Anyone else with Churg-Strauss or EPGA?

I appreciate how you are feeling but am thankful they have identified EGPA which does require higher doses of prednisone than PMR to get it under control. It also takes longer to lower the pain than PMR, thus the higher doses. I hope that you will be connected with a good Rhumatologist very soon and that NUCALA will be tried to lower your eosinophils which trigger this disease. I am fortunate that this has lowered mine and I am back to living fairly normally now. I am immensely grateful for my rheumatologist who, I believe, saved my life. I have three shots, two in my thighs and one in my belly, every 4-5 weeks. They are not painful and I have not had side effects that I an aware of. I am able to get them at an infusion clinic.The hardest part was tapering down very slowly from the prednisone to avoid a surge of the disease as my body came under the effects of Nucala. At the end, under 15mg, go Very slowly. I had one surge, went back to 20 and then followed advice from others in mayo clinic connection to go slowly. Consider percentages when you lower doses. 10 to 7-1/2 for 4 days then 5 for a week or more, then 3, and when lower than 2-1/2 go down by 1/4 of 1 mg at a time. Some version of this which works for You. You may have to watch for oral thrush when on both drugs til you can get off prednisone. The troches you let dissolve in your mouth 5X a day worked for me.
Hope this brings you hope. I had 12 years of up and down with prednisone before EGPA went active with vascular issues. There is an end to this tunnel and you are not alone. God bless you and go after that rheumatologist!
Hugs,
MTH13 (error in printing my address last time)

Jonifranklin- it took me about 6 months to get off the prednisone, so have patience once you are hopefully on Nucala. The good news on lower prednisone doses is that sinus issues and muscle/bone aching are gone. After 9 months on prednisone ( took 3 months to get up to speed on Nucala) I am feeling well, but without the prednisone, fall allergies have me back on Claritin, and the usual age related aches and pains come and go. Not a bad trade off at close to 79 years old!
There IS hope! I wound up in the ER when my disease reached it’s worst also. They thought it was PMR and it took the Rhumatologist to diagnose EGPA two months later.
The more of us who make this elusive disease recognized Before it lands people in the hospital, the better!!
God bless you and help you take charge of this beast!
❤️MTH13

Wow thanks so much for you information I’m still in hospital (in New Zealand) where very little is known about the condition , my biggest issue is the neuropathy in my hand that drives me crazy and it he edgyness and complete lack of sleep

@jonifranklin Welcome to Mayo Clinic Connect!! Did you know about MCC or did someone in the hospital recommend us? I know you’re scared and being sick and the the hospital is a very strange place to find yourself. The high doses of prednisone is what everyone with an autoimmune disorder gets in order to jumpstart treatment. Here is some information from Mayo Clinic about the disorder.
https://www.mayoclinic.org/diseases-conditions/churg-strauss-syndrome/symptoms-causes/syc-20353760
Have you got some family and friends that you can talk to?

Cyclophosphamide Has anyone else had this treatment please, I’d really like to know about side effects

I don’t think there’s anyone in New Zealand with this condition so I don’t really have any one to talk to x

Do have your doctor give you Nucala which is a humanized monoclonal antibody named Mepolizumab ( trade name Nucala) and specifically targets EGPA . Fewer side effects than the anticancer drugs. I hope it is available in New Zealand. I live in Massachusetts, USA.
MTH13 who is praying for you.

@jonifranklin I had 8 doses of cyclophosphamide when the prednisone wasn’t working. I had tried adding mycophenelate with the prednisone but nothing was working. My main reaction to the drug was just 1-2 hours after when we tried to have dinner. I ate a bit of spagetti, said I had to go to the bathroom because I felt funny and then started screaming because it felt like someone was stabbing me! Turned out that none of the nurses had told me NOT to eat anything with spicey tomato sauce because of a bad reaction!! So, now you know to avoid any spicey tomato sauce meals!! Fair warning in case they forget to tell you! No other side effects!

Wow that’s interesting! I’m mostly worried about hair loss as I’m a breast cancer survivor and I’m dreading going through that again and also mouth ulcers ?

@jonifranklin Well, there was hair loss, but no one even noticed! I stopped after 8 rounds so the hair loss stopped, too. There are some tricks the staff have that, I think, help prevent hair loss. The breast cancer support group may be of greater help than me. If you go to the Breast Cancer Support home page and look just below the main title, you’ll see a search box. Enter ‘hair loss prevention’ or something like that and hit enter. What will come up are all the comments and discussions that deal with hair loss. I’m sure you’ll find something!