Prednisone - The Choice

Face to face with life & death, present moment & future

This morning was one of the worst mornings since December of 2011. I’ve been tapering Prednisone and I was determined to be off of it soon. I was willing to deal with the pain that I knew would come. I was desperate to lose the weight I’ve gained since I started Prednisone February 2012. I recently went down to 5mg/day and I felt the decline in my condition, day after day, getting worse. It was a feeling of impending doom, like being killed slowly, through torture. First my wrists, fingers, ankles & feet started swelling up, the pain became intense and the swelling brought on instant disability… inability to trust if the joints would support my step, or if I would drop the coffee mug this time. Would my shoes fit today? Will I be able to get up & down the stairs from/to my house? Can I get dressed by myself? I’ve had to loosen up my laces, getting up/down stairs has become a major task & huge source of frustration as I like to move fast and don’t like depending on other people for help… Getting dressed is a struggle, makes me feel like a toddler, who desperately wants to get herself dressed, but lacks the psychological ability to understand where the leg goes & how do I get this foot inside the sock… Now my knees & elbows are affected as well, I feel my neck getting stiffer – if I continue this way I won’t be able to drive the car (can’t turn the wheel or even open the doors) (this morning I needed two hands to turn the key to start the car), turning in bed will become a painful task, sleeping will become a painful chore (I want to sleep, but if it brings on more pain… why would I?), not to mention household chores… I haven’t been able to cook, clean, do laundry or tidy up in the recent week or so… it was just a matter of time I would become bed ridden.

Love this necklace, planning to buy it... maybe I will, soon.

So things have gone downhill fast. Back in December 2011 I struggled to find the will to live. I felt I wasn’t able to contribute to my childs life, felt like a burden to everyone around me. Today I was face to face with that same thought. The pain & inability to move devastated me, I was so angry. I cried and verbalized how much I hated Rheumatoid Arthritis. I was (barely) standing in the kitchen, holding a bottle of Prednisone in my hands. Faced with no choice but to have to increase my dose of Prednisone to 10mg a day, in the hopes it will give me back most of my mobility. I took the pills.

The reasons behind my decision are complex, but make perfect sense to me. I wanted to be off of Prednisone so I could lose the weight and find the joy in being my genuine self, physically. I wanted to love myself again, find the real me underneath the fat. In some ways I feel my weight has affected my decisions in a negative way. I also wanted to be in good health in case I would be able to start conceiving another child. As I was holding onto the bottle of Prednisone, tears were rolling down my cheeks, I was also thinking the mother that I want to be for the child that I already have. How desperately I wanted him to get the best of me, physically active me. The woman who is fun, playful, loves to play sports and do everything to make her son happy, in the present moment. I felt if I allow myself to become disabled again, my son would lose a mother. Yes I want another child, but the child that I already have is FAR MORE IMPORTANT than the child I want to have. So those were the thoughts and the choice became obvious, even if painful in an emotional way. In some way I had to let go of my dream of having another child, for now. I have to give my Angel Boy the best of me, even if it means I’ll live a shorter life because of the long term side effects of Prednisone. I am the one who is always “preaching” about quality of life, how it should override everything else in the life of a person with chronic pain and disability. I must take my own advice now.

Hoping & praying for better times to come.

****************************************************************************

 

 

~ I’m also currently on Humira which is not working yet, also supposed to begin Plaquenil next week. Still taking Dexilant for gastritis, Zyrtec for seasonal allergies, Motrin (lots recently, when things go bad, I take 800mg in the morning & depending on what I have to do, more later in the day), beginning Restasis tomorrow for chronic dry eye.~

