Tuesday, July 26, 2016

Chronic Pain Management in Hemophiliacs, An Unheard Story

For the past couple of years, I've been weighing my options in terms of seeking medical treatment at my current Hemophilia Treatment Center (HTC). Deep down, I've felt more like I've been a statistic, rather than a genuinely cared for patient who lives with hemophilia. The treatment center has gradually slipped into an unforeseeable decline of patient care. Let me explain.

A very serious issue among the 40 something patient populous is the management of chronic pain, stemming directly from permanent joint damage derived from hemophilia related joint and muscle bleeding. Multiple bleeds over time, in my case almost 4 decades, have left me immobile in many of primary joints including left shoulder, right knee, right elbow and both ankles. The pain from this type of damage is at times, very intense and severe. Many times, leaving patients spending long nights lying awake in their recliners hoping and praying for some sign of relief to the inflamed joint so they can simply sleep.

Today, I was pretty much ostracized for my condition by my chronic pain management doctor, who up until today has been warmly welcoming to my condition and case. What was to be a routine follow-up appointment, ended in me questioning whether or not I was a lowlife addict who was only there to receive pain medication. His exact words, and I quote, "There is no need for you to be on pain medication, you appear today to be doing well." After explaining to the doctor that I've been having trouble sleeping as a direct result of pain from my joints and right elbow, he was forcibly quick to chime in, "Yeah, but you don't need a medication to sleep, there is nothing wrong with you." Upon attempting a second time to reinforce my disease of living with hemophilia, he looked and said, "I'm weaning you off all medications, and will put PRN on your appointment slip," which means no follow up. I left the clinic feeling worthless, defeated and that I was only there like an addict seeking a fix.

Let me be clear, I've seen the horrific effects of pain medication addiction even in my own family, I know the risks of being an addict versus taking a medication on an "as needed" basis for relief. I am in no way addicted to pain medication, and solely do no rely on them for daily function. Hemophilia and chronic joint pain go hand-in-hand, and no one in the industry today seems to want to blow the lid off this issue. The chronic pain management doctor gave multiple attempts to try to alleviate my pain by prescribing Gabapentin, and Lyrica, both neuro blockers that treat muscle and nerve pain. But, my pain isn't directly muscle or nerve, rather direct bone to bone grinding and internal joint hemorrhaging. Both drugs failed miserably at treating my pain, yet I gave them both valiant efforts.

My question to the everyone in the hemophilia community, "Why isn't this issue addressed more in older patients?" Patients today, age 25 or under, don't have the joint deformities we older patients have because they've all been placed on prophylactic treatment regimens to prevent bleeding episodes. Thankfully, now, I am on a preventative treatment regimen as well, but chronic pain is the number one issue that I face each day. I despise going to the pharmacist, handing him the script and the look he/she gives me when they read the drug's name.

And my complaint isn't with just the pain doctor, but the entire HTC as a whole. From their poorly communicated social worker, who has now since been replaced, to the physical therapist that simply walks in, looks at my joints, and states, "that's a really messed up joint right there, what are you doing for it?" Wait... Shouldn't you the physical therapist be offering me insightful knowledge on treatment options and, GASP... possible physical therapy sessions? Rehabilitating a joint, building muscle around the joints will cause a lot less bleeding episodes, but no treatment options are given or offered, just a consult, and out the door and on to the next.

If you're living with hemophilia, and you're currently happy with your doctors and treatment plans, than I am more than thrilled that you've found your niche. But, if you're a patient questioning your own value and worth, and your doctors demeaning tone leaves you feeling more-or-less like a "frequent flyer," than it's definitely time to change. So, as of today, I'm doing just that! I've been with this HTC since March 2009, and in these past 7 years seen a gradual decline of patient care and value. If you're like me, and trapped in the psychological mind game of treatment facilities, than perhaps you should take a stand and change things up. Effective today, I will no longer seek medical treatment for hemophilia from this facility. I am moving my care to to a different city, a new HTC and a doctor whose perspective on hemophilia is more compassionate than the latterly explained.

Hemophilia and chronic pain management will forever be tied together. I stand silent no more, and plan to expose the dark side of the health care industry. Don't stay at an HTC just because you get what you need, that's not progress. Stay because you feel valued, respected and cared for. 


  1. Excellent !
    Mark Antell
    PS. Here's a letter I sent in March to the Board of the Hemophilia Federation of America

    Fellow HFA Board Members:

    Our community is now engaged in conversation on pain medication, probably driven by the current national wave of opiate addiction. I expect this topic will come up repeatedly at symposium. I have some thoughts:
    My first concern is that pain medication be available to relieve severe prolonged pain. An out of control joint bleed is indescribably bad. It blows the joint out from inside. I, along with most of the hemophilia community in the 1950's and 1960's, were undertreated for pain*. I resist returning to those days.

    Some speakers seem to be saying that patients in the hemophilia community are more susceptible to addiction than the average person. I don’t believe that ! Sure many of us have used strong opiates to relieve severe or disabling pain. Also, many of us have relatively easy access to painkillers**. So for sure we face different concerns about addiction than the general populace. But to my thinking that means that we can and should communicate differently about addiction dangers with our affected population. Almost uniquely they can understand a rational message like: “opiates are ok for relief of serious pain. But they make you dumb and dazed. You don’t want to live like that.”

