Autoimmune Diseases

[HEATHEN]

Anyone here suffer from autoimmune disease?


For those that don't know autoimmune diseases include, Lupus, Ulcerative Colitis, Celiacs Disease, Rheumatoid Arthritis, Sjrogen's syndrome, Multiple Sclerosis, etc etc etc.



Recently diagnosed with seropositive rheumatoid arthritis. My father had ulcerative colitis. So I likely inherited the predisposition. Didn't know a lot about RA or autoimmune diseases in general until my own diagnosis. Had no idea RA was treated with lifelong chemotherapy (MTX as well as other DMARDs) and/or biologics (think of those humira commercials).


I just wanted to see if any other NTers are facing the same or similar battles. Seems like once you're immunocompromised it's like opening pandora's box. Often when a person has one form of autoimmune disease, they're susceptible to others as well as co-morbidities such as atherosclerosis, heart disease, cancer, etc. So I'm just trying to gain some insight beyond dealing with my various physicians.

 

[anomolie]

I don't have an autoimmune disease. I am a therapist and primarily have treated people with MS, MG, rheumatoid arthritis, even early stages of ALS..etc. I have the upmost empathy for people going through these disorders.

 

[Baby Newport]

Yeah my grandma does. And RA. **** is rough. Medicine dont help but weed does

 

[HEATHEN]

Yeah my grandma does. And RA. **** is rough. Medicine dont help but weed does

Yeah the bud helps. I had stopped smoking for a a couple years but since I've been dealing with this I decided to start smoking instead of turning to NSAIDs.

Though no matter how much I resist, I'll have to go on methotrexate or a similar DMARD and possibly a NSAID for pain management.


Sadly your grandma isn't alone, medicines don't work for a lot of people with RA. They go through the gauntlet and nothing works.

 

[eracism]

I have psoriasis, which is an autoimmune disorder. I have some digestive problems as well. Hopefully I don't get anything serious later. I ain't going out like that. Lupus killed my man Dilla. His deteriorated appearance before his death was scary. I try to eat a lot of anti-inflammatory foods.

Fight the good fight, bro.

 

[HEATHEN]

I have psoriasis, which is an autoimmune disorder. I have some digestive problems as well. Hopefully I don't get anything serious later. I ain't going out like that. Lupus killed my man Dilla. His deteriorated appearance before his death was scary. I try to eat a lot of anti-inflammatory foods.

Fight the good fight, bro.

I'm sorry bro. Psoriasis much like RA doesn't get much attention. It's a serious disease however which can lead to comorbidities.


Diet is a huge key. I already eat pretty healthy. Organic everything except for when I eat out, lean meats, not a lot of red meat, only whole wheat/whole grains, lots of fruit, etc but it seems like I'll have to tinker with my diet even more.


Hearing that nightshades need to be reduced. Which means no peppers or tomatoes, I love hot sauce and marinara.


Thank you for sharing bro. I really do appreciate it.

 

[je ne sais quoi]

Look into fasting.

 

[HEATHEN]

Look into fasting.

Diet is important. Gut health is important. I already practice intermittent fasting quite regularly. I must point out that diet cannot reverse this. It cannot turn off my overactive immune system that's destroying my body. This is the nature of chronic, systemic autoimmune disease. The term rheumatoid arthritis itself is a misnomer. What I have is rheumatoid disease and that's not hyperbole.


Diet can help reduce inflammation which in turn can help slow damage but this is what i have. I may go into remission but with remission it can flare up at anytime.


This is my lot.

 

[ears1351]

Sorry to hear about your diagnosis, man! But you'll get through it! I have Crohn's disease; I've had it for about 10 years. I self-administer a Humira shot every week, which keeps my symptoms in check the majority of the time. I've been hospitalized a few times, but mostly my flareups are caused by stress. Additionally, Humira suppresses your immune system, so in the winter, I get sick quite often with respiratory infections, strep throat and pretty severe cases of the flu. That being said, exercise plays a huge role in maintaining my health; I'm not sure if it's because it relieves stress (mostly all my flareups are stress induced), or if it helps due to other health reasons. Additionally, as previously mentioned, diet can play a huge role (I eat pretty terribly), and not drinking a lot of alcohol will also help. If you're into more holistic methods, yoga also helps me a great deal; it calms me and eases some of the inflammation in my joints when I'm having flare ups. Also, whatever you do, try to stay off of steroids by any means necessary; they break your body down in the long-run and make you feel terrible due to all of the side effects. Hope this helps, and I'm wishing you the best!

 

[turbospartan]

One of my good friends is currently battling with an autoimmune disease.  One day she had a seizure and they took her to the hospital.  Doctors didn't know what was going on, just figured it was a pysch issue, when it wasn't.  Crazy stuff.  She was basically strapped down to the hospital bed and completely out of it, for nearly a month.  Finally they got her to a new hospital and on some new meds, and she's making the slow recovery back to being "normal".   

Her situation is very similar to what the book "Brain on Fire" is about. 

 

[trueprada]

been hearing of these alot more as of late 

 

[HEATHEN]

Sorry to hear about your diagnosis, man! But you'll get through it! I have Crohn's disease; I've had it for about 10 years. I self-administer a Humira shot every week, which keeps my symptoms in check the majority of the time. I've been hospitalized a few times, but mostly my flareups are caused by stress. Additionally, Humira suppresses your immune system, so in the winter, I get sick quite often with respiratory infections, strep throat and pretty severe cases of the flu. That being said, exercise plays a huge role in maintaining my health; I'm not sure if it's because it relieves stress (mostly all my flareups are stress induced), or if it helps due to other health reasons. Additionally, as previously mentioned, diet can play a huge role (I eat pretty terribly), and not drinking a lot of alcohol will also help. If you're into more holistic methods, yoga also helps me a great deal; it calms me and eases some of the inflammation in my joints when I'm having flare ups. Also, whatever you do, try to stay off of steroids by any means necessary; they break your body down in the long-run and make you feel terrible due to all of the side effects. Hope this helps, and I'm wishing you the best!

Thank you for sharing. These types of personal experiences give me some insight.

Def going to try to avoid the prednisone though if I may ask, under what circumstances would one have to be in that it becomes necessary?

 

[Belgium]

Anyone here suffer from autoimmune disease?


For those that don't know autoimmune diseases include, Lupus, Ulcerative Colitis, Celiacs Disease, Rheumatoid Arthritis, Sjrogen's syndrome, Multiple Sclerosis, etc etc etc.



Recently diagnosed with seropositive rheumatoid arthritis. My father had ulcerative colitis. So I likely inherited the predisposition. Didn't know a lot about RA or autoimmune diseases in general until my own diagnosis. Had no idea RA was treated with lifelong chemotherapy (MTX as well as other DMARDs) and/or biologics (think of those humira commercials).


I just wanted to see if any other NTers are facing the same or similar battles. Seems like once you're immunocompromised it's like opening pandora's box. Often when a person has one form of autoimmune disease, they're susceptible to others as well as co-morbidities such as atherosclerosis, heart disease, cancer, etc. So I'm just trying to gain some insight beyond dealing with my various physicians.

Sorry to hear about the diagnosis man; best wishes. I don't have an auto-immune disorder, at least not that I know of as I'm still without a diagnosis after almost 4 years, but my condition is chronic as well and involves a lot of chronic pain in my legs. So we share some things.

The most important recommendation I would make is to talk about your condition, whether it's in real life or online, preferably the first or both. That always helps. And if you feel like you're spiraling towards a bad place mentally, don't be afraid or ashamed to talk to a psychologist. There's no shame in that. That's a mistake I made during the onset of my disease when it became apparent that I could no longer handle the physical activity required to continue my nursing education, even just attending the theoretical classes. Rather than talking about it I couldn't really come to grips with it and I didn't feel like talking about it despite repeated attempts from friends and family.

Eventually it got to the point where I started eating less, ignored my friends at times, ...

My psychologist helped me come to grips with the situation and I became a much stronger man as a result. Mentally speaking, as my conditon continued to decline after that. I have occasionally gone back to the psychologist the past 2 years but it's more of a reminder to keep me on the right path than a necessity. To describe myself as happy but be a stretch considering my situation but I don't really experience negativity anymore. Learning to accept my situation and be open about it was essential to that.

