Without e-Patient Input, an ER Experience Can Be Empty
Things that patients know about their health and the wealth of information they find online make input from patients valuable and meaningful. These patients are called e-patients.
An e-patient acronym:
Expand Participation by Allowing The Input of Evidence Not in Textbooks
Hopefully, you didn’t miss the exciting news for rheumatology e-patients acknowledging that by “pooling our knowledge and resources we aim to forge stronger links between healthcare professionals and patients that will in turn improve the management of arthritis…” This e-patient acronym was meant to go with that post. My daughters and I have been working on it.
Why wasn’t it posted with it?
It’s been a struggle to work with my shoulder this week. If you’ve read my RA onset story, you know that my shoulder flares go back 25 years. Five years ago, when my RA turned unrelenting, my shoulders went right after my feet. One night I awoke with sawing pain in both shoulders. For several months, I thought I might never fix my own hair again since I couldn’t put my arms over my head.
Eventually, I became able to do my hair a couple of times a month, but it often causes a few days of worsened flare. Monday night, the saw showed up again. We all probably have some kind of process we follow when pain gets bad. Immediately, I began taking my maximum doses of Lortab and ibuprofen on a schedule.
That got me though a couple days, not able to do much, but with manageable pain. By Thursday evening, I wondered whether my shoulder was still as bad. The side effects were getting annoying (itchy skin, sleepiness, and stomachache from constipation). I bet you guessed… I decided to skip my bedtime doses.
At four o’clock this morning, I became keenly aware of my error. Pain skipped past levels 7 and 8 while I slept. I thought I was having a baby in my shoulder.
Ever notice doctor appointments never coincide with the worst pain or swelling? It’s Murphy’s Law of Rheumatism.
I’ve never seen a doctor when it’s so bad. I thought to myself, maybe I should.
I could not go to my good GP today.
So, I found the website for “reservations” at the local mini-ER. I hesitated, filling out the page and then deleting it 3 times. The first appointment was not until 10 a.m. It was now six.
Crazy from tiredness and pain – I tried to see if I could survive without medicine a few more hours. I vacillated, doing deep breathing. The pain radiated down my arm and across my back. Alone in the dark, I admitted I was weak. At 6:50, I took a Lortab.
The ER doc did not find my shoulder convincing.
I started to cry when he left the room. What do they want? I kept crying. What else can we do?
Anyone could end up a patient like me
We watched the Sophie Scholl movie this afternoon. She said, “You will be standing where I am standing now.” It reminded me that I heard the callous ER doc behind the desk on the phone discussing the special school his children would be attending next fall. “He has children…” I thought, “Doesn’t he realize that one day his children will be sick?”
There is nothing I could have done to cause or avoid having RA. There is no way I can prove the agonizing pain and stiffness in my shoulder. Would he want his children to be believed?
For two years I’ve written my golden rule of medicine: Treat patients the way you’d want your mother to be treated. Today, I write its corollary: Care for patients the way you want your own children cared for.
See the new e-patient t-shirts and cups!
Recommended reading
- More on the innovative idea of Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious. from Susannah Fox on e-patients.net
- Study on NIH site: The experiential health information processing model: supporting collaborative web-based patient education
- My previous post on successful of rheumatology e-patients in UAE and Canada: Positive Signs for Rheum Patient Activism
I don’t get it – did the ER doc not believe you had pain and thought you were drug seeking? Did he not offer anything? That’s awful!
Do you have an orthpedic that you see? Sometime a cortisone injection or a short prednisone taper will help and they can do that too. Although you certainly have to be careful with how often you do that with any joint. Of course, the ER doc could have offered that too.
Nothing like being in excrutiating pain and having someone treat you like a crackhead drugseeker. Makes your day, I’m sure.
Before I had full blown RA I had a series of random symptoms that came and went. I woke up one Sat. morning with my wrist swollen and painfull and unable to move it. I thought, how did I sprain my wrist and not know it? I couldn’t use it, so I went to the ER. I look young for my age and lived in a college town. In the ER, the doc looked at my wrist and asked how I injured it. I said I didn’t do anything, I woke up with it looking like that. He asked how much I had been drinking the night before! Thanks a lot doc! I said none, but I’m sure that he didn’t belive me. They decided it was an over use injury – in my sleep! While I was drinking I suppose! Arrrgh!
I got a splint and some anti-inflammatories…
It seems to me that we deserve to be believed. Too many times, I’ve not been believed. And I never go alone. And too many other patients have a story like yours. It makes me wonder if they are trained to think we are malingering / drug-seeking??