* Refuse to Sink -photo by "klacustomecreations" from Etsy.com

Link between hormone imbalance and RA

I was diagnosed with RA a year ago. I haven't had a rheumatologist, nor have I been on any RA medications since May 2011. It's been a constant flare up since October 2010, only increasing in intensity. I wanted to treat ( If I'm perfectly honest, perhaps cure ) my RA with Chinese Herbs, and I had a great summer  of 2011 because of them. Long story short, my body is sensitive & it is no different with how it responded to the long term use of Chinese Herbs. And by long term I mean 3 months. Yes, the herbs were helping me, but they left my menstrual cycle a mess. As I've said in a previous blog post, I was desperate for relief, so I started a modified herbal regimen in the end of November -11. It was definitely easier than finding a rheumatologist, who I trusted. But the consequence of that was, my menstrual cycle continued to be a mess. First 3 months also gave me high blood pressure & high ALT/AST liver function values. The high blood pressure alone was enough to make me stop in my tracks! The 2nd round of herbs seemed to have sealed the deal on my menstrual cycle just raising its hands up "I give up!" I've had 3 "periods" in the last 6 months. 1 relatively normal back in August, then 2 barely there, spotting for a week. Average cycle length has been 60 days or so. As all women, I too don't mind not having periods, but the consequences of that may be dangerous. The 2nd round of herbs also seems to have dried me up. One of the herbs, Arthral EZ, seems to have dehydrated me. I feel it everywhere. My dry mouth might be a side effect of this herb (and not Sjogren's syndrome, like I started to think). All in all, if I compare the herbs to western drugs, the side effects are very minimal with the herbs.

The herbalist knew the most helpful herbal combo (called AI#3) has a side effect of eventually affecting the menstrual cycle. Women are supposed to take it up to 3 months, then take 1 month break (supposedly for the period to return). My body responded negatively faster than the average woman. The fact that the herb mix I was on, affected my periods, leads me to some conclusions. I think the herbal mix changed my hormone levels & it is still doing it. When I stopped the herbs back in August, I think RA came back with vengeance because my hormones were even more messed up vs. what they were before the herbs. I'm supposed to meet with my herbalist this Thursday, to get my next months supply. The herbs help me, so I'm hesitant to stop. But I feel for $300/month I should be able to have a regular menstrual cycle, slow the disease progress & have more pain relief! Do the herbs really do anything besides act mostly as an analgesic? In addition to the herbs, I still take minimum 1200mg of ibuprofen a day, and I've been doing this for more than a year! And I still sleep & live with pain, disability & fast progress of disease, regardless.

I also have PCOS, polycystic ovary syndrome, diagnosed a few years ago, currently untreated as well. My body responds poorly to birth control pills, so I have to find another way to manage that. My ob/gyn doesn't specialize in PCOS, so I would also have to find a new ob/gyn to address this issue. My periods have always been very painful with a heavy flow, bloating, aches, migraines, mood swings & I seem to have been irritable/annoyed all the time. Seems it has been a full blown PMDD. Before my herb induced (I think) menstrual problems, I spent half the month suffering from the effects of my menstrual madness! Now I've been just all over the place, since...

The key to life is balance.

So all in all to summarize my thoughts:

Could it be, hormonal disturbances/imbalance causes RA flare-ups? Could that be the reason RA affects more women than men? Could treating hormone imbalances help minimize RA flare-ups? There is also the question about, what hormones help and what hormones hurt RA. What my independent research shows is that, it's all about the balance of different hormones when it comes to RA. I quote conqueringarthritis.com : " Turns out that estrogen, at normal (non-pregnant) levels, enhance the type of immune responses that cause RA. Androgen suppresses these responses. If you have normal levels of estrogen but don't have enough androgen, it is much harder for the body to stop the out of control immune responses that cause RA."

Following is a list of some interesting websites I came across in my research in reference to this topic.

Women to Women/Quieting Inflammation

Hormonal Imbalance and RA Link Studied

Hormone therapy for RA

I think this is fascinating! Meeting with my OB/GYN this Wednesday, as it is time for my check up & I do have some other issues I need to address. I have a feeling "something is up" down there. But I intend to bring this topic up as well. I will definitely continue my weight loss journey, if for no other reason, but to help my hormone levels & overall health. Belly fat seems to be a culprit in creating too much estrogen as well. To be continued...

Does the elimination diet work for RA?

