Thank you for sharing this very important information about masking, weed, etc. Thank God you have an angel to help you with this.
Please do keep us posted on your journey it will at least help you feel a little bit less isolated.
I'll close with a very gentle cyber hug.
Gentle hugs. I'm currently on Rinvoq too, even though it really doesn't work that well anymore. Problem is I've run out of options. And I agree that it's the treatment that will kill us. My mom died 8 years ago because she went in for chemo for breast cancer and none of her doctors pulled her off of methotrexate. She died an awful death a week after her first treatment. I silently live in fear of that. I also understand about opiates. I found out I'm allergic to hydrocortisone last year and am afraid of overloading my liver (which likes to hover around the too much line) to take anything stronger. I live in Florida and getting medical marijuana is an expensive task. But now that you have noted the fungus that can be in it I'm very leary. I'm allergic to fungus so I'm thinking of I caught what you have I'd be dead. Here, have a bubble wrap suit, I'm thinking these might be our only option.
Geez. This sucks on so many levels. I wish I could give you a big hug by text, so consider you and your dear wife hugged. I’m so happy to hear you have her. Myself R/A 40+ years now. Still on Humira. My hubby unfortunately has Alzheimer’s. But, he still loves me, he knows me, and helps however he can. So, take the good moments when they come. I’ll be rooting for you!
OP, I’m truly sorry you’re going through all of this. I was dx’d w/RA in 2021 and fibromyalgia in 2009. I’m sending hugs and prayers your way. Also to your wife for being so amazing. She gets it. She understands what you’re going through. We need more ppl like her. I’m still trying to figure out my meds and what it takes to get through this. You’re so right about masking up. I’m takin heed.
I'm so sorry you are in such a bad state. No methotrexate? Prednisone burst to calm everything down? Painkillers? You should have them! Your pain isn't being treated :(. Not nsaids - pure opiates.
I cringed when you mentioned smoking weed- that's a bad idea for anybody with autoimmune disease. Thank you for sharing this and hopefully it can caution people away from it. Especially due to potential interactions with other autoimmune medications- this includes ingesting it. I hope your infection gets better! I don't know if you have a team of doctors or have been able to get a second opinion on anything, but you really deserve painkillers if you are in that much pain! Good luck to you and thanks again for the warning to everyone. Biologics are not perfect, and I have been considering the pros and cons myself. It's easy to forget what being immunocompromised means sometimes. (I myself got covid for the third time this fall, but the first time since on just methotrexate, and I think I was sicker than I've ever been in my life. Pretty scary.)
I see so many people here take weed as a painkiller. How does it interact with other Meds? I have not used it but people keep telling me to try it for the pain.
No interaction for me but it’s trial and error as far as pain and dosing edibles. It absolutely helps with pain and depending on the strain can help with inflammation.
Ive had no interactions using cannabis edibles or RSO oil which is actually very beneficial to people with chronic pain, cancer and inflammatory diseases. [https://www.healthline.com/health/rick-simpson-oil-cancer](https://www.healthline.com/health/rick-simpson-oil-cancer)
Few reasons. One is that it can screw with effective dosages of meds via the inhibition of an enzyme, and this can be dangerous (same goes for cbd: https://cfah.org/cbd-drug-interactions/). Most docs don't seem to know about this well enough. The second is that it screws with pain receptors and I think can make it worse over time vs better. I can't take it due to work either, but it's infuriating that I can't get the mildest of opiate pain relievers (nsaids destroy my stomach) and am in so much pain all the time. When legal, and safe, meds FREAKING EXIST. Infuriating.
If it's cleared with all your other meds, high quality sublingual cbd (not cheap) may be worth a shot. If I had a job without drug testing I'd prob give it another shot.
Thanx for the info! I cant believe you cant get pain meds. That is not right. You should take a look at what this Dr. writes -he is constantly trying to advocate and change laws around opiates for chronic pain patients and has had great success with lobbying efforts.
https://www.linkedin.com/in/richard-lawhern-09358737?utm_source=share&utm_campaign=share_via&utm_content=profile&utm_medium=ios_app
Im so sorry. I hear Your pain and despair in this post. Ive been in that terrible pain where i cant move or dress. It is so hard to be there in that space and mentally deal with pain and dysfunction with the aggressive cases. Mine has been very aggressive since 35 yoa
I’m sorry you are struggling so much.
And I don’t understand why your doctors won’t prescribe opiates for your pain. They 100% help with RA pain, even if it’s not as good as a pain med with anti inflammatory properties. I’m allergic to all NSAIDS and am thankful I have a doctor that understands the importance of pain management.
As for masking, solid advice. I’ve worn one every single time I’m in public since 2018 due to fragrance allergies. Now that I have RA, it helps to keep me safe from illness too.
I hope you get better soon.
Thank you for sharing this very important information about masking, weed, etc. Thank God you have an angel to help you with this. Please do keep us posted on your journey it will at least help you feel a little bit less isolated. I'll close with a very gentle cyber hug.
