Auto-Immune Disease(s): A Thread

[TurkeyChew 383]

Idiopathic Auto-immune diseases have reared their heads in my social circle recently and I thought it might be beneficial and useful to have a place to discuss them here. One of the most mystifying things is they seem to be out of the current grasp of modern medical/science understanding when it comes to what causes them (hence, idiopathic) but also depending on the disease, how to successfully treat them. It is fascinating that this class of disease seems to be pretty prolific (could just be a confirmation bias/social bias because of my age and social group) but also not well understood.

I'm super curious about MS as I have a friend whose wife just was diagnosed as well as a friend at work and also any more rare ones and hearing about how you came to diagnose and what you are doing to (hopefully successfully) treat.

For my part, my doctor doesn't seem to have a definitive answer to what has caused my arthritis. I have drug my feet on taking the pharma approach (biologics, immuno-suppresent meds) but might be willing to in the next few months if other holistic therapy doesn't help (and it hasn't yet). I just don't want to risk joint destruction.

I'll hang up and listen if anyone wants to share. I'll volunteer @Sbbruin to kick the conversation off and get the thread rolling because he's shared small tidbits in the past.

Edited March 22, 2022 by TurkeyChew

[Sbbruin 21898]

Well, as someone with multiple auto-immune conditions- ankylosing spondylitis, ulcerative colitis, and psoriasis- I can tell you that biologics are miracle drugs and have completely saved me from what would otherwise have been a slow, steady, but certain decline in mobility and discomfort.  Yes, they suppress the immune system, but only moderately.  And you get regular blood tests to monitor any changes in your bodies normal functions.  Think of autoimmune conditions as your immune systems sending in the troops to fight something that isn't there.  So it fights whatever is there, and that is healthy tissue.  For me that is the disks and cartilage in my sine and hips (as well as my colon, but my UC is super mild), for rheumatoid arthritis it's your wrist and finger joints.

For decades, drugs (specifically NSAIDS) only treated the symptoms.  But at that point the trigger mechanisms causing the inflammation were already in full swing.  In addition to cardiac and liver complications, these drugs were just trying to stem the tide.  Along come the biologics (in my case Remicade), and they target the triggers to the inflammation.  They're known as TNF inhibitors.  So imagine it as starting way further up the "inflammation cascade".   So your immune system never sends the soldiers to battle.  Thus eliminating the damage caused by swelling and subsequent deswelling of your joints.  That is where the damage occurs, in the "yo-yoing" of inflammation.  

I have been on remicade for over 15 years.  I honestly don't even think about any of my conditions because from a symptomatic standpoint, they don't exist.  Long story short, if you have rheumatoid arthritis, which is auto-immune related, go the biologic route.  You can't stop the progression any other way.  

[TurkeyChew 383]

4 hours ago, Sbbruin said:

Well, as someone with multiple auto-immune conditions- ankylosing spondylitis, ulcerative colitis, and psoriasis- I can tell you that biologics are miracle drugs and have completely saved me from what would otherwise have been a slow, steady, but certain decline in mobility and discomfort.  Yes, they suppress the immune system, but only moderately.  And you get regular blood tests to monitor any changes in your bodies normal functions.  Think of autoimmune conditions as your immune systems sending in the troops to fight something that isn't there.  So it fights whatever is there, and that is healthy tissue.  For me that is the disks and cartilage in my sine and hips (as well as my colon, but my UC is super mild), for rheumatoid arthritis it's your wrist and finger joints.

For decades, drugs (specifically NSAIDS) only treated the symptoms.  But at that point the trigger mechanisms causing the inflammation were already in full swing.  In addition to cardiac and liver complications, these drugs were just trying to stem the tide.  Along come the biologics (in my case Remicade), and they target the triggers to the inflammation.  They're known as TNF inhibitors.  So imagine it as starting way further up the "inflammation cascade".   So your immune system never sends the soldiers to battle.  Thus eliminating the damage caused by swelling and subsequent deswelling of your joints.  That is where the damage occurs, in the "yo-yoing" of inflammation.  

I have been on remicade for over 15 years.  I honestly don't even think about any of my conditions because from a symptomatic standpoint, they don't exist.  Long story short, if you have rheumatoid arthritis, which is auto-immune related, go the biologic route.  You can't stop the progression any other way.  

Thanks for sharing big dog. 

What was your diagnosis journey like? Any head-fakes and false-diagnosis due to symptoms seeming like something else and auto-immune issues being difficult to diagnose?

[Sbbruin 21898]

1 hour ago, TurkeyChew said:

Thanks for sharing big dog. 

What was your diagnosis journey like? Any head-fakes and false-diagnosis due to symptoms seeming like something else and auto-immune issues being difficult to diagnose?

