Trust and Transparency with Disease Activity, Decisions, and Doctors
I know you’ll love this guest post from Dana as we see the collision of her experience with the disease, the measurement of disease activity by her rheumatologist, and the decision to change treatments. She conveys so well the process of making decisions about disease management. This is the whole reason we want to be educated and informed!
With RA, there are a lot of ups and downs. For many people, symptoms wax and wane in a series of flares (increased disease activity) and lulls (decreased disease activity). Personally, I don’t have a lot of ups and downs—or, at least, the ups and downs don’t go too far from my own “baseline” or typical state. However, the past couple months, I have noticed an increase in disease activity in my body: new joints being affected; increased swelling in some joints; increased pain in other joints. I tend to think “oh, it’s not that bad” – but then, I realized I’d have to go in for blood work soon because of an upcoming appointment.
The blood work, among other things, would test the sed rate (or erythrocyte sedimentation rate ESR) which is a marker of inflammation in the body. The test essentially involves putting a blood sample in a tall test tube and measuring how far your red blood cells drop in a one hour period. The greater the inflammation is, the higher the sedimentation rate.
I may sound a little backwards here when I say that I was scared to go in for my lab work because I knew that my sed rate would be high. There are many patients whose symptoms aren’t “revealed” via their blood work and they would love to have a test actually show what they feel. For me, however, the test does not lie. In fact, it sometimes brings more transparency than I would like. I tend to be a little guarded and defensive, still fighting that urge to think that “I’m okay” and “I can do this on my own.” I’m not and I can’t, of course, but I also don’t want to admit that things are getting worse; and, moreover, I don’t want my doctor to think that I need new medicines (that’s what happened last time I got my lab work done on a “bad” day). On the whole, I’m happy with my current treatment; iIt tends to work quite well without any side effects.
I tried to wait for a “good” day to get my blood work done, but with vacation and holidays coming up, I was running out of time, and I wanted to make sure that my doctor had the results before my next appointment. So, I did it. I went in to the lab on Thursday and I assumed I would discuss the results with my doctor at my upcoming appointment early next month. But something unexpected happened. On Friday, less than 24 hours from when I had my blood drawn, the nurse at my rheumatology office called. They never call me. She said they had gotten the results of my blood work (already?!) and that my inflammation was high (surprise, surprise). She sounded concerned and wanted to know if I had been sick or if I was experiencing a flare. My response was something along the lines of, “No, I’m not sick. My symptoms have been a little worse lately…just, you know, my hands and feet…and ankles…and elbows…oh, and knees—yeah, I guess I’ve been flaring lately.” She said the doctor wanted to know if I wanted him to write me a prescription for a 10-day prednisone burst to help with the elevated symptoms. I told her no, but thank you. I wasn’t that bad, and I’d be in to see the doctor very soon anyway.
Then, I wondered just how high my sed rate was – that they actually took the time to call me and make sure I was okay. But wow does that make me hold them in high esteem. They could have just as easily looked at the calendar and said, “Oh, she’s coming in to the office in a few weeks, anyways; we can just talk to her then. I’m sure she can tough it out.” Which, well, that’s the case right now, but what if it wasn’t? What if I really was feeling so badly that I wanted prednisone but was too scared to call and ask for it? The fact that they are concerned on my behalf is why I love my doctor’s office and why I feel like I can really trust my doctor’s opinion. So, when I go in for my appointment, I will be open-minded about his ideas on my treatment plan and how to get me back to feeling better. And, I suppose trust has to work both ways, so I will try my best to be honest and transparent about how I’ve been feeling.
Dana and her rheumatologist did decide to change her treatment. You can follow her story and read lots of good recipes on Dana’s blog, At the Water’s Edge.
Recommended reading
- RA is Tricksy: Wandering by The Two Towers, a fun guest post by Dana
- Normal blood tests are normal too: Blood Tests for Rheumatoid Arthritis, part 2
- Some special moments in Chicago back in November!