Also, I don't know exactly what your physical limitations are but it's important to have something to keep you busy. Especially on those "bad days" when your symptoms are worse than usual. It can be anything and you'd be surprised how much it can help you in your daily life. My mobility is quite limited so I took up gardening a while back. I have other things to keep me busy and entertained at home but I found gardening surprisingly pleasant, almost therapeutic in a way. It's very simple but I look at it as creating something of your own that you can be proud of later. I can plant my vegetables in the backyard and eat them when they grow, or just see my plants grow in general. Getting a sense of reward and satisfaction in some way is also essential in improving your quality of life with a chronic disease. As mentioned before, that sense of reward can come from pretty much anything, even little things that you may have deemed insignificant before. Gardening is really not something I imagined myself doing to say the least 

 

 

[HEATHEN]

Sorry to hear about the diagnosis man; best wishes. I don't have an auto-immune disorder, at least not that I know of as I'm still without a diagnosis after almost 4 years, but my condition is chronic as well and involves a lot of chronic pain in my legs. So we share some things.
The most important recommendation I would make is to talk about your condition, whether it's in real life or online, preferably the first or both. That always helps. And if you feel like you're spiraling towards a bad place mentally, don't be afraid or ashamed to talk to a psychologist. There's no shame in that. That's a mistake I made during the onset of my disease when it became apparent that I could no longer handle the physical activity required to continue my nursing education, even just attending the theoretical classes. Rather than talking about it I couldn't really come to grips with it and I didn't feel like talking about it despite repeated attempts from friends and family.
Eventually it got to the point where I started eating less, ignored my friends at times, ...
My psychologist helped me come to grips with the situation and I became a much stronger man as a result. Mentally speaking, as my conditon continued to decline after that. I have occasionally gone back to the psychologist the past 2 years but it's more of a reminder to keep me on the right path than a necessity. To describe myself as happy but be a stretch considering my situation but I don't really experience negativity anymore. Learning to accept my situation and be open about it was essential to that.

Also, I don't know exactly what your physical limitations are but it's important to have something to keep you busy. Especially on those "bad days" when your symptoms are worse than usual. It can be anything and you'd be surprised how much it can help you in your daily life. My mobility is quite limited so I took up gardening a while back. I have other things to keep me busy and entertained at home but I found gardening surprisingly pleasant, almost therapeutic in a way. It's very simple but I look at it as creating something of your own that you can be proud of later. I can plant my vegetables in the backyard and eat them when they grow, or just see my plants grow in general. Getting a sense of reward and satisfaction in some way is also essential in improving your quality of life with a chronic disease. As mentioned before, that sense of reward can come from pretty much anything, even little things that you may have deemed insignificant before. Gardening is really not something I imagined myself doing to say the least   

Thanks bro, I appreciate you chiming in. Psychologically it def has taken a toll. Some days I'm in more pain than others but for the most part I can still function. It's just harder, everything is harder and painful. So I just worry about the future for the most part. Worry if one day I'll be resigned to a wheel chair and worry about my kids, I'm terrified about them inheriting it.

I'm going to fight this tooth and nail. If I become disabled it won't be because I just wasted away. It'll because I lived life on my terms and didn't set limitations for myself. I can get used to chronic pain, I cannot get used to being off my feet willingly. **** all that.

I'll be on medication soon so, I suspect there will be some adjustment period with that. Taking it a day at a time.

 

[3900stabler]

I was diagnosed with rheumatoid arthritis in my right ankle at 21. i have ankle the age of a 70 year old.I take glucosamine chondroitin for flexible joints and cartilage repair. Some days are better than others. Summertime is the worst. I live in Michigan and the humidity is tough this time of year. Funny thing is when it rains I feel really good with no pain or so bad I don't feel like walking. My doctor said I should move to Arizona or some part of the southwest. I think he might be right.

 

[ASE]

diet and excercise have been the two biggest factors for me. The toughest part is pushing your self when you're feeling sick.

 

[HEATHEN]

I was diagnosed with rheumatoid arthritis in my right ankle at 21. i have ankle the age of a 70 year old.I take glucosamine chondroitin for flexible joints and cartilage repair. Some days are better than others. Summertime is the worst. I live in Michigan and the humidity is tough this time of year. Funny thing is when it rains I feel really good with no pain or so bad I don't feel like walking. My doctor said I should move to Arizona or some part of the southwest. I think he might be right.

Are you sure that what you're suffering from is rheumatoid arthritis and not osteoarthritis? Because rheumatoid arthritis doesn't affect a single joint, it's systemic and afflicts multiple joints (as well as organs in servere cases) at the same time. Also the telltale sign of rheumatoid arthritis is the symmetry of joint pain.

When my right ankle hurts, my left one does. When my right toe is stiff and swollen so is my left one. If there isn't symmetry, then i know that eventually, in a day or two, as soon as my right knee starts feeling okay my left one will flare.

It's like a never ending game of musical chairs for my joints. What's going to hurt today?