Ha, it was a long one.  I was misdiagnosed 9 ways to Sunday.  90% of AS sufferers test positive for the antigen HLA-B27.  I was one of the 10% who didn’t.  So the rheumatologist I was seeing completely discounted AS, said I had RA, despite no hand discomfort or swelling at all.  Moved to another area and found a new, and highly regarded, rheumatologist who took x-rays, went through my list of symptoms (hip pain and swelling, spinal pain and swelling, iritis flare ups, etc, (basically if there were 10 indicators of AS, with HLA-B27 positive being one, I had 9) and said “you have AS, no question.”   Stared on Bextra, an Cox-2 inhibitor NSAID, then it was determined to cause heart attacks, so switched to Vioxx, then the same thing.  Remicade had just started being prescribed for AS, and he suggested I start on that.  And it’s been smooth sailing ever since.

[TurkeyChew 383]

1 minute ago, Sbbruin said:

Ha, it was a long one.  I was misdiagnosed 9 ways to Sunday.  90% of AS sufferers test positive for the antigen HLA-B27.  I was one of the 10% who didn’t.  So the rheumatologist I was seeing completely discounted AS, said I had RA, despite no hand discomfort or swelling at all.  Moved to another area and found a new, and highly regarded, rheumatologist who took x-rays, went through my list of symptoms (hip pain and swelling, spinal pain and swelling, iritis flare ups, etc, (basically if there were 10 indicators of AS, with HLA-B27 positive being one, I had 9) and said “you have AS, no question.”   Stared on Bextra, an Cox-2 inhibitor NSAID, then it was determined to cause heart attacks, so switched to Vioxx, then the same thing.  Remicade had just started being prescribed for AS, and he suggested I start on that.  And it’s been smooth sailing ever since.

Remicade is an IV transfusion right?

In the bold you highlight one of the concerns with Auto-Immune therapy: all the therapies seem to have extreme side-effects which are very hard on the body for those unlucky short straw drawers.

[Sbbruin 21898]

13 minutes ago, TurkeyChew said:

Remicade is an IV transfusion right?

In the bold you highlight one of the concerns with Auto-Immune therapy: all the therapies seem to have extreme side-effects which are very hard on the body for those unlucky short straw drawers.

Yes, every 7 weeks an infusion.  No, the side eff3cts of Cox 2 NSAIDs are bad.  Celebrex is still being used to treat.  But the biologics seem to be less impactful.  There is a slight increase in lymphoma, but letting RA progress will fuck your quality of life up bad.  But talk to real, good rheumatologists.  No Facebook, or even surly, research.  These drugs have been widely used for a long time and the data is there.  
 

oh, and if you want to start a biologic treatment, Remicade, Enbrel, Humira, etc- you better have insurance.  Shit is EXPENSIVE.

[Zepol87 9195]

About a decade ago I flew from Mexico to start a new job back in Dallas. Same day as landing my feet swelled up huge I hate to cut my boots off, freaked out but said fuck I have to start tomorrow. Went to start the day and and couldn't walk by 1030am, they called an ambulance it was a whole ass thing. Went to doctors hospital in Dallas because my family says you only Baylor to die (it's been true the late 10 years or so). They didn't know what I had I was in lockdown in a room because I had just came from Mexico and they kept checking a bunch of shit that had nothing to do with the holes in my legs. Long ass time later a person in a white coat, who is on facetime with some Dr person in Chicago checks on me and they talk about Dr shit and the Dr on the freaking FaceTime says he has  henoch-schonlein purpura, I just had a case. They check me out and yea that's what it was  All I know is that they told me it was a pretty rare auto immune disease but I had legit holes in my leg for a long time and they bled alot. Still have the scars but havent had it come back.

Apologies I am drunk and haven't talked about in long time so probably rambling. 

Edited March 23, 2022 by Zepol87
Apologies I now see it is a autoimmune disorder not disease.

[deadshank 24653]

Sorry you mofos are battling this.  My nephew from wife’s side has a weird AI disorder which comes and goes.  When active he is severely debilitated.  It’s really hard on him.  
 

My sister is ate up with lupus and Raynaud’s.   She really struggles, hangs in there and slugs it out everyday.  
 

You boys hang tough. 

[Judge Roybeanbag 11821]

Me and at least another person on this board have what is called Hereditary Angioedema.  It's a bitch.  30% mortality rate before current treatment.   Now I can live normally, but not without a drug that costs $40K per month.  Good times.

https://www.poweredbyc2.com/wp-content/uploads/2020/04/10-Most-Expensive-Drugs_2019_FINAL.pdf

 

God bless big Pharma.  

Edited March 23, 2022 by Judge Roybeanbag

[Sbbruin 21898]

Yeah, some of these drugs are crazy.  Remicade would be about $9,000/treatment (400 ml) if not for insurance.  But Janssen has the threat of generics looming so they have all sorts of coverage options.  

Honestly it is one of the things that would potentially keep me from retiring on a beach in Mex.