- A list of more guest blog posts
That is a great example of patient/doctor/office nurse communication. It is definitely something any patient deserves, especially those with “invisible” diseases. We have chronic pain, daily pain that we have to live with, so it is hard for us to admit it when things may be out of control. We want to live as close to a normal life as possible!
my rheummy calls me when my labs are higher than they usually run, which is around 60, he calls when it higher than that and we discuss treatment options
We have an incurable disease. Stop. Plain, simple and SAD. To manage this disese requires skill, patience and cooperation between patient and Dr. It sounds like you you have that part well set. Now, not wanting to take Rx really describes many of us. I have done it myself. In my opinion, you aren’t gaining anything. And in fact, it may even hurting ourself as this incurable disease cranks on, warring inside your body while you experiment.
I am guilty of doing the same three different times over the past 50 years. It made me feel less dependent upon RX but at this age with the disese still ravaging my body in spite of each and every Rx out there I am humbled. My Dr. Has stood by me, probably why she has so many root canals from grinding her teeth! However, we also have a great relationship. I question everything, I read anything I can and WE work out our plans. My disease is rampant and my body ravaged, I even had to have a finger amputated. It was an old joint replacement that the disease started working on both ends here it had been attached… Voila, one small injury and no bone to work with and amputation of right index finger and part of my hand. Worse, by far of all my fusions, swellings and pains.
Good luck with your disease. Continue to work with your Dr. And, again, good luck!
Exactly how it is supposed to work. Love the picture of you, it portrays a joyful fighting attitude in the face of a lot of unknowns. Another person who inspires me with their fight.
Thank you, David! I can’t say I’m always joyful, but I’m trying 🙂
You are so lucky to have a doctor that takes such interest in your condition. I’m glad you’re not feeling the pain but remember this is when the permanent joint damage is done. Sometimes the benefit of prednisone outweighs the risk of side effects.
I completely understand. As long as you don’t get the test/see the doctor, nothing’s wrong with you. 😉
You have a wonderful proactive doctor. That response is amazing!
“There are many patients whose symptoms aren’t “revealed” via their blood work and they would love to have a test actually show what they feel.” That’s me. I see it is stressful on both sides. Hope your new meds work.
Hi Jenn, I really feel for you – and a large number of others do too!! My Rf and ccp are high but with a persistantly low crp / sed, I’ve met numerous docs who think I’m just not sick.
2.5 years ago I wrote a very popular post about blood tests- which quotes studies showing at least some blood tests are “normal” in about 40% of RA cases https://www.rawarrior.com/blood-tests-for-rheumatoid-arthritis-part-2/. There have been several other posts listed in the Tags list under tests – https://www.rawarrior.com/tag/rheumatoid-arthritis-test/
As I’m sure you know, we just don’t have the right tests yet – what we have is better than nothing in the right hands – but actually worse in the hands of some – who use it dismiss physical symptoms. At least in years prior to tests, patients were treated according to the symptoms they report. For now, as patients we’re in a situation where we either find a doctor who knows better and treats according to symptoms or we are not sufficiently treated, as so many patients testify here every day.
I have a great rheumy (who is unfortunately retiring this month) who always involves me in treatment decisions and calls me whenever something isn’t looking right on my labs or imaging, but I have to admit that I recently ran into the downside of all this patient empowerment and it’s left me kind of paralyzed with indecision.
At my last appointment he said my disease activity was concerning and that we needed to make some adjustments, upping MTX to 15mg/week for sure, and then he gave me some choices. I could go on low dose daily prednisone (which makes me very anxious and a little crazy), adding sulfasalazine (which I took many years ago-before MTX-and didn’t get much out of), adding Atabrine (which requires going to a compounding pharmacy), or starting biologics.
I can’t decide and it’s making me miserable; I feel like I need to do something before he retires so I don’t have to face this with a new rheumy, but it’s been too much to weigh and so I haven’t done anything and I’m paying for my indecision with more pain and other symptoms.
I did try going on the prednisone, starting with a 40mg blast and then tapering down to 10mg, and felt great for a few days before the anxiety settled in and I had to stop. I honestly feel that the most effective med in my arsenal is the plaquenil, but I’m already on 400mg/day and he won’t go any higher because of the retinal toxicity; Atabrine is an old synthetic antimalarial and doesn’t cause the eye problems–he also says it’s good for energy–but hardly anyone prescribes it anymore and they don’t manufacture it, so it has to be compounded and will only be covered at 30% on my insurance. I’m more inclined to try it than any of the other options, but can’t find much information on it. Has anyone out there taken it?
