I also have hand tremors, and, on occassion, shaking of am arm or leg. I hurt everywhere and the fatigue is terrible. My throat feels constricted much of the time, but I can swallow. When I eat, I do feel hungry for it.
I have had no vascular diagnostics, biopsies only of skin. I now. have a tiny growth on my right upper eyelid,,concerning because I had an identical tiny growth that looked the same on my lower lip, and had it biopsied by an experienced oral surgeon who was sure it was not cancer. It was.
So now after 18 months of "treatment and so-called monitoring", I have musculoskeletal, skin, and eye involvement, facial and jaw pain, chronic sinusitus on scan, some pleural thickening per scan In one lung, the ANCA antibody, and just feel sick with no fever. My white count is between 15 and 18,000, and yet to everyone who sees me they say I look good. I have no weight loss (maybe b/c prednisone).
No one told me my blood potassium , iron, and salt we're/are low until I saw results myself.
I see a new rheumatologist next week. He is a solo practitioner and is my age, 70. His website says he treats vasculitis, and his philosophy is compassion and not to rush people through. I am afraid to get my hopes up that he will be my savour into remission.
Feeling more dead than alive. I am also taking tramadol, another painkiller, but my family doctor is afraid to keep prescribing because of new draconian federal
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Christophene47
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If you've found someone with vasculitis knowledge and experience that's something. Make sure every question you have is answered to your understanding and I hope you come out with a plan, timescales, timeframes and confidence in your consultant. And yes, I've been told how much better I look too but I know those comments came after I started prednisolone so heaven help me soon as I'm on a reducing dosage plan now.
Hi Maria 58, I told about my new rheumatologist in my reply to Michicgo. I feel psychologically better making a break with the former "factory" practice.
I will see him in 2 weeks after he has reviewed my records and has all new bloods back. Based on what he said, I think he will be temporarily, at least, boosting up the prednisone.
I hope you manage well with your reducing prednisone plan; go slow and little by little. I think that was another mistake made at the prior office eliminating 4 mgs. at a time. It is not pleasant.
With what is the so- called opiate crisis hype in the US , I ask myself is prednisone an addictive drug; it may be quicker and easier to stop prescribed morphine as an example (not a street drug) than to taper off and eventually get off prednisone. The only difference I see is that opiates are stigmatized for all but the terminally ill, and prednisone isn't. Strange how ideas get started.
Religion or evolution being the origin of man, why was the opium poppy, and the marijuana plant (a natural anti-inflammatory) put on the earth if not to relieve suffering? And drinking alcohol is just fine and dandy for relaxing, tobacco smoking causes cancer, but prevents Parkinson's disease??
It is just how we are indoctrinated to think about things...forgive my thinking out loud. I do hope you make good progress, and that you have an easy taper. Keep us posted.
I don't really understand how the health system works for you, but I'd be really concerned about a rheumatologist that works alone. So my first question is who does he work with when/if complications arise with Vasculitis. My second question is what is his experience of vasculitis. If you've got active ANCA associated vasculitis then will he follow the agreed protocol to get it into remission? Hope you get some reassuring answers.
For us in the US, solo practitioners are dying out, but in my experience group practices are a nightmare; you never get to know which doctor you are going to see; with 3,4,5 doctors + advanced nurse practitioners and physician's assistants, they never get to know you as anything but a computer file; communication is like "whispering down the lane," you are often handed off to someone who has never been to medical school or who is barely out of school. They have no memory of you, and are busily reading their computer screen looking for something they can't find. No one examines you; other than blood pressure, and temperature which is done by an aide.
They have multiple offices, not one solid location.
This doctor is 69 years old and is State Board certified in internal medicine and rheumatology; he has seen it all. He does not overbook and the wait time is 15-20m. He has his own lab, phlebotomist and infusion center as well as clerical staff.
I was extremely impressed when he asked me if he could have my voluminous records to keep until my next appointment to study. His first impression of me is PMR/GCA, not Wegener's. But he has not drawn the conclusion yet. He took a whole new round of blood tests today, and I know he will know and remember me when I return .
He has taught medicine and has been involved in clinical drug trials in rheumatology. Vasculitis is listed on his website as one of many autoimmune conditions he treats. He is affiliated with a very good hospital about 20 m. from where I live; if I had an emergency, I would go there or ask to be taken there to emergency and he would be called, or, have an equal covering for him who would communicate with him. My family will have that information.
I feel much more comfortable with a doctor where you each have the opportunity to get to know one another as a whole human being. Group practices here are like factories.
We do not have a system where the doctor is paid by the government except for Seniors, and the quality of coverage depends on how much of a plan and premium they can afford to have deducted from their Social Security. Otherwise, you may have insurance through an employer (very rare these days) or you buy what insurance you can afford privately, or pay the doctor privately. And doctors can refuse to accept certain insurance plans altogether if they don't feel they are getting paid enough for patient visits.
Or the patient may just go without care. So in large group practices, there is tremendous pressure on doctors to get and keep as many patients as they can, or your group will terminate your employment contract if you are not meeting a financial goal; the same is true for doctors who are directly employed as hospital doctors.
So group practices here are not about having enough doctors to care for a patient with a serious problem, or something life-threatening; it's all about care for profit, and that is why large group practices operate like assembly lines. You are just a product being processed.
In my life, my best and favorite doctors have all been solos who come to know you as a person as well as a doctor who remembers you and your medical issues.