[TurkeyChew 383]

So if you don't have good insurance, if you have an autoimmune disease, you are hosed?

Also crazy to see 30% mortality rate before treatment. Most AI stuff I see is more limiting/debilitating versus deadly.

[Sbbruin 21898]

2 minutes ago, TurkeyChew said:

So if you don't have good insurance, if you have an autoimmune disease, you are hosed?

 

First time in America?  

[Judge Roybeanbag 11821]

5 minutes ago, TurkeyChew said:

So if you don't have good insurance, if you have an autoimmune disease, you are hosed?

Also crazy to see 30% mortality rate before treatment. Most AI stuff I see is more limiting/debilitating versus deadly.

If your airway swells shut, which happens, or your brain swells, yeah you are fucked.   Fortunately that hasn't been the case with me. But getting back to the original point, insurance has been, well, let's just say interesting. If this cost had been spread out over the entirety of America, it's not so much.

Then you have the whole thing where, I didn't "choose" to have this.  It's not like type 2 diabeetus where you eat yourself into it.   I was born with it.  

Edited March 23, 2022 by Judge Roybeanbag

[TurkeyChew 383]

2 minutes ago, Judge Roybeanbag said:

If your airway swells shut, which happens, or your brain swells, yeah you are fucked.   Fortunately that hasn't been the case with me. But getting back to the original point, insurance has been, well, let's just say interesting. If this cost had been spread out over the entirety of America, it's not so much.

Then you have the whole thing where, I didn't "choose" to have this.  It's not like type 2 diabeetus where you eat yourself into it.   I was born with it.  

Where is the research and journey to a "cure" with this? Is the $200k medicine or whatever it is, the leading edge therapy we have? Any walks or 10k's or race for the cures? 

Which leads to a question: I know MS awareness week was last week and there are bike rides for that-- do you guys actively get involved in your own AI communities or events like that?

[Judge Roybeanbag 11821]

it affects so few people there aren't going to be March of Dimes type events for it.  But it has opened my eyes to the fact that there are a lot (let's say hundreds of thousands) of people out there who have auto-immune diseases, that can be controlled via drugs from a really cool national healthcare plan.  As opposed to me, who is going to have to work until I fucking die, because I need a prescription.

[Dbeasy 15095]

I wonder if anyone has had ear issues related to an autoimmune disorder. Hearing loss, tinnitus, ear fullness, dizziness. I’d be interested to hear the story. 

[Judge Roybeanbag 11821]

2 hours ago, Sbbruin said:

Yeah, some of these drugs are crazy.  Remicade would be about $9,000/treatment (400 ml) if not for insurance.  But Janssen has the threat of generics looming so they have all sorts of coverage options.  

Honestly it is one of the things that would potentially keep me from retiring on a beach in Mex.

That’s the thing, and I’ve hit on it a few times before.   I’m not a special child when it comes to my job outfitting the military.  Lots of people could do what I do, frankly if I retired it would probably employ at least 2 more people.  But I can’t fucking retire.  

[wild_turkey 3185]

I have lupus (SLE). My symptoms were mostly random skin problems until I started hydroxychloroquine about 6 years ago, which pretty much controls the problem. Luckily no other major medical issues so far, but I occasionally get random joint or back pain that I suspect is lupus related.

I’m a physician so I constantly interact with other patients with lupus. The scary part is when I meet people who were happily in remission for 10 years and then out of the blue they got pericarditis or kidney failure. I’m in my 30s and very healthy (apart from lupus), but no telling what could happen in 6 months, 5 years, or 20 years.

[ultimaton 2982]

Crohn's and psoriasis checking in. Diagnosed with CD 19 years ago, been in remission for the last 8 or so. But that's nearly twenty years of biologics, maintenance drugs, surgeries, lab work, colonoscopies, medical supplies, doctors visits, etc. I don't want to even think about how much it has cost me out of pocket -- even with great insurance -- to just get to "normal."

[Herbie Hancock 7376]

I have lupus (SLE). My symptoms were mostly random skin problems until I started hydroxychloroquine about 6 years ago, which pretty much controls the problem. Luckily no other major medical issues so far, but I occasionally get random joint or back pain that I suspect is lupus related.

I’m a physician so I constantly interact with other patients with lupus. The scary part is when I meet people who were happily in remission for 10 years and then out of the blue they got pericarditis or kidney failure. I’m in my 30s and very healthy (apart from lupus), but no telling what could happen in 6 months, 5 years, or 20 years.

How do your CBC’s look? My good friends’ wife was diagnosed about 5 years ago and your story mirrors hers. Her internal medicine doctor was a quack and instead of further investigating her elevated CPK, BUN and slightly decreased eGFR he told her to prepare to go on dialysis and a transplant list. Needless to say I encouraged her to get a second opinion and she now has a new doctor, all of her numbers are within normal limits and she hasn’t had a flare up in recent memory.

