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50 Responses to “Death by Rheumatoid Arthritis: Possible and Preventable”

    1. Sara Galer says:

      What a wonderful book review but what a tragic and devestating story! I hope i can order the book from the uk?!? X

    2. ViD says:

      Thanks for sharing this, Kelly…and kudos to Carla for choosing to write about her mom’s difficulties in order to help others going through these RA conflicts.

      We finally bought copies of Empowered Patient, and I think Carla’s new book will reinforce the message passed along in this other book as well.

      Maybe, someday, both physicians and patients will be on the same page–we know some of them are already, but many are not, unfortunately.

    3. Tim says:

      Thank you, Kelly, for posting this article. As an RA patient myself, this review is both frightening and empowering. I personally applaud the author for making public, her mothers’ personal fight with RA. The courage of both Carla and her mother, Celia, is to be commended.
      Thank you for the inspiration.

    4. mlillich says:

      My mom has very bad Ra and has for 25 years and has started haveing bad pain in upper part of her back between her sholder blades would this be the cervical area? and her doc is one of those that says RA does not attack the spine…

      • The cervical spine is the neck so the shoulder blades might be below that, but her doc should be the one to look. And RA can affect the thoracic spine also, so it should never be ignored. I hope your mom can get a good second opinion.

    5. Ali says:

      I’m really interested to read this. I have had ongoing neck problems, stiffness, extreme pain but my Rheum has told me that it’s unlikely to be related to my RA. I had a nuclear bone scan last week and I am now crossing everything that if my neck problems are related to my RA it will show up on the scan. Thank you so much for sharing this information.

      • Good luck Ali. I hope you can find answers with your scans. The radiolologist can make such a difference. There are lots of things that did show up when my scan was re-read, but there most of my RA is not in the reading because of the poor quality of the images. Have you had mri’s?

        • WOW! That sums up the stuff you have been posting. This is actually scary but something we need to all be aware of with ra. That and the incidence of heart disease from ra that undiagnosed. I also saw an article you had linked on your bulletin board section about the falseness of medical studies. I couldn’t post there, unless I am missing something, and just had to say….I have ALWAYS believed this in my heart and soul. And…it explains why so many drugs have had toxic and even deadly side effects that caused them to be pulled from the market. Course now my questions is….as empowered patients, where in the world do we get accurate/safe and reliable information from? Any suggestions?

          • It’s hard isn’t it? Conclusions from medical studies can be all over the place. We have to keep reading what’s out there to weigh the evidence. We have that and listening to our bodies & what other patients tell us they experience.

            Your questions are the reason I started building this website. I was asking those same questions.

        • Ali says:

          I have had one short MRI for my sacrum and lumbar spine – ordered by an orthopaedic surgeon. The report found some bulging discs but the ortho basically said from an ortho point of view, everything looks fine with your sacrum (which is another significant area of pain for me). I don’t think the radiologist was looking for changes related to RA. I’ll have to bring it up with my rheum again. She hasn’t seen the images but I know that she can access them through the hospital. Thanks.

    6. Judy says:

      Hi Kelly! My atlas bone (at top of neck) was one of the first places I was attacked by RA – I could not move my head for a couple of months and held it tilted down since that hurt the least – I recall someone telling me to “lift up your head, no wonder your neck hurts!” to the extent where they came over and actually pushed my chin up – OW!! Ignorance is the worst. Since then, I have been on Prednisone, which has masked the pain and progression – but the few times when I’ve missed doses, the pain shows up in my cervical spine (below the atlas bone), between my shoulder blades and in my ribcage — RA is places where I have been told it “CAN’T BE”. If not RA, then what is it? My imagination? Keep up the fight Kelly, we need you and each other!!

      • Judy, you know I won’t believe it’s your imagination. lol. And though the prednisone might do a good job making you feel better, I’m not convinced it’s stopping damage so I hope your doc is keeping an eye on it. I have a lot of pain, movements, & noises in my neck too & docs all seem to respond differently to it. My last doc seemed very convinced that the ribcage RA is common at least. I hear from so many patients who say they have it.

    7. Kay says:

      Bought it, read it. What a terrible shame that she suffered so long and didn’t have to.