It's been one week since I started my experimentation with the nightshade diet plus minimizing the intake of acidic foods. I wanted to find out if it would make a difference in the level of inflammation and pain, with my RAD.

I eliminated all food with potato, tomato and paprika in it. I also stopped eating sugar (and anything that had lots of sugar in it), chocolate & red meat. I didn't drink any alcohol (I don't drink it much as it is, but for documentation purposes), milk or coffee (not even decaf). I didn't eat anything artificial either. To be honest, it would be easier to tell you what I ate, instead of what I eliminated ;-) I continued taking my Chinese herbs, which caused me to question the validity of my experimentation. They are herbs after all, and I'm not sure if some of them belong to the nightshade family of plants. But 1 week of experimentation is finished, and I gave it my best, considering circumstances.

How my body reacted

The first 2-3 days were rough. My willpower was strong and I knew I could get through it, but my body was responding like a body of an addict. By no means was I what anyone would consider an addict to any of the foods/drinks I eliminated. However, I did have a head ache until just a few days ago & the first days I was pretty sour with my mood. I also had some severe brain fog. Snappy & irritable. Tired with low energy. Scouring the kitchen for something to eat. Seeing all the foods I couldn't eat. I told my friend about my struggles and he said something thought provoking: "If your body is responding this strongly to the withdrawal of these foods, maybe there's your clue, you shouldn't eat them..." And then I turned a corner, my body started adjusting. I still desire coffee & chocolate, and all my other faves, but at least I don't have the physical withdrawal symptoms!

Long story short, I can't say I feel significantly any less pain/inflammation. If anything, I feel more stiff! Has this been a wonderful beginning to a healthier life? YES, YES, YES!

On a side note, if I had stayed on this elimination diet for a month, would the results have been different? I am allergic & sensitive to lots of foods, so excluding so many that I can eat, may not be something that's ultimately healthy for me. On top of that, I have some sensory issues with textures (complicated much? ;)) So my diet was very limited before my experimentation, and while on it, it was amazing I found anything to eat :D

Onwards & upwards, friends!

Levaquin

I meet with my therapist every Wednesday, as I have for the past 2.5 years. We first met when my husband and I went to see him for marriage counseling. My husband came with me 3 times, and then concluded, he doesn't really have a problem with our marriage, that's it's all me. (we disagree on that one, but we disagree on more than we agree as it is, so no biggie). I continued seeing the therapist & he's really become a friend, my lifeline.

Today we talked about the role Levaquin might've played in me getting RA. We've talked about it numerous times, but today I had something to show him. There's a website called Askapatient where you can look up any medication and either add your own comments about it, or read about other peoples experiences. I printed the first 19 pages of comments on Levaquin and gave them to him, so he knows a little bit of what I know. From my research, it would appear I am a carrier of the RA gene, which made me sort of a loaded gun, just ready to go off, when the "right" triggerer arrived. And I'm convinced, Levaquin was the one that pulled the trigger.

I don't know if there will ever be any justice regarding this, for me and thousands (if not more) of others who have gotten lifelong disabilities, even death, due to Levaquin. I know Levaquin has a Black Box Warning Label in it now, since 2008. It should serve as a warning to doctors, to not prescribe it lightly. In my opinion, it should be taken off the market and a class action lawsuit should be filed. Just because they put a Black Box Warning Label on the drug, doesn't mean people will not take it. If they're given antibiotics, chances are they're not 100% well and maybe not even thinking straight. Medications always have warnings, but how many of them really do as much damage to as many people as Levaquin? I don't know any statistics on this one, but someone needs to put an end to this. I'm currently contemplating on what action to take on this topic. I'm obviously battling RA and struggling with treatment, as most are, so it's occupying most of my brain power and time. I'm also going through separation. It seems impossible to tackle this possible Levaquin -lawsuit. But I will keep researching and finding potential allies along the way.

The F*** Arthritis Girl

Today was a perfect example of how a negative event can turn into a positive one.