[justhookit 4191]

Ulcerative colitis here. I was in my 20’s when I got it and like a typical guy refused to keep up with my meds and checkups. Well, that didn’t work out so well for me and I had my colon removed about 20 years ago in an emergency procedure. A few years and 3 additional surgeries and I’ve been “cured” ever since. Just have to use the bathroom about 5 times more often than most people.

[statsman 5486]

I have insurance- but, thanks to ACA, it’s high deductible. We pay thousands out of pocket per year for drugs. I’m not angry at big pharma- I’m grateful they invented the drugs. I don’t expect single payer to cover them, either. Single payer will have other priorities, that affect more people. Honest question- does the UK NHS cover AID drugs?

Not to say a restructuring of health insurance wouldn’t help a lot. The Swiss system would be nice- everybody gets the same cut to buy insurance, and they have to buy insurance. That way, everyone is covered but market forces can go to work to improve efficacy and efficiency (costs). 

[TurkeyChew 383]

1 hour ago, wild_turkey said:

I have lupus (SLE). My symptoms were mostly random skin problems until I started hydroxychloroquine about 6 years ago, which pretty much controls the problem. Luckily no other major medical issues so far, but I occasionally get random joint or back pain that I suspect is lupus related.

I’m a physician so I constantly interact with other patients with lupus. The scary part is when I meet people who were happily in remission for 10 years and then out of the blue they got pericarditis or kidney failure. I’m in my 30s and very healthy (apart from lupus), but no telling what could happen in 6 months, 5 years, or 20 years.

How did you find out you got lupus? Trying to understand how one gets to a diagnosis of these things as I'm assuming that minor pains get ignored and something big had to happen to get you into the doctor (or you may be one of those rare breeds who have an annual check up and did blood work and found it that way?).

[Judge Roybeanbag 11821]

17 minutes ago, TurkeyChew said:

How did you find out you got lupus? Trying to understand how one gets to a diagnosis of these things as I'm assuming that minor pains get ignored and something big had to happen to get you into the doctor (or you may be one of those rare breeds who have an annual check up and did blood work and found it that way?).

Can’t speak for those guys, but when you wind up in the hospital getting treated for “food poisoning “, for like the third time, you’re really lucky one allergist named Dr. William Otto recognized what was up.  

[Horn of Gabriel 1817]

Type 1 diabetes checking in here.  I've helped a few people on the board with issues on this and am always happy to talk, I could write a book on this disease.  Chapter 1 of the book is what I'm going to call "It's not fucking Type II diabetes, idiot, I was born this way!"  So many ignorant people who hear "diabetes" and go immediately into "dibeetus" mode and gift me with a lecture about how I need to eat better to control it or even make it go away!  Thanks chucklefuck, I do need to eat better, but no that won't make Type 1 go away because it literally doesn't work that way.

I also have Hashimoto's Thyroidosis which I think is classified as auto immune?  They took my thyroid out a few years ago.  The combination of T1 and no thyroid makes my metabolism basically non-existent which makes weight management a joy.

[Judge Roybeanbag 11821]

It’s kinda crazy.   So many people look and think it’s your fault.   Nope.  Was born this way, didn’t ask to be, didn’t have much say in it.  But here I am.  Let’s craft a healthcare system that deals with this fact and spreads the wealth.  Or lack thereof.   

[Shoxthemonkey 1983]

16 hours ago, Sbbruin said:

Yes, every 7 weeks an infusion.  No, the side eff3cts of Cox 2 NSAIDs are bad.  Celebrex is still being used to treat.  But the biologics seem to be less impactful.  There is a slight increase in lymphoma, but letting RA progress will fuck your quality of life up bad.  But talk to real, good rheumatologists.  No Facebook, or even surly, research.  These drugs have been widely used for a long time and the data is there.  
 

oh, and if you want to start a biologic treatment, Remicade, Enbrel, Humira, etc- you better have insurance.  Shit is EXPENSIVE.

My wife, RA, has been on Remicade for at least 10 yrs, not sure when she started. She was on Enbrel to start but BCBS kicked her off of my coverage when they saw that she had Medicare. She has been on disability following a TBI in 1988. Luckily for her, Medicare covers her Remicade treatments. Her biggest issue has been finding veins to stick. We are discussing having a port installed but she will resist to the bitter end. How does that work for you Bruin?

[Judge Roybeanbag 11821]

I feel for you guys that have to do infusions.   Back before my current meds, had to do  cinryze, had to go in a vein.   It was a beating. Not just having to inject in a vein, but having to mix the stuff with saline beforehand.  Ugh.  Thankfully now it’s one shot in my gut once a month.  Like having rabies continuously.  

