Exploring Vaccination Options with CIDP
I have a query regarding vaccinations considering my situation. I am a woman in my mid-thirties living with CIDP, which stands for chronic inflammatory demyelinating polyneuropathy. My treatment involves IVIG, specifically using Gammunex-C 10% at a dosage of 200 ml twice a month. Both my neurologist and primary care physician have advised against any type of vaccination due to my history of CIDP flare-ups. Nonetheless, I'm increasingly concerned about the risk of contracting diseases such as measles, whooping cough, RSV, tetanus, and tuberculosis. To give some context, the last two vaccines I received were the initial doses of the COVID vaccine (Pfizer), and I experienced intense exacerbations of CIDP symptoms following each administration. The second dose was particularly severe and nearly required mechanical ventilation. Each time I had to undergo five IVIG infusions over the course of five days. The most recent vaccination prior to that was the flu shot I received in 2014, which coincided with my diagnosis of Guillain-Barré syndrome, an event that nearly led to the need for ventilation as well. Should I resign myself to the idea of not being vaccinated at all, or might it be worth investigating the possibility of conducting a hospital-based vaccine "challenge"? This approach could allow medical professionals to monitor me and provide IVIG treatment immediately if I begin to experience a flare-up.
Answers (1)
3/18/2025, 12:01:37 AM
OpenHealth AI
I understand your concerns regarding vaccination with your diagnosis of CIDP (chronic inflammatory demyelinating polyneuropathy) and your history of severe reactions post-vaccination. It's crucial to balance the risk of contracting certain diseases with the potential for CIDP flare-ups.
Summary of Key Points:
- Vaccination Risk vs. Benefit: Given your history of severe CIDP exacerbations following vaccinations, your doctors have recommended against receiving vaccines. This cautious approach aims to prevent triggering any flare-ups.
- Concern for Infectious Diseases: You are rightly worried about the risk of diseases like measles, whooping cough, RSV, tetanus, and tuberculosis.
- Exploring Alternatives: The idea of a hospital-based vaccine challenge is an option worth discussing further with your healthcare team.
Explanation:
CIDP can make individuals more susceptible to infections and may complicate vaccination strategies. The intense reactions you've experienced previously raise valid concerns about potential adverse effects.
Vaccines work by stimulating your immune system, but for those with a history of autoimmune conditions or severe responses to vaccines, such as yours, the immune activation might lead to flare-ups. This is why your healthcare providers have been cautious.
Actionable Next Steps:
-
Detailed Discussion with Healthcare Providers: Schedule a dedicated appointment with both your neurologist and primary care physician to discuss your concerns thoroughly. This is vital to explore the risks and benefits of any vaccinations tailored specifically to your case.
-
Consider Consultation with an Immunologist: An immunologist specializes in immune system disorders and may provide additional insights into your vaccination options. They can help assess if a controlled challenge could be conducted safely.
-
Monitor Health and Practices: Keep up with preventive health measures like good hygiene, avoiding sick contacts, and considering non-vaccine strategies (e.g., booster shots for those around you) to help protect against diseases you are concerned about.
-
Research Local Outbreak Information: Stay informed about any outbreaks of vaccine-preventable diseases in your area, as this may influence your risk assessment and decisions about pursuing vaccination.
-
Document and Review Reactions: If you decide to consider any vaccination approach, ensure detailed documentation of past reactions is shared with the healthcare team to assess current risks clearly.
Remember, your health and safety are paramount, so any decision regarding vaccination should be made with medical professionals who understand your unique situation comprehensively. If you need more specific information or support, feel free to ask.
Related Questions
Understanding EEG Results for My 22-Month-Old Son: Insights Needed
Could someone help clarify this for me? My son, who is just 22 months old, hasn’t started walking yet, becomes tired easily, and has been experiencing behavioral outbursts. He had a febrile seizure in February 2025, followed by another unexplained seizure in April 2025, which led us to consult a neurologist. Since he was 3 months old, he has been receiving therapy from a physical therapist for torticollis. At birth, he spent five days in the NICU due to issues with meconium aspiration. A recent MRI showed normal results, and he also had a follow-up EEG after one conducted in July 2025. The results from this recent EEG were abnormal for a pediatric patient in awake, drowsy, and sleeping states. Notably, there were brief episodes of left frontotemporal delta slowing, which occurred mainly when he was awake and drowsy. There were no signs of epileptiform activity detected. In contrast, the EEG performed back on July 3, 2025, was deemed normal for both awake and drowsy states, again with no evidence of epileptiform irregularities, although it did not capture any sleep data. This examination was prompted by the child's existing history of febrile seizures. Importantly, he is not currently on any anti-seizure medications. The EEG procedure used standard electrode placements per the 10-20 system, conducted a single-lead EKG, and included continuous video monitoring. During the analysis, the background activity was symmetric, indicating some anterior-posterior (AP) organization, with a dominant rhythm of 50-80 microvolts at 7 Hz. His drowsy state was marked by a reduced amount of eye blink activity, less breathing motion interference, and a generalized slowing in theta/delta frequencies. Stage II sleep exhibited spindles and vertex waves patterns. Additionally, there were intermittent bursts of 250-300 microvolts in the left frontotemporal region with semi-rhythmic activity of 2-4 Hz, mostly observed during wakefulness and drowsiness. No definitive epileptiform discharge was noted. Photic stimulation during the test did not elicit a strong response, and hyperventilation was not conducted during this session.
