8 thoughts on “26 month update – I am on Immunosuppressants”
Hey Ruby so nice to hear how calm you are in your voice and that you are coping a lot better now. I think if I ever become really terrible again I’ll definitely consider going on cyclo but for the moment I’m ok. I’ve heard the medication is super expensive!! So glad to hear you are able to deal with stuff better now. I’d be interested to hear more about the medication in another video if you can be bothered haha
Hey Jordan – you’re in Australia as well aren’t you? It’s not expensive here – it’s on the PBS so $37 each time I fill the script. Very grateful for our medicare system, we are very fortunate.
To me that’s expensive, but I guess it depends how long the packet lasts?
I emailed my psychologist and she said she can do appointments long distance, but it affects the amount you can get back from medicare. If you find me on FB I can give you her email and she can discuss options with you.
I get 4 packets of 100mg with each script and they last me about 5 weeks. 🙂
I should also add that being on ciclo has saved me money in so many other areas – far far less moisturiser, not eating like the biggest horse on the planet and no antihistamines!
How are you doing now Ruby? Any side effects? What dosage are you on?
Hope things are wonderful for you 🙂
Hi! Sorry for the late reply, I didn’t notice the comment before! I’m up and down – ciclo worked fantastically for me at 400mg and then mostly well at 300mg. I have however recently transitioned to azathioprine. It is not really working for me. I have very rashy skin but haven’t flared at least. Still functional but the incessant itch and inward stress have returned. Days are definitely getting harder again. Derm has recently upped my azathioprine dose and if that isn’t working effectively within 6 weeks then it’s back to the drawing board – he wants me to try methotrexate but I might need something more immediate to get me through winter here. I am terrified of flaring like last winter so would prefer to go back to ciclo and just monitor kidneys closely as they were struggling.
Hi Ruby
I know it’s been a while. I hope you are doing ok on cyclo. My twin sister is switching to another immuno suppressant. So sad!
I am currently running a survey on the emotional effects of TSW. I am hoping that the survey will help raise awareness to the condition by looking at it from a psychology perspective rather than just pharmaceutical. Your input would be valued and appreciated if you are able to spare the time. Would you like to participate…. if so, email me at u31089@uni.canberra.edu.au and I can give you more information and a link.
Best wishes,
J
Ruby Red Heals Steroid Induced Eczema 
Hey Ruby so nice to hear how calm you are in your voice and that you are coping a lot better now. I think if I ever become really terrible again I’ll definitely consider going on cyclo but for the moment I’m ok. I’ve heard the medication is super expensive!! So glad to hear you are able to deal with stuff better now. I’d be interested to hear more about the medication in another video if you can be bothered haha
Hey Jordan – you’re in Australia as well aren’t you? It’s not expensive here – it’s on the PBS so $37 each time I fill the script. Very grateful for our medicare system, we are very fortunate.
To me that’s expensive, but I guess it depends how long the packet lasts?
I emailed my psychologist and she said she can do appointments long distance, but it affects the amount you can get back from medicare. If you find me on FB I can give you her email and she can discuss options with you.
I get 4 packets of 100mg with each script and they last me about 5 weeks. 🙂
I should also add that being on ciclo has saved me money in so many other areas – far far less moisturiser, not eating like the biggest horse on the planet and no antihistamines!
How are you doing now Ruby? Any side effects? What dosage are you on?
Hope things are wonderful for you 🙂
Hi! Sorry for the late reply, I didn’t notice the comment before! I’m up and down – ciclo worked fantastically for me at 400mg and then mostly well at 300mg. I have however recently transitioned to azathioprine. It is not really working for me. I have very rashy skin but haven’t flared at least. Still functional but the incessant itch and inward stress have returned. Days are definitely getting harder again. Derm has recently upped my azathioprine dose and if that isn’t working effectively within 6 weeks then it’s back to the drawing board – he wants me to try methotrexate but I might need something more immediate to get me through winter here. I am terrified of flaring like last winter so would prefer to go back to ciclo and just monitor kidneys closely as they were struggling.
Hope you’re well! x
Hi Ruby
I know it’s been a while. I hope you are doing ok on cyclo. My twin sister is switching to another immuno suppressant. So sad!
I am currently running a survey on the emotional effects of TSW. I am hoping that the survey will help raise awareness to the condition by looking at it from a psychology perspective rather than just pharmaceutical. Your input would be valued and appreciated if you are able to spare the time. Would you like to participate…. if so, email me at u31089@uni.canberra.edu.au and I can give you more information and a link.
Best wishes,
J