    8. Rainwaters says:

      Thanks for the biography. I’d like to know what symptoms plus pain people have with spinal cord / central nervous system autoimmune disease.
      I’ve been diagnosed with pseudotumor cerebri, (benign intracranial hypertension) when I had fleeting episodes of blindness upon standing or laying down.
      Blindness with left or right neck rotation, flexion extension of neck, rapid acceleration/decelaration of power wheelchair. All worse on prescribed opiate painkillers.

    9. Alison says:

      Hi,

      I just thought I’d write and say how important this article is. I am currently writing from my hospital bed having just undergone an emergency operation on my neck. I had no current symptoms. My neck had hurt in my 17 year history with RA, but not recently.

      I had pins needles in my arms legs and mini blackouts. I thought it was drug side effects- but a routine visit to my Chiropracter who took an X-ray of my cervical spine proved different and showed a severe atlantoaxial. Visits to neurologist and rheumatologist confirmed and operation to stabilize undertaken. I had no idea this could happen. No one ever told me how serious and how common. Please please get your rheumatologist to check. It is vital. I survived ignorance. Please don’t take a chance. Get it checked. I am only 40 with two young children, ignorance would have been utterly devastating. Please get it checked. Remember you may have no symptoms!!

    10. Wow! I am a newly diagnosed (6 months) RA patient, but my mother had RA for 60 years. Fortunately, they discovered what they called a “fracture” at C-1 that could have paralyzed her had she not had major surgery to stablize her spine within 10 years of her death from parkinson’s and probably a stroke (the massive amount of steel in her spine prevented her from having an MRI for an accurate diagnosis.)

    11. Missi says:

      I’ve had RA since I was 20….I will be 42 this year and have always been concerned about death….reading the title of Carla’s book scares the heck out of me….I want to read it but afraid to read it…..but you can bet I will buy it and get through it…..One thing RA has given me is STRENGTH to keep going…..

    12. Missi says:

      I can only find this n NOOKBOOK format ? I dont have a NOOK or KINDLE but want very much to read this…..can anyone help ???? Please !!

    13. Betty says:

      Kelly,
      It is so important to get this message out. Cervical spinal cord compression presents with so many symptoms that can be attributed to other physical ailments. I went undiagnosed for years. Thankfully my compression was at the C4 thru C7 vertebrae. I had neck pain, stiffness, shoulder blade, arm and hand pain, numbness and tingling, headaches, swelling in the neck affecting swallowing, dizziness when looking up and finally loss of balance. I was in excruciating pain! I could barely get my docs to listen to me. My rheumy sent me for an emg which showed nerve damage in my hand and forearm but not extending to the neck! I had carpal tunnel surgery, no relief. I was diagnosed with tennis elbow also. I had a lumbar spinal fusion a year earlier and was not fuseing. I saw my neurosurgeon and told him how much pain I was in and all my other symptoms. He ordered an MRI on both lumbar and cervical spine. He was shocked when he saw the MRI. Spinal cord compression at all 3 levels. I had surgery right away. I had all levels fused, 2 metal plates and 8 screws to stabilize the spine. I have to be sure to do follow up with the neuro and report any other symptoms. I am so grateful to him for listening to me! That was in April 2010. I still have some residual symptoms that may not resolve completely but I feel so much better.
      You really need to advocate for yourself. Doctors are busy and sometimes if you don’t insist, they won’t do anything.

    14. Bon Crosby says:

      This is so good to know Kelly and scary. I have had RA since I was 20, and in my 40’s got really bad. Now in my 60’s I have been through most of the meds and use the Rituxan 10 hr. infusions plus all the INSEDS,Prednisone and pain meds.My spine has shrunk 1 1/2 inches in the last couple years. My neck has severe pain when I sit and type for a while. I have also seen obits of people who died from RA. It will attack the organs and eyes. One friend in Louisiana was blinded. This whole disease scares us when we let ourselves think too hard about it. I try not to. I don’t have a good doctor where I live and am hoping one will move here soon. Thanks again.

      • You’re welcome, Bon. Hopefully, we will live to become gray & wrinkled like an elephant, I always say. I hope you find a good doctor to help with that.

        By the way I’m still in my 40’s and my spine has shrunk the same amount in the last few yrs. My sons get taller and I get shorter – I don’t really like that… Does the Rituxan really take you 10 hours?

        • Chelsea says:

          If the girls measure me correctly at the docs office, then I’ve lost an inch and three quarters and I’m only in my forties too. Anyway, I’ve read elsewhere in stories about individual patients, that sometimes doing the infusions at a much slower rate helps prevent some of those infusion-related reactions. This might be more important for older folks too.

