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.

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~ 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

Gastric denial

I’ve had a bad feeling about something being not-quite-right in my stomach and to be honest, I was procrastinating making the appointment for quite some time. It’s only now that things had gotten much worse, I couldn’t really manage the acid coming up from my stomach anymore. Pepcid Complete/One a day had worked wonders on me for a long time. The instructions say, do not take more than 2 chewable tablets in 24 hours. I had been able to get by with just one for a long time, but some time ago I had to increase my dose to 2 tablets & much more often.

My dad passed away back in 2006. In his autopsy, they found out he had a massive ulcer in his stomach. The stomach cavity (?) was filled with fluid, more than 10liters – how’s that even possible? Anyway, my dad had been taking massive doses of Burana, Finnish ibuprofen. Nobody ever bothered looking at the warnings in the package. My mom showed me the autopsy report and it indicated that my dad had an ulcer in his stomach (among many other organ problems).  That ulcer had burned through the wall of the stomach. I immediately asked her, if she knew about ibuprofen potential dangers? And I also asked how many pills was he taking everyday? It was a lot and mostly on empty stomach, apparently. I was horrified. The more he took ibuprofen, the worse his pain got. He was a very stubborn man, and to some degree a bit of a scaredy cat. He didn’t want to see a doctor for any of his health problems, because he was afraid of what they will tell him. He was convinced he is seriously ill with cancer of lungs or something, and refused to see a doctor. You’re wondering why I’m sharing this information with you, I’m sure. Well – I realized I was going down the same road as my dad, with denial and fear of knowing what is wrong with me! So I made the appointment with my gastroenterologist & it was yesterday.

During the first appointment my doctor told me “Motrin is what keeps me in business!” He understood that I have to take Motrin for my RA, but he was shocked when I told him I take 3 Motrin’s (600mg of ibuprofen) in the morning. Sometimes for headache, sometimes for other aches and pains, sometimes I don’t take it anymore. I laughed, if you only knew how much I’ve been taking for the past 2 years :D The 3 Motrin’s is nothing , I mean NOTHING, in comparison! As many of you know, I also take Prednisone for rheumatoid arthritis (bad combination together with NSAIDs). So based on my symptoms, he suspected I may have an ulcer in my stomach. So I scheduled an appointment for endoscopy and luckily they had 1 space in their schedule for today.

I arrived at 11:50am, my appointment was at 12. They took me in right away & we went through all the paper work, signatures & questions. I couldn’t be sedated because I’m allergic to eggs, so the doctor put some funky bubbly spray in the back of my throat, to numb it. The nurse & anesthesiologist couldn’t find a vein in my arms. I have deep, slippery veins plus I wasn’t allowed to drink anything in 12 pre procedure, so I was dehydrated. Eventually the anesthesiologist found  vein in the side of my wrist. Cried from pain, 6 trials & deep prodding with a needle. He wasn’t the gentlest either and got me pretty worked up and anxious. Not my idea of fun times, for sure.  After he found my vein, he gave me valium. It was supposed to help me stay relaxed & not feel weird about the camera being put down my throat. After that I got a bit disoriented & might’ve fallen asleep for some seconds, who knows, maybe minutes? I only remember that I started to cough, gag and vomit. The doctor took the equipment out & said he was done anyway, so it was ok. Then I don’t know, I was drifting on and off between being awake and being asleep. After that, the doctor came to talk to me.

He said, I definitely have gastritis (acute and chronic gastritis), but no ulcers! Massive relief! They took a biopsy of my stomach and he will check if there’s also bacteria causing trouble. So while I wait for the final results, I’m taking something called Dexilant. Must be something rather new since my doctor gave me a discount card for it ;) He said it was so good I came to see him now, rather than later. Most people apparently wait until the situation has gotten far worse. So far I feel ok, no side effects, but I’ve only taken one capsule so far. To be continued :)

“In matters of style, swim with the current; in matters of principle, stand like a rock.” -- Thomas Jefferson

Dr. New Rheumatologist

I’m not in the mood to write at all – the weather is so amazing! But many of you have been on the emotional roller coaster with me trying to find a new rheumatologist & supported me with my anxieties, so you deserve this!

When I first contacted this rheumatology office, my intention was to schedule an appointment with a lady rheumatologist. There’s 6 or 7 different rheumatologists in that office. The receptionist told me the next available appointment for a new patient is in the end of May, and it was February when I called! I thought that was far too long to wait, considering how long I had waited already plus how much pain I was in. So I asked if any other rheumatologist in their office could see me earlier. I was desperate, but hesitant, since who wants the doctor that is “not as popular”?! So I got my April 16^th appointment & that was yesterday.