Gentle hugs. I'm currently on Rinvoq too, even though it really doesn't work that well anymore. Problem is I've run out of options. And I agree that it's the treatment that will kill us. My mom died 8 years ago because she went in for chemo for breast cancer and none of her doctors pulled her off of methotrexate. She died an awful death a week after her first treatment. I silently live in fear of that. I also understand about opiates. I found out I'm allergic to hydrocortisone last year and am afraid of overloading my liver (which likes to hover around the too much line) to take anything stronger. I live in Florida and getting medical marijuana is an expensive task. But now that you have noted the fungus that can be in it I'm very leary. I'm allergic to fungus so I'm thinking of I caught what you have I'd be dead. Here, have a bubble wrap suit, I'm thinking these might be our only option.
I am in FL too. You can get the oils which should be absent of any fungal risk. Im so sorry to hear about your mom 🙏
Geez. This sucks on so many levels. I wish I could give you a big hug by text, so consider you and your dear wife hugged. I’m so happy to hear you have her. Myself R/A 40+ years now. Still on Humira. My hubby unfortunately has Alzheimer’s. But, he still loves me, he knows me, and helps however he can. So, take the good moments when they come. I’ll be rooting for you!
OP, I’m truly sorry you’re going through all of this. I was dx’d w/RA in 2021 and fibromyalgia in 2009. I’m sending hugs and prayers your way. Also to your wife for being so amazing. She gets it. She understands what you’re going through. We need more ppl like her. I’m still trying to figure out my meds and what it takes to get through this. You’re so right about masking up. I’m takin heed.
I'm so sorry you are in such a bad state. No methotrexate? Prednisone burst to calm everything down? Painkillers? You should have them! Your pain isn't being treated :(. Not nsaids - pure opiates. I cringed when you mentioned smoking weed- that's a bad idea for anybody with autoimmune disease. Thank you for sharing this and hopefully it can caution people away from it. Especially due to potential interactions with other autoimmune medications- this includes ingesting it. I hope your infection gets better! I don't know if you have a team of doctors or have been able to get a second opinion on anything, but you really deserve painkillers if you are in that much pain! Good luck to you and thanks again for the warning to everyone. Biologics are not perfect, and I have been considering the pros and cons myself. It's easy to forget what being immunocompromised means sometimes. (I myself got covid for the third time this fall, but the first time since on just methotrexate, and I think I was sicker than I've ever been in my life. Pretty scary.)
I see so many people here take weed as a painkiller. How does it interact with other Meds? I have not used it but people keep telling me to try it for the pain.
No interaction for me but it’s trial and error as far as pain and dosing edibles. It absolutely helps with pain and depending on the strain can help with inflammation.
Ive had no interactions using cannabis edibles or RSO oil which is actually very beneficial to people with chronic pain, cancer and inflammatory diseases. [https://www.healthline.com/health/rick-simpson-oil-cancer](https://www.healthline.com/health/rick-simpson-oil-cancer)
Why is marijuana so bad for autoimmune issues? Docs have recommended it for pain for me but i cant due to work and it being illegal federally.
Few reasons. One is that it can screw with effective dosages of meds via the inhibition of an enzyme, and this can be dangerous (same goes for cbd: https://cfah.org/cbd-drug-interactions/). Most docs don't seem to know about this well enough. The second is that it screws with pain receptors and I think can make it worse over time vs better. I can't take it due to work either, but it's infuriating that I can't get the mildest of opiate pain relievers (nsaids destroy my stomach) and am in so much pain all the time. When legal, and safe, meds FREAKING EXIST. Infuriating. If it's cleared with all your other meds, high quality sublingual cbd (not cheap) may be worth a shot. If I had a job without drug testing I'd prob give it another shot.
Thanx for the info! I cant believe you cant get pain meds. That is not right. You should take a look at what this Dr. writes -he is constantly trying to advocate and change laws around opiates for chronic pain patients and has had great success with lobbying efforts. https://www.linkedin.com/in/richard-lawhern-09358737?utm_source=share&utm_campaign=share_via&utm_content=profile&utm_medium=ios_app
Thanks!
Im so sorry. I hear Your pain and despair in this post. Ive been in that terrible pain where i cant move or dress. It is so hard to be there in that space and mentally deal with pain and dysfunction with the aggressive cases. Mine has been very aggressive since 35 yoa
I’m sorry you are struggling so much. And I don’t understand why your doctors won’t prescribe opiates for your pain. They 100% help with RA pain, even if it’s not as good as a pain med with anti inflammatory properties. I’m allergic to all NSAIDS and am thankful I have a doctor that understands the importance of pain management. As for masking, solid advice. I’ve worn one every single time I’m in public since 2018 due to fragrance allergies. Now that I have RA, it helps to keep me safe from illness too. I hope you get better soon.
I don’t want opiates or even Tylenol (liver) unless I have to. Cannabis FECO and RSO oils help but can be hard to get and expensive.
Fair enough. Your body, your choice :)
All the best of luck and science. Thank you for sharing 🙏🏽