    15. Roxy says:

      I guess i better check on my spine because i have spinalstenious (spelling)& its painful,i will get this book..

    16. Jessica says:

      I too had cervical spine involvement as a direct result of Rheumatoid Arthritis that became life threatening (I was 26 yrs old at the time, I’m 30 now). My condition was called atlantoaxial subluxation. I also had a Chiari Malformation. As a consequence of enormous spinal instability, I developed a seizure disorder, would stop breathing during these seizures, it would take 3 people to hold me down when they would occur because of convulsing, I ended up being life flighted in a helicopter twice to the University of Maryland twice where my doctors and surgeons were, and eventually in June of 2008 I had C1-3 of my spine fused and a piece of my skull cut out to make room for my cerebellum to also help with the seizures (the skull piece is the Chiari Malformation part of it). A piece of my pelvis was cut out and used in the fusion to promote bone growth. I was in the ICU after the surgery for close monitoring.

      My doctors sat me down when I was trying to decide whether to have this surgery or not and they told me that without it, I would, without a doubt, die within the next few months. Their words were that if a seizure didn’t kill me, that one good coughing fit, one good sneeze, one good pothole, and my spinal cord would be severed at the brainstem level because of how unstable my spine was, and I would absolutely be dead. I had already come so close to dying several times already, so I chose to go ahead with the big surgery.

      This spinal instability again is called atlantoaxial subluxation and is indeed life threatening and unfortunately in Carla’s case, was fatal (my sincerest condolences). I am still dealing with epilepsy (ironically, I am being admitted to Hahnemann, associated with Drexel in Philly on Monday for tests and observation b/c my seizures remain so severe). THIS IS DUE TO THE RA. It is not uncommon for people with Rheumatoid Arthritis to be diagnosed with epilepsy and/or other neurological disorders due to spinal involvement that can become life threatening or fatal – 2 neurologists and 1 neurosurgeon have repeatedly STRESSED this to me. Carla and I are proof of this. Take care of yourselves everyone…
      Jessica

    17. Jennifer says:

      I will take the time to read the book,’Death by Rheumatoid Arthritus’; I’ve just buried my father last week, who indeed had RA.
      During the course of my Dad’s illness, I had a visit with the Rheumatologist and as the attending nurse and I were talking, I mentioned to her my Dad’s various illnesses, could it be possible that my Dad could be dying from RA? Her reply was astoundingly filled with ignorance, “Your Father is just old, no, RA has nothing to do with it.” I mentioned, but he is in constant pain from the RA, “No,” she replied, ” it’s just old age.”
      Of course, I have inherited my Dad’s disease, but oddly enough, they say I do not have it, yet, they have put me on plaquenil, I dont understand this strange disease……..Jennifer

      • Dear Jennifer,
        I’m so sorry. I know nothing I say could probably help much, but I’m so sorry to hear about your losing your dad. Unfortunately, we’ve heard similar stories in our community. Many of us have had a parent or grandparent who died as a result of this disease.

        Even if they mean well, so many medical workers and even doctors do not understand the systemic nature of this disease. Current knowledge of RA is dramatically different than what they may have learned in school. That is combined with another problem – that the patient experience is often not taken into account with this disease. Yet, it’s paramount since we do not have many reliable ways to measure disease activity without it.

        I hope you can find a rheum doc who will pay close attention to your symptoms and get your own situation under control as soon as possible. Please let us know if we can help.

    18. Anne Goodson says:

      I personally know what RA can do to your spine. I had trouble for years. I have always been very active and did a lot of physical work. I finally went to a back surgeon and my L5 was splipping. My doctor said we would watch it and when the pain was bad enough I would need surgery. Well the pain was bad enough after another year. From the time My Doc toke xrays till my surgery (3 Months), my L5 had completely desentigrated. He was shock at how rapid it was. Because I had to come off my RA meds, made it worse. I do feel better as far as the back goes. But we are watching for any other progression on a regular basis.
      Since my surgery I have switched RA docs and found one that is more aggressive and takes xrays to monitor the disease. Thanks, Anne

    19. Kim says:

      My Mama suffered with RA from age 27 to 67 when we lost her to Glioblastoma Stage 4(Brain Cancer). We were all so upset because we kept taking her to the Doctors and they said it was probably the medicine or the RA. We finally took her to the ER and said we thought she had a stroke to get them to do a CAT scan. By this time it was too late and she was gone in 2 weeks. She was on huge doses of Prednisone and had taken every drug that insurance covered as well. I always wondered if the drugs caused the Brain Tumor. It all happened so fast and was so devastating to us. I have the same rheumatologist as Mama and my sisters just told me this last week that they want me to find a new Doctor because they were afraid something similar could happen to me. :(

      • I’m so sorry about your Mama, Kim. I hope you will make certain that any problems you have are addressed specifically. It can be difficult when a person is dismissed, as your mom was, to keep trying to get situations addressed, and we can get worn down. Or, as in her case, it is too late.