Edited March 23, 2022 by Judge Roybeanbag

[Judge Roybeanbag 11821]

To better answer your original question, my dad started getting sick with this stuff in the 1950s, by the time I was born in the late 1960s they still had no idea what it was.   He spent a long time at UT Galveston when I was a kid.   They basically treated it with Demerol and anti-nausea stuff.   Dad was an exceptional person.   He did undergrad at Rice, grad school and law school at UT where he was also a teacher.  Quit law school because of this disease and moved to a small town to raise us kids.  Thought it would be less stress, I guess, but then he had to deal with integration as a teacher and bus driver.  

About 1995 or so, my older sister through Dr. Larry Kravitz, who is an exceptional guy, met Dr. William Otto, who happened to recognize our disease for what it was.  He retired last year to his ranch outside Hallettsville, but still has a couple hundred patients in Texas who work with Dr. Clayton now.  We all take various treatments for hereditary angioedema, most being “orphan drugs” that are expensive as fuck.  

 

Oh, and the important thing now that I got all the “meee” stuff out of the way, like SB alluded to, if you get treated for the basic disease, it alleviates a ton of other issues.  If you have a good doctor and diagnosis, listen to them.   My life is 110% better now.  

Edited March 23, 2022 by Judge Roybeanbag

[wild_turkey 3185]

How do your CBC’s look?

Fine now. Prior to being diagnosed and starting hydroxychloroquine, I had low WBC and PLT.

[wild_turkey 3185]

How did you find out you got lupus? Trying to understand how one gets to a diagnosis of these things as I'm assuming that minor pains get ignored and something big had to happen to get you into the doctor (or you may be one of those rare breeds who have an annual check up and did blood work and found it that way?).

Many autoimmune diseases take a long time to properly diagnose because the symptoms are general and can be attributed other things early on.

In my case, I had scaly skin on my ears that multiple dermatologists couldn’t figure out and kept saying was pre-cancerous. Treated me with 5-FU and different steroids with minimal improvement. Did multiple skin biopsies. This was over a period of 6-7 years in my 20s when I saw about 5 dermatologists without getting an answer.

Then, in my early 30s, I had shingles twice. My medical training was that a young healthy person with shingles needs at minimum a CBC and HIV test so I pushed for that. Luckily the HIV was negative but the CBC showed low WBC and low platelets. That led to more blood work and I got referred to a hematologist who did a bone marrow biopsy that was inconclusive.

My new dermatologist at that time was the first person to suspect lupus so she ordered an ANA which was positive. A positive ANA is suggestive of autoimmune disease but not specific, and many normal people have a positive ANA without having autoimmune disease. That led me to a rheumatologist who did a lab workup that showed high anti-dsDNA antibodies which is fairly specific for lupus. Started treatment with hydroxychloroquine and my skin symptoms went away and all blood work normalized for the past ~5 years.

[Sbbruin 21898]

Just now, wild_turkey said:

Started treatment with hydroxychloroquine and my skin symptoms went away and all blood work normalized for the past ~5 years.

Well, now you are covid immune for life!

[TurkeyChew 383]

1 hour ago, wild_turkey said:

Many autoimmune diseases take a long time to properly diagnose because the symptoms are general and can be attributed other things early on.

In my case, I had scaly skin on my ears that multiple dermatologists couldn’t figure out and kept saying was pre-cancerous. Treated me with 5-FU and different steroids with minimal improvement. Did multiple skin biopsies. This was over a period of 6-7 years in my 20s when I saw about 5 dermatologists without getting an answer.

Then, in my early 30s, I had shingles twice. My medical training was that a young healthy person with shingles needs at minimum a CBC and HIV test so I pushed for that. Luckily the HIV was negative but the CBC showed low WBC and low platelets. That led to more blood work and I got referred to a hematologist who did a bone marrow biopsy that was inconclusive.

My new dermatologist at that time was the first person to suspect lupus so she ordered an ANA which was positive. A positive ANA is suggestive of autoimmune disease but not specific, and many normal people have a positive ANA without having autoimmune disease. That led me to a rheumatologist who did a lab workup that showed high anti-dsDNA antibodies which is fairly specific for lupus. Started treatment with hydroxychloroquine and my skin symptoms went away and all blood work normalized for the past ~5 years.

Heck yea; your doggedness and perseverance paid off. Curious if your experience informs your approach to your own practice with folks, but that’s another conversation.

How soon did your blood normalize? Gradually over 5 years, or quickly and has been normal for the last 5 years?

What, if any, are the long term damages that could have happened had you not figured it out and had low plt and wbc for years on end? Organ failure or anything weird? What are your risks as someone with Lupus today? Anything extreme you have to do to accommodate your disease?

[wild_turkey 3185]

Blood work normalized with a year. My blood counts were just barely low to begin with so it didn’t take much to get me back in the normal range.

I don’t think there was a significant threat from continuing through life without knowing about it, but that’s also because my symptoms were primarily dermatologic and I consider that fairly tolerable in a relative sense.

