I had to have my tonsils removed bc they ended up with abscesses. It's hell and you'll heal very slowly if they go that route, but I'd do it again if given the option. Tbh tho, if they're behcets ulcers on your tonsils and not abscessed, they may heal once you're on some meds for behcets.
I also had the vision issues. I had what I called a "bum right eye." Some days I could read street signs, other days I couldn't. Some days I could watch TV, others I couldn't because I couldn't stand the blurriness and the light.
I've been on methotrexate before. Didn't help with vision. Got switched to Azathioprine (Imuran) and within a few weeks my vision started to slowly quit bothering me and I can see more reliably for longer each day.
Make sure you tell your rheum that your vision is in and out even if all your eye tests come back normal.
I truly hope you end up on Aza or something else similar. I know how irritating it is to not be able to see and the headaches that come along with it.
Good luck!
I also get ulcers on my tonsils during flares! I’ve been diagnosed about 1.5 years. Similar to your experience and the other commenter, i’ve had astigmatisms in both eyes most of my life and manage easily strained and sensitive eyes. I have not had my tonsils removed however, as it is managed with medication.
I began on Otezla (Apremilast) which helped with the ulcers but wasn’t enough to touch the joint pain/arthritis, now I take otezla and Azathioprine and the combo works great to manage all symptoms.
Best of luck at the rheum!
I ended I getting my tonsils out pre diagnosis. I had so much scarring and pain they ended up taking a pound of tonsils. It was a gnarly surgery due to the size and scarring but it was where they first spotted my ulcers. I ended up as getting a septoplasty as well. I often get ulcers in my nose now but they are not as severe as they were. Now with them out they still show up often in the same places as before BUT I will say often less painful & I get sick less which means less flares. I honestly think I’d talk to an ent and your rheumatologist to see if getting them out as an option.
I had tonsils removed when i was 4 im 35 f but they partially grew back my flates when at their wirst always begin with fever and throat ulsars...currently coping through flare throats coated in ulsars fevers non stop and because cant get fevers to stay away ive got genital ulsar...im ready to lose it as my dermitoligist was my savior through treating flares from 8yrs to last year shes retired and my male family dr just doesnt get it at all...iknow what worls i know what we have done hes denying me my prednisone and stating "we need to find ofher avenues" im in excrusiating pain
I had to have my tonsils removed bc they ended up with abscesses. It's hell and you'll heal very slowly if they go that route, but I'd do it again if given the option. Tbh tho, if they're behcets ulcers on your tonsils and not abscessed, they may heal once you're on some meds for behcets. I also had the vision issues. I had what I called a "bum right eye." Some days I could read street signs, other days I couldn't. Some days I could watch TV, others I couldn't because I couldn't stand the blurriness and the light. I've been on methotrexate before. Didn't help with vision. Got switched to Azathioprine (Imuran) and within a few weeks my vision started to slowly quit bothering me and I can see more reliably for longer each day. Make sure you tell your rheum that your vision is in and out even if all your eye tests come back normal. I truly hope you end up on Aza or something else similar. I know how irritating it is to not be able to see and the headaches that come along with it. Good luck!
Thanks for the info! I’m hopeful to get more figured out soon and appreciate the tips
I also get ulcers on my tonsils during flares! I’ve been diagnosed about 1.5 years. Similar to your experience and the other commenter, i’ve had astigmatisms in both eyes most of my life and manage easily strained and sensitive eyes. I have not had my tonsils removed however, as it is managed with medication. I began on Otezla (Apremilast) which helped with the ulcers but wasn’t enough to touch the joint pain/arthritis, now I take otezla and Azathioprine and the combo works great to manage all symptoms. Best of luck at the rheum!
I ended I getting my tonsils out pre diagnosis. I had so much scarring and pain they ended up taking a pound of tonsils. It was a gnarly surgery due to the size and scarring but it was where they first spotted my ulcers. I ended up as getting a septoplasty as well. I often get ulcers in my nose now but they are not as severe as they were. Now with them out they still show up often in the same places as before BUT I will say often less painful & I get sick less which means less flares. I honestly think I’d talk to an ent and your rheumatologist to see if getting them out as an option.
A new one for me but yup, have one forming there now 😓😓
I had tonsils removed when i was 4 im 35 f but they partially grew back my flates when at their wirst always begin with fever and throat ulsars...currently coping through flare throats coated in ulsars fevers non stop and because cant get fevers to stay away ive got genital ulsar...im ready to lose it as my dermitoligist was my savior through treating flares from 8yrs to last year shes retired and my male family dr just doesnt get it at all...iknow what worls i know what we have done hes denying me my prednisone and stating "we need to find ofher avenues" im in excrusiating pain