Long Overdue RA Update

WOW! It has been a very long time since I have posted anything to this blog. Long story short, I was beat down…and not only by my health. You know that saying, ‘No good deed goes unpunished.”. Yeah, well, I was living it. But that’s a story for another time…

According to some unfinished blog drafts, I started seeing a Rheumatologist sometime in late June or early July (2011). In September 2011, he sent me in to qualify for a new RA drug study (a JAK inhibitor). I flunked apparently and did not get to participate in that study.

From there, he started me on Methotrexate (a low dose of the chemo drug is used to treat RA). I had been on MTX for only 2 weeks when I went in for a 3-month blood draw for my Primary Care doctor. She was rechecking my sugar & cholesterol which had been elevated since the prior year. My PCP was thrilled to see my sugar and cholesterol were beautiful….and then she turned the page to discover that my ALT (liver enzymes) had nearly quadrupled. She felt a little better upon hearing that I was now taking MTX, but wondered if my ALT would stabilize or continue to get worse. That I would discuss the following week when I returned to the Rheumatologist.

The rheumatologist strikes me odd every time. He displays little emotion…make that no emotion. Just when I think he’s going to leave me on MTX, he says, “Well, it’s clearly not working for you, so we’ll try something else. We have many other options.” So, he writes me an Rx for Arava.

I follow up with more bloodwork about 6 weeks later. My ALT has returned to a normal level. During the visit, he asks me a funny question, “Are you still dropping things?” I gave him a puzzled look. He informed me that I had told him I had been dropping things. I find it very odd that I cannot recall #1 dropping things and #2 telling him that I was dropping things. So, I decide that from now on I will, to the best of my non-journaling self, keep better track of what’s going on from day to day…or as something happens.

A particular health app on my Android makes it easy to click the day, make a few notes, or check off some symptoms. It’s not an RA-related app (which I’ve asked my husband to write for me!), but it helps me keep track. Another good indicator of what’s going on with me is my internet search history. When I’m dragging tail and having to take 3-hr naps 4 days a week, I’m likely to Google “WTH???”.

So, for 4.5 months I kept track of how I felt. I found that every joint in my body…joints I didn’t know existed…ached…relentlessly. Excruciating heel pain (it feels like my heel bones are poking through my feet) that I had experienced in August while away in IN, was plaguing me 24/7. I was fatigued…taking those 3-hr naps I mentioned almost every afternoon. Driving was become a concern for me as I struggled to stay awake on any drive outside of town. I was accomplishing nothing on my daily to-do list and forgetting…and forgetting…and forgetting. I forgot to pay our storage rental every month and twice they locked me out. I even forgot to go to a meeting that I had scheduled. I was starting to feel depression creep in because I felt lost within myself. These were not normal things for me. And it bothered me… a lot.

At my April 5th appointment, I presented a page long list of the issues I had been tracking, along with several questions he had yet to answer or I had forgotten ask previously. He read them over…or appeared to. Oh…and I pointed out this weird moving object under my skin on my right knee. He felt both of my knees through my jeans and declared, “That’s just normal knee parts.” I reiterated that this “nodule”, I guessed…MOVED…around….freely. I could slide it around with my finger. He dismissed it. Grrrr.

Back to my 4.5 month of notes. He glanced it over and remarked, “Your complaints look more like Fibromyalgia than RA.” He paused to look at my file and said, “…But you have a positive RA factor, so you definitely have RA. (pause) But you can have both.”

Now, he moves to switch me from Arava to a different RA drug…an injectable. He mutters things about not knowing which injectable my insurance approves. According to him they each have their own drug they start with….but then he decides to just write an Rx for Humira because he “thinks” that’s what Cigna will approve.

I am so dumbfounded by his final remarks that I completely forget about the unanswered questions on my list. He tells me to continue taking Arava for 1 month WHILE I take Humira. BECAUSE…he wants me to see just how good I felt while taking the Arava.

Excuse me???

I’m suffering from a real disease and he treats me like I’m a freaking hypochondriac just because he hasn’t found the magic bullet potion that will work for me…and they’re may not be one from what I see of some RA patients. But don’t tell my PCP because she tells me that only the few people who have a bad experience with a medication post online. The other 95% are too busy living and enjoying their lives to post about their meds online.

