know we've never met but I think of you often and want you to know that you are most definately not alone.
Hang in there hun
xxx
You don't know me Melissa but I stumbled onto you blog after searching for another parenting site and after reading your horrid story...I immediately started praying for you.
ReplyDeleteI prayed that God would not only heal you but place strong, wise and comforting people around you.
I hope things start to improve really really soon
Jenny Findle x
I'm so upset that due to a self imposed mini break from the internet that I missed this until now :(
ReplyDeleteI don't know what to say Liss other than that I am also virtually here for you. I truly hope with the support of your GP and decent specialists that some kind of more manageable medical regime is found to alleviate your pain. What is happening is not right, not fair and not on.
Take care sweet one and please be kind to yourseld xxx
Oh gosh Mel I haven't been online lately myself as I've been battling my own health and mental issues. I'm just so sorry you're going through this. I know how tough it is to be in chronic pain it's just the pits. My thoughts are with you and I hope you get some relief soon.
ReplyDeleteMuch love and health
Xoxox
Oh Melissa :( I know prednisone is such a great drug, but at the same time it really is just a shitty drug. As someone who lives with lupus, asthma, depression & all the associated things that tag along with these conditions, prednisone & I are firm frenemy's...one minute I love her, the next hate her with a passion.
ReplyDeleteI feel for you so much chick, I have been bedridden a few times, but never for the length of time that you have, so I understand, a little, of the frustration & utter powerlessness that you are feeling right now.
I wish, very much that I could tell you what to do, but I can't.
Sometimes all you can do is breathe & hold on, and wait.
Thinking of you, sunniflowa (Lynda)
If only I knew what to say, or do, to make it better. I have been having similar problems, but I am 20 years older than you and it pisses me of, so I can understand how you must be feeling. I have just started taking a new drug and if it makes a difference they may move me to a new injection which is supposed to help. I am 4 weeks into the 12 week course and while my side effects are no where near as bad as yours, I still have had no improvement in my pain AT ALL. But my dearest Lissa, I am hanging in there in hope of one day getting my life back, I beg you to do the same. Love from Perth xxx
ReplyDelete