Hydroxychloroquine is a pretty good and effective medication for a lot of autoimmune diseases, but it does have a possible side effect of vision loss. That requires vision screenings which I do routinely, but my biggest concern is the possibility that I would have to eventually discontinue the medicine in 5-10 years and have to move onto something else that is less effective, more expensive, or has other side effects.

And yes, this does affect my approach to patients with these conditions. I like to think it makes me better in that specific area, or at least more empathetic, but the reasons for that are fairly detailed and probably beyond the scope of this thread.

[Bevo 13601]

5 hours ago, wild_turkey said:

Blood work normalized with a year. My blood counts were just barely low to begin with so it didn’t take much to get me back in the normal range.

I don’t think there was a significant threat from continuing through life without knowing about it, but that’s also because my symptoms were primarily dermatologic and I consider that fairly tolerable in a relative sense.

Hydroxychloroquine is a pretty good and effective medication for a lot of autoimmune diseases, but it does have a possible side effect of vision loss. That requires vision screenings which I do routinely, but my biggest concern is the possibility that I would have to eventually discontinue the medicine in 5-10 years and have to move onto something else that is less effective, more expensive, or has other side effects.

And yes, this does affect my approach to patients with these conditions. I like to think it makes me better in that specific area, or at least more empathetic, but the reasons for that are fairly detailed and probably beyond the scope of this thread.

I’m surprised you went through all that testing with such minor symptoms. I have IBS which affects my daily life but after a colonoscopy and initial diagnosis, I just accepted it.

[wild_turkey 3185]

2 hours ago, Bevo said:

I’m surprised you went through all that testing with such minor symptoms. I have IBS which affects my daily life but after a colonoscopy and initial diagnosis, I just accepted it.

The skin thing was extremely bothersome and it had been going on for 5+ years. My ears constantly itched and I didn't like the appearance of having scaly skin there. That's all 100% normal now.

I also wanted to know why I had leukopenia and thrombocytopenia.

[TurkeyChew 383]

6 hours ago, wild_turkey said:

The skin thing was extremely bothersome and it had been going on for 5+ years. My ears constantly itched and I didn't like the appearance of having scaly skin there. That's all 100% normal now.

I also wanted to know why I had leukopenia and thrombocytopenia.

As a practitioner, and I'm not sure what you specialize in and I suppose it doesn't really matter, but given your background does it cause you to think about your own auto-immune and auto-immune generally, in a more curious and investigative way? Have you dug into why there is so little known or what we can do with these things (and why so many variations exist)? Has it made you read up on the research and all that stuff (twin newborn studies, etc.)?

What I've found in the last decade or so:

1) The internet is simultaneously your best friend and worst enemy when it comes to all things medical information, and

2) Doctors are the same as you and me (literally, with you), in that they have chosen a craft or profession and dedicate their time, to varying degrees, to honing their skills and abilities. They aren't magicians and what they, and we as society, know about the human body and medical conditions is akin to what we know and have explored about the universe (or our own oceans even). We have good grasps of some basic things but what we don't understand and have seen is way more vast than what we do understand. That is a far cry from my child-like innocence when I viewed doctors as prime intelligent beings in our society with answers to all things human health and body.

Edited March 24, 2022 by TurkeyChew

[A-Tex Devil 2463]

Just found this thread.  We've been dealing with trying to ID wife's autoimmune issues for last two years.  I feel like I am in a multi-year episode of House with 5 different doctors that barely talk to each other and just send her back and forth. 

After our daughter was born in late 2013, about 6 months later she had acute pancreatic failure that severely limited her diet and she lost a ton of weight.  She got through that and things seemed to be fine.  Then about the time the pandemic started she started getting more and more GI issues and was eventually diagnosed formally with Celiac last year.,  We started getting a handle on that when her gall bladder freaked out last Thanksgiving and had to be removed.  No stones but severely necrotic.  Since then, it's been a battle to keep on weight and stay above 100 pounds (she's 5'3"), although we are starting to get there.  She started getting IVIG infusions, but then had anotherr episode that sent her to the hospital where she was in severe pain and had a to of night sweats.  So we temporarily stopped those.  Blood tests show thyroid issues and liver issues.  So maybe Hashimotos,, maybe autoimmune hepatitis.  No one knows.  But she sweats buckets every night and has regular joint pain.  Plus she's a fucking anxious stress ball which doesn't help matters, but trying to solve for that in the near term is a losing battle.   Doctors have come back and said restart IVIG infusions.  Those fucking wipe her out for 2 days, but apparently benefits come after months.  

In any event, thyroid scan tomorrow and hopefully that will show something (or not).  It's a fucking beating for her, though, not knowing and sweating through 3 sets of clothes every night.  

[Horn of Gabriel 1817]

3 hours ago, A-Tex Devil said:

Just found this thread.  We've been dealing with trying to ID wife's autoimmune issues for last two years.  I feel like I am in a multi-year episode of House with 5 different doctors that barely talk to each other and just send her back and forth. 

