Scotland ITP Virtual Patient Meeting

Scotland ITP Virtual Patient Meeting

24^th February 2026

Unfortunately the recording of this meeting became corrupted, however we have managed to put together the key points from the meeting in the article below.

Quick recap

The Scotland ITP Virtual Patient Meeting brought together 14 participants to discuss Immune Thrombocytopenia (ITP) treatment options, patient experiences, and research updates. Dr. Catherine Bagot joined to answer questions about medications, particularly the newly approved generic Eltrombopag (Eltrombopag), its effectiveness, side effects, and long-term safety considerations including bone marrow scarring and thrombosis risk. Multiple patients shared their treatment journeys, including Karin’s first week on Eltrombopag, Mark’s recent October diagnosis and spontaneous remission, Lynn’s moderate response to steroids, and Leigh from Australia’s questions about treatment protocols. Key topics included patient resource availability, the recognition of fatigue and anxiety as ITP symptoms, the importance of monitoring bleeding symptoms over platelet counts, and participation in the ITP registry for research advancement.

Summary

Eltrombopag Treatment Experience Discussion

Karin shared her experience starting Eltrombopag, noting she was only on day 3 of treatment. She reported experiencing:

• Increased fatigue (more than normal)
• Hot sweats
• Her platelet counts: 80 → 50 → 17 over recent weeks

Her blood test was scheduled for Friday to assess the medication’s effect. Karin’s treatment history included Avatrombopag and Rituximab, with her counts typically dropping every 3 weeks, requiring prednisolone boosts—a “roller coaster” pattern.

Dr. Bagot’s Clinical Insights on TPO Agonists

Dr. Catherine Bagot explained the relationship between different TPO agonist medications:

• Eltrombopag and Avatrombopag: Chemically different but bind to the same receptor location to stimulate platelet production
• Romiplostim: Binds to a slightly different location on the same receptor
• Important finding: Patients who don’t respond to one TPO agonist can sometimes respond to another, so all three should be tried before concluding they don’t work

Dr. Bagot also said options also include combination therapy as a potential option: using Eltrombopag (which boosts platelet production) together with immunosuppressive drugs like mycophenolate or azathioprine (which suppress platelet destruction). This dual approach tackles ITP from two directions and can be effective when single agents don’t achieve adequate control. Karin expressed interest in this combination approach for future treatment if Eltrombopag alone doesn’t work.

Generic Eltrombopag Transition: Dr. Bagot confirmed that all patients on Eltrombopag at her clinic received letters explaining the switch to generic packaging. The medication is exactly the same molecule, and no patients have reported any differences in effectiveness or side effects.

Understanding ITP Patient Experiences

Long-Term Safety and Side Effects of Eltrombopag

Lynn, newly diagnosed in September 2025 and currently being tapered off steroids after a moderate response (platelets reached only 74 from 29), asked about the long-term safety of Eltrombopag. Dr. Bagot provided comprehensive information:

Common and Notable Side Effects

• Hair thinning: Not widely recognized but observed across all TPO agonists. While uncommon, some patients have stopped treatment due to this. Hair always grows back after stopping the medication.
• Generally well-tolerated: Most patients tolerate Eltrombopag very well in the short term

Long-Term Safety Concerns Requiring Monitoring

1. Bone Marrow Scarring (Fibrosis): Constant stimulation of the bone marrow can sometimes cause scarring. This is detected by examining blood films under a microscope for changes in red cells. If scarring is suspected, a bone marrow test is performed. Reassuringly, scarring typically reverses completely within 3 months of stopping the TPO agonist.
2. Increased Thrombosis Risk: TPO agonists stimulate production of young, active platelets, which could theoretically increase blood clot risk. Importantly, people with ITP already have a slightly increased thrombosis risk even with low platelet counts, likely due to young platelets and inflammation. The additional risk from TPO agonists is small, and these medications are even used safely in high-risk populations (cancer patients, severe liver disease patients). Only very high-risk thrombosis patients might be steered toward alternative ITP treatments.

