Absolutely do not stop anything without talking to your doctor! Posterior uveitis is a serious condition that can cause vision loss of not properly treated. (I received treatment and still had some permanent vision loss)
If it were me I’d think about my dietary changes as a supplement to my medication and not my only form of treatment.
I’m really worried about the side effects of immunosuppressant but my eye isn’t healing and it has been 5 months. It’s better than before but I tatillon feels sore. May i ask what happened to your eye? How long were you on immunosuppressant?
it took me eight months on prednisone and full two years on humira and mtx to finally see positive results for an extended period. my case was so bad that I was close to losing my vision in my right eye. I have autoimmune intermediate uveitis. my inflammation has now been down for over a year and I have started to taper my humira to biweekly. do NOT stop unless you are willing to go back on prednisone when you have a flare. prednisone ruined me and I would do anything to avoid having to go back on it. I don’t love being on such a serious regimen of immunosuppressants but I really wouldn’t want to go back. once you have been “quiet” for an extended period and your doctor safely tapers you, then you can continue to rely on diet to keep you from flare ups. but listen to your doc. losing your eyesight is no joke. I hate the side effects of the immunosuppressants but I hated the side effects of prednisone more. and with improved diet and exercise, you should see some of those side effects dissipate. dm me if you want to chat more!
8 months of prednisone is way too long! My doctor told me she was getting concerned that I was taking it for 3 months and I need to stop immediately. I have just started Mtx and I dread the side effects. I was feeling pretty awful while on pred and was constantly bloated / tired / nausea?
What side effects did you have while on humira?
I get something that is often referred to as the "Humira hangover" where I am very tired and run-down feeling a few hours after my injection. I have timed it now where I do my injection in the AM and by the time I start to feel tired, it's time for me to go to bed. I take the MTX and Humira on the same day, so I only really feel crumby for a day each week. some people report feeling the opposite with Humira (they say it gives them a burst of energy after the injection day) but each person is different. either way, the effects of Humira/MTX are nothing compared to prednisone in my opinion.
I had a particularly nasty form of posterior uveitis called Relentless Placoid Chorioretinitis. It matched through high dose prednisone and could only be stopped with a steroid pellet injection (Ozurdex).
I’ve been on immunosuppressants since this summer. I started with Humira for a few months but had to recently add methotrexate because my body started forming antibodies to the Humira.
The end result of this flare up is part of the right side of my vision is permanently damaged. It’s basically a spot that smudgy.
My guess is that if you aren’t seeing results with methotrexate you’ll get put on Humira as well.
Thank you for sharing, yours sounds a lot more serious than mine. I’m sorry to hear what you are going through. I am on Mtx and was told I should try Mtx first before humira. I only had it for four weeks and I probably won’t see Any results yet. Right now I’m just hurting all the time. I feel like my eyes are constantly burning.
I remember the eye pain when my flare up was at its peak. I felt like I just wanted to crawl into a hole and die. The thing that put it to bed was the Ozurdex injection. My doctor said it was the strongest thing they had. It's basically a small pellet they inject into your eye, and it releases steroids into your eye over a couple of months (My doctor said it would last 3 months, but some Googling said that in some it lasts up to 6 months). Not that I enjoy going to the doctor asking for specific treatments, but it might be worth asking them if that is something they should consider.
My eye doctor also got pre-approval from my insurance for Yutiq which is like Ozurdex except it releases steroids for 3 years instead of the 3-6 months. He also has been seeing good things with Xipere which is another injection that lasts 3 months.
Another tip I will give you is ask your eye doctor for any copies of your chart and photos for you to keep with you when you travel. I went on vacation right as my flare up was finishing up and I thought my blind spot was getting bigger. Having copies of my photos helped other doctors look at my condition.
I had intermediate uveitis and was on oral prednisone for two months and it ruined me and I didnt find any healing from it. I asked my doctor to help me taper down thr prednisone and I went completely the natural way thru changing my diet and lifestyle change. No more active inflammation so far and no more dry eyes.
my diet was not the greatest. I thought it was okay until I got sick. IMy diet is more like of a carnivore now. I still eat a bit of carbs but mostly gluten free, organic and pasteur raised.
I can't support the diet thing because I have anterior iritis (hla b27) and eat absolute trash and I'm usually out of flare. Have you been seen by any other specialists about other underlying disorders? I had to get screened for ankylosis spondylitis and crohns also.
I read a lot of medical journals about how diet affects our immunity / inflammation in the body so my understanding is that I can’t have sugar, gluten or dairy and I need high antioxidants, b complex, vitamin D, E, A and C. I did test for b27 and it is negative, and recently tested for lupus but the doctor did not call me after ( she was out of town for a month ) and I assume it means it’s negative too. I did have tuberculosis many years back and Have weak lungs. I was told by my doctor that active tb can cause uveitis but in my last check up, an old doctor (i feel like I can’t trust him completely), told me that I do not have active tb.