After our daughter was born in late 2013, about 6 months later she had acute pancreatic failure that severely limited her diet and she lost a ton of weight.  She got through that and things seemed to be fine.  Then about the time the pandemic started she started getting more and more GI issues and was eventually diagnosed formally with Celiac last year.,  We started getting a handle on that when her gall bladder freaked out last Thanksgiving and had to be removed.  No stones but severely necrotic.  Since then, it's been a battle to keep on weight and stay above 100 pounds (she's 5'3"), although we are starting to get there.  She started getting IVIG infusions, but then had anotherr episode that sent her to the hospital where she was in severe pain and had a to of night sweats.  So we temporarily stopped those.  Blood tests show thyroid issues and liver issues.  So maybe Hashimotos,, maybe autoimmune hepatitis.  No one knows.  But she sweats buckets every night and has regular joint pain.  Plus she's a fucking anxious stress ball which doesn't help matters, but trying to solve for that in the near term is a losing battle.   Doctors have come back and said restart IVIG infusions.  Those fucking wipe her out for 2 days, but apparently benefits come after months.  

In any event, thyroid scan tomorrow and hopefully that will show something (or not).  It's a fucking beating for her, though, not knowing and sweating through 3 sets of clothes every night.  

Are you with an Endocrinologist?  Sounds like an endocrine issue?

[A-Tex Devil 2463]

8 hours ago, Horn of Gabriel said:

Are you with an Endocrinologist?  Sounds like an endocrine issue?

Next step.  Adding that specialist to the pile (neurologist, hematologist, rheumatoligst, gastro, etc.)   Above was more of a vent.  The House comparisons are real.  It just takes 5-6 doctors and a few years, as opposed to House, some residents and 48 commercial interrupted minutes.

[Knoxtnhorn 6066]

Thanks to @Sbbruin for recommending this thread.

My doc suspects I have RA.  Put me on a steroid last week until the blood test comes back.  Thing is, I haven't gotten the blood test completed yet because I've been busy.  Here's everything I've been dealing with.  Any thoughts?

Rash on my left shin that has basically been there for 3 years.  It, occasionally, starts to go away, but flares back up.

Lots of fatigue and sore joints.  I've always been super athletic.  Over the past couple of years, I actually have to use handrails to get up and down the damn stairs.  Lower left side of my back (SI joint) has been hurting for a couple of years now.  Most of the pain is in my feet, ankles, knees.  I say this in the strongest of anti-pussy ways ... I've always been able to deal with pain.  I ran a marathon on a dare, I played soccer on two broken ribs, long story short, I once had to jog 4 miles on a newly torn ACL.  What I'm dealing with lately is very debilitating and above and beyond just getting old, IMO.  

One of my eyes gets bloodshot every couple of months.  Eyes are dry a lot.

I do not have nail issues, pitted or otherwise.  (This seemed to lead the teledoc away from further PA or RA testing when I first mentioned my symptoms a couple of years ago.)

[Sbbruin 21898]

1 minute ago, Knoxtnhorn said:

Thanks to @Sbbruin for recommending this thread.

My doc suspects I have RA.  Put me on a steroid last week until the blood test comes back.  Thing is, I haven't gotten the blood test completed yet because I've been busy.  Here's everything I've been dealing with.  Any thoughts?

Rash on my left shin that has basically been there for 3 years.  It, occasionally, starts to go away, but flares back up.

Lots of fatigue and sore joints.  I've always been super athletic.  Over the past couple of years, I actually have to use handrails to get up and down the damn stairs.  Lower left side of my back (SI joint) has been hurting for a couple of years now.  Most of the pain is in my feet, ankles, knees.  I say this in the strongest of anti-pussy ways ... I've always been able to deal with pain.  I ran a marathon on a dare, I played soccer on two broken ribs, long story short, I once had to jog 4 miles on a newly torn ACL.  What I'm dealing with lately is very debilitating and above and beyond just getting old, IMO.  

One of my eyes gets bloodshot every couple of months.  Eyes are dry a lot.

I do not have nail issues, pitted or otherwise.  (This seemed to lead the teledoc away from further PA or RA testing when I first mentioned my symptoms a couple of years ago.)

You have all the hallmarks of autoimmune issues for sure.  The “rash” is likely psoriasis, which I too have, but control it with Enstellar topical foam(hopefully insurance covers it cuz it’s expensive af).  The one bloodshot eye is iritis.  Also autoimmune related.  I used to get that before remicade, now I almost never get it.  Get the blood tests, but I’m afraid it’s welcome to the club, pal.

[Bevo 13601]

On 4/18/2022 at 9:22 PM, A-Tex Devil said:

Just found this thread.  We've been dealing with trying to ID wife's autoimmune issues for last two years.  I feel like I am in a multi-year episode of House with 5 different doctors that barely talk to each other and just send her back and forth. 

After our daughter was born in late 2013, about 6 months later she had acute pancreatic failure that severely limited her diet and she lost a ton of weight.  She got through that and things seemed to be fine.  Then about the time the pandemic started she started getting more and more GI issues and was eventually diagnosed formally with Celiac last year.,  We started getting a handle on that when her gall bladder freaked out last Thanksgiving and had to be removed.  No stones but severely necrotic.  Since then, it's been a battle to keep on weight and stay above 100 pounds (she's 5'3"), although we are starting to get there.  She started getting IVIG infusions, but then had anotherr episode that sent her to the hospital where she was in severe pain and had a to of night sweats.  So we temporarily stopped those.  Blood tests show thyroid issues and liver issues.  So maybe Hashimotos,, maybe autoimmune hepatitis.  No one knows.  But she sweats buckets every night and has regular joint pain.  Plus she's a fucking anxious stress ball which doesn't help matters, but trying to solve for that in the near term is a losing battle.   Doctors have come back and said restart IVIG infusions.  Those fucking wipe her out for 2 days, but apparently benefits come after months.  

In any event, thyroid scan tomorrow and hopefully that will show something (or not).  It's a fucking beating for her, though, not knowing and sweating through 3 sets of clothes every night.  

I would look at getting a second opinion. Where do you live?

[Vegas64 678]

14 hours ago, Knoxtnhorn said:

Thanks to @Sbbruin for recommending this thread.

My doc suspects I have RA.  Put me on a steroid last week until the blood test comes back.  Thing is, I haven't gotten the blood test completed yet because I've been busy.  Here's everything I've been dealing with.  Any thoughts?

Rash on my left shin that has basically been there for 3 years.  It, occasionally, starts to go away, but flares back up.

Lots of fatigue and sore joints.  I've always been super athletic.  Over the past couple of years, I actually have to use handrails to get up and down the damn stairs.  Lower left side of my back (SI joint) has been hurting for a couple of years now.  Most of the pain is in my feet, ankles, knees.  I say this in the strongest of anti-pussy ways ... I've always been able to deal with pain.  I ran a marathon on a dare, I played soccer on two broken ribs, long story short, I once had to jog 4 miles on a newly torn ACL.  What I'm dealing with lately is very debilitating and above and beyond just getting old, IMO.  

One of my eyes gets bloodshot every couple of months.  Eyes are dry a lot.

I do not have nail issues, pitted or otherwise.  (This seemed to lead the teledoc away from further PA or RA testing when I first mentioned my symptoms a couple of years ago.)

Bad move to take steroids before doing the bloodwork, IMO. 

I have had a bout with this stuff and I don't have the time to write out a novel now, but the long and short of lessons learned is always do blood work and testing before starting treatment because you can mask or make diagnosis longer and harder when treating symptoms to lead to a clinical impression.

[Knoxtnhorn 6066]

1 hour ago, Vegas64 said:

Bad move to take steroids before doing the bloodwork, IMO. 

I have had a bout with this stuff and I don't have the time to write out a novel now, but the long and short of lessons learned is always do blood work and testing before starting treatment because you can mask or make diagnosis longer and harder when treating symptoms to lead to a clinical impression.

Thanks.  I was, quite literally, about to ask this very question.  Since starting the roids 2 weeks ago, my symptoms have improved a lot.  I was wondering if that would affect any markers I might have in my blood.

[Vegas64 678]

47 minutes ago, Knoxtnhorn said:

Thanks.  I was, quite literally, about to ask this very question.  Since starting the roids 2 weeks ago, my symptoms have improved a lot.  I was wondering if that would affect any markers I might have in my blood.

Steroids knock down inflammation, so your inflammation markers will be lower. Not sure about the RA factor, but if you have something that is multi-system (e.g. joints/swollen arthritis) but is not actually RA or PA, then it will be harder to nail down. Do you have a good rheumatologist you are going to or is this all your GCP?

[Knoxtnhorn 6066]

1 minute ago, Vegas64 said:

Steroids knock down inflammation, so your inflammation markers will be lower. Not sure about the RA factor, but if you have something that is multi-system (e.g. joints/swollen arthritis) but is not actually RA or PA, then it will be harder to nail down. Do you have a good rheumatologist you are going to or is this all your GCP?

Haven't made it as far as a specialist yet.

[Vegas64 678]

Just now, Knoxtnhorn said:

Haven't made it as far as a specialist yet.

That's a big problem. Get to a rheumatologist post-haste. I'm not a doctor, but GCP's are worthless with auto-immune generally speaking.

[Knoxtnhorn 6066]

Will do.  Have to be referred by my PCP first.

[A-Tex Devil 2463]

5 hours ago, Bevo said:

I would look at getting a second opinion. Where do you live?

Austin.  Second opinion on which part, though?  It seems to be many different opinions triangulating on one auto-immune issue or another.