Mepolizumab for Eosinophilic Granulomatosis with Polyangiitis User Reviews

• Msb...
• Taken for 1 to 2 years
• September 13, 2020

Mepolizumab "I have eosinophilic asthma and took Xolair for 10 years until it started to cause severe back pain and leg pain. I stopped the Xolair, and the pain went away entirely. I started the Nucala in January 2019, and at first, it worked like a charm for the asthma, but I always had some type of flu-like symptoms. As time went on, the Nucala became less and less effective, and I am still having what feels like a constant flu-like virus all the time, some anxiety, and constant stomach aches. After the last shot, I developed shingles within a day and a half after the shot. I truly believe these monoclonal antibody therapies (Xolair, Nucala, Fasenra, etc.) are decreasing our immune systems and creating a more immunosuppressed environment. I am not sure what I am going to do at this point, but I hope I am not doing more harm than good to my body."

• Fai...
• Taken for 1 to 6 months
• September 14, 2019

Mepolizumab "I was put on Nucala after finally seeing a pulmonologist, after hospital admissions by ambulance for E-type asthma. I also have a rare lung disease. I am a non-smoker my whole life. After the first injection, I had side effects come on very strong: nausea, vertigo, pain, arthritis in back feet, ulcers in mouth, broken cracked gums, rash on my back skin, ear infections, painful, and to the point I couldn't drive my car due to the onset of severe vertigo. I rang the Nucala company and explained my anguish, then saw my specialist. After three injections, I still had asthma all through treatment, so I was told to stop immediately. This drug challenged me, like chemotherapy. It may work for some people, but not others. I've had chemotherapy in the past and found that Nucala reminded me of chemo treatments. I hope they find more ways to control asthma in the future."

• Two...
• Taken for 1 to 2 years
• March 3, 2020

Mepolizumab "I've been on Nucala for two years. I have chronic eosinophilic pneumonia. My treatment before Nucala was 30 to 40 mg of prednisone. I'm down to 5 mg of prednisone now. 10 mg on a bad day. And zero side effects. I say amen."

• Duf...
• Taken for 1 to 6 months
• January 24, 2019

Mepolizumab "I am coming up to my third shot of Nucala. After the first shot, I felt normal without any allergy symptoms for the first week, but as the month went on, less comfort and more allergies came back. The second month, same thing, I felt great the first week or so, then my sinuses dried out, and I started a humidifier, which helped with that. The third week, I started getting anxiety, and it reminded me of the symptoms I had with Singulair (agitated and nervous overwhelming feelings, and then it would pass and come back at times when it was warm in the house or wherever I was). I am due for the third shot, and they claim it will improve, but I am afraid of anxiety coming back. I wish I could figure out if it’s the Nucala causing it, but it seems this is only mentioned once in a side effect on here. The shots do seem to help, but my asthma was not as serious as some described above. I am on Symbicort and Xopenex in addition to Nucala."

• Amb...
• Taken for 1 to 6 months
• October 9, 2019

Mepolizumab "A brilliant drug has helped with the lungs. I stopped wheezing after the first injection. I have now been on Nucala for six months, but I have hair loss and severe pain in my foot and all over my body, so painful 24 hours all the time. I'm not sure if it is reducing steroids slowly from 10mg to 5mg over the months or the drug, but I seem to have all the symptoms everyone is having. It has saved me from my wheezing lungs, so I will continue to see how I go."

• Anonymous
• Taken for 1 to 6 months
• February 27, 2020

Mepolizumab "I have been getting the Nucala injections for about 6 months now, and for the first couple of months, I could breathe okay but developed a sinus/ear infection that caused a complete blockage in my ear. I have still been having to use my nebulizer treatments and rescue inhaler and have severe fatigue, headaches, muscle spasms, and back pain. I will not be getting any more of these injections."

• ter...
• Taken for 1 to 6 months
• April 17, 2023

Mepolizumab "Where do I start? I was fine until I took Nucala. My PSA immediately doubled, my blood pressure went up, I had debilitating back and shoulder pain, my bowels got clogged up, I was tired, and I had abdominal pain. In short, the stuff was poison to me. All these issues that came up I never had until Nucala. NONE of them. I am now off Nucala, but my back still won't heal and is very painful. Be careful what you take and what you believe about these biologics. You could not pay me to take Nucala!!"

• She...
• Taken for 1 to 2 years
• January 2, 2024

Mepolizumab "It took a long time for doctors to figure out what was wrong with me--I had adult-onset asthma that was worsening along with chronic sinusitis. Then, I developed GI issues and was diagnosed with eosinophilic colitis and eosinophilic gastroenteritis. I have been on prednisone for two years. I started Nucala at 100 mg, and it helped immensely but wasn't strong enough to fully resolve everything. So, we recently increased the dosage to 300 mg due to my diagnosis of Churg-Strauss (EGPA), as that is the recommended dose. It is working quite well. My goal is to get off prednisone. I am currently taking 8-10 mg a day. I do not experience too many side effects on Nucala, except for a lot of joint pain. My arthritis has become severe, and I am soon getting surgery on my hand. Overall, Nucala is a miracle drug that has allowed me to feel so much better."

• Wee...
• September 19, 2019

Mepolizumab "Late onset asthma about 18 years ago, polyps, heart valve problems, high eosinophilia, pericarditis for over five years. Given Nucala for both severe asthma and Churg-Strauss. Has helped wheezing and breathing. Have noticed attacks, immune, and weakest part of body. Constant bladder infections, headaches, sore throats. Am exhausted all the time. In stage two of disease. Like any other meds, helps one thing, causes another. Have had nine times, hoping to put disease in remission."

