Thank you John. I do have a care team and have just finished 6 mo of Nucala which has helped a lot and kept me off of Prednisone. They are continuing on for another 6 mo. since it seems to be working on my breathing. They admit that they just don't know alot about Churg Straus and we are figuring it out together. There are many other things that pop up at different times with my body and so I thought I would check with others to see if I can learn anything on my own. I am due for more blood work and maybe CT or XRAYS to check progress there.
I have Churg Straus also and was put on Nucala as well. However within 12 hours of taking Nucala my lower legs broke out into small and medium lumps that were all very painful and some turned into open sores while others truned into large painful red rashes. There were so many I couldn't count. My arthritis doctor was stumped as to what or why I got these lumps. I was on Nucala for 3 months when we decided to take me off of it. I think my breathing did improve during that time but the pain from the lumps has disrupted my life so much that It wasn't working. I canot sleep because just having a blanket or sheet resting on my legs was painful. I describe the lumps as small volcanos of nerves.
I'm wondering if anyone else has these lumps/lesions/sores?
I have Churg Straus also and was put on Nucala as well. However within 12 hours of taking Nucala my lower legs broke out into small and medium lumps that were all very painful and some turned into open sores while others truned into large painful red rashes. There were so many I couldn't count. My arthritis doctor was stumped as to what or why I got these lumps. I was on Nucala for 3 months when we decided to take me off of it. I think my breathing did improve during that time but the pain from the lumps has disrupted my life so much that It wasn't working. I canot sleep because just having a blanket or sheet resting on my legs was painful. I describe the lumps as small volcanos of nerves.
I'm wondering if anyone else has these lumps/lesions/sores?
That sounds painful. I have not had that happen to me. I have had some rashes on my legs after shaving which is part of the vasculitis issues. They didn't hurt just looked awful. I have not had any adverse effects from the medication. Fatigue maybe. Its purpose to reduce my eosinophils has been successful. I know there are some other medications like Fasenra that might be better if you are having a reaction. Could there be another disease of the nerves? What are they doing to reduce your eosinophils?
That sounds painful. I have not had that happen to me. I have had some rashes on my legs after shaving which is part of the vasculitis issues. They didn't hurt just looked awful. I have not had any adverse effects from the medication. Fatigue maybe. Its purpose to reduce my eosinophils has been successful. I know there are some other medications like Fasenra that might be better if you are having a reaction. Could there be another disease of the nerves? What are they doing to reduce your eosinophils?
I have had numerous blood draws since October when a blood test sinched the diagnosis of Churg Straus. My arthritis doctor has been the primary in diagnosis and has been suspecting my condition for a couple of years now. In Oct he had all the data from that blood test to move forward, so he started me on Nucala and insisted on my getting a Shingles shot as well.
Looking back these last few years my body started with asthema, then later I was diagnosed with PMR and was treated with prednisone for 18 months. It worked well but with bad consequences. I now have bad bones, high blood presure, and I put on 40 lbs. I stopped taking prednisone and was able to lose the weight. In 2017 I woke up one morning with my feet numb and tingling and was told I had neuropathy. I also had my kidneys checked and have moderate kidney disease. I blame it on the prolonged use of Ibuprofen for my migraines.
My arthritis doctor is retiring and I have requested a referral to UCSF at a vasculitis clinic. So My eosinophils situation will be more clear. I also have had sinus surgey so it all points to one thing EPGA. Its been a long journey but I hope to find more about what is going on. My ENT has requested an antibodies test and proposed a treatment of upping my antibodies if needed. So thats my story.
Churg-Strauss or EPGA
After 14 years struggling with symptoms, and many prednisone tapers, I finally found a rhumatologist who researched and properly diagnosed this. My understanding is that only 1 or 2 people per million get this per year, so not well recognized by most doctors. I will be on a long slow taper and hope to go in remission. If it recurs, more of the same and possibly a biologic to spare the prednisone.
Feeling grateful for many things, nd this doctor especially.
Churg-Strauss or EPGA
After 14 years struggling with symptoms, and many prednisone tapers, I finally found a rhumatologist who researched and properly diagnosed this. My understanding is that only 1 or 2 people per million get this per year, so not well recognized by most doctors. I will be on a long slow taper and hope to go in remission. If it recurs, more of the same and possibly a biologic to spare the prednisone.
Feeling grateful for many things, nd this doctor especially.
@mth13, I'm encouraged to hear that you have found a rheumatologist who understands. What dose of prednisone are you currently on? What is the tapering schedule to begin?
@mth13, I'm encouraged to hear that you have found a rheumatologist who understands. What dose of prednisone are you currently on? What is the tapering schedule to begin?
Currently on two days of 60 and today starting 40, after 37 days of 20 and an attempt to lower to 15 which brought on a rebound. Still in the discovery part of this treatment. I have a wonderful doctor who will lead me through this. After 12 years in the wilderness I am hoping to shed light on this disease with more doctors becoming aware of it.
That sounds painful. I have not had that happen to me. I have had some rashes on my legs after shaving which is part of the vasculitis issues. They didn't hurt just looked awful. I have not had any adverse effects from the medication. Fatigue maybe. Its purpose to reduce my eosinophils has been successful. I know there are some other medications like Fasenra that might be better if you are having a reaction. Could there be another disease of the nerves? What are they doing to reduce your eosinophils?
Encouraging news from MTH13 on EGPA.
I am now past the second dose of Nucala, a biologic for treatment of Eosinophilia as EGPA and my eosinophils went from 15% down to 1.3%in the first month. I have tapered my prednisone to currently 7-1/2 mg daily and hope to continue weekly to lowered doses and off. So far so good! Some return of what is probably normal, mild congestion for this rainy, foggy weather. I am extremely grateful and hope others might be able to try Nucala as a monthly treatment at an infusion center, of three shots each time. It is not painful and certainly better than staying on prednisone.