Hi Kelly,
I like the e-patient acronym and the message “pooling our knowledge and resources… we aim to forge stronger links between health care professionals and patients that will in turn improve the management of arthritis…” I pray and hope that with the strength of everyone who is fighting this disease that together we are heard, and the message transcends to better care for everyone. You are doing a wonderful job in leading the way. Again, I am so grateful I found this site. I had no idea what I was in for when this started…now 15 weeks ago. I thought that the severity of what was happening to me would be treated immediately. I never would have guessed that after so many years since my grandmother passed with this disease; there would be such a problem with diagnosis and treatment.
As for your shoulders Kelly; I am so sorry! I have been suffering for a very short time in comparison, but my shoulders started to become a main source of my pain about 6 weeks into the illness. I told my regular doctor, my rheum doctor when I got an appointment, and finally the ER doctor, when I ended up in the ER for my swollen wrist/hand/arm. I told all of them that the shoulder pain was excruciating (both shoulders). I told them I could not get sleep; that I would wake up every few hours in agony. They all said (except my regular doctor) that it must be from another source, not having to do with the rheumatoid symptoms that I’ve been having!! My regular doctor thinks that all the symptoms that have come in the past almost 4 months have to do with the arthritis. He thinks the Rheumatologist will make a decision soon about my illness. I hope so, but here is the interesting part. When they put me on prednisone in the hospital, and continued at home; my shoulders started to calm down and the unrelenting pain eased up, and got better!! When I got down to 10mg the RA symptoms all came back, including my shoulders. This would tell me that my shoulders have everything to do with the RA symptoms. Why wouldn’t they know that? You are diagnosed and still running into this problem… I can’t believe it. I hope your shoulders are letting up from the pain. I wish that education and knowledge could get to the doctors faster…We will have to shout louder. Great work Kelly!
Deb Delaney
Hi Deb,
Good comments and questions.
If you read through the almost 13,000 comments here, you’ll see that being diagnosed is not the end of getting the right treatments – it’s the beginning. I’m working on a post on this – when things are “injured” or “flared” even though it may have been caused by the RA, it still needs to be diagnosed & treated. Some respond well to disease treatment and that is the end of it. But most require ongoing treatments due to variuos problems caused by the RA. I’m not an expert on shoulders – I really should do more research – I don’t know what’s wrong with mine. But SOMEthing is and a doctor would be able to diagnose it if s/he would listen to me and examine it properly instead of wasting time acting like I’m lying.
My rheumy checks my shoulders – both of which hurt. I tore a rotator cuff at the very beginning of this journey but during my treatment for that, the other shoulder started to complain and now is a much louder complainer than the previously injured one.
Shoulders can certainly be affected by your RA but also tendons and muscles weakened by inflammation and lack of exercise (it is so hard to get the exercise you need when everything hurts!)are easily injured. That is why it is so important to exercise gently and be careful not to lift heavy weights or overextend your joints. Exactly what I did to tear that rotator cuff.
Injured or inflammed shoulders are especially painful when you are trying to sleep – there is no comfortable position to relieve the pain. And you are so right Kelly, no matter why they hurt, they need treatment!
It’s unfortunate that the ER docs see so many patients that are drug seekers and that so many ER docs immediately assume that everyone is a drug seeker. So unless you have a bone sticking out – you are at a disadvantage in the ER and likely better off with your rheumy. I’ve been there and it’s not a good place. In pain, with no respite and no help. You shouldn’t have to beg for an examination and treatment!
OMG isn’t it always like that? When you go to an ER unless you have massive trauma they do not believe the pain you’re in. I just want to day we aren’t all like that. I always felt I had the health problems and pain I did both as a child and and adult was so I could empathize with my patients.I had been there so I knew how they were feeling.And I could treat them the way I would want to be treated. Unfortunately not many of my collegues have had those kind of experiences.Maybe it’s because having seen so many attentions seekers or drug seekers you tend to become jaded. It’s very hard not too. After awhile you do get that sense of who is really in distress and who is not. I’m so sorry for your experiences and pray you find the kind of compassionate and empathetic practitioners that will help you and you deeserve.
I am so sorry for you Kelly!I am praying every day that you find a wonderful rheumy.You do so much to help others!Thank you so much for all you do.I am sure things will change for you soon and you will find someone to help you.Please hang in there.So sorry for any pain you are having.I will keep the prayers going your way.
I’ve been more fortunate with my ER experiences, but not by accident. I purposely chose a rheumatology clinic associated with a good hospital that does a lot of immune system research, so that’s the first advantage.
I didn’t ever have to go to ER even with 20+ years of severe RA including knee replacements, until one day a few years ago when my hip pretty much went ballistic without notice. I could not move my leg even a few inches horizontally on the bed without excruciating pain, and had to have my husband help me get up from bed. No cane would have helped as it was a huge effort for us both just to get me sitting upright with legs over the edge of the bed. With hubby’s bad shoulder, we *almost* didn’t make it! After getting me to the bathroom less then 10 feet away, then the agony of getting down to the toilet and back up again, I pronounced that we were going to ER. I knew from my previous surgeries that going to the bathroom independently was a criteria for being released to go home after surgery, so I figured it was time to go to ER.