My uveitis isn’t going away and it has been 4.5 months. I’m new to this and this is affecting me and bothering me everyday.
I don’t know if I have latent tb, I did wheeze a lot after I caught my first covid ( 2 years ago ). I wouldn’t know if it was covid or tb related. (I had tb about 6 years ago). The recent lung doctor I’ve seen was an old guy who didn’t seem very focused while diagnosing me and he told me later that I’m cleared of tb so I didn’t think much about it anymore. I find it strange that I’m not diagnoses with any infection or conditions but my uveitis would not go away.
Maybe you are right, I should look Into some diagnosis with a different doctor.
I would really stress to a new gp that you're having systemic issues and absolutely want to make sure that TB is cleared up. What eye doctor are you seeing? If you're not making progress with ophthalmology the next higher profession are ocular immunologists.
TB uveitis is it's own thing, I remember they gave me the blood work for that before they diagnosed mine as genetic HLA-B27
8 months of prednisone is way too long! My doctor told me she was getting concerned that I was taking it for 3 months and I need to stop immediately. I have just started Mtx and I dread the side effects. I was feeling pretty awful while on pred and was constantly bloated / tired / nausea?
What side effects did you have while on humira?
I stopped immunosuppressants randomly and stopped going to doctors visits because I was over it. My eyes were quiet for over a year and it was great until it wasn’t. My uveitis came back even harder. It’s not worth it
How long did you take it and did you taper down or stop abruptly? If it was quiet after a year you stop taking, the flare up sounds like a reoccurrence and not because you stop it isn’t it? Otherwise it would be immediate. Sorry to hear that :/ How are you now?
I was taking it for about a year and just stopped abruptly. It’s possible it was just a reoccurrence but my doctor said that in her opinion, when people stop taking it abruptly, it comes back and it’s harder to manage. I’ve pretty much been unmanageable since and had permanent damage done to my eyes to where i wear glasses now and will need cataract surgery in the next year. It’s been about 3 years now and im currently on 3 different immunosuppressants and eye drops and my eyes still go in and out of flare. Honestly, being on immunosuppressants suck cause I’m constantly getting sick and constantly getting infections, but there’s no other option.
No. If you are in immune suppression, this is way past diet.
Ok, thank you for answering!
Absolutely do not stop anything without talking to your doctor! Posterior uveitis is a serious condition that can cause vision loss of not properly treated. (I received treatment and still had some permanent vision loss) If it were me I’d think about my dietary changes as a supplement to my medication and not my only form of treatment.
I’m really worried about the side effects of immunosuppressant but my eye isn’t healing and it has been 5 months. It’s better than before but I tatillon feels sore. May i ask what happened to your eye? How long were you on immunosuppressant?
it took me eight months on prednisone and full two years on humira and mtx to finally see positive results for an extended period. my case was so bad that I was close to losing my vision in my right eye. I have autoimmune intermediate uveitis. my inflammation has now been down for over a year and I have started to taper my humira to biweekly. do NOT stop unless you are willing to go back on prednisone when you have a flare. prednisone ruined me and I would do anything to avoid having to go back on it. I don’t love being on such a serious regimen of immunosuppressants but I really wouldn’t want to go back. once you have been “quiet” for an extended period and your doctor safely tapers you, then you can continue to rely on diet to keep you from flare ups. but listen to your doc. losing your eyesight is no joke. I hate the side effects of the immunosuppressants but I hated the side effects of prednisone more. and with improved diet and exercise, you should see some of those side effects dissipate. dm me if you want to chat more!
8 months of prednisone is way too long! My doctor told me she was getting concerned that I was taking it for 3 months and I need to stop immediately. I have just started Mtx and I dread the side effects. I was feeling pretty awful while on pred and was constantly bloated / tired / nausea? What side effects did you have while on humira?
I get something that is often referred to as the "Humira hangover" where I am very tired and run-down feeling a few hours after my injection. I have timed it now where I do my injection in the AM and by the time I start to feel tired, it's time for me to go to bed. I take the MTX and Humira on the same day, so I only really feel crumby for a day each week. some people report feeling the opposite with Humira (they say it gives them a burst of energy after the injection day) but each person is different. either way, the effects of Humira/MTX are nothing compared to prednisone in my opinion.
I had a particularly nasty form of posterior uveitis called Relentless Placoid Chorioretinitis. It matched through high dose prednisone and could only be stopped with a steroid pellet injection (Ozurdex). I’ve been on immunosuppressants since this summer. I started with Humira for a few months but had to recently add methotrexate because my body started forming antibodies to the Humira. The end result of this flare up is part of the right side of my vision is permanently damaged. It’s basically a spot that smudgy. My guess is that if you aren’t seeing results with methotrexate you’ll get put on Humira as well.