Dr. Bagot emphasized that Eltrombopag, Romiplostim, and Avatrombopag are considered very safe and effective overall, with approximately 80% of patients responding to treatment. She would recommend these medications to almost every ITP patient she treats.

Understanding Platelet Count Targets

Dr. Bagot clarified appropriate platelet count goals:

• Above 50: No excessive bleeding risk; safe for major surgery
• Above 30: Very low risk of spontaneous significant bleeding; acceptable for daily life
• Treatment philosophy: If ITP is difficult to treat and a patient can maintain counts of 30-35 on one medication without bleeding symptoms, avoid exposing them to multiple drugs. Additional treatments can be added temporarily for surgeries if needed.

Mark’s Journey: New Diagnosis and Potential Remission

Mark shared his recent ITP experience:

• October 2025: Emergency hospitalisation with platelet count of 3
• Treatment: Prednisolone from October through early December, then tapered off
• Current status: Count at 170 and climbing after stopping steroids
• Possible triggers: Had been taking quinine sulphate for years (for cramps) and ibuprofen regularly; also had flu vaccination 4 weeks before diagnosis
• Rituximab: Was scheduled but put on hold due to improving counts

Dr. Bagot explained that quinine sulphate is definitely associated with low platelet counts, so stopping it was appropriate. Regarding ibuprofen, she clarified an important distinction:

• Ibuprofen does NOT cause ITP but interferes with platelet function
• Should be avoided when platelets are very low at diagnosis
• Safe to use once platelets are above 30, and certainly safe with normal counts (unless other medical conditions contraindicate it)

Dr. Bagot noted that when a definite trigger is identified (vaccine, infection, medication), patients more commonly achieve spontaneous remission. However, she cautioned that ITP can still return months or years later, and living with this uncertainty is one of the challenges of the condition.

Key Message: Bleeding symptoms matter more than platelet counts. If you have no bleeding symptoms, your platelet count is likely fine. Monitor bleeding, not just numbers.

Patient Education and Resource Availability

Laura, in her second year with ITP (possibly triggered by flu vaccination), raised concerns about the lack of visible ITP information in some hospital waiting areas. She noted that while cancer leaflets are prominently displayed, there’s nothing about ITP. She inquired about available patient resources.

Mervyn directed her to the ITP Support Association website (itpsupport.org.uk) under Patient Resources, which includes:

• Leaflets for dentists, schools, and other settings
• “Making the Right Choices in ITP Management and Care” (red book) – a comprehensive shared decision-making document endorsed by Royal Colleges, with over 5,000 copies of the first print run distributed within a year
• “ITP and Me” for young adults and teens

Mervyn offered to send Laura a physical copy of “Making the Right Choices” and encouraged her to ask her hospital (Cross House Haematology in Ayrshire) about displaying ITP resources in waiting areas.

Dr. Bagot acknowledged this is an important issue, noting that blood cancers like leukemia receive much more public visibility than ITP despite similar prevalence (both affect approximately 1 in 100,000 people). She emphasized always directing newly diagnosed patients to the ITP Support Association rather than general internet searches, which can lead to frightening and inaccurate information.

Stress, Fatigue, and Anxiety as ITP Symptoms

Laura also asked whether stress affects platelet counts, noting her counts seem to drop during stressful periods in her demanding job.

Lauren asked via chat about UK consensus documents affirming fatigue and anxiety as ITP symptoms.

Dr. Bagot provided extensive clarification on these important topics:

Fatigue in ITP – Fully Recognised

• Fatigue is absolutely acknowledged as an ITP symptom by all UK clinicians who specialize in ITP
• Some patients can predict their relapse by fatigue alone, even before blood tests confirm low counts
• Fatigue can persist even when platelet counts improve
• The IWISH study documented fatigue as a significant symptom
• Professor Nicola Cooper has conducted extensive research on inflammation in ITP, which is believed to cause fatigue (the immune system attacking platelets creates inflammatory responses similar to fighting infections)

Medication-Related Fatigue

Dr. Bagot emphasised that medications also contribute to fatigue and other symptoms:

• Prednisolone: “A fantastic drug but awful to tolerate” – affects sleep, hunger, appetite, mood, and energy both while taking it and when tapering off
• The combination of ITP itself plus medication side effects significantly impacts quality of life