I’m sure they might have been skeptical, but since all my treatment records were in the system, I’m quite sure that helped. I was given injections of Diladid (it took 2) and once I had *no* pain they had me try to walk again. FAIL! At that point they admitted me as I simply COULD NOT WALK AT ALL. With or without cane – that didn’t matter.
I don’t remember now what they did in the hospital for me. But after a couple similar incidences where I was sent home with short-term high-dose prednisone, I got smart and asked for a standing prescription for same so I could avoid the entire ER department, stay home, and get treatment a bit earlier. No problem. Since then I have learned the wonderful practice of calling my rheumy when things get beyond my control. Evenings, weekends, no matter what the hour, there should be a doctor on call if yours in not available. Usually I get told to go ahead and start the high dose prednisone, but I’ve had to use this method to deal with medication side effects too and am quite happy to avoid the ER.
I found “I’m trying to avoid going to the ER” to be a powerful statement when talking with the doctors on call. And if you really do need to go to ER, you’ll already have a doctor’s support when you go. After all, who wants to make the trip and wait, possibly for many hours, when you are in excruciating pain?
I really hope some of my experiences might be helpful to some out there. I was pretty terrified of going in to the ER the first time, certain I would encounter the drug-seeking protocol. I’ve been pleasantly surprised, but I wouldn’t place any bets if I had to go somewhere outside my hospital’s network for treatment.
What you say at the end is definitely the key Mary – that kind of network is not available to many rheumatology patients. It sounds like it’s an ideal that other systems ought to emulate, though.
Like I said, I avoided the ER for 20 yrs. The last time I went, I was admitted (for an emergency D&C). This time, I did believe it was warranted. The meds now are back to around the clock to make the pain manageable; hopefully that will work until the shoulder settles; hopefully on its own. But other joints are similar.
I have a long history of RA. (TKR’s 8 years ago) Recently I was awakened in wee hours of morning with extreme pain in hands and feet. Couldn’t close my fingers or stand long on my feet. Crawling back to bed (all I could do), I called my rheumatologist, to which I got an answering machine. I explained I was in bed, in EXTREME pain and not being able to get out of bed..because of the PAIN. I finally received a back after lunch hour and was told to go to the ER room. And what other than refer me back to my rheumatologist would the ER do? Phfftt! As long as my doctor gets my bloodwork every six weeks HE’S happy. *And he’s supposed to be one of the best!! I asked if I could call to report when I had the flare ups (I have pics showing the swelling) in-between my visits to backup my disability claim and was told they could ONLY report my office visits and they never heard of keeping track of flare ups. I’m at a lost… feels like the twilight zone!
Why is it so often in the wee hours…?
Yes, blood work every 6 wks is all I’ve ever seen my rheums worry about either. Anything else, I begged for, such as x-rays or scans or the one time I got injections in finger joints.
Yes, that is a great point about recording flares. Some were discussing that on Twitter how we could use electronics to line up appointments with flares? Flares matter. Mine are non-stop yet they are not recorded – not in our charts. No wonder it’s so hard to document disability. Our charts are full of blood tests that can’t possibly demonstrate our symptoms. I went all through mine and there has never been a joint count even once. Most of my symptoms aren’t in there. No rheum doc has ever taken my temp. I always have a fever.
My new rheumy actually chided my for NOT calling him when I had a flare – though no where near bad enough to send me to the ER – he said, “When you have a flare, call, we can help. We will see you. Call me. If you need something to help you through it I can call something in if you can’t come in.”
This, Rose and Kelly, is the kind of rheumy you need. He listens, he believes, he cares, he treats.
So sorry that happened to you. I live near a urgent care clinic that is open 7 days a week till 8 pm. It is nice clean and never has a long wait. The doctor there was the one who diagnosed my RA. If I am in terrible pain as i have been many times he treats my pain. I cant stand hospital ers as like many of you I am treated like I am a junkie.
This is also a nice clean mini- ER that is an extension of a hospital. Very clean & empty. Nice staff. But the dr. did not think I looked sick or in pain. I kept lying in bed wishing pain had a color. Like blue for 10 or green for 4, so they could know. Silly thoughts when you are desperate.
My one trip to the ER they documented me as drug seeking, loaded me up on dilaudid and sent me home so stoned I was drooling but still in pain. 2 weeks later I got a letter asking me to come back. They didnt even wait for any lab results to come back before sending me home. Seems I was having a heart attack and my kidneys weren’t functioning well.
That’s awful Tanya. I have heard about more than one woman having a heart attack in the ER and it not being treated/ noticed. Plus it’s in Elizabeth Cohen’s book too and the lady died in the parking lot.