The cold does hurt though, I live in Arizona actually but I love pumping up the AC at all times but lately my body is just drawn to sitting under the sun. It helps.


Did you get labs done? What was your rheumatoid factor? Normal range is under 14. I'm at 63.

 

[HEATHEN]

diet and excercise have been the two biggest factors for me. The toughest part is pushing your self when you're feeling sick.

Yeah physical is def half the battle for sure. Mental is the other half.


I feel so self-conscious now when I get up gingerly in front of others. They don't realize that's just how it is, until my joints are "warmed up". It also must be weird for people to see me limping one day and then sprinting up stairs the other. They don't know that I'm going to pay for that later. Anytime I push my body I pay for it in pain.

 

[metsn13]

SneakerHeathen,

Sorry to hear about your recent diagnosis, but better to have the diagnosis now then to delay treatment. I'm a physician working in the field of dermatology and I prescribe biologic agents for various skin disorders on a regular basis. Biggest advice to you is to listen to your rheumatologist please! I understand many in here as well as the various internet RA forums will want to give you their personal experience advice but please realize that the majority of these individuals have no medical background or clinical experience with this devastating disease. End stage RA is an awful disease with patients often disfigured and having undergone multiple joint replacement surgeries because of delay in care or poor follow up. I understand the idea of holistic methods as mentioned above like diet and exercise, but recognize this disease is at its heart an inflammatory disorder that results in the destruction of joints and bones that if not treated appropriately and aggressively may lead to terrible consequences.

Fortunately the pipeline for effective medications is evolving by the day. The old immunosuppressants such as prednisone and methotrexate are becoming out of favor in rheumatology and dermatology because of their terrible side effect profile that may result in liver disease and osteoporosis. The biologic agents such as the tumor necrosis alpha inhibitors Humira and Enbrel are safe and effective if monitored closely and effectively. There is a new class of oral medication called the janus kinase inhibitors that has a more favorable side effect profile than methotrexate. There are also several stage 2 and 3 clinical trials underway researching various interleukin pathway inhibitors for RA.

Please visit reputable patient websites such as mayoclinic.org or webmd.com for accurate patient focused information and stay off the forums which may lead you down the wrong path. Realize that your rheumatologist has spent 4years in college + 4years in medical school + 3years in residency + 2years in fellowship (13 years) studying and preparing to treat you and help your condition. Please listen to them and if you doubt their capabilities seek a second opinion at a larger tertiary care center such as a university medical center specializing in RA and clinical research.

Best of luck

 

[avthegod]

just gonna share some recent experiences with this. 

i dated a female for a very long time and her mother was diagnosed with MS. 

one of the most wonderful ladys ive met, she was a sweetheart. 

as time progressed i noticed a change in her though she went from being a very healthy woman to just getting a bit worse as time went by. 

(me and her daughter knew each other since very early teens were now well into adulthood)

ill leave this here for now and come back to it. 

a close friend of mine had lupus, she recently (mothers day) passed away due to it, she was very young. 

her cousin was in my age group she was about 4 years younger

the girl who passed didnt really take care of herself, she wasnt taking her prescribed medication, her diet was all messed up

smoking and drinking excessively too. the mother of my ex slipped into a bit of a depression due to life's curve balls and she went down into a slipper slope. 

she caught herself but any damage build up will show

i say that to say this, no matter how messed up this may be to be diagnosed with something that serious... you have to make sure to take care of yourself the best you can. 

stay on top of everything that deals with your health. 

seek a better diet

seek mental health advice

stay around people who are positive in support and if you dont have anyone like that around... seek them

no matter how sh!!ty things get it can always be worse

live for something, make your impact. 

most of all though the more awareness people have to these ailments the more understanding that comes in all aspects. 

laws of attractions is one hell of a thing.

 

[ears1351]

Thank you for sharing. These types of personal experiences give me some insight.

Def going to try to avoid the prednisone though if I may ask, under what circumstances would one have to be in that it becomes necessary?

Hey, my dude, hope you're doing well! I was prescribed prednisone when my inflammation and infections became severe too fast; prednisone reduces these things very quickly, and additionally, I had built up a pretty strong resistance to my humira and my immune system was destroyed as well. The prednisone did stop the infections and ease the inflammation, but it gave me moon face, I had an extreme amount of muscle wasting, I couldn't sleep more than 2 hours every night, my hair fell out and I had some acne (which I normally never have); all due to the prednisone use and I was on a tapered dose.

 

[getback]

Yeah the bud helps. I had stopped smoking for a a couple years but since I've been dealing with this I decided to start smoking instead of turning to NSAIDs.