    Over the last 40 years we’ve been labeled with H words: Hemophilia, HCV, HIV. It doesn’t help anyone in our community to paint a new “H” label, potential Heroin addict, on our chests.

    Mark Antell
    Severe Hemophilia A, 2cd Vice President Hemophilia Federation of America


    * From the late 1950's till about 1970, Darvon Compound (propoxyphene plus aspirin) was a standard of care for severe hemophilia pain. Below I provide a quote from one of many articles that come up if one Googles: "Darvon, the worst drug in history."

    "The main problem with Propoxyphene is that it's prescribed as a painkiller, but it isn't very effective, so people take another pill. The drug is a powerful Central Nervous System depressant and even small overdoses can be fatal ... No single drug has ever caused so many deaths."

    Addiction is a problem in our community as it is throughout the world. It's appropriate that we try to reduce addiction in our community. But not at the cost of undertreating pain, or mistreating pain, or labeling us as potential addicts.

    **Also, I do not doubt that many in our community use opiates and/or marijuana to help them live productively despite serious chronic pain. Generally this is not pathological drug taking. Rather it generally is appropriate use of pain medication.

  2. No one with hemophilia or any other kind of pain deserves to be treated so shabby. Maybe you could find a private practice hematologist to get alot better treatment. I have felt for some time that Pain Management Centers are poor treatment for some one with several arthritic joints from old or new bleeds. Actually you may find a Nurse Practitioner to discus this with. If you go to one, they will be more willing to order your meds, and including pain. They are alittle featful to order factor, but pain help and a discussion about what can be done an orthopedic surgeon can talk with you. I'm 71 yr. Old female hemophilia B. I have meds for pain and sleep, and hypertension, depression, rapid heart med. And several allergy meds for my damn asthma. And you are exactly right - we will need more and more treatment and meds for what we get. Best of luck. You wrote a good article. Thank you

  3. This is an extremely important issue that I have been speaking out about at meetings, conferences, casual conversations, and with more doctors and nurses that I can count. I just turned 46 and have Severe Hemophilia A. Left Knee needs to be replaced, both ankle joints are wrecked, bone-on-bone, and a elbow that I can't straighten fully. It's been the continuing degradation of all my joints due to the stresses of everyday life. Oh, yeah, and that Severe Hemophilia thing.

    The treatment for joint pain used to be simply Tylenol. Then Hepatitis C joined me and Tylenol effects the liver, where it is broken down by the body. So that's out. As if it really ever did me any good in the first place. NSAIDS like Naproxen, Advil, and even sodium based Aleve have blood thinning effects which causes an issue immediately. Simply put, there's not one "over the counter" pain reliever that has ever been "safe", much less effective for a person with hemophilia. Aspirin is the other OTC drug that we can't take.
    So what is the alternative? Simply live in pain? Stick with the old "RICE" method? (Rest, Ice, Compression, Elevation). That's what we've all done with a joint bleed. It may help slow the bleed and then "Factoring Up" does the rest. That's NOT pain relief. There should be a Pain Management Specialist in EVERY HTC in the world. A lot of us old survivors have been through so much and yet there has been a blatant and seriously misunderstanding, or perhaps no understanding of what kind of pain a person with severe hemophilia has - at any age.
    I've experienced essentially the same thing with doctors who think you're looking to score some pills. That's insane and disgraceful "care" of that doctor's patient. Total neglect. I don't want to take MORE pills. Damn, I take enough every day as it is. I've been given ridiculously small amounts of different pain meds that don't do a damn thing unless I take "X" amount - and that's obviously not good or something I want to do. 1 5mg Oxycodone pill is like taking a Tic-Tak for a 205 lb man with severe hemophilia. "As Needed"? Try EVERY DAY!

    I too have faced the misconceptions and stereotypes of doctors either not wanting to prescript pain meds or writing scripts for amounts that are honestly not worth taking, especially in a small dose. So again, do I just take 4, 5, 6 of the baby pills? Then I'd run out when a truly serious bleed happens. I'm not addicted to any pain med. Right now, I am living with NO PAIN CARE at all.

    Part of learning to live with having hemophilia is that each of us has our own pain threshold. When the nurse or doctor comes in and asks "what's your pain level?" with a 1-10 scale, the real answer is not even on that smiley face chart. Someone without hemophilia's pain may be a 7, but to me, that 7 is like a 3, on a good day. And when the pain is really bad, gee, how high of a number can I think of? The fact is we live in constant pain and we sort of "get used to it".

    My wife will ask me how I'm feeling and even though my knee is sore, my elbow hurts, and my ankles are swollen, I pretty much say "I'm fine". That's just how I've learned to deal with it. It's a mental thing, mind over body I suppose, but that is not any kind of way a person should have to live. The 10 on the chart is me on a good day. On a bad day, it's about a 37.

    It's so misunderstood and why I really don't know. To me, that should be fully integrated into the overall care for a patient with hemophilia. I've been to HTC's where they absolutely will not even consider pain management. And my response to that is, "why is that chapter in the hemophiliac care booking missing"? So instead of getting help properly from one's HTC, you have to seek out a pain management clinic. And yeah, those are not fun to go to.