Murphy’s Law of RA…lol…that’s my name. MMMMMM…..maybe that is what is my problem 🙂 I was so sorry to read about your continued ra problems and the lack of empathy with the doctors. If they didn’t do anything for you in the er why are they charging your insurance company? I hate ER’s just for the reason you mentioned. I have been blessed as I have only had to go one time due to my ra and the hospital was affiliated with the group of doctors…they had my medical history. The gave me 2 shots of morphine and thank goodness too…the pain was that bad. It was everywhere and I was running a high fever as well…ra fever to boot. I keep hoping and praying you find a good rheumie soon. This just isn’t right at all. You deserve better then what the medical profession has been handing you lately.
They agreed to do an xray of the shoulder which they told me in less than 5 minutes: It’s negative. They gave me a handout on RA that said to rest my joints if they hurt. The techs were all nice about – everyone but the dr.
Sorry if I slandered your good name! LOL.
A handout! How helpful! Arrrgh!
My rheumy takes my temp on every visit. He has me fill out a patient wellness form while in the waiting room – for each visit – that details how things have gone since my last visit – joints that are giving me trouble – and yes it goes through shoulders, elbows, hands, knees, hips, feet, neck, ankles, etc. More or less difficulty with housework and work, walking or stairs, nausea – you name it – and he reads through it. And he examines them all – gently if I say they hurt – more firmly if I say they don’t, which sometimes elicits pain and sometimes does not but lets him know how they are doing. I get a printed patient summary of the visit when we are done and access to my records online. I’m thinking this is how it’s supposed to work.
“I’m thinking this is how it’s supposed to work.” Hmm, I’m thinking you are teasing us. 😉 This is reading like a textbook written by e-patients.
Just curious: What would he say if someone has RA in every joint, unrelenting, and un-responsive to meds? What does he say about CRP? Does he approve of you reading online about RA?
Could give him some kind of award…
I’m not teasing. My CRP is only barely elevated and I am seronegative. Although I haven’t told him I read your blog (and some others)online so I don’t know what sort of response I would get to that. My first rheumatoligist was a disaster. No xrays, insisted it was OA in spite of the symptoms occuring almost over night. Treatment was minimal – he minimized my pain and waved me off.
I went to the Cleveland Clinic for a second opinion – that’s where my current rheumy is. They are really that good. He did the blood work again and xrays on my hands wrists knees ankles and feet – no OA. I had very little visable swelling when I saw him but considerable tenderness in my joints and he took a detailed history of onset and course since onset. He did an extensive physical exam.
He explained to me that as many as 15% of patients with RA can be seronegative throughout the entire course of the disease but some do convert and that based on my clinical presentation and response to medication – this after an intial diagnosis of inflammatory arthritis, probable RA – he diagnosed seronegative RA.
When he suggests a medication he gives me a handout with information about the medication – and website links to look it up. He tells me to call the office if I have additional questions after I have read it and decide if I want to try to add this to what I am taking. While I don’t feel like I am exactly driving the bus, I do feel like I get to decide what stop I want.
I am treated with respect and he pays attention to my questions no matter how stupid they sometimes sound even to me. I am not feeling great yet but I am feeling very hopeful that he will use everything in his arsenal to help me.
I would guess that some of his patients have to be like you; I know from what I have read online that a fairly large percentage of RA patients with severe RA fail one or more or even all of the biologics or even if they do get a response if doesn’t arrest the disease but only slows its progress leaving them with a lot of pain and disability to deal with.
I’m not sure how I could get the answer to your question though I wish I could. I know my symptoms are considerably milder than what you are experiencing and I know how difficult my symptoms have been for me. Though I currently have symptoms in a lot of joints, since my orginal onset, my flares have not been of the intensity that you have described. I had that briefly and know it can go there so believe me, I believe you, and any good rheumatologist should believe you too.
Of course, I was kidding, Leslie. I remember your older comments. The comments mean a lot to me. It’s all of you blogging back. This is the main way that I learn! All together with emails and FB & Twitter, it’s over 100,000 posts easily.
I’m not surprised at all that it’s Cleveland Clinic. Read Anne’s onset story. I’ve heard more of it, but even what you can read here is very telling.
The stats I read on neg blood markers are much higher, but what does it matter if you are that one?
It’s only the CRP and ESR that have refused to be elevated with me. I have learned so much because of my doctors refusing to – it was go crazy or find answers. I often tell my kids I wish that I really were only crazy instead of this. You could put me on meds for that and give me psychotherapy and I’d at least think I felt better. They do not appreciate the joke, but it is so relevant to me, that I keep telling it. I really do wish I were imagining this or exaggerating. At least that’s more treatable. My RA has just stayed at that place where most people are with there “flare” only all the joints have been added. It is phyisal misery, but one learns to consciously search for joy. Such as my Roo sitting by me now. He is smiling as I type. 🙂
I wish I could share my rheumy with you – this is the kind of doc you need!
