So glad you posted this Sandi. Yes, every patient has to be their own advocate. You need to educate yourself and if you don't feel comfortable with something, SPEAK UP!
When I was first diagnosed with ITP at 16, my mother decided to take me to who she thought was rated the "best hemo" for ITP. Well he almost killed me! My 5'1 frame and 130 pound body could not handle the 100 mg dose of Prednisone he put me on. I cannot tell you how many side effects I had...gained 20 pounds literally overnight (blew up like a balloon), had severe migraines for which he offered me nothing but Tylenol (I threatened to commit suicide because there was no relief), suffered from high blood sugar (for which he blamed me), dizziness, panic attacks, tremors, Interstitial Cystitis, terrible insomnia, etc. I even developed Shingles from the Prednisone. The times I was hospitalized for a low platelet count, he wouldn't even let me go home until my platelets were over 100,000. I wasn't allowed to shower, drive or do anything. I eventually developed supra ventricular tachycardia because my heart could not handle the dose of Prednisone! I was taken to the hospital by ambulance for an SVT episode and he told my mother I just had a panic attack! He always said my symptoms were anxiety and basically labeled me a hypochondriac. He had zero compassion and dismissed my every complaint. I finally had a splenectomy and after I came out of recovery, had an episode of SVT, most likely from the combination of Solumedrol and Prednisone they gave me before surgery. They tried everything to slow my heart rate and nothing was working, They finally told my mother that if my heart rate did not slow down, I would die because my heart could not sustain that rate much longer. I slept through much of the episode...so it could not be a panic attack! By the grace of God, my heart rate slowed after being given 3 or 4 different heart drugs and I did not die!
When the doctor tapered me off the Prednisone, he did it so quickly, I developed IBS, joint pain, severe panic attacks, etc. I continued to suffer from the affects on my heart for years. No one ever thought any of my symptoms were related to side effects! My mother took me from doctor to doctor trying to treat all of the symptoms I had. I look back now and I realize, my symptoms were nothing but side effects of the high dose of Prednisone and Solumedrol he gave me. It harmed my body. As soon as I turned 18, I immediately switched doctors and told my mother as an adult, I would decide who I went to. (I was done with Dr. Doom!) At the time, she was one of those people who thought that the doctor always knew best and questioned nothing! Now she knows better. My father who has had bypass surgery has had a similar experience with a particular heart drug. I am amazed at how many doctors just dismiss their patients. They refuse to believe drugs can cause side effects or even damage. I can't tell you how many doctors have told me that you can't believe anything that you read on the internet! They would do well to search the internet themselves instead of believing what some drug manufacturer or medical journal says. How about a consensus of patients who have the disease and have been through the treatments?
I have had 4 different hemos since leaving Dr. Doom (it's been 30 years) and I haven't met one who didn't think that was a mega dose of Prednisone. One doctor even commented "holy s*** that's a huge dose of Prednisone."
My advice to anyone who is just beginning this journey with ITP or any other disease: do your research, listen to your instincts and question everything. If you have a doctor who becomes offended when you ask questions, FIND ANOTHER DOCTOR! Never hesitate to get a second or third opinion. You are in charge of your own body. You have to live with your choices and the side effects, even the ones that come down the road, not the doctor treating you! What works for one does not always work for another. You may need a smaller dose or different medication. There are many options. And, there are so many new drugs, they don't know the long term effects yet. You are nothing but their guinea pig. Find someone who will listen, and if at all possible, take someone with you to your appointments so you have a second set of ears! If you can't, then take notes!
