I had a rare blood disease, ITP, when I was 16 years old (1970). I noticed that my inner arms were covered in red pinpoint dots. A blood test showed that my blood platelets had mysteriously disappeared. The doctor called it “Ideopathic Thrombocytopenic Purpura” because “ideopathic” means “we don’t know where it came from.” Now they call it “Immune Thrombocytopenic Purpura” because it is classified as an autoimmune disease.
Examination showed that I had an enlarged spleen which was apparently eating the platelets. I was treated with heavy doses of prednisone (200 mg/day) for weeks. When my platelets came up, my spleen was surgically removed. I was tapered off the prednisone over weeks. The ITP never returned.
One of my favorite columns, “Diagnosis,” by Dr. Lisa Sanders in the N.Y. Times, had a patient with ITP today. I was surprised because there was no mention of the successful treatment used in 1970. The article doesn’t mention the spleen or prednisone among the long list of potential causes or treatments. The patient was given intravenous immunoglobulin (IVIG) which didn’t exist (as far as I know) in 1970. His mother also has ITP and has been given IVIG for years.
I can’t help wondering whether the treatment that worked for me has been overlooked or forgotten. It wouldn’t be the first time. I will e-mail Dr. Sanders.
I was a high school senior in 1970 and lived with my parents. We did have 2 cats at the time. It never occurred to any of us that cats could be connected with ITP.
Doubt it has been forgotten, but a few possible scenarios.
One, we understand the disease and its cause better now, and thus its treatment. Not to shock or depress you, but a lot can change in 50 years.
Two, advances in other areas get tried in other areas, thus IVIG. Why not get hooked up to an IV a few times over high dose steroids with their potential complication profile AND surgery with its potential complication profile?
When my family doctor saw my petechiae (tiny red spots on the skin) he immediately referred me to a hematologist. The hematologist treated me with conventional doses of prednisone.
My father (a brilliant engineer) noticed that my platelet counts kept dropping toward a fatal low level. He pulled me from the hematologist’s care and brought me to a different hematologist who was a researcher who had his own blood lab. The second hematologist went bold, using extremely high doses of prednisone. They took 5 vials of my blood 5 times a day for the lab. Sometimes I felt like I was feeding a vampire.
We all understood that the treatment was intense. But it worked. Without it I would have died.
It’s kinda silly to be rolling with accusations of malpractice on a standard of care regimen from half a century ago…for a condition that was, like you say, life threatening…just because you think you know.
As it happens, I’m just tapering off a short course of prednisone for the Basenji who’s had quite a nasty attack of acute pancreatitis.
I’m not going to let myself scamper down this particular rabbit hole (fundamentals are far enough above my pay grade that something plausible sounding might be enough to bamboozle me). However
just tooling through Google and some of the more scholarly articles suggests that, much like the phenotype for ASCVD, there are a whole slew of genetic variants that can contribute to much the same clinical picture.
I have little faith in doctors when they cause damage as well. I did qualify it as “if avoidable…” There are many situations still today where it is not avoidable.
That is a mischaracterization of what I said.
I had very severe psoriasis in 1981 because of a sunburn. The condition would become chronic. My dermatologist in CT recommended a dermatologist in Houston where I was going to college.
The first thing that doctor in Houston did was put me on a steroid.
Coincidence that day because long distance used to cost money I called my parents. Dad heard and told me not to take a single pill of it. For a topical skin problem it is malpractice.
With internal medicine it is still used often. People face really bad hardships using steroids and other meds for internal problems.
I was raised to be hyper aware of malpractice by doctors prescribing meds. No need to protect them. Use caution first. Be aware there is plenty of malpractice. The patient has a very tough hard responsibility to understand side effects, misdiagnoses, blunders, bad bedside manners because the doctor has always been juvenile and worse. A patient not watching out for themselves or advocating for themselves will have many problems over the years because of doctors.
One of my sisters has had a spot on her skin of melanoma.
Recently a melanoma vaccine has been developed that in the first study(s) stops the reoccurrence of melanoma 44% of the time. This is a huge break through.
I wrote to my sister about the vaccine advising her not to get the vaccine. Let me explain.
44% is not good. That means 56% reoccurrence.
Currently many things for many diseases are in the pipeline. To become part of a trial for a new promising drug you need to be clear of other treatments in order to help the researchers have a clear picture of what is working and what is not working.
In the beginning of this year I read a woman with a stage four cancer was accepted into a drug trial. She was only accepted because she had not tried chemo. The drug has left her cancer free.