They’re out there – how is that good rheumatologist list coming? Got any in your area to try out?
I know when I was looking for that second opinion I sure could have used a list like that! Looking for a rhuemy is like darts in the dark!
The list is growing, but we’ll call them to make sure they are willing to be listed. It’s a project. One suggestion near me that I can check out. Already, I never go alone; now, i’ll also not go without another RA patient-chaparone-advocate-witness. One or two people seemed to think that I was somehow disrespectful or challenged the docs I’ve seen. It’s far from the truth and I want to make sure I have proof of that because the problem you encountered with your 1st rheum is rampant. We need to fix it & I know there will be resistance.
I honestly think if they don’t know what to do with a patient, they feel aggravated. The drug reps show them studies that say 50% get remissions. That has been disproven, but they may not know that… Problem is that a third of patients don’t respond at all. And those who do respond to ACR20 or ACR50 or even ACR70, still have problems. More on those ACR response ratings soon…
There are other problems with rheum care too, so, I’d like to be stronger so I can do more such as travel to attend the researchers’ presentations I’ve been invited to. Work is very slow with the current health situation.
Kelly,
I print off a blank calendar each month and jot notes on it to track how our daughter (polyarticular jia 8 months now) is feeling before and after her Enbrel and mtx injections, what joints hurt, illness or infections when she goes off meds etc. Then I carry a copy to her dr at the next appt so he can have it, too. I thought I could remember at first but the days blur together when she hurts. Her dr is very thorough and you never are rushed. Praying that you will find the dr you need and some relief to your pain!
Janet, this is a wonderful procedure you created. It would be great if you’d like to write down how that works & we could publish as a guest post. Maybe we could do a carnival where we all make suggestions to brainstorm better ways to track our progress.
I wish it were not so, but we really are fighting an uphill battle to convince docs that we are not drug-seekers. The problem is, these docs see so many drug-seeking patients that they view all pain patients as if they are seeking drugs. The thing is – we ARE! But for legitimate reasons. How to convince them? We really can’t unless they already are primed to “hear” us and believe us. But they aren’t! It’s a vicious circle. Invisible diseases like ours are horrible not only because we are frequently in “nailed to the bed” pain, but because we usually can’t get any relief for it – not even a little.
And – IT’S NOT FAIR!! But that’s the way it is. So we have yet another “little” project to work on – what are the right buttons to push to get the ER docs as well as our PCPs and rheumies and surgeons see that we are in pain? Do we have to come in crying and screaming? I don’t react to pain that way – even smashing my thumb. I get very quiet and fold in on myself, talk in a whisper, and avoid moving as much as possible. So I’m not going to impress any ER person! And I’ll bed most of us are like that!
That has been my observation Elizabeth, too. Most of us are that way. But however we handle pain, it is a sign that something is wrong & it should be heeded. So glad there are fighters like you on our side.
Leslie’s rheumy really rocks! Don’t get me wrong, I really like mine too, but I love the detailed tracking of all the joints and the changes in functional abilities at each appointment, along with all the encouragement and records access.
Next time I am at my rheumy’s appt, I will ask if he knows of a good rheumy in your area. It won’t be for a couple months, though.
Just so to clarify – my patient summary at the end of the visit doesn’t have all of that detail on it – my vitals that they take, including temp, my current meds, the Dr. orders incuding new meds, tests or xrays and instructions for between visits, when my next visit should be, when I need to call for test results. What is available to me online is my test results only for those tests done at the Clinic – tests done elsewhere don’t get in there – my meds list – no doctor’s notes.
But you are right – he rocks! And this is waaaay more than I have ever gotten anywhere else. When I decided to seek a second opinion I was desperate for help and thinking I would wait months (again) for a first appointment. Meanwhile I am dragging my butt to work and can’t open a water bottle and am almost in tears to climb the stairs (I know – it can get waaay worse than that) but I called on a Thursday and they said they could fit me in on Monday! I called with a question about medication and the doctor called me back – Thanksgiving weekend!
Forgot to say, I don’t go alone to any appointments (or ER visits!) either. It’s not just fear, although I do have that from prior docs, but also it really helps to have someone else to listen and ask questions, and remind you what you forget after the appointment is over.
Sometimes, Kelley, your blogs hit too close to home to avoid. In February I had trouble with my left arm/shoulder resulting in tendonitis in the rotator cuff and in the upper arm. I popped the muscle from the bone and ended up with a popeye muscle. My PCP referred me to an orthopedic specialist at that time. I regret to say that I did not go as money was an issue and it costs me $40.00 to walk into a specialist’s office.
