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When I first got sick I would often feel like a knot happening in my brain. Then my personality would change. I recently found out I have lupus cerebritis so I’m guessing that was the cause
I wish you’d study me or be my rheumatologist. 45 year old female with family hx and rapid onset RA beginning in left hip, rapidly increasing pain and needing hip replacement within 3 months of pain onset. Pain began in hands and feet shortly after determination via xray of needing total hip replacement and bloodwork with positive RF. Initially denied RA by look rheumatologist. Received steroids for swelling in right fingers and in left wrist. Mild pain in feet. Started on methotrexate and hydroxychloroquine, increased dosage to 22 mg. metho and 400 mg hydroxy. WBC usually high. Ant-ccps above 250. RF 22. RDW always high (smoker). Hip replacement after steroid injections via long needle and ultrasound failed. Findings even visible via ultrasound and documented. Severe rapidly destructive arthropathy in left hip. Polyarthritis in both feet, hands, and hips with left hip primary damage. Removed from meds prior to Hip replacement which was successful with exception of severe blood loss described as spurting out immediately following incision. Returned to meds with continued worsening symtpoms and blood work. Rapid onset periodontal issues with family hx on non-RA side of family. Developed immune response to Humira with worsening RA symptoms but improvement in cbc numbers. Taken off humira with immediate flare up but improvement in overall health due to horrible side effects of biologic. Improvement in RA symptoms over time after removal of humira. Placed on Enbrel with immediate injection site rash that worsened and immune response to Enbrel as well. No other drug allergies in my lifetime. I’m wondering if any research has been conducted on patients with negative Rh factor (B-) to see if that’s why they’re unable to tolerate biologics made from human cells. Also wondering if I should try biologics made from animal cells to see if that might work better for me. Sadly, my 24 year old daughter was diagnosed with Seropositive RA two years after my diagnoses. She has no damage so far, but her dosage of dmards increase each time she sees her rheumatologist. Thanks for reading my story. I’ve now had three years with this disease, diagnosed with Seropositive RA (sucky prognosis), unexplained fatigue, and they also diagnosed me with long term need for dangerous drugs, I guess for insurance purposes. Positive for psoriatic arthritis as well as RA. Negative for celiac, lupus and sjorners. I just haven’t felt comfortable with the treatment I’ve received for one reason or another. I’m all the way in Florida, but I hope to find a doctor who 1. Tells me I dont have it when there’s no question that I do. 2. Doesn’t tell me that I might have sleep apnea. 3. Doesn’t put me on a biologic that is contraindicated for people who are allergic to humira. Ya know? :)
Not. I have severe sorpositive RA. I hadn’t had a cavity in 13 years and have amazing oral health. After my hip replacement (about a year after diagnosis, I had servere pain on the upper right side in the bone above the gum during a servere inflammatory episode, and at my very next dental visit, I was referred to a periodontist. The dentist said he thinks periodontal disease goes hand in hand with RA. The periodontist disagreed and so did my rheumatologist. How can people be specialists of periodontics and RA and not know if they are related, when I can tell you right now I was in no danger of tooth loss before RA?
As a Seropositive RA patient, I just wish they’d change the name of it from rheumatoid to something else, altogether, because this disease is serious, and I get told by everyone I need to change to an anti-inflammatory diet. And, I can’t explain to people my daughter and I, along with my aunt and two cousins, have tried every diet there is. People think I caused it and can cure it, and nobody knows I’m sick. Zero-negative folks are more than welcome to keep the rheumatoid label, and I’ll take any other name for it. If they could name it something like “veryseriouscaseofthegonnadie” or “theexactoppositeofAIDSexceptitsnotcontagious’” that would be more appropriate. Thank you for your expertise.
I ended up in hospital last year with lupus Nephritis. I was in for 10 weeks. While in I was diagnosed with fluid around my heart, clots on the lungs, a rare blood clotting disorder, cysts in my neck, cerebritis, and other things. It’s been devastating
Thank you very much for these videos. Regarding the cancers, I assume most in the studies were on immunosuppressants of some sort - is it then possible the immunosuppression contributed to the cancers in some of these cases?
@RheumNow I have chronic immune diseases, disabled veteran and worked in medicine for a bit. Also studied my issues extensively with regard to genetics, medication, environment, etc. I am extremely curious if removing the tattoo was ever mentioned. I too have several tattoos and would hate losing them, but if it was possible to remediate my pain, I would do it. With that said, just wondering if it is or is not a viable option, or would the break down of ink and subsequent release into the bloodstream to be filtered via renal pathways a greater risk than anything else?
I had pain in my knees 😢 i went to doctor a orthopedic doctor he said do mri i didn't that he said i have meniscus tes LcL tear bla bla he gives me medicine. No effect 👎 I had uti and conjunctivirous before that i research and found a video that shows it's symptoms of reactive Arthritis than i went to a rumothroid doctor he gives me medicine now i feel better now i can walk but still have difficulty i don't walk for 4week now i can 😊
I appreciate the explanation of this new drug. I feel like there has been nothing to help Sjogrens patients. My rheumatologist is clueless. Plaquenil and methotrexate are the only meds he prescribes, besides the pilocarpine. On the website's for people who have this disease most have the same issues. Mostly doctor's who don't manage all of the other symptoms besides joint pain. We don't have dental insurance and the government won't help by providing any resources. I hope this is approved and helps the people who are still here and living a miserable life. I've had it for around 30 years, before I was diagnosed. I was so happy to have a diagnosis. That was until I found out there's not allot to help
Thank you so much for the information, Heres a little tip for any future video's, ...People with PMR have probably not had a decent nights sleep in weeks so often suffer with brain fog which makes it difficult to understand people who speak quickly, I had to backtrack so many times even using the subtitles which often just add to the confussion...Many thanks ..Regards from the UK..