I have no worries about that. I worry much more about having a young woman "physician assistant " without a doctor being present in the office, prescribing me a cytotoxic drug and reducing prednisone every visit by 4 mg. who has 12 years less higher education than I do.
The other option that is springing up here are Urgi Centers that you can walk into 24/7 for serious problems that fall short of needing an emergency room; if they determine a pt.does need life saving care, they can stabilize the patient, call ahead to the hospital and transfer by ambulance or helicopter. These Urgi Centers are all over now. I have gone for a couple of things, and find them to be pleasant, competent and efficient.
There is a big sign that says anyone who is hemorrhaging or with breathing problems, goes directly to another desk and will be seen first.
So access to my doctor who will respond to a call for help from another doctor, an Urgi center or a hospital is pretty assured.
I'm happy to read that you're seeing a new rheumi; I hope you have success with him. Please continue to take things a day at a time, and when necessary, hour by hour. Are you seeing anyone that might treat the tremors--neurologist, perhaps?
Given my experience with this disease, it is systemic and requires a diligent team of physicians. As you resolve one issue, move onto the next. I surely understand your difficulties; I hope it gives you some comfort to know that you're not alone. So many of us are broken but we hobble about well enough! Keeping you in my thoughts and sending healing vibes your way.
Yes, I am with another rheumatologist as of yesterday. Notwithstanding that I do have the PR3 antibodies, he does not think I have GPA, but rather PMR/GCA.; the GCA b/c of my temporary vision loss incident caused by a central vein occlusion of the retina in that eye found on duplex doppler, and that GCA frquently partners with PMR.
My symptoms are "right on" with PMR/GCA; I have always thought that my big pain is in the muscles, and not so much the joints except for my vertebrae joints.. from C1 to L5. 9 I am the right age and my maternal grandmother had it when she was my age, took prednisone a long time, recovered and lived independently to 92.
What impressed me the most was that he asked if I would leave my giant portfolio of medical records for him to review and personally took them in hand to be returned at my next visit in 2 weeks. He will have copied what he thinks is important to his thinking. Because my CRP and SED rate have always been normal throughout, he did say my case was a puzzle. But he knew that can happen in a small % of patients.
Now I have seen 2 specialists, this new rheumatologist and a hematologist (who invited me to text his cell phone which I thought was extraordinary as most doctors insulate themselves with their "lions at the gate"clerical staff. Both of doctors disagreed ( no connection to each other) with my having been prescribed methotrexate in my case; and feel iit may be what is and has been making me feel sicker, and that the awful skin bruising I have may being caused by the Methotrex.
So I will stop it . He seemed to scoff at the idea that the prior 8rheumatologist's physician's assistant sent me to a hematologist because of a high white count which is commonly caused by prednisone and is to b[e expected which I also knew.
He asked me how I feel, and when I said "like a sick person" , he said that is exactly how PMR/GCA patients feel; horrible all the time. He also said that my "magical" (my word) and initial response to prednisone was in of itself a strong diagnostic indicator of PMR.
I think after he has the test results , he intends to increase my dose of prednisone or maybe give me a boost of it. I am more hopeful now and feel I am in good professional hands whatever he eventually decides.
He took a whole new round of blood work as if to start over again, and actually examined me! , something doctors don't seem to do much anymore, relying on scans and bloods
I see him again in 2 weeks. So I have decided to fire the other practice, and will do so by a diplomatic letter.
Another plus is that his location is a shorter drive for me and in a cute little boutique, cafe-restaurant town. So psychologically at least, I feel better for having taken this step. Still hobbling though.
Thanks for your asking and continued support. Is anything new with you?
Christophene, this is wonderful news. You cannot know how happy this makes me -- and I'm a virtual stranger!! I commend your persistence!!!!
When I found my rheumatologist, nearly one year ago, I was on cloud nine; he listened, he studied my records, he cared. And the icing on the cake? He continues to listen, study and care about me as a patient.
Congratulations; you've cleared another hurdle. Be well, my vasci friend!
Thanks again; it's amazing the virtual connections and friends people can make online; especially when they have a strong common interest; it's very helpful and positive.
There is so much "bad" because of the internet, but this site is a premier example of the good it can do.
Thanks for your support; Since my paternal grandmother had leukemia at my age 70 , (and I will be 71 this month), and she died at 73,and it appears from research , that GPA pts. have a higher risk for leukemia and lymphoma; and a number of same symptoms, it is all playing out like a spooky story in my head. And my maternal grandmother had PMR &GCA at 70 ish , treated with Medrol only, and lived 20+ years after her illness to 92 and independently at that, until the last 18 mo.of her life, she still enjoyed life, company and goodies to eat. Otherwise she had minimal health problems. Her heart just got worn out.. She is my role model. Interestingly, the grandmother who died younger was a more dour personality; not very happy or a warm person; although she tried.. my maternal grandmother worked, had interests and hobbies; she always said her days went too fast.
Will have to bring that up with hematologist when I see him soon. Hoping for the best with the new rheumy.
You and others do give me a more comfort than you know. Thanks and hope you are holding steady. Best....
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Keeping you in my thoughts and sending healing vibes your way.
Is it possible to recover from vasculitis or is it a life sentence?
Interesting, and useful, 'Tip' from my Dermatologist
New to forums and talking about my life with wegeners/gpa !
Very thirsty with an unpleasant taste in my mouth?