What is completely fascinating is that I had stopped taking Arava about 4-5 days prior to my 4.5.12 appointment. I didn’t refill my prescription because I suspected he would switch me…again. I have been off Arava approx. 29 days…and I’m feeling better. Fewer joint aches. A lot less fatigue (I have only taken 3 naps in this whole time). My mind is clear. I can remember the things I need to do…and follow through on them. I’m actually getting things done that have been piling up for 5 months.

I left that appointment 3.5 weeks ago disgusted…and done with that rheum. Finding a doctor one can trust is really an exhausting job in Florida. So, I’m on the hunt. Not sure where to go…how far I am willing to drive…etc. I am even considering going out of state. I’ve got a couple prospects, but I want to proceed a little differently this time.

Right now, I’m feeling better than I have in MONTHS! I still have joint aches…I still have RA, but I’m not ready give up what I’ve gained…mentally and physically…just yet for the unknown side-effects of a new drug. I’m taking names, making lists, keeping track, and praying…and praying…and praying. One thing I have come to realize lately is that God has a plan in this…and I’m content in that.



RA Update: Meet JAK

Imagine you have a headache. It’s bad enough that you fumble through the medicine cabinet for your typical pain relief choice.

Now imagine that the bottle of pain relief boasts “Reduces pain up to 20%”.

Ponder that for awhile, I’ll come back to it.

Last week, I finally had my appointment with a new (to me) rheumatologist. I haven’t formed an opinion of him yet…entirely. Communication is definitely better than with the other rheum. He seems to be staying educated & informed on rhemu stuff.

Still, the first treatment option he mentioned was Methotrexate. Uh, yeah. I wasn’t comfortable with Plaquenil (an anti-malaria drug), so I’m definitely not comfy with a chemo drug. However, he went on to tell me about the latest in RA treatments…JAK Inhibitors. He said he attended two different medical thingies for RA in that past year that discussed JAK Inhibitors.

So, he sent me home to do my research on JAK Inibitors. And this is where I come back to the 20% relief I mentioned earlier. I did my research…even called one of the drug manufacturers. It’s still in clinical trials (which he told me), but the news I found was interesting. There was all this excitement in the medical world because the JAK Inhibitor in trial for RA is showing a 20% relief.

I guess it doesn’t take much to excite doctors and pharmaceutical companies these days. Twenty percent? Would you bother to take that headache medicine if it only promised to relieve your headache up to 20%? I know I wouldn’t. I want 100% relief & I don’t think I would even notice 20% less pain.

To be fair, I researched it further and found that the ACR (American College of Rheumatology) has this % rating system. I’m not sure I understand it completely, but this new RA med has a 20%, 50%, 70% & a remission rating. That means that different people experienced different levels of relief at varying levels of dosages. (But it was the 20% relief that had the pharmaceutical company dancing a jig in the 1st article I found.)

Right now, I’m not sure where I fall on the optimism scale for JAK. On one hand, my pain is increasing weekly. But I’m not sure I’m ready for hard-core medications. I am especially not comfortable with taking anything without a plan. I know they want to be aggressive early on, but I just haven’t seen enough…or any…evidence that any of these drugs do anything. So this is all up in the air for me right now…which is fine.

Tomorrow, my regular doctor will be reviewing (with me) my latest bloodwork drawn earlier this month. I’m curious to compare it to last year’s. Then I will review that bloodwork again with the new rheum in about two weeks. He may order more bloodwork. Oh joy.

Worse than the pain is feeling like there are no good choices. No, there is something worse than that. Being frustrated by well-meaning advice-givers who don’t understand that Rheumatoid Arthritis is not “just” arthritis. It isn’t “just” joint pain or inflammation that can be helped X, Y or Z. It’s an auto-immune disease. My body is attacking my body and I am being tormented by all the miserable options to control it or modify it or live with it. And it’s even much more than that…


Diagnosis: RA (part 6)

In part 4 I told of my decision to stop all NSAIDs and how I actually felt better after I did that. In the 6 weeks between my August appointment with my Rheumatologist and my September appointment with my Rheumatologist, I only had one day where I took any OTC pain meds. While we were on our vacation, I developed a migraine at one point. So, for that I took a migraine pill or two. For my RA though, I took nothing during that time.