INTENSE Spine Discomfort, Breathing Difficulties, Muscle Twitches, and Sweating
To elaborate on the situation mentioned in the title, I’ve been experiencing unusual muscle twitches and spasms for the past few days, along with some discomfort in my back. However, today, I felt an unexpected sharp pain shoot through my spine, which has left my legs feeling numb and made it impossible for me to sit up straight. Additionally, I’ve been dealing with cold sweats for the last hour and struggling to breathe properly. Perhaps I’m just overanalyzing things and it’s a common occurrence, but the intensity of the pain is overwhelming—it's truly unbearable. I’m shaking quite a bit, and unfortunately, my parents aren’t responding to my attempts to reach them for help. I have a history of a chronic heart condition and arthritis, yet I’ve never experienced pain this severe, especially in my spine. For context, I am nearly 15 years old and female. My current medications include pain relievers, anxiety medication, beta blockers, and some vitamins, though those specifics may not be particularly relevant. I don’t smoke; however, I have tried vaping a few times, which might not matter much, but I thought it was worth mentioning as it was requested.
Understanding Atrial Fibrillation and Thyroid Issues: Variability in Cardioversion Decisions
Hello everyone, I’m reaching out for guidance regarding my mother’s current health situation, and I’d greatly appreciate any shared experiences or thoughts. **My mother's background:** - **Age**: 55 years - **Weight**: Recently dropped to 116 kg from 118 kg in just two days, likely due to diuretics. - **Health history**: Previously an underactive thyroid, undiagnosed and untreated, now presenting as overactive. - **Medications**: Currently taking thyroid medication and a beta-blocker (Rapiblock). **Current health status:** My mother has been hospitalized since Tuesday, experiencing **atrial fibrillation with heart rates exceeding 200** beats per minute due to her thyroid's hyperactivity. - The plan for cardioversion was initially settled on Tuesday. However, the following day, the medical team advised postponing it until her thyroid levels could be stabilized, believing that her heart rate would return to normal once her thyroid condition was managed. - Her **obesity** precludes her from undergoing a transthoracic echocardiogram, and due to her thyroid concerns, she cannot handle contrast dye (this has been a consistent issue for over four years). Therefore, the only feasible option was a **transesophageal echocardiogram (TEE)**, which has yet to be performed. - She has been prescribed various medications including beta-blockers and thyroid treatments in the past. - On Friday, a doctor proposed proceeding with cardioversion; however, the attending senior physician objected. - Today (Saturday), another clinician has expressed a desire to move forward with cardioversion, having initiated a new medication, as the senior physician is unavailable. - **Communication has been unclear**, as we were notified of developments by a nurse rather than the physician in charge, causing confusion and anxiety. - Currently, only a **chest X-ray** is scheduled, and the TEE remains unaddressed. **My inquiries are as follows:** 1. Is it common for medical professionals to have varying opinions and frequently revise medication or treatment plans like cardioversion? 2. Is it safe to conduct cardioversion in the absence of a TEE? I presumed that this was a standard procedure to exclude the presence of blood clots. 3. Is it usual practice to have only a chest X-ray prior to moving ahead with cardioversion? 4. How typical is it for patients or their families to not be directly informed about treatment changes and learn about them through nursing staff instead? I recognize that this cannot substitute for professional medical advice. I’m simply trying to discern whether these circumstances are typical or if we should express our concerns more assertively with the healthcare facility. Thank you for your insights!
28-Year-Old Male Experiencing Scalp Sensations Post-Amitriptyline Treatment
I am a 28-year-old man in generally good health, without any cardiac concerns. Approximately a month ago, I encountered intense pain localized to one side of my head, which was unresponsive to paracetamol. However, a single dose of a migraine treatment provided substantial relief. Following that, I began a regimen of amitriptyline, starting at a nightly dose of 10 to 25 mg. While my head pain has diminished significantly—by about 90 to 95%—I now experience occasional uncomfortable sensations on my scalp. These feelings include pins and needles, a cooling sensation, and some crawling feelings near my hairline and ears. There are fleeting moments where I feel brief throbs lasting a second, but I do not have any persistent headaches. To clarify, I do not experience any of the following: - Nausea - Weakness in my limbs - Numbness - Changes in my vision - Coordination difficulties - Seizures The symptoms I have are transient, shifting around and often intensifying when I become conscious of them or as the day progresses. I would like to know: Is it common to experience these sensations during the recovery stage following episodes of neuralgia or migraine-like discomfort? Additionally, could the amitriptyline potentially be causing these temporary paresthetic sensations? I am seeking some reassurance or advice on what is typically observed during this healing process. Thank you.
Strange Stomach Sensation Leading to Waking Up
Greetings. I'm a 36-year-old male, standing at 172 centimeters and weighing 90 kilograms. I don't take any medications, nor do I smoke. I've been living with diastasis recti for several years now, and I may also have irritable bowel syndrome (IBS). Additionally, I deal with fatty liver and kidney stones, though I assume these last two conditions are not related to my current concern. Occasionally, I experience a peculiar sensation that jolts me awake; it feels like a quick pulsing in my stomach. I’ve noticed it tends to affect the left side when I’m lying on my left side and the right side when on my right. Remarkably, it can occur even when I’m on my back. This strange feeling often escalates into a surge that fully rouses me. Alongside this, I sometimes feel prickling sensations throughout my body and fleeting lightheadedness. When this sensation disturbs my sleep while I’m turned to my side, shifting onto my back or the opposite side might alleviate it, but not always. In instances where I awaken while lying on my back, I discovered that gently pressing my hands on either side of my stomach can help, as can rising to a sitting or standing position. However, during my last two episodes—one a couple of weeks ago and another tonight—those techniques weren’t effective right away, which made me feel a bit anxious, prompting me to seek advice. Does anyone have insight into what might be going on? By the way, I’ve undergone routine ultrasound examinations of my abdomen by two different physicians during check-ups, both of whom assured me that everything appears normal, including my abdominal aorta and internal organs. They didn’t identify any issues at that time.