Recognition and Awareness

Dr. Bagot stressed that having a non-cancer blood condition doesn’t mean it’s easy to cope with or doesn’t impact quality of life. The medical community increasingly recognizes that ITP carries significant burdens:

• Physical symptoms (fatigue, bleeding risk)
• Psychological impact (anxiety, uncertainty)
• Medication side effects
• The challenge of being diagnosed with something previously unheard of

Treatment Variability and Decision-Making

Leigh from Brisbane, Australia (6 years with ITP, currently on Prednisolone after crashing to platelets of 20 despite being very fit and active) asked about treatment protocols and why patients receive different medications.

Dr. Bagot explained the UK approach to treatment decisions:

Standard Initial Treatment

• Steroids (prednisolone) are always used first
• If platelets fall when steroids are stopped, multiple treatment options are discussed with the patient

Available Second-Line Options

• TPO agonists (Eltrombopag, Avatrombopag, Romiplostim)
• Rituximab
• Immunosuppressive drugs (mycophenolate, azathioprine)

Shared Decision-Making Process

Dr. Bagot described her approach:

1. Present all options with risks, benefits, and side effects
2. Some patients want to make their own choice after hearing the information
3. Other patients prefer the doctor’s recommendation
4. When asked for her recommendation, she generally suggests Eltrombopag first because it has the best clinical trial data (the only ITP treatment with excellent randomized controlled trials) and approximately 80% response rate

She emphasized that in Scotland, clinicians have flexibility and aren’t mandated to follow rigid treatment protocols, allowing for truly personalised care.

When Not to Treat

Dr. Bagot made an important point about avoiding unnecessary treatment:

• If platelets stabilise at 30-36 off all medications with no bleeding symptoms, treatment may not be needed
• Some patients don’t respond to any medications but have no bleeding even with single-digit counts (5-8)
• In such cases, if patients are comfortable, monitoring without active treatment is appropriate
• Treatment is only necessary when bleeding symptoms occur or platelet counts are unstable

Every Patient is Different: Dr. Bagot emphasized this repeatedly – response to treatments, side effects, disease patterns, and symptoms vary completely from patient to patient. This makes ITP fascinating but challenging, requiring individualized care plans.

ITP Registry and Research Participation

Libby asked via chat about DNA and blood sample collection for research.

Dr. Bagot and Mervyn discussed the ITP registries:

Current Registry System

• Adult ITP Registry: Now the largest ITP registry in the world with over 5,000 participants
• Secondary ITP Registry
• Paediatric Registry: Recently moved from Manchester to London and integrated into the REDCAP system (same platform as other registries)
• Pregnancy Registry

The paediatric registry integration will eventually allow tracking patients from birth through adulthood, providing unprecedented long-term data.

Why Registry Participation Matters

Dr. Bagot explained the critical importance:

• ITP varies so dramatically between patients that individual doctor experience is insufficient
• Large-scale data collection on platelet counts, treatments, and outcomes is essential to understand patterns
• Blood and DNA samples enable research into ITP mechanisms
• Doctors cannot predict individual outcomes at diagnosis – registry data helps identify patterns and improve predictions

Not all hospitals participate in the registry due to administrative requirements. Patients can ask their clinicians if their hospital/center is registered. In Scotland, Glasgow Royal Infirmary, Edinburgh, Aberdeen, and Dundee participate.

Annual Patient Convention Reminder

Dr. Bagot enthusiastically endorsed the upcoming Annual ITP Support Association Patient Convention, at the Royal College of Pathologists, London on 27^th June 2026,  describing it as:

• Patient-oriented format with breakout sessions on specific topics (ITP in children, ITP in women, etc.)
• Direct access to ITP specialists for questions in small group settings
• Latest research and treatment information including discussion of clinical trials
• Networking opportunity to meet other ITP patients
• Friendly atmosphere designed to empower patients with knowledge

Dr. Bagot will present her analysis of the TPORA side effects survey conducted last year at this event. You can register your place by going to www.itpsupport.org.uk.