I’m also inclined to try the sulfasalazine again as I’ve read that in combination with MTX and plaquenil it’s more effective, but trying something that hasn’t worked in the past also seems a bit like a waste. Biologics are also in serious contention, but I don’t want to have to go in for infusions–I already spend so much of my time dealing with this disease, I just can’t get my head around making that kind of commitment on top of trying to keep working full time.
It’s been a month since I said I would think about it and he’s called to find out what I want to do, but I’m not really any closer to a decision. None of this is easy, but I guess I’m discovering that treatment decisions, even with a rheumy who’s on my side and trusts me to do what’s best for me, is just as hard a part of managing RA as the disease itself. I don’t expect answers here, but the advice and experiences of others would help.
Hi Sam, you are right, just because your doc includes you in the decision making doesn’t make it any easier. When he’s given me choices, especially the first appointment I really had no answers other than to stutter, stammer and say almost nothing other than agree with what seemed like his preference. I’m usually not one who is lost for words but I’ve always been very healthy, until about 6 months ago so I’ve never had to make any choices about medication or treatment before.
I started at 400mg of Plaquenil, which helped my tendons but not the synovitis, next visit added 7.5mg of MTX (1mg a day of folic acid as well), no positive effect. Next visit upped to 15mg of MTX. That helped a lot for a few weeks and tapered off for me quickly. The next visit was given the choice of more MTX or biologics. I put off the biologics that my RD was leaning towards as the next step. A month later after being on 20mg of MTX (plus the 400mg of Plaquenil) and only progressing I called and asked to start the paperwork for biologics.
I’ve now been on Enbrel a month and still waiting for something to happen (I know it is likely to take about 3 months, but I’m impatient). After the initial fear/shock of having to take something by self injection and everything else this all means I am glad to have moved onto something else with the hope of it working for me. The Enbrel has caused me no ill side effects or even pain from the injection. At this point all of this has been over a period of 6 months, a very long 6 months.
HI Sam, I’m sorry to reply 3 days late – I had to be away from the internet.
I’ll see if I can get some more replies for you. The only thing I can add about Biologics is that most of them can be dosed at home by a prepared shot and not an infusion. I also think it’s an good doctor who involves you in the decision process. It means that you own the decision and are more committed to it working – & continuing to comply w/ the treatment program.
Hi Sam – I know exactly how you feel. “I can’t decide and it’s making me miserable.” It was hard enough for me to make the decision to switch from Enbrel to Humira, but it’s now going on 8 weeks on Humira without improvement. There’s a good chance that we’ll have to consider other options in the coming weeks, and that scares me. I also don’t like the idea of infusions, but the biologics I’ve been able to take from home have been pretty easy to administer. They have helped me quite a bit, too…just perhaps not enough anymore. If you like your current doctor, it might be a good idea to work through this with him before he retires. He can probably help you make a decision you’re comfortable with more easily that somebody new. Good luck & let me know if you have any questions about my experience w/ the biologics I’ve been on (you can also read the saga on my blog).
Looks like you have some opinions to add to your decision Sam. One thing I suggest is to discuss with the dr the way each prescription is meant to work so you fully understand and support the decision to take it. For example, in part, methotrexate is prescribed with Biologics in order to inhibit the tendency to create antibodies to the drug. The biologics we have now (like Enbrel) work better and longer with the methotrexate. Unfortunately, no one can yet predict how well which one or which combo will work on each patient. It’s trial and error, even if it’s an educated trial.
It sounds like many of you are very fortunate in having a rheumy you trust. I started plaquenil a few weeks ago. Today my husband noticed a rash on my back and torso. According to various websites, this can be a reaction to the plaquenil. BUT the fact is, it’s Sunday and I’m kinda scared to call the rheumy and bother her with this. She has “gone off” on me before – to the point that I was in tears. Since I don’t usually cry, maybe that was a good thing – just get it out of my system. 🙂 But, never the less, I realize I’m also scared to call her on Monday. I realize now this can’t be a healthy relationship, but I also fear a long hunt for a new doc. The rheumy has also made it sound as if the meds out there are guaranteed to make me feel better. From reading this blog I know that many folks try many meds without disease control. Just feeling like my life has spiraled out of control and not sure what to do.