QUESTI0N?? Any information on low dose GLP1’s benefits for autoimmune diseases and other health benefits not just for weight loss. Specially my AID Ankylosing Spondylitis . Thank you 😊
I have HPV for 2 years and some months now. With Natural Roots and Herbs 🌿 @Drapalahealing was able to cured me thanks @Drapalahealing . And I ordered those herbs from he, Believe me it got me cured and I am very happy that I am free from the disease…………………
re MTX and OA - convince VA to do the trial - they have contract with McKesson re generic acquisition so quite inexpensive. Large % I suspect of severe OA, knee esp but also hip on opiods who prefer the opiods and ? re arthroplasty for one reason or another. question - often noted evidence of chondrocalcinosis with osteoarthritis ot ? mild predating - ?use of low level colchicine to slow OA progression and possibly pain, function (esp wrist)?
Zero rheumatologists will accept referrals for PMR symptoms. We have to figure it out ourselves, what to take? Believe it or not there are thousands of PMR/GCA patients on forums who relate what their rheumatologists are telling them. Mayo forum, UK forum and Facebook. I chose Plaquenil and low dose naltrexone. So I know to always carry extra steroids when traveling in case GCA shows up. The rapid taper described sounds insane to me. It took me 18 months to go from 20mg to 3.5 with many flares. Slowing to half mg a month. I've never heard of anyone who went into remission in 6 months. We don't have the option of seeing a rheumatologist. My GP refused to diagnose PMR or prescribe steroids so I found a retired internist for RX and changed doctors to Direct Primary Care. The new doc is very familiar with PMR.
My CRP started at 3 because I was already on prednisone 20mg. It rose to 16 as I tapered to 12mg, then up to 20 at 9mg, a year in. Age 72, it's now18 months later on 3.25mg and I'm still flaring regularly. I take Plaquenil 2-300 and Low Dose Naltrexone. There are no rheumatologists in our rural area who take people with PMR symptoms, possibly because we are many and all on Medicare. My husband is an Internist so he has had to help me manage this.
I had a kidney stone that caused strictures in my urethra, worst stricture was like peeing through fishing line. My bladder would spasm when peeing since was blocked. I had it for over year and then got a large kidney stone that blocked urine flow between kidney and bladder and it backed up into my kidney, think it was backing up for awhile then got really bad to point, it felt like my kidney was being removed when pain hit, worst pain in my life my bp went to 190/90, blood sugar 190 fasting, high cholesterol, temperature. Kidney semi shut down and even random ekg results showed rhythm was off. A Few months before this I noticed pee was a almost dark teal color and was having hip and foot pain. Urolgist did optilume surgery, basically catheter with balloon and chemo drug to prevent scarring once stricture was opened up. Worked great and zero issues, except, ever since, my ankles are very sore/painfully when standing up after sitting, hip pain laying down, knee pain, wrist pain, some shoulder pain. I never had pain like that before and came on all at once. After walking around the pain turns to aches, but still there. Could this be Reactive Arthritis?
Also I was tested for Rheumatoid arthritis(blood test) came back negative. I was given antibiotics twice for possible uti, but was never confirmed since I am on xarelto and with kidney stone, was not uncommon to see blood in urine. My vision has been fine. Just all joints hurt.
Nice. 70 yo, i had PMR & prednisone took care of it 6 years ago nicely. Now i have it again, pred worked fine till tapered to 3.5mg, then big flare. i went back to 7mg still sore but at least i can sleep & function, sometimes using tylenol as a adjunct. My question is on a flare, does one increase pred till no pain & comfy, or till one can barely function? & then is it recommended thar one reduce even though still symptomatic? Also, I am curious about stretching through pain, seems counter intuitive, I just want to go to bed, but gradually stretching through pain seems to help, maybe? For example, gradually moving my arm up over my shoulder to grasp the head in 16 small steps, starting with resting the arm on a tall dresser, then increasing stretch by a couple inches on each try.Anyone had luck with this approach?
Thank-you Dr. Cush. To have access to a Doctor of your caliber is amazing! The crazy YT world we live in. This information helps thousands and perhaps millions. Your ARE the best because you are always in school. It is truly a practice. Living and breathing. Still amazing to me that this is possible. To have this information all in one place, in a way that a vegetable like me can understand is invaluable. Your are a wonderful Doctor.
May I ask what type of business is the patient engaged in? Was he around a construction or home renovation leading to the onset of Still’s? I do believe there is an environmental trigger, specifically through the lungs.
As a moderately informed person, former nurse, health enthusiast, and a person who is actively involved and responsible for their own care, finding a rheumatologist that has availability in the next 12 months is hard. Full-stop. More challenging: finding one who specializes in your specific sub-specialty. Nearly impossible: finding a rheumatologist subspecialist whose philosophy and treatment approach align with one's own. While paid-for and nearly meaningless listicles offer a starting point, we need better information to make finding the right provider easier for patients. I was sort of hoping- based on the title- this video was going to offer a helpful perspective. But alas, the research and trial and error continue.
I finally found someone who recently moved to my area. He was so rude and disparaging I nearly climbed out the window when he left the room for a minute! Then he wrote a secret consult note that mocked me. My husband is an Internist with 40 years experience and hit the ceiling, wants to report him to the medical board. Keeping notes secret from patients is against the law. Meanwhile it got sent to everyone but me.
I've suffered with iritis since 1982, with bouts once or twice a year. While looking for treatment for rheumatoid arthritis, my doctor tested for HLA-B27 and found it in me. She then suspected ankylosing spondylitis for which I'm now beginning to exhibit symptoms. Combined with juvenile idiopathic arthritis as a tween, my life has been a long history of autoimmune diseases. And I cannot afford biologics. Sigh.