A person whose Twitter name is reflected in the title of my post - got under my skin with her post today, to a dear Twitter friend, a respected blogger/RA activist. It was almost as if the F girl was trying to stir up something. Taking a very accusatory/presumptuous approach right from the start.

After responding to F girl, I explored her Tweets & found something I had come across previously. The theory behind "nightshade" plants/foods. A friend had told me about them just after my RA diagnosis, and I didn't really buy into it at the time. I think I had so much data to process about my new diagnosis, I let the nightshade theory slip out of my mind. I ate less beef (which is not a nightshade plant, obviously :D, but rather something I heard causes inflammation), but I didn't feel any different, so I let my diet slip back into normal beef consumption. But I researched the nightshade plant theory again, and I came to the conclusion that there might be something to this... so I decided, I'm going to try eliminating all nightshade foods out of my diet for a few days and see what comes. Nothing to lose, right? So I went grocery shopping this afternoon :) Toughest part will be avoiding sugar. Coffee is not nightshade, from what I gathered, but it's advisable to avoid it, decaf & regular. But I can commit to this for a few days, for sure! To be continued...

So F girl may have gotten under my skin... but she also reminded me of something I had forgotten to explore :)

P.S. I was going to post a picture of my favorite tomato dish - Mozarella Cheese w/ Tomato & basil, but I felt it would be too tempting to look at ;-)

A second chance

Before I write about anything else, I need to give some background information. It helps you understand certain decisions I've made & how these things will keep affecting my decisions for years to come.

I've struggled with depression and anxiety in the past. But after I gave birth to my son, I actually had to go on medication to help me function. Thinking back, all I needed was a better support network. But where was I going to get it, from thin air? I had husbands' family, but in the end of the day, they were his family. They were not helping me with my newborn, since I was a stay at home mom. Stay at home moms are supermoms who never need help. At least that's what they thought. And as for husband's family... I would have to write a book to make any sense of that clan ;) And that book will have to wait, while I make friends with RA, the one I call my Evil Parent ;)

So in 2006 I started on antidepressants, Effexor XR. It was prescribed to me by my OB/GYN. I think it was helping, since I was on it for some time. However, I wanted to wean off of it, because of the potential side effects of being on it for a long time. I had read horror stories of people coming off of it. So I went to see a psychiatrist, who only prescribed medications, and didn't actually offer any kind of cognitive therapy. She prescribed Depakote, which is a mood stabilizer. Then we were slowly decreasing the dosage of Effexor. It was sometime in January of 2007, when I started to wean off of it, and just after mid March I started feeling sick. I didn't think anything of it. I just thought I was exhausted from recent developments in my life. (I had just had my church wedding in the beginning of March). At the same time I got an upper respiratory infection and my doctor put me on Z-pak antibiotic. The first dose was 1000mg, pretty strong! I got so sick, I could not get out of the bed, nor take care of my little 3 year old. I got out of bed long enough to put on a Sesame Street dvd and then went back to sleep. Just so fatigued, generally ill feeling. I can't even describe it in words. I had a constant cold sweat, and felt so weak! I took my 2nd dose of Z-pak, but by then I was starting to connect the dots. The Z-pak is making me ill! A few days later my husband told me "You look kind of yellow/orange."

That's when I must've looked in the mirror for the first time in how many days. And yes, I was orange! My eyes were orange! Not long after that we were headed to the ER... nobody knew what was going on, nobody knew what they should do with me! They did an abdominal scan & found that I have gallstones. But what failed to acknowledge (and take action on), were my liver enzyme levels! My liver was failing! They just told me to quit taking the antidepressants and mood stabilizers cold turkey! And then, get this - they told me TO GO HOME, AND COME BACK IN A FEW DAYS IF I DON'T GET BETTER. (!!!)

Not knowing what else to do, we went back home. But 2 days later I went to another Emergency Room & the same fiasco continued there. I was not given food, I was weak as it is, I was eating ice chips, since they didn't know if I needed a surgery of some kind. I was suffering from the withdrawal symptoms of quitting my medications cold turkey. I was put on the sidelines & nobody knew what to do with me. Yes, her liver enzymes are through the roof, but we don't know what to do with her. HELLOOOO!? Is there anybody here who actually went to school for this? I was too sick to know what was going on.