My BIL who is a doctor, his mother has stage four lung cancer. I did not think to get involved early on. Not sure if the report I heard was just before or after her diagnosis. She went on chemo. Up in Kennebunk with family myself and another doctor in the family touched on the issue of newer meds to treat her with my BIL. He stated he trusted the doctors in Florida with his mother. The other doctor and I dropped the topic.
But this Christmas I discussed the melanoma vaccine with my BIL and my recommendation to my sister. The BIL is not married to this sister. We did not discuss his mother but I think he got it. It was not easy for him.
While none of that is malpractice it is not good practice. It was excellent practice until recently.
I hope in many instances that are terminal cancer doctors withhold chemo for patients to enter into clinical trials of newer drugs. You have to advocate for yourself.
In the family not as a doctor. The other doctors in the family know about it and if need be will go further with her. My assessment may open up doors for my sister and family doctors that could have been shut if she needed them.
What I do in my family for advice has nothing to do with you or anyone here as far as telling any individual here what to do.
At the end of the day I discussed it with my sister and nothing more. She was far more gracious getting the information and ideas. As my family has been as well.
Hardly protecting anyone. Simply pointing out that calling a treatment that you don’t agree with (as someone with zero expertise in the area other than a personal anecdote) is a questionable tack to take. Especially given that what appears to be Wendy’s lifesaving treatment hasn’t been discarded for appropriate circumstances.
I don’t doubt that you’ve been raised in an environment that causes you to be more aware than the average non-MD…getting inside information on who’s not to be trusted is a useful tool when viewed critically. Thing is, it seems to me that medics (and dentists, come to that) are very adept at calling their colleagues out on their questionable practices…oftentimes without regard to their own shortcomings. Perhaps it’s the same in any field, come to that.
It never ceases to amaze me how folk are willing to throw colleagues under the bus. Started for me shortly after entering practice after my residency…at an institution with a higher than average rate of blood born viruses (including a good many we didn’t know about in the late 1970s) Among the complaints my colleagues failed to back me up on (couldn’t do much about my age and being “a lady dentist” …after all, they hired me) but the fact that I used what’s now accepted as universal infection control precautions. Gloves, mask, eyewear.
Fast forward to more recently, my husband has for the past couple of decades acted as an expert witness for a select handful of non ambulance chasing lawyers. A couple of patent infringement cases but primarily personal injury lawsuits. He only acts for the defending counsel…working on the principle of “there but for the grace of some deity or other”. His opinion carries enough weight as an acknowledged expert in his field that on the odd occasions that he can reasonably say, not standard of care or borderline malpractice, that advice to settle and generously tends to followed. Having said that, the number of MD for hire types who seem to have no compunction about proclaiming malpractice about even frivolous lawsuits makes me wonder if they were ever as circumspect about their own track record.
My discussion of malpractice is pointed at the principles of treatment. I qualified the statement because I know internal medicine has to use steroids on many occasions. The practice can be brutal that is where the red flag is planted.
My actual point is people should be aware if you can avoid using steroids internally then do so…as I was told for a skin disease to use steroids.
Recently I have been using a note weak topical steroid for my psoriasis. The newer treatment regime finally makes sense. I can use the topical for up to 21 days and then stop usage for a minimum of 5 days. The advantage in this regime is not thinning the skin. Dermatologists had been after me for years to use steroids until this regime listening to the doctors was dangerous for me. Not malpractice by the way. Still bad medicine.
My dad had two retirements age 65 and age 81 a month before turning 82. In his first retirement he had the honor of being on the state licensing board. He was also running the state sponsored clinical system on the eastern side of CT. Prior to age 65 most of his career was overseeing other doctors, training other doctors and being the best clinician in the area in his specialty psychiatry. He is a nice man a good man but boy can he be razor sharp. Some of his patients hated him. He told them the truth. Many people do not like the truth out of anyone.
Dad never in my ear shot claimed any doctor committed malpractice. He went after the principled practices that when broken contributed to either malpractice or more importantly bad medicine.
adding I do understand licenses were pulled while he was on the licensing board. The cases generally had to be “very egregious”…but that was not really outlined for me because dad did not talk the specifics of cases. Often though it meant criminal beyond bad medicine.
I get that it is remarkable. But it is not. I get I did not word it in full either.
The options that exist or may exist in the next five years may be scrubbed if you take that vaccine. The researchers need to know their treatment works. It is a very difficult call. My sister is getting more fully informed. The information is full of caveats as well.
Syke unless you can put the treatments in the pipeline for the five plus years into this discussion we do not know…we simply do not know…my BIL has long maintained that DNA therapies would amount to something more. That is beginning to gather more steam.