Now it seems, my right arm and shoulder are going through the same thing except the pain is more excruciating. I called my Rheumy on Tues. to see if I might possibly get in to see her asap. only to be told that she is booked until July. Gee, I have an appointment in July. I was allowed to talk with her nurse practioner who took my info and said she would get back with me. Within a half hour she had called to tell me to a. Take up aerobics and b. change my lifestyle.
I have been seeing this doctor for 5 years and this is the first time that I have ever called her asking for an appointment. Currently I take 20 mg. methotrexate/week and 20 mg. piroxicam/day. I live alone and work so I figure I get quite a bit of exercise by just existing. As for my lifestyle, I’m putting in an order to be 20 years younger, rich and no RA!
Donna, I agree. I agree that the 5 years should mean something: that you are not crying wolf. I felt the same way at times – I hardly ever complain – even though I can hardly do anything. So, I start to wonder if I have less treatment because I ought to complain more, but then I do seek care & I’m shot down. It just doesn’t pay to be sick. I know we’d give anything to not be! I’d choose young, rich, and no RA too – AND A MUSTANG CONVERTIBLE!
PS: The exercise comments are awful. I WISH I could say others haven’t told me similar things.
Kelly,
As I was reading your experience, it made me cry. I felt your pain and knew exactly what you were going through, how you were feeling as I also experienced the same.
My prays and thoughts are with you and everyone of us that have RA.
God Bless All!!!!!!!!!!!!
I’m curious…do you not respond to prednisone? When I flare in my neck (loved your description of “having a baby in my shoulder,” very true for my neck), I have prednisone and vicodin ready to go. The vicodin helps the pain but it is the prednisone that does the real work. Does it not help you?
so far, I have not, Clare. Many patients have commented that they don’t respond to anything below 20, 30, or even 50 depending. The only 2 rheum docs I’ve had were both in the modern anti-pred camp. I finally asked for pred last fall & was given a low dose – when it did’t work, I asked to raise it – gradually we did. Finally, got to 15 which doc did not feel comfortable with – and it did not have any effect on the RA. I did have side effects, but w/ a new doc, I guess I’d be willing to try 20. I don’t see how I can do the things I need to do if something doesn’t help because the last 5 yrs have been only downhill w/ the RA since it kept spreading & nothing has helped. Everything is hard to do & takes more time.
15mg? that’s nothing…how can your doctor not try to give you more given your condition, at least to see if it works? i am on a 5 mg maintenance dose, but when i flare my dr routinely has me take a dose of 30mg or so, and gradually taper it down. are you saying you have NEVER TRIED that??? what? and even with some side effects (i’ve never had any), wouldn’t it be worth a try to see what’s worse?
The 2 docs I’ve had were anti-pred period. It was after 5 tx failures, that I talked the last one into any pred at all. The MA actually went to double check & said “Dr. __ did NOT prescribe pred.” I said “Yes, s/he did.”
Doc always said, “the steroids are just a mask.” I have never talked back even if I ever disagree because I doubt I could change a docs mind & in this case I was actually afraid to lose the best doc I’d found. I know that sounds awful- I’ve been very transperent here about my epatient journey & shared this before. This is discussed at length in Elizabeth Cohen’s book as I’ve said before. Even many physicians feel this way in the doctor appointments when they disagree (due to the nature of the relationship in most cultures).
Anyway, I have a comeback now that I have thought about it a lot. A light bulb would be a mask too. To change the natural situation of darkness. But we use it gladly.
i have never heard of an anti prednisone doctor for something like RA. i just don’t understand how you’ve never been given a chance to try it. so what if it’s just a mask if it lets you live normally for a while? i guess i’ve been lucky with my doctors but honestly, this blows my mind. and not to be rude, but with all of the stuff you talk about with your RA, how can you not be more proactive about trying it? people with RA take prednisone. it’s STANDARD for a flare.
There are lots of rheum docs that don’t “do” steroids. This one was always saying, “It’s only a mask” and saying side effects were too dangerous. The only other doc I had was the same way. (I have met a few others in my life, but only for a visit to be told I’m not sick enough to need rheum meds becuase my crp or sed rate aren’t high enough.)
I may read and write a lot about RA, but I cannot prescribe for myself. Even doctors are not supposed to treat themselves. I don’t know what you mean by proactive, Clare. I’ve requested it & finally did get it, as I think I said before. Reluctantly after 5 yrs of unrelenting flare, I was given a low dose. Doc thought I was pushy obviously when I wanted to see what else was available to me to start pred & get the bone scan. After 5 yrs of being unresponsive & having normal crp and sky high anti-ccp, it seems perfectly logical to request it. I’ve always been very respectful even deferential usually- as copies of all correspondence would show and yet, my doctor fired me – apparently for insubordination of asking for a 2nd opinion on the bone scan.