Shortly after I returned from vacation I had my next appointment with the Rheumatologist. I was already kicking myself for setting a 8am appt in St. Augustine so soon following our return. Suffice to say, I was less than thrilled at 8:10am when the nurse informed me that the doctor had just called and was only now leaving her house. It would be 20 minutes if I wanted to wait. I waited.

In the mean time, I asked the nurse if I could get a copy of my blood work from my previous visit. She also gave me copies of the reports from my x-rays. By the time the doctor arrived, I didn’t even need the doctor. I had all the pertinent info that I was concerned with obtaining.

The doctor reviewed the x-ray results (which said nothing because they didn’t see anything) and asked about pain meds I was taking. She acknowledged that I had reported a bad reaction to Naprelan, but she said, “I’ve never heard of it doing that before.” (This is something that burns me butt about doctors…denial. Things that are flat out stated in the precautions for medications and they feign ignorance and disbelief.) I shrugged off her denial and she asked about what OTCs I was taking. I said, “Nothing.”, but she replies, “So, you’re taking ibuprofen & aspirin?”. I politely reiterated that I had been taking neither ibuprofen & aspirin and I also told her that I had been feeling better. She immediately began squeezing my joints to assess my pain. Tender, but improved.

Next, she asks me how I am doing taking Plaquenil. I inform her that I did not start the Plaquenil because she had told me that I needed an eye exam and approval from my eye doctor before I could start it. (I realize it was only a partial truth on my part, but I see no benefit of trying to explain to her my concerns after she denied that Naprelan can cause swelling from fluid retention which can lead to heart failure.) She tells me that I misunderstood her & that only if I was 40 or older would I need to eye exam prior to starting the medication. Since I was under 40, I could take it & then get an eye exam. I guess my eyesight is less important prior to age 40.

I patiently and silently waited while she wrote out all of the instructions for how I was to take the Plaquenil. This time she wrote me a prescription to see the eye doctor too. Now all is fine and dandy and I’m to return in two months. Oh, yeah, she actually said I had “early RA”.

Unfortunately, over the past month my pain & swelling have returned. I have only had one night in that time where I experienced so much pain at night that I had to take aspirin to help me sleep. On 3 or 4 occasions I took Advil PM because my hands were really aching at bedtime.

To clarify: I am not taking Plaquenil. The thought of taking something that suppresses one’s immune system seems foolish to me. As I sit here with a wonderful head cold, I ponder what having a suppressed immune would lead to and am grateful I am not taking it. Most recently I have read that most of the people taking these routinely prescribed drugs in the past 20 years are either dead or disabled. Sound real promising. Another tell-tale sign is that the first 10 parking spaces at the rheumatologist office are for the disabled. Something’s obviously not working.

The other side of this, the alternative options, are not providing me with much enthusiasm yet. I’m hopeful that there is something, someone with real advice for alternative therapies. So far, everything I have come across sounds the skepticism alarm. Everyone has a product to sell.

It’s a bit discouraging, but I’m continuing to pray for an answer…a real answer. I’m convinced it’s out there. And I’m also convinced that God has a plan in this.

Diagnosis: RA (part 5)

I apparently wrote this back in August & forgot to Publish it. Such is my life. I’m publishing it now because I have more to add to the saga.

Color me not happy.

After patiently waiting for a week for a return call from the Rheumatologist’s office regarding the Prednisone test, “I” had to call them again. Which in reality means little as I still had to wait for a return phone call.

The call finally came. And the immediate response from the Rheumatologist via the nurse is that I am to start taking the anti-malaria drug. Though I gave the nod & smile response, I have no intention of taking this medication. Especially since the Rheumatologist has yet to say, “Yes, you have RA.” All she has given me to date is excuses for why she can’t say whether it’s RA or not. (The title of my blog series comes from the diagnosis given by my GP.)

The nurse also indicated that I should “continue” taking Naprenal. At that point I spoke up, “I cannot take that. I swelled so bad after only two days that I almost called an ambulance.” She’s going to speak with the doctor.