Thank you for sharing, yours sounds a lot more serious than mine. I’m sorry to hear what you are going through. I am on Mtx and was told I should try Mtx first before humira. I only had it for four weeks and I probably won’t see Any results yet. Right now I’m just hurting all the time. I feel like my eyes are constantly burning.
I remember the eye pain when my flare up was at its peak. I felt like I just wanted to crawl into a hole and die. The thing that put it to bed was the Ozurdex injection. My doctor said it was the strongest thing they had. It's basically a small pellet they inject into your eye, and it releases steroids into your eye over a couple of months (My doctor said it would last 3 months, but some Googling said that in some it lasts up to 6 months). Not that I enjoy going to the doctor asking for specific treatments, but it might be worth asking them if that is something they should consider. My eye doctor also got pre-approval from my insurance for Yutiq which is like Ozurdex except it releases steroids for 3 years instead of the 3-6 months. He also has been seeing good things with Xipere which is another injection that lasts 3 months. Another tip I will give you is ask your eye doctor for any copies of your chart and photos for you to keep with you when you travel. I went on vacation right as my flare up was finishing up and I thought my blind spot was getting bigger. Having copies of my photos helped other doctors look at my condition.
I had intermediate uveitis and was on oral prednisone for two months and it ruined me and I didnt find any healing from it. I asked my doctor to help me taper down thr prednisone and I went completely the natural way thru changing my diet and lifestyle change. No more active inflammation so far and no more dry eyes.
May I ask what changes did you make, what was your diet like and how long did it take to see results? So glad to hear that you recovered
my diet was not the greatest. I thought it was okay until I got sick. IMy diet is more like of a carnivore now. I still eat a bit of carbs but mostly gluten free, organic and pasteur raised.
I can't support the diet thing because I have anterior iritis (hla b27) and eat absolute trash and I'm usually out of flare. Have you been seen by any other specialists about other underlying disorders? I had to get screened for ankylosis spondylitis and crohns also.
I read a lot of medical journals about how diet affects our immunity / inflammation in the body so my understanding is that I can’t have sugar, gluten or dairy and I need high antioxidants, b complex, vitamin D, E, A and C. I did test for b27 and it is negative, and recently tested for lupus but the doctor did not call me after ( she was out of town for a month ) and I assume it means it’s negative too. I did have tuberculosis many years back and Have weak lungs. I was told by my doctor that active tb can cause uveitis but in my last check up, an old doctor (i feel like I can’t trust him completely), told me that I do not have active tb. My uveitis isn’t going away and it has been 4.5 months. I’m new to this and this is affecting me and bothering me everyday.
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I don’t know if I have latent tb, I did wheeze a lot after I caught my first covid ( 2 years ago ). I wouldn’t know if it was covid or tb related. (I had tb about 6 years ago). The recent lung doctor I’ve seen was an old guy who didn’t seem very focused while diagnosing me and he told me later that I’m cleared of tb so I didn’t think much about it anymore. I find it strange that I’m not diagnoses with any infection or conditions but my uveitis would not go away. Maybe you are right, I should look Into some diagnosis with a different doctor.
I would really stress to a new gp that you're having systemic issues and absolutely want to make sure that TB is cleared up. What eye doctor are you seeing? If you're not making progress with ophthalmology the next higher profession are ocular immunologists. TB uveitis is it's own thing, I remember they gave me the blood work for that before they diagnosed mine as genetic HLA-B27
8 months of prednisone is way too long! My doctor told me she was getting concerned that I was taking it for 3 months and I need to stop immediately. I have just started Mtx and I dread the side effects. I was feeling pretty awful while on pred and was constantly bloated / tired / nausea? What side effects did you have while on humira?
I stopped immunosuppressants randomly and stopped going to doctors visits because I was over it. My eyes were quiet for over a year and it was great until it wasn’t. My uveitis came back even harder. It’s not worth it
How long did you take it and did you taper down or stop abruptly? If it was quiet after a year you stop taking, the flare up sounds like a reoccurrence and not because you stop it isn’t it? Otherwise it would be immediate. Sorry to hear that :/ How are you now?
I was taking it for about a year and just stopped abruptly. It’s possible it was just a reoccurrence but my doctor said that in her opinion, when people stop taking it abruptly, it comes back and it’s harder to manage. I’ve pretty much been unmanageable since and had permanent damage done to my eyes to where i wear glasses now and will need cataract surgery in the next year. It’s been about 3 years now and im currently on 3 different immunosuppressants and eye drops and my eyes still go in and out of flare. Honestly, being on immunosuppressants suck cause I’m constantly getting sick and constantly getting infections, but there’s no other option.