Then came an angel, Dr. B., my liver specialist! He put the whole ER in their place and I heard him raising his voice and saying "This is a healthy 30 y/o woman! Her liver is failing! You're not doing anything? Come on people, wake up!" So he took matters into his own hands & put me at ease, that he's going to take care of me. About an hour later, I was in a ambulance, transferred to Columbia Presbyterian Hospital. They have a whole floor for liver patients. That floor, I was told - people either don't come out of there alive, or they come out with a new liver. Initially my liver didn't seem to bounce back. Nations best liver specialists came to see me, interview me, asked details about my past alcohol drinking and Tylenol usage, trying to figure out why my liver was failing. Finally, my liver started responding to the meds! It was determined, that my acute liver failure was induced by Depakote & Effexor XR. Z-pak was not considered to be offensive to my liver. However, I believe my liver took a beating from the combination of drugs.

So long story short... my liver has bounced back completely, but from this horrific, near death experience, I developed an extreme fear of medications of all kind. And now that I have RA, treatment of it has to be conservative. Sadly all medications go through liver. Most of the RA medications are very strong & potentially messing with my liver. My next post will be about my journey with my first rheumatologist & the treatment of RA. ~ Thank you for reading this. It was hard to write.

NOTE: In addition to this - I'm in the process of writing a post about Levaquin triggering my RA. So in the future, when you hear me struggle with decisions about RA treatment. Keep these experiences in mind.

NOTE 2: There's also a class action lawsuit against the makers of Effexor XR. Because of the effects it has on the liver :( Just found out today.

My RA diagnosis

Not quite sure where to start today. My head is a total mess of thoughts that conflict with one another. So this & the upcoming posts will probably be very “free hand” kind of post. You may even wonder, how does all this tie in? When I get everything I need to say, out of my head, some of it make a whole lot of sense, some won't.

As many of you know, I am in the middle of separation proceedings. It has been an ongoing process since June of 2010. First we went to see a mediator, to get a “Memorandum of Understanding” which basically explains everything we’ve agreed on in detail. We met with the mediator until May 2011. Sometimes we saw her once a week, sometimes once a month. It really depended on holidays & everybody’s schedules. We finally got into an agreement about the terms of our separation & I thought, this is great, no lawyers involved! Although the process of mediating our separation was stressful, it wasn’t “take me down to my knees” –kind of stress. Just hitting my head on the wall –kind. It was in some ways a slow death of something that once was beautiful, and something I cherished. Painful, yes.

In the midst of the mediation, October 2010, I had a upper respiratory infection, and my GP (also a pulmonary specialist) prescribed antibiotic named Levaquin. Even though I have an aversion to drugs (my body is just very sensitive, from A to Z), I wanted to feel better & gain my strength back, so I started taking them. I finished the whole set, I can’t remember how many days it was. Probably 7 or 10 days. I don’t know if the length of it really matters, but I can obviously get a list of everything I’ve purchased from my pharmacy (and I will!).

A week after I had finished the antibiotic, I went Christmas shopping wearing my new PADDED, super furry, comfy boots, that fit me so well, no pain, discomfort, nothing. While I was walking around the Outlet Mall, for maybe 4 hours, my feet started hurting. The balls of my feet & heels, to be more exact. I remember thinking, “Oh, I must’ve walked too much today.”, even though I’m a walker at heart & have always loved walking. I never got pain in my feet from walking, never. My friend massaged my feet that evening, and it hurt too much, just to have someone massage them. That was the first day of my pain, and from there on out, my pain only got worse and started affecting my hands & wrists. Getting up in the morning was becoming more painful, stiffness in my feet & generally all over. The pain was in my fingers, wrists, feet and my left shoulder. I went to see my GP multiple times, and they ran different tests, all came back negative. I went to see a neurologist, thinking I have carpal tunnel syndrome and it’s also affecting my wrists and fingers. Then in the beginning of February, 2011, after having done so much research on my own, I demanded to be tested for Rheumatoid Autoimmune Disease (also known as Rheumatoid Arthritis). They were very cooperative and followed my request. The GP’s assistant was actually sympathetic and told me, we’ll run all the tests and we’ll figure this out. That’s when I broke down. Having someone actually hear me, made a big difference.