At the end of the conversation I was told that I could expect swelling while taking Plaquenil, but I should take it as prescribed. Are you kidding me? The way to “treat” inflammation & swelling due to RA is to prescribe drugs that cause fluid retention which can lead to heart failure?

I spent the morning researching various nutritional sites with information specific to RA. Now, you can color me skeptical. The advice “specific” to RA was very non-specific in reality and more heavily based on a personal conviction rather than anything.

Diagnosis: RA (part 4)

Since going on Prednisone for 3 days (Tues-Thurs) this week, I have been off my typical daily routine of Ibuprofen in the morning & Ibuprofen & Aspirin at bedtime. On Friday I started with a once-a-day prescription dose (sample) of Naprelan (naproxen sodium).

To my surprise, I found myself very swollen & tired on Friday & Saturday. Sunday morning at 4 am I was starting to get concerned. Not only was the swelling worse than my normal RA swelling, but I felt this heaviness on my chest. I had this sense that if I was asthmatic, that I would be calling 911. Actually, this heaviness was felt throughout my body. All of my limbs felt like they were filled with lead.

Since the boys were away camping, I decided I could afford to sleep in later on Sunday with only the girls & myself to worry about. I dragged myself out of bed at 8:30 am, grabbed another carton of the Naprelan, found the insert & read “May cause Heart Failure due to Fluid Retention”. Oh, great!

At that, I didn’t know what to do. Do I just not take the Naprelan & everything will be okay? Do I need medical attention? Can I take something else for the pain or for the swelling?

I sent out a prayer request via my phone & prayed that I would just get this junk out of my system without any further side-effects. Here I was, worried about what Prednisone could do to me without giving a 2nd thought to Naprelan. Why should I? My experience with steroids has not been positive. Yet, I have taken OTC naproxen numerous times without any problems.

After church, the girls & I went to the grocery store. Since I didn’t think this was of an ER nature & knew I couldn’t speak to the Rheumatologist until Tuesday, I stopped in to CVS to talk to the pharmacist. He immediately directed me to the diuretics. Interestingly, I already take a water pill to help with normal RA swelling, but per the insert, Naprelan negates diuretics.

So, no more Naprolan for me! And hopefully I can get some relief from the swelling & pain by going back to my regular routine of OTCs for now. For the long haul, for many reasons, I’m still seeking nutritional healing…and maybe a Rheumatologist who is closer to home (as I’m sure more tests are in my future).

In the mean time, something I am determined to do, after reading other RA blogs (thank you DreamsNColor for the RA connections), is to make a complete list with names, doses, etc. of EVERYTHING I take…whether it be on an as-needed basis, natural supplement or whatnot. I have come to realize that this information is VITAL to have in order. I cannot simply rely on my memory or clear communication with every practitioner.

Until my next RA update…

Diagnosis: RA (part 3)

Yesterday I started taking the Prednisone that I’m supposed to take for 3 days. I was expecting like 1 pill, once a day. It was 3 pills twice on day 1 (total of 30mg) & will be 2 pills twice per day for today & tomorrow (20mg). I don’t know if that’s high or not.

So, I took my first set of 3 pills and waited to see if it relieved any pain. Then I took my next 3 pills before bed. I was not allowed to take any ibuprofen or aspirin & had to rely completely on the Prednisone to do what it was supposed to do. Otherwise, it was going to be a long, tortuous night of pain & restlessness.

By the time I went to bed, I did feel as if the pain had been relieved a bit. This morning my hands felt even better…still swollen & still painful when lightly squeezing the knuckles (that’s how the Rheumatologist checks them), but a vast improvement from recent weeks.

Something unexpected happen though. The swelling and pain in my cervical spine was gone when I woke up. It’s been swollen & painful for months!

See, for some reason, there is a lot of debate among Rheumatologists as to whether one can have RA in their spine. Patients with RA & back pain say, “Absolutely!”, but it’s not always so easy to get a doctor to agree with that. Whether she agrees or not, the matter is settled for me.

Now, I am only talking about my cervical spine. My thoracic & lower back are a different story…and most likely related to a .5″ leg-length discrepancy that was only diagnosed in 2008.

Anyhoo, this morning I had my x-rays done locally. It was pretty quick & almost a pleasure because the technician was my kind of person. We enjoyed our conversation, albeit short, during the x-ray session.