        Thank you for sharing your story because it can be difficult, even though it seems simple. We’ve had multiple situations in our family similar to yours, some that we eventually got answers for, and one that resulted in a death.

    20. Rebecca says:

      My doctor had told me that if I was experiencing back pain, no matter how localized, it was inevitably fibromyalgia. The same rheum that told me my BONE SCAN showed no INFLAMMATION. I wish that stupid rheumatologist (Dr. Schellenberg in Kingston, ON- STAY AWAY FROM HER) had at least humoured me enough to look at a single joint on my body. But, hell, she FORGOT she had work the day she saw me, didn’t show up until an hour after she was due there (her poor receptionist was so embarrassed as we waited!), and, in our 5 minute (!!) appointment, she spent more time talking about the morning coffee and TV show that had distracted her and kept us waiting. So really, that goes to show how much she cared. As shocking as this sounds, I didn’t go back to that rheum, and am still waiting for a new one. Hopefully this one will be able to give me answers!

      It has been very localized pain in a few vertebrae (especially the ones between my shoulder blades and along my neck). I’m not saying it is RA, but some days I wonder. But really, when you have disfigured knees and painful hips, you’ll inevitably walk funny and therefore have back pain. I don’t know what’s wrong with my back, if it’s the fibro, RA, or simply the way I hold myself. But I wish my last rheum would have cared enough to investigate. My pediatric rheumatologist (Dr. Jurencak at CHEO) would have looked into it without the slightest hesitation, even if he thought I was being ridiculous.

      It sucks that RA is such a misunderstood disease. We have very few doctors to treat it, and a lot of the time, I hear rheumatology horror stories that leave me thinking, “How did you graduate elementary school, let alone med school?” I hope that I get to see some change in my lifetime. I’ve had RA for half my life, and I’m only 18. I lost my grandfather to RA complications. I don’t know how I can keep pushing through for another 50-or-so years if things don’t change.

    21. Mary Mills says:

      I also purchased this book. It was very informative, as I also have terrible pain in my neck. My rheumatologist insists there is never RA in the neck or spine. Hopeless.

      • I know they often do Mary. I’m sorry. With many things, we have to seek another specialist anyway. It would be a spine specialist who would determine whether it’s just inflammation causing the pain, or if there is structural damage that needs to be addressed.

    22. Elizabeth says:

      About 4 years ago I was having major neck pain and migraines. An MRI revealed that I had three collapsed disk with bone spurs pressing on my spinal cord. My doctor told me I needed surgery and I had a three level fusion on my cervical spine. He told me if I was in an accident those bone spurs could sever my spinal cord. About a year ago, I started having joint swelling and pain and hoarseness. When I googled my symptoms RA came up as a distinct possibility. I asked my doctor to test me and I tested positive for the RH factor. I also had a test that showed inflammation markers that were off the charts. I was sent to a rheumatologist who diagnoed me with RA. Since then it has been a living hell. The pain is everywhere. Don’t let anyone tell you it doesn’t affect the spine. I am proof that it does and it seems that is where my disease started. I pray we find a cure for this horrible disease and I pray for everyone suffering with it. Don’t ignore the pain you feel. Your body is telling you something and don’t let people (including doctors) try to marginalize your concerns. God Bless all you warriors and thank you for this very informative forum!

    23. I have had nothing but trouble with my spine all the way back, top to bottom, all the way the beginning in 1997. However indubitably every new rheumatologist spends our first 6 months or year together first trying to convince me it’s in my head then that it is so rare there is no way he or she could have known.

    24. Marianne says:

      I sure wish doctors were required to keep statistics on RA patients..I too have major back problems. Herniated disks from T4 down, so far none in my neck. My RA doctor and neurosurgeon said these have nothing do due with having RA. Mine started in the 1990’s.