Smart move. NSAIDS will ruin your insides.

 

[HEATHEN]

SneakerHeathen,

Sorry to hear about your recent diagnosis, but better to have the diagnosis now then to delay treatment. I'm a physician working in the field of dermatology and I prescribe biologic agents for various skin disorders on a regular basis. Biggest advice to you is to listen to your rheumatologist please! I understand many in here as well as the various internet RA forums will want to give you their personal experience advice but please realize that the majority of these individuals have no medical background or clinical experience with this devastating disease. End stage RA is an awful disease with patients often disfigured and having undergone multiple joint replacement surgeries because of delay in care or poor follow up. I understand the idea of holistic methods as mentioned above like diet and exercise, but recognize this disease is at its heart an inflammatory disorder that results in the destruction of joints and bones that if not treated appropriately and aggressively may lead to terrible consequences.

Fortunately the pipeline for effective medications is evolving by the day. The old immunosuppressants such as prednisone and methotrexate are becoming out of favor in rheumatology and dermatology because of their terrible side effect profile that may result in liver disease and osteoporosis. The biologic agents such as the tumor necrosis alpha inhibitors Humira and Enbrel are safe and effective if monitored closely and effectively. There is a new class of oral medication called the janus kinase inhibitors that has a more favorable side effect profile than methotrexate. There are also several stage 2 and 3 clinical trials underway researching various interleukin pathway inhibitors for RA.

Please visit reputable patient websites such as mayoclinic.org or webmd.com for accurate patient focused information and stay off the forums which may lead you down the wrong path. Realize that your rheumatologist has spent 4years in college + 4years in medical school + 3years in residency + 2years in fellowship (13 years) studying and preparing to treat you and help your condition. Please listen to them and if you doubt their capabilities seek a second opinion at a larger tertiary care center such as a university medical center specializing in RA and clinical research.

Best of luck

I wasn't looking for holistic remedies. Rather this thread was created so I could gain some insight from those who have been battling RA or other autoimmune diseases. Just helps me get a better understanding of what I'm in for.


I've already done a lot of research, consulted my doctors, etc. I've already resigned myself to the fact that I have to undergo pharmacological treatment.


Regarding biologics. I'm ready to take them but I'm not exactly thrilled to do so. This is why...

View media item 2453259View media item 2453260View media item 2453261

Not to mention how expensive it all is.










.

 

[HEATHEN]

Hey, my dude, hope you're doing well! I was prescribed prednisone when my inflammation and infections became severe too fast; prednisone reduces these things very quickly, and additionally, I had built up a pretty strong resistance to my humira and my immune system was destroyed as well. The prednisone did stop the infections and ease the inflammation, but it gave me moon face, I had an extreme amount of muscle wasting, I couldn't sleep more than 2 hours every night, my hair fell out and I had some acne (which I normally never have); all due to the prednisone use and I was on a tapered dose.

Well damn...

I also heard prednisone can give folks rage and munchies. Any experience with that?

 

[HEATHEN]

just gonna share some recent experiences with this. 

i dated a female for a very long time and her mother was diagnosed with MS. 
one of the most wonderful ladys ive met, she was a sweetheart. 
as time progressed i noticed a change in her though she went from being a very healthy woman to just getting a bit worse as time went by. 
(me and her daughter knew each other since very early teens were now well into adulthood)

ill leave this here for now and come back to it. 

a close friend of mine had lupus, she recently (mothers day) passed away due to it, she was very young. 
her cousin was in my age group she was about 4 years younger

the girl who passed didnt really take care of herself, she wasnt taking her prescribed medication, her diet was all messed up
smoking and drinking excessively too. the mother of my ex slipped into a bit of a depression due to life's curve balls and she went down into a slipper slope. 
she caught herself but any damage build up will show

i say that to say this, no matter how messed up this may be to be diagnosed with something that serious... you have to make sure to take care of yourself the best you can. 

stay on top of everything that deals with your health. 
seek a better diet
seek mental health advice
stay around people who are positive in support and if you dont have anyone like that around... seek them
no matter how sh!!ty things get it can always be worse
live for something, make your impact. 

most of all though the more awareness people have to these ailments the more understanding that comes in all aspects. 

laws of attractions is one hell of a thing.

Thank you bro. Trying to stay positive. It's a frustrating feeling when your body doesn't comply to your mind's intent. It's weird, it's still new, it's something I'm getting used to.