The rheumatologist should have the results tomorrow. I don’t know when “I’ll” get the results. I have to wait 2 weeks before I can request a cd of them for my own records. And I’m not scheduled to see the rheumatologist for 6 weeks! (I’ll have posted a vacation series of posts by that time! 😀 )

Now, I have to do some more research of the anti-malaria drug. Until I’m able to get the nutritional healing advice that I need, it might be better to do something rather than nothing.

So, that’s my RA update for today. I’m supposed to check in with the rheumatologist after I finish the Prednisone tomorrow. Would be nice to hear about my x-rays during that phone call as well. But again…it’s hurry up and wait…and wait…and wait some more…

Diagnosis: RA (Part 2)

It’s been several weeks since I first posted about receiving a diagnosis for Rheumatoid Arthritis (herein known as RA). In that time I’ve been doing a lot of waiting. I waited to see the Rheumatologist. I waited to get more blood work done. I waited to see the Rheumatologist for a follow-up.

(Medicine has become very inefficient in this country…making me run from appointment to appointment – from county to county – from doctor to doctor, but I guess that’s a topic for another day.)

Today was my follow-up appointment with the Rheumatologist. Unlike my GP doctor, she did not share my blood test results with me. I still can’t figure out why I didn’t ask for a copy. Anyway, she told me in the most non-committal medical diagnosis way possible that it’s probably RA.

She also drew the conclusion that my back pain must not be too bad since I wear heeled sandals and haven’t acquired any more shoe wedges. Because “if” it was bad, you know, I would definitely do something. I don’t know what she thinks I’ve been trying to do for 3 yrs. Trust me, it was never my intention to seek out parenting advice & anti-homeschooling arguments from orthopedists & rheumatologists.

Again, I’ve strayed from my main topic….

Apparently, RA is hard to diagnose without witnessing the physical effects such as gnarled hands that happen when left untreated. The RA factor being high is only an “indicator”, but these additional blood tests for lupus & whatever else were supposed to rule out other possibilities. I guess they did, but even that doesn’t make RA an automatic clear diagnosis.

So, I’m off for more tests tomorrow. Having my hands & feet x-rayed. She also wanted to do a chest x-ray, but said the insurance “might” give me a hard time. Again, I don’t know why I didn’t speak up and say, “Who cares? Do the x-ray if you think it’s necessary & I’ll worry about fighting with Cigna if it comes to that.”

In addition to the x-rays, she is having me take prednisone for 3 days which could give another RA indication if it relieves my pain. I was not and am not thrilled with taking steroids…again…because of what happened to me last time…and the battle of the weight gain I have been fighting ever since. She sort of empathized but said it was only for 3 days & shouldn’t have those kinds of affects. Then she told me to limit my “intake”. Great! Just prescribe me some of those magical I’m-not-hungry pills & I’ll be fine.

What comes next is what I am not really not ready for…the possible treatment. It’s an anti-malaria drug they have been prescribing for RA for about 10-15 yrs. She wrote it down & told me to look it up. Since I had to get my prednisone, I asked the pharmacist about the RA treatment. As we chatted he printed off a drug information sheet for me. He was very helpful in helping me understand this other drug & other possible treatments. I’m just not crazy about suppressing my immune system to keep the RA in remission.

I dialed the phone as I drove out of the pharmacy parking lot. I’m going to try to see or at least talk to a different type of practitioner at the end of our westward vacation in September. I’ve heard from several sources that RA can be successfully treated through nutrition. Exploring that seems more reasonable to me than suppressing my immune system. and I can already tell that natural options are not going to be popular with this Rheumatologist. Don’t get me wrong, I’m not saying she’s a bad doctor. I’m sure she treats her patients the best way she knows how. I just don’t think that way is the way for me.

Symptomatically speaking, I have been in more pain in recent weeks in my hands especially. Even she noticed how swollen my hands were today. While I can make a fist, just don’t ask me to grip anything. Opening something like a soda bottle or vitamin bottle is disturbingly painful. Honestly, my hands weren’t in that much pain two months ago. Don’t know if it’s just psychosomatic from finally knowing what’s causing me pain or if this is really getting worse. Time will tell, I suppose.