      So sorry for her loss.

    25. Brandy James Chambless says:

      I have had RA for 14 years (I’m 42), and it most definitely has affected my cervical spine (C2-C4). My rheumatologist has confirmed by exam and also by x-ray and MRI. We’re keeping a close eye on it. Thank you for this story. . . not enough people know and understand the devastating effects of this systemic disease. I offer my condolences as well to this family. My own father passed away at age 57 and also had RA. His death was due, in part, to this disease.

    26. Karen says:

      KELLY , Thank you for the pod cast with the British Medical Journal. I posted the following comment with their site.
      Just yesterday, I was thinking a smart move for researchers would be to check out on-line community comments from patients. KELLY Young at RAWarriers had a wealth of information for me. Just being diagnosed April 2015 , this web site was more informative then edit her doctor I had seen. On your pod cast I was also impressed with the guest Jack West had about info about lung cancer. I will be checking his site GRACE because lung cancer took my father and his mother , my beloved Grandmother. Both at age 72 , I need to be informed of this disease also. Thank you so much for this pod cast & Thanks to RAWarriers , KELLY for bring it to my attention on her web site. Karen Dillenburg , Gallatin Tennessee.

    27. Jana bryant says:

      I was diagnosed with RA 2 years ago with joint pain so bad that I couldn’t get out of bed and had to crawl to the bathroom.

      I believe the body can heal itself and I did not want to be on body destroying meds so I did tons of research and learned about the proper healing diet and which foods were destroying me.

      I’ve had to give up many of the foods I love but I now have my life back. I can safely say that I’m 90% better and I continue to discover healing foods and eliminations. I highly recommend the AIP diet plus going completely and strictly gluten free (no, it’s not a fad), sugar free, plus other inflaming food eliminations.

      I’m 51 and feel better than I’ve ever felt in my life! My prayers go out to anyone who suffers with this monster.

    28. Cree Sochor-Clegg says:

      As my mom lay in her hospital bed due to a nasty spill, the orthopedic doctor came in to discuss her physical disposition. In conversation I mentioned my RD. He takes my hand and manipulates a few digits, looks at me and asks, “And who diagnosed you?” I replied, “A well-respected rheumatologist.” Mic drop.
      Kelly – you have been our guardian angel, our warrior, our Saint Kelly, our bff. Your painful and tireless campaigning, support and advocacy is making this mouse roar. We LOVE you.

      • Dear Cree,
        Such an important point about what we live with on top of the actual disease. My colleagues and I have been through the same thing at scientific meetings repeatedly.
        Can you do me a big favor and spell out what the problem was in the hospital room. I showed your comment to a few people I thought understood, and they did not understand. What happened to you is such a typical event and so illustrative of how RD is treated.

    29. Cree Sochor-Clegg says:

      Kelly, the on-call orthopedic doctor was doing his rounds, and we were discussing a shadow on my mom’s xray, which turned out to be a hematoma. I was mentioning that I had a bone scan last year, also because of a shadow near my SI joint, to date still not fully explained…and then I start going into the RD a bit. He takes my hand and starts manipulating my digits and, very condescendingly asks, “Who diagnosed you?” My guess was no one under whom he may have studied. Any credibility he may have come in with snuck out the back door at that point. Being a male assessing a largely-female disease (largely, not totally), his attitude spoke volumes. If I wasn’t so knotted up over my mom, my snotty little self would have asked him about my lungs or my heart – and if he could tell me their condition by my fingers.
      My rheumatologist will do ANYTHING I ask her. We discuss diet, weight, exercise, trying different meds…and how the REST of me is feeling. Yes she does the cursory digit test, and goes from tip of head to my toes, palpates my abdomen etc. I feel very confident in her hands.
      Some doctors just don’t get it. I guess that’s why they call it “practicing” medicine, because many still haven’t figured it out yet.

    30. Lisa says:

      I’ve had RA for 45 years. I was told, way back when, that RA doesn’t affect the spine. I know better. My top two vertebrae are so messed up that my head doesn’t sit on my neck straight and it’s actually noticeable to anyone looking at me.

    31. Jo says:

      I have had ra for 5 years now and have so much pain and fatigue. I do work as this is the only thing that keeps me going. I have lots of issues with my spine and especially my neck. People tell you to keep moving but the exhaustion takes over. I would really like to read the book.at least I would have more knowledge to throw at the system that denies so much

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