The following is what I wrote about my test results, on Valentines Day 2011:

“My lab results are in :(( Not good news.

But I still think it's much better than what the doc first started talking about. She said, have you ever been diagnosed with any STD's? And I'm almost screaming in the phone, WHAAAAAAT???? lol, and she says, well, I have to talk to you about this, when can you come back to the office? lol... I said, what are you talking about, STD???? And then she looked at her papers and asked, "this is Mary, right?" hahahahahah... I said, no, this is Sari! She was all apologetic, and embarrassed, but frankly, I was just relieved, lol! I have never had STD's of any kind and I don't intend to, lol! But the news I (Sari, not Mary, haha) got... worry me, and I do need to make an appointment with a specialist :( It will be a lifelong problem, and it will never get better, it can only be slowed down and managed :(( Not looking forward to getting older with this diagnosis. Sad ending for my Valentine’s day, 2011....”

Even I can see, I didn’t have a clue, really. Having some kind of STD would be better than this, I’m convinced. I called my liver specialist, my favorite doctor, to ask for a referral for a rheumatologist. He gave me the same name as my GP’s office, so I called them and got an appointment. I believe it was beginning of March 2011. I was very nervous about my appointment.

This is what I wrote the day before my appointment:

“My rheumatologist appointment is tomorrow, finally. I've had to wait for 3 weeks to be seen, and it's been a long time, I tell ya... but I'd rather wait to be seen by a great doctor, and suffer while waiting, than be seen quickly by somebody who asks me "can you come tomorrow?" lol :) I really want to get this right, and be treated/informed by the best.

I'm also going to get a consultation with a Chinese Herbalist aka Dr. Zhang, and hope I can afford the herb treatment plan from him. He comes highly recommended, as he is a Western Doctor AND a Chinese Med. Doctor and I have a close friend who knows the magic he's been able to make happen.

I've had to stop doing Yoga until I see my doctor, as well. The pain I have every day needs to be managed somehow and the inflammation reduced significantly, before I can continue. And the Rheumatoid Arthritis requires a specific kind of Yoga, too. I really can't wait to start feeling better... and start enjoying mornings again & be able to continue my daily activities with more energy and less stiffness & pain... to be continued... “

I still didn’t have a clue. I thought there’s some magical drug that will give me my life back. I also thought my rheumatologist is great, she just had to be, since she came so highly recommended by people I trusted. Oh boy, was I wrong.

This is what I wrote after my appointment:

“ I'm all out of words & confused with all this medical stuff. I know so much, and not enough. So I keep waiting for the answers... for now, I've been given muscle relaxants to improve my sleep and perhaps give my body more restorative kind of sleep. Which is needed for the body to reset for a new day, and for the ability to tackle everyday life challenges... not to mention the much more challenging stuff, like divorce. My rheumatologist thinks, that I'm not able to reach the last 2 stages of sleep every night, for a long time now. And that's where the reset happens. So the muscle relaxants would put me to that stage faster and with the improved quality of sleep, my body might start healing itself.

She has not given me a diagnosis yet, since it's a process of elimination... I'm thinking she's leaning towards Fibromyalgia and maybe some other stuff in addition to that. Fibromyalgia because my inflamed joints didn't feel warm to her touch. (I know they had been and were at the time of the appointment). I had made the mistake of taking ibuprofen before my appointment, to be able to get there, eh? Life is a mystery, no doubt... To be continued... “

And finally the diagnosis:

“ Official diagnosis: Rheumatoid Arthritis. At 34 (4 days short of 35 pfft). Unreal. *insert a face with tears* “

Part 2. coming tomorrow, I hope. With RA, it's one day at a time, and so is with this blog.