After 15 yrs with my previous pain management doctor, I went to see a new one. He explained, that when you break your finger that’s a certain type of pain. Ouch that hurts. With AS, our type of pain is different because of the inflammation our disease produces. Biologic medicines are what is used to reduce or eliminate the inflammation and pain associated with AS. If that’s not working, there is no amount of pain/opiate medication he can prescribe to relieve the pain. We will be chasing… read more
@A MySpondylitisTeam Member I do understand what you're going through. For myself, I've been on a bunch of different biologics over the years and in June my Rhuematologist retired. I'm only seeing the new doctor tomorrow and I'm hoping for something new in the treatment area. Since I am not on any treatment as such I've been prescribed Hydro Morphone, 1mg for pain when needed. So my AS has advanced and I'm experiencing different sensations now and pain. Keep your appointment, there are quite a few options. I hope the best for you. Your not alone.
Yes, I have been told by my rheumatologist that biologics will not help me. The reason is that my inflammation is driven by EDS and MCAS. Unlike AS, my inflammation is solely driven by my body's reaction to externals due to faulty collagen. My body releases histamenes and other chemicals to fight things like they are allergic reactions. The funny part, I'm not allergic to anything after extensive panel testing (aside from chicken🤷🏼♂️). It's genetic and there is no pharmaceutical treatment of any kind. It is why you will not find support sites like this one for EDS... The pharma companies cannot profit off the collaboration of forum data like they do here.
I do hope everyone here realizes this is simply a data collection site! 🤣
What a journey — and what a weight to carry every single day. The frustration of trying treatment after treatment with little relief is something many MySpondylitisTeam members deeply understand. Your new doctor's explanation about inflammation-driven pain versus injury pain is actually a really important distinction, and Show Full Answer
@A MySpondylitisTeam Member I'm so sorry to hear of this terrible pain. My last flare-up lasted a month. Just know your not alone and they are always coming up with new options. Hopefully they will find you a meds that will give you relief. If you find that you can't wait, call the office and tell them it's an emergency and you need to see the doctor. I know you can do this here in Montreal Canada. Take care of you. 💐🌺
@DarlineMullin. Thank you. Right now I am on 15mg morphine, twice daily, and oxycodone 10-325, 5 times daily. Sadly, it’s barely doing anything. I am getting worse. Sitting than trying to stand, trying to get up from lying down, driving, and mobility in its self have been deteriorating over this past year. I keep telling myself that there are people out there way worse off than I am and I’m not dead yet. Hopefully my new doctors can preform more trial and error medications and a little luck to help. It is what it is though. Best wishes for all of us suffering and surviving.
Hi has anyone got with there AS Hidradenitis suppurativa it is a long-term (chronic) skin condition.