I made the mistake of procrastinating getting all my documents/records together and then scrambling to get it done on the day of the appointment. I would’ve saved myself a lot of worry and anxiety, if I had done it before! I got myself so worked up, I couldn’t speak or think properly. I was also very anxious about the new doctor – is he going to live up to my expectations and hopes? Will he be cold & distant? I was tired and weary, looking for a rheumatologist. I made a list of “must have’s” in my previous post, based on my experience with Dr. Pearls. To save you time, I’m posting it again, with additions of + symbol if it fits to my new doctor.

• Knows what they're doing +
• Has waiting time less than 30 mins
• Speaks fluent English +
• Is a woman
• Listens to me +
• Believes me +
• Won't tell me "I've been doing this for 30 years" +
• Has been a rheumatologist for 10-15 years max 
• Understands my complicated medical history +
• Takes me seriously! +

7 out of 10 isn’t bad! And quite honestly, knowing what I know now – I don’t mind waiting for the doctor, if I know he will do a thorough exam when it’s my turn! The fact that he’s a man and he’s been a rheumatologist for over 20 years, I just can’t hold them against him ;) The bottom line is, he listened, asked questions, was thorough, didn’t assume anything, smiled, very down to earth, easily approachable, didn’t feel like he was in any hurry to finish, he spent more than an hour with me! He lingered, talked some more while the nurse took blood. We talked about different treatment options & I impressed him with my knowledge ;) He had his colleague look at my legs, that are covered in “something” (can’t really tell you what it is, since I don’t know). I was in rheumatologist heaven! If I had never had a bad experience with Dr. Pearls, I might not have known to appreciate him.

I told him my ex-rheum diagnosed me with RA, but the new doctor is running tests to exclude other possible diagnosis. I’m getting a skin biopsy done for my legs tomorrow. He wants to be sure it’s not Vasculitis. I’m also going to get new x-rays, to compare to the ones from year ago. He did confirm I have a large rheumatoid nodule forming in my elbow, probably both.

Now about treatment options - since I had a drug induced liver failure back in 2007, we need to be extra cautious with how to treat my RA. While all my tests are pending, I was given a cortisone injection. Something called Depo Medrol. It was not injected directly to the joint(s), but to a muscle at my hip. Apparently it’s going to help with inflammation & reduce pain, just like the pill form of steroid I’m taking. The shot itself stung big time, but I didn’t feel any different otherwise. This morning however… I was in more pain than I have been in a long while & my joints were super stiff! I couldn’t pull the orange juice out of the fridge, I couldn’t push the button to put laundry detergent into the cup! Everything was “can you help me?”, “I can’t do this”, very frustrating, having been a bit better since starting Prednisone. So I hope this is just a temporary setback & the pain will subside once the cortisone really kicks in! I have heard it could take 24-48 hours for the steroid to start doing its magic, and that things will get worse at first… oh yay ;) If I know the relief is coming, I don’t have any trouble waiting!

We both agree on trying a biologic treatment. He mentioned Enbrel (which is where my mind was at as it is) & Orencia. We even talked about Methotrexate, but given my history, it’s the final treatment I will ever try. I cringed when he mentioned Orencia, I remembered my Twitter friends’ poor response to it. He did say, there’s 2 kinds of Orencia (I didn’t know) & I will look into it. But after we have a confirmed diagnosis, we’ll begin with Enbrel and cross our fingers :) Thanks to Barb's video on how to inject the Enbrel shot, I'm not too afraid of it!

I feel a sense of empowerment with how informed I’ve become through the RA Twitter community. I feel blessed & lucky to have made RA friends all over the world & to have found a new rheumatologist. Both have given me perspective, I’ve learned a lot. I learned you don’t have to be a woman to be a heaven sent rheumatologist! I need to name my new doctor, any ideas? :)

My lil' cutie March 2012 :)

P.s. I have to get my lil one to the dermatologist to get a biopsy asap. He’s been complaining of back pain for a while now, plus his knees/legs hurt occasionally. They may hurt more than that, but he’s not a complainer, since he hates going to the doctor. He has chronic eczema, but he also has other rashes, that seem to be relentless. The pains could also be just growing pains, but I need to get him checked. To be continued…

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...