If I had not had contact with hundreds of other patients who tell me the SAME story, I’d wonder “why me?” But I know I’m not unique. And the frustrating care I’ve received is extremely common.
I’d much rather be lifting weights & playing tennis. I used to run for an hour with a smile on. Honestly, this is not how I wanted to spend my life. It doesn’t seem fair, but life usually isn’t. I took 5 “risky” “chemo” treatments & did everything I was told – and I only get worse. I can’t imagine being more proactive – but a patient can only do so much if doctors put up a brick wall. I read tearful letters almost every day of people who feel like they have no hope because the meds don’t work or the doctors won’t give them. Sometimes in the end, I wonder if I’ve experienced all of this so that I would be there to believe other patients stories. When someone tells me all this, I believe them, because I’ve seen it first hand.
Kelly, if you have the money/insurance, then it is far time for you to seek out an expert/second opinion Consulation. I suggest going to National Jewish in Denver, CO.
http://www.nationaljewish.org/about/depts/medicine/rheum-endo-gastro.aspx
If that is too far, then try Cleveland Clinic. Also, after consultation perhaps one of those places could give you a good referral to a good doc back home to work with – whether that be a primary or a rheumy – hopefully one that would work with the diagnosis/docs from National Jewish or Cleveland Clinic.
National Jewish is specialized in only lung, heart and immune related diseases. Been around for a hundred years. Give it a serious thought. They are extremely thorough and you would probably see more than one doctor and have tests re-run and interpreted – by someone who is going to know how to interpret them in the context of autoimmune disease.
I am an e-patient. I have found it a detriment at time as many doctors despise an educated patient. I now interview doctors and ask them straight out if they would have a problem with an educated patient. Although recently, one said “no” it was soon discovered he really meant yes.
I have been using a lot of meditation lately as I am allergic to codeine based drugs. Sometimes it helps me get above it. Other times I just scream.
I was told recently by my doc (whom I respect) that most likely my health scheme will turn down an electric wheelchair for me because I have two hands — never mind how useless. Or, he said, they will blame it on a preexisting condition. Frustrating.
For those on Medicare: Beware the Medicare advantage type plans. I have found nothing but frustration with them!
Kelly – I am sorry to hear that your shoulder pain is so unbearable, and even sorrier to hear how you were treated in the ER. Am I surprised? No.
I had a terrible ER experience pre-diagnosis. It’s occurred during the onset of my RA, at a time when I had no idea what was happening to my body. My hips felt like someone was repeatedly stabbing hot daggers into them with brut force. I couldn’t sit because my SI joint was so inflamed. I couldn’t walk or eat. After 48 hours of pain that was a 9 on a 10 scale, I told my husband to take me to the ER. It was not a decision I took lightly. The ER doc talked down to me from the beginning, rolled his eyes, spoke to me as if I was a 4 year old child who had just disobeyed him, and basically told me I was wasting his time. This was at a hospital with an excellent reputation and many ivy league educated doctors. It was frustrating and humiliating, and I ended up with a referral to a GI doc. Thankfully, the GI doc turned out to be excellent and suggested that I also needed to see a rheumatologist. Anyway, I got the last laugh when I received a survey from the hospital asking me to review my ER visit. You can bet that I had fun completing that survey.
And for the record, I had to laugh at your comment about having a baby from your shoulder. Even though pain like that is no laughing matter, I can totally relate. I’ve had several babies from strange places too!
Kelly,
I’ve had a lot of shoulder pain in the past year. Finally went to ortho doc, who said I had good strength still (ha!) in my shoulders, so he suspected that my rotator cuff tendons were not torn, but probably due to RA , had thinned considerably. X-Ray didn’t tell him much, except that I had a small spur and that my humerus had drifted upwards on both sides. That further made him suspect weakening of the rotator cuff tendons. So he had an MRI done on my left shoulder and sure enough my rotator cuff tendon is about 25% of the thickness is should be. He has me slated for some very cautious physical therapy to see if a bit of strengthening can help it. He said about the only thing he could do was a subacromial decompression http://www.ortho-md.com/subacromial%20decompression.htm), because repairing the tendon was out of the question – he said it was so thin it wouldn’t even hold a suture (lovely). He said that he often sees this condition in his RA patients. Both of my upper bicep tendons have torn and he isn’t surprised about that either. Fortunately, those are not critical to using your arms. (I tore one some 8 years ago and the other one went recently – didn’t even know it when it happened). At the moment, my shoulders aren’t hurting too bad (flaring must be down), but when they are, oh boy! I can sympathize.
Mark
wow. thanks for all that information. good luck w/the therapy & I guess pull-ups & push-ups are out of the question too. (joking).
I was reading up on shoulder anatomy recently, wondering if I could figure out what is wrong with mine and learned there are 4 joints. surprised. I think it would at least be helpful if a dr would ask me to point to where it hurts.