• Anonymous
• Taken for 2 to 5 years
• February 24, 2023

Mepolizumab "I have Churg-Strauss and have been hospitalized three times before being diagnosed. This drug has saved my life, if only not having to take prednisone. Dosage I have taken for almost three years is 300 ml every 28 days, with no negative side effects. Blood tests reveal no eosinophils at the end of four weeks, and I always feel much better after the injections. Sometimes I get tired after the injections, but I don’t consider it a negative."

• Blu...
• Taken for 1 to 6 months
• March 14, 2021

Mepolizumab "I have had asthma on and off for 60 years. Last year, a blood test showed eosinophilic asthma, which made me eligible for Nucala. This is subsidized by the Australian government. Over the years, I no longer responded to prednisone or inhalers and was very glad that Nucala worked for the first 3 months. I felt like a new woman, and my respiratory specialist was overjoyed that at last something worked. But after another 2 months, I no longer had any benefit for my breathlessness. I am due for injection No. 6 next week, so I will see if I respond again favorably. I had no side effects."

• cou...
• Taken for 6 months to 1 year
• February 5, 2021

Mepolizumab "I've been on Nucala for almost a year now. I did initially notice fatigue and hair loss, but my doctor didn't seem to think it was related and was more due to work stress, however, that has all passed now. I will say that I went from uncontrollable coughing and being unable to breathe after doing minor things (like walking), and now I am inhaler-free! Overall, I have had a good experience so far."

• Mik...
• Taken for 5 to 10 years
• January 6, 2024

"Went on multiple bouts of prednisone, and at one point, I was on it for a year and a half. My eosinophil count on the blood test was in the low 20s, it’s not supposed to be higher than 7. So Dr. F first started me on Mepolizumab shots in 2016. I’ve been on them ever since. I take a whole host of other medications and inhalers as well (I was told I’m on the maximum number of meds I can safely be on). I self-administer the shot in my stomach, alternating left side and right side each time, every 28 days. The doctor who originally started me on this shot said I couldn’t be on it for too long a period of time. It has been approximately 8 years now. That doctor no longer works at the VA I go to, so I have a new Pulmonologist. He wants to start peeling off certain breathing meds, which I’ll do next visit. When I’ve missed a shot, my breathing goes downhill, so I know it’s working."

• Gra...
• Taken for 2 to 5 years
• December 28, 2023

Mepolizumab "Nucala has made a positive contribution to my life. Emergency room visits and three hospitalizations are in the past once I started Nucala every 28 days with three injections totaling 300 ml. All the other symptoms have not come back and my asthma is controlled. I am grateful for the team of doctors that prescribed Nucala."

• Lyn...
• Taken for 1 to 2 years
• May 15, 2020

Mepolizumab "Had great results initially. No Xopenex! Four months ago, delivery changed to pre-prepared shots packaged by the manufacturer instead of being mixed by pharmacists on-site after I arrived. Health deteriorated for four months, from 20 minutes on the treadmill to tough 5-minute walks and oxygen at night. Shot can be delivered from the hospital about 2 miles away any time from hours to days or weeks. Not sure if that is the problem. Comments?"

• Mor...
• Taken for 5 to 10 years
• April 6, 2022

Mepolizumab "On Nucala ~5 years for Eosinophilic Granulomatosis with Polyangiitis (EGPA). EGPA manifests like asthma, I suspect it is more nuanced. Close enough! I have only used a month-long steroid inhaler to get a handle on a rare extreme seasonal flare-up 2x during the past ~5 years. The source of any side effects is hard to attribute because they require going off meds to narrow the true cause. That is not practical for me. Skin rashes preceded first injections by months and about 2 years of inconclusive dermatology investigations before it abated. Recurs occasionally. Rash vaguely resembles early shingles, and I can't say it's the Nucala, but it may be a component. A general malaise during autumn and winter is common (in my experience). This might be EGPA-related, boosting prednisone for 2 weeks sets things right. I am reactive to prednisone, and it has its own downside. Currently: more frequent aches/back pains this year. COVID shutdown = poor muscle tone could be exacerbating it as much as any drug."

• Mor...
• Taken for 5 to 10 years
• April 6, 2022

"Hope this helps someone else: Nucala works quite well. I can’t imagine where I’d be without it. Several other conditions were tested before my diagnosis of EGPA, including aspergillosis. Eventually, a lung biopsy and the opinion of a leading EGPA specialist confirmed EGPA. Have been tested for hypereosinophilia (yes, there is a test) and was negative. OK, so it's definitely EGPA! Uncertain if any issues I have are true side effects of the drug or due to other meds and conditions. I just want to feel good and not dwell on daily ups and downs, though I think I should have sucked it up and kept a medical journal. (I made this mistake with regard to another med some years ago. Keep a journal for a few months or years when adding or changing meds, you may find it useful). Been on Nucala for 5 years or thereabouts after coming down with a vicious bout of pulmonary issues and pneumonia that were distilled down to EGPA/Eosinophilic Asthma."

• zvs...
• Taken for 2 to 5 years
• March 22, 2024

Mepolizumab "Since I started on the medication, I have no flares of EGPA - no pain, no skin issues, and my asthma is virtually non-existent."

• Ach...
• March 18, 2023

Mepolizumab "Nucala makes my back hurt. I feel queasy. Pain in the left upper abdomen. I'm on the 4th dose. Not sure about this Nucala, especially after all the positive hype from the doctors."

• Anonymous
• Taken for 2 to 5 years
• July 23, 2024

Mepolizumab "Certainly has helped me over the years. While taking it, I was always on cortisone before then and other drugs."

• Ter...
• Taken for 2 to 5 years
• July 3, 2021

Mepolizumab "I have been on Nucala for EGPA 2-½ years. I’m concerned about long-term use because no one knows what to expect. Two weeks ago, my ear started bleeding, almost like a leak."