Hi Beverly,
How is your rash? Did you call her? I know what “gone off” means and I hate that you were not comfortable calling her. I’ve also met some rheumatologists who do the same thing “made it sound as if the meds out there are guaranteed to make me feel better.” It’s so absurd and I don’t know why they think it’s a good approach – they lose credibility. My first rheum doc told me for 2.5 yrs that the Humira would make me better. I was on a double (weekly) dose and I asked every appt, “When can I run again?” and “When will I be able to hold a tennis racket?” – I was always told “Soon.” I only got worse and did not know that there were even other options for treatment. Like you, I’ve learned much from other patients.
I agree 100% My doctor and I have a good relationship and I trust him with my life. I can send him an e-mail about how i’m feeling or if I need a medication refilled. and he will either e-mail me a response or call me himself when he gets the chance. There has been times that he has stayed late after hours to see me when I was having a flair-up. I really don’t think I would be here right now if it wasn’t for finding him.
That is fantastic Mandy! I’m so glad to hear there are docs like that and I hope others will want to emulate him!!
Hi Sam,
Im afraid i probably wont be much help, but Ive been on mtx; it was a horrible disaster for me with no positive side. I then was switched to Enbrel 4yrs ago and I feel wonderful with occasional achiness when i overdo myself. My biggest hope for you is that you find a replacement rheumi that can continue your treatment and get you back on track.
I am one of the “lucky” ones who usually has normal bloodwork… negative RF, anti CCP fine, HLA normal etc, etc. It is SO frustrating to have no way of seeing “paper evidence” of my disease activity, but I’m sure if it was the other way around I would be cringing at the thought just like you.
I am thankful my rheum doc basically focuses on listening to how I’m feeling and monitors activity that way. Your doc sounds very thorough.
Thanks for the post. So cool to be a guest blogger on RA Warrior! 🙂
Sam, I just had to throw a different thought out to you…if the Enbrel works well, you may be a candidate to go off all other RA med. Your Rheumatologist may not want to at first but if you realize that the enbrel is doing the trick after a couple of months, you might be able to drop the MTX! Just food for thought.
Hello, I am on a combination of plaquinil, methotrexate and a bi weekly injection of Humira, this seemed to get pain under control. I am diagnosed 4 years now, but recently I have more joint pain, as reduced methotrexate from 20mg per week to 15mgs as ALT was high, it amazes me that this 5mg reduction makes such a difference . Hopefully will be able to increase again soon.
My Rheumy, always says the reason, she got my RA under control was I did exactly as I was told and tolerated meds very well.
I am RF positive, and was struck down, within 3 months. Having just had an ankle fusion, triple arthrodesis, I realise the damage was done, while I was on the predneselone, I won’t be in a huryy to take that again! Maybe it will be necessary. My Rheumy is a great woman and I have total confidence in her, she always calls me back and keeps up to date with everything.
I have only good things to say about Humira, so far so good.
Thanks Kelly, and everyone else, for replying to my post. I especially appreciate the information on the biologics–it’s good to know what I might expect if I go that route.
Just a little update on where things landed. I decided that I wanted to start this next adventure by trying the quinacrine. I’ve always tended to the oldies but goodies, tried and true, and since I’ve had good experience with plaquenil and was better on it at 600 mg, I wanted to try adding it before moving on to the biologics. Quinacrin was more commonly used with lupus, which I’ve always leaned towards on the lupus/RA fence, and according to the old articles I dug up it’s also supposed to help a lot with fatigue which I’ve been having a really hard time with lately.
Unfortunately, by the time I made up my mind, my rheumy had moved on. But I just saw the new one he referred me to–and had that odd new experience of seeing someone younger than me–and she seems like she’ll be good. She spent a good amount of time with me, really did listen, was curious, did a full joint exam, and was willing to try the quinacrine. I’m actually pretty hopeful I’ll be able to stick with her and not have to go looking for someone else. What a relief, especially after hearing from so many others about the difficulties finding a decent rheumy. I’ve been pretty lucky at least in that regard. So the script is at the compounders and we’ll see how it goes.
Thanks again for your posts and, Kelly, for having this site. It’s been a real help to me for the past couple of years as I try to be a more active patient and get some control over my health.