Might be a good idea to see an ortho doc just to get an evaluation. I haven’t had much luck with rheumies actually diagnosing anything. Ortho doc knew way more about my shoulder situation than rheumie.
Of course, I had to undergo an MRI which is never cheap.
Mark
Thanks, I’ve been saying ortho ortho for months. Hope I can find a good one. Don’t know what the situation is w/ that.
You might try http://www.vitals.com or Angie’s List – sometimes you can get lucky through those – at least sometimes you can get some opinions from fellow patients. Not easy that’s for sure – not sure where you live, so can’t offer too much advice on that. Oh, you might also check http://www.castleconnolly.com/doctors/index.cfm – that will give you some of the best docs in the country – good resource.
Mark
I read Mark’s comments with interest. My shoulders are killing me! (I can sympathize Kelly!) My right is worse than my left and my rheumy had given me a cortisone shot and a prednisone taper – that helped but after the taper – right back even worse. Then a flare and oh baby! Another taper and now physical therapy. I am beginning to develop bad feelings for this shoulder. PT does help. Prednisone does help. Cortisone does help. Nothing seems to make it better.
My inflammation markers are up and my rheumy thinks we may need to up my meds – maybe that would help. I just know that having your shoulders hurt and not move does suck – a lot!
I would only say about prednisone – be careful. In the 14 years I’ve had this disease, I’ve had a couple of tapers (5 day dose paks starting at 25mg as I recall and tapering down). I was in a lot of pain before I finally asked for those. Prednisone feels great when it works – in fact you feel like Superman, but the long term consequences aren’t so pretty, so I’d err on the side of caution. That said, sometimes the pain is just too damn much and I wouldn’t blame anyone for succumbing.
On the shoulders – a few too many nights of having to sit up in the recliner trying to sleep spooked me enough to seek out an ortho opinion. It is interesting, however, that some days, I can get up, get in the shower and easily raise my arms above my head. Then the next day, I can barely get one of them past 90 degrees. I think there is less damage than flaring going on, although I think over my 14 years with the disease that the damage slowly progressed despite the metho and caused the thinning of my tendons. I’ve been so freaked out at various times over the years, thinking surely that some joint of mine was doomed, only to find out it was in a flare state that could last months and once that period passed, it would be fine again. However, what we don’t always see immediately (or feel) is the slowly progressing nature of the disease which is raising some havoc behind the scenes. I sometimes think I should have jumped on Enbrel about three or four years ago, but my rheumies thought I was doing ok on metho and couldn’t really tell I was starting to have issues (not that my current rheumie could tell – he gives about the worst physical exams I’ve ever seen). My current rheumie is also a bit nervous about the biological drugs – he’s had a few patients end up in the ER with pneumonia, so one day he thinks I shouldn’t take it and then another day he thinks I should. I’m thinking he’s just worried I’m going to blame him for the outcome and doesn’t know which way to turn.
Mark
My rhuemy wants to max out the mtx and add plaquenil back in before we go with a biologic. I’m ok with that plan. He does use the prednisone as a bridge and for flares. He is also open to a low dose as a longer term treatment. There is certainly side effects to be taken into account with the prednisone, but you can’t discount the effectiveness.
I see this post/comments are 4 years old but oh my…I’ve had RA for approx. 9 years but Sjogrens Syndrome(my eyes) for muchmuch longer. My eye doc is amazing-he had pushed for me to be screened for autoimmune disorders since ’95 but without fail all my family docs pooh-poohed that. One finally had me tested for rheumatoid factor-it was negative so she said this proved I had nothing to worry about. Five years ago I started getting shoulder pain-it was bad and my office job didn’t help. Fam doc at the time sent me for Xrays-those indicated Osteoarthritis and I got cortisone injections as often as I could for next couple years. Then I had a torn rotator cuff….with rest (unpaid leave of absence) it went from partial tear to full tear (huh?)and I developed a partial tear in other one, also whilst on rest/leave without pay. It was very painful and I was turned down for disability to try and heal. The doc I was going to got tired of my whining I guess…she finally told me that it was “just inflammation-why the tears?” and also that it was “very common”. Not sure how this could be helpful to me and I found a new family doc. My rheumy insists the shoulder issues/rotator cuff issues unrelated to RA and that it’s possible to have RA and OA ya know. Rheumy is usually good but the disinterest over the shoulder issues has been difficult. I ended up retiring early (on reduced pension) as I couldn’t cope at work with the pain or lack of sleep from pain. I didn’t “look sick” so some colleagues figured I was lazy which stung as I’d been there 22 years with no work issues. Current family doc is pretty good and was so compassionate on my first visit that I nearly cried from relief that she believed me! But I wish to God I was healthy.