This has taught me great compassion for all people on this site. You are all warriors!
MYH13:
Good news and then basmd: after tapering down from 20 mg prednisone and depending on NUCALA to control my eosinophils, I went down weekly by 2-1/2 mg and off. Within 3 days, my lungs began to fill with clear phlegm, my lower stomach ached, I became exhausted, and woke up this morning with extreme pain in my left hip. Could not stand on it.I assume this is adrenal weakness and went back on
3-1/2 mg prednisone this morning. Lungs are better snd I can walk on my left leg with less pain. I will taper down much slower and hope for the best. Any advice out there on this EGOA roller coaster? You are all dealing with so much, I hate to complain!
Love to all of you
MYH13
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I have Churg Straus also and was put on Nucala as well. However within 12 hours of taking Nucala my lower legs broke out into small and medium lumps that were all very painful and some turned into open sores while others truned into large painful red rashes. There were so many I couldn't count. My arthritis doctor was stumped as to what or why I got these lumps. I was on Nucala for 3 months when we decided to take me off of it. I think my breathing did improve during that time but the pain from the lumps has disrupted my life so much that It wasn't working. I canot sleep because just having a blanket or sheet resting on my legs was painful. I describe the lumps as small volcanos of nerves.
I'm wondering if anyone else has these lumps/lesions/sores?
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1 ReactionThat sounds painful. I have not had that happen to me. I have had some rashes on my legs after shaving which is part of the vasculitis issues. They didn't hurt just looked awful. I have not had any adverse effects from the medication. Fatigue maybe. Its purpose to reduce my eosinophils has been successful. I know there are some other medications like Fasenra that might be better if you are having a reaction. Could there be another disease of the nerves? What are they doing to reduce your eosinophils?
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Like -
Helpful -
Hug
1 ReactionI have had numerous blood draws since October when a blood test sinched the diagnosis of Churg Straus. My arthritis doctor has been the primary in diagnosis and has been suspecting my condition for a couple of years now. In Oct he had all the data from that blood test to move forward, so he started me on Nucala and insisted on my getting a Shingles shot as well.
Looking back these last few years my body started with asthema, then later I was diagnosed with PMR and was treated with prednisone for 18 months. It worked well but with bad consequences. I now have bad bones, high blood presure, and I put on 40 lbs. I stopped taking prednisone and was able to lose the weight. In 2017 I woke up one morning with my feet numb and tingling and was told I had neuropathy. I also had my kidneys checked and have moderate kidney disease. I blame it on the prolonged use of Ibuprofen for my migraines.
My arthritis doctor is retiring and I have requested a referral to UCSF at a vasculitis clinic. So My eosinophils situation will be more clear. I also have had sinus surgey so it all points to one thing EPGA. Its been a long journey but I hope to find more about what is going on. My ENT has requested an antibodies test and proposed a treatment of upping my antibodies if needed. So thats my story.
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Helpful -
Hug
1 ReactionChurg-Strauss or EPGA
After 14 years struggling with symptoms, and many prednisone tapers, I finally found a rhumatologist who researched and properly diagnosed this. My understanding is that only 1 or 2 people per million get this per year, so not well recognized by most doctors. I will be on a long slow taper and hope to go in remission. If it recurs, more of the same and possibly a biologic to spare the prednisone.
Feeling grateful for many things, nd this doctor especially.
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1 ReactionWelcome @mth13. I moved your post about eosinophilic granulomatosis with polyangiitis (EGPA) or Churg-Strauss syndrome to this discussion that @roxy1954 started to connect people:
- Anyone else with Churg-Strauss or EPGA? https://connect.mayoclinic.org/discussion/churg-strauss-or-epga/
In addition to Roxy, you'll also be able to connect with @juanito @oldkarl @oakwoman and others.
@mth13, I'm encouraged to hear that you have found a rheumatologist who understands. What dose of prednisone are you currently on? What is the tapering schedule to begin?
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2 ReactionsCurrently on two days of 60 and today starting 40, after 37 days of 20 and an attempt to lower to 15 which brought on a rebound. Still in the discovery part of this treatment. I have a wonderful doctor who will lead me through this. After 12 years in the wilderness I am hoping to shed light on this disease with more doctors becoming aware of it.
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Helpful -
Hug
2 ReactionsTry an electric shaver for women instead of a razor. Much gentler on the legs and may solve that problem for you as it did me!
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1 ReactionEncouraging news from MTH13 on EGPA.
I am now past the second dose of Nucala, a biologic for treatment of Eosinophilia as EGPA and my eosinophils went from 15% down to 1.3%in the first month. I have tapered my prednisone to currently 7-1/2 mg daily and hope to continue weekly to lowered doses and off. So far so good! Some return of what is probably normal, mild congestion for this rainy, foggy weather. I am extremely grateful and hope others might be able to try Nucala as a monthly treatment at an infusion center, of three shots each time. It is not painful and certainly better than staying on prednisone.
This has taught me great compassion for all people on this site. You are all warriors!
-
Like -
Helpful -
Hug
1 ReactionMYH13:
Good news and then basmd: after tapering down from 20 mg prednisone and depending on NUCALA to control my eosinophils, I went down weekly by 2-1/2 mg and off. Within 3 days, my lungs began to fill with clear phlegm, my lower stomach ached, I became exhausted, and woke up this morning with extreme pain in my left hip. Could not stand on it.I assume this is adrenal weakness and went back on
3-1/2 mg prednisone this morning. Lungs are better snd I can walk on my left leg with less pain. I will taper down much slower and hope for the best. Any advice out there on this EGOA roller coaster? You are all dealing with so much, I hate to complain!
Love to all of you
MYH13
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1 Reaction