Autoimmune disease Era

[Achtung]

I've dealt with psoriasis for most of my life, and think I have psoriatic arthritis flare ups every now and again. Anyone deal with this?

Click to shrink...

I sure do... I had Psoriasis starting around age 32 and it was left unchecked until I was around 37... when I woke up in horrific pain and my wife went on a search. It felt like every joint in my body was on fire. I could not move.. so she discovered the Arthritis aspect of Psoriasis and that is when I got help. I ended up getting it looked at via a derm. She was able to get me on something that helped with both right away.. it was Otezla... this worked great for one year (I used their help to pay for it as it is pathetic how expensive it is).. but after year it just stopped working. My doctor called it Breakthrough.. which will happen. So after a few horrible months of pain she got me on Taltz which is a monthly shot. (After 12 weeks of every 2 weeks) I have been on it for a year now and its working great so far.. I got relief within hours of taking my first shot. The shots suck... but are only once a month. Now Taltz has the same issue as Otezla.. cost about 6k per shot but so far Taltz has a great program to help pay. $25 without insurance and only $5 with insurance. Now this only goes for 3 years so not sure what I will do after that, likely switch to another medicine.

You need to get on something.... every time your joints hurt its perm damage.. I have 2 toes that are hammer toes now because I acted too late, they were the first indication even before all the joint pain. Also Psoriatic Arthritis can not be tested for... you do need to see a Rheumatologists who pretty much looked at my Psoriasis and my toes and said I have it. Feel free to message me if you need any advice or help with anything.

 

[Fiction]

Anyone else get sick of unsolicited advice from assholes on your autoimmune disease? In my 40s with eczema and have been hearing it my whole life even from strangers. Honestly its made me a tougher and more passive aggressive person.

"My cousin has such and such and taking X daily made it go away"

"Why don't you go to a doctor?"

"Why don\t you take medicine for it?"

Like WTF? I've tried everything and have gone to dozens of specialists. Also if you're a stranger (always an old white lady) mind your damn business.

Click to shrink...

So freaking annoying.

Right now I have no health insurance so it's gotten a lot worse.

 

[Vommy]

SixPointEight, DarknessTear and jml thanks for the advice, it helped me a lot.!

 

[jiggle]

PA here on methotrexate and enbrel
Got moderna
Forgot to even ask my doctor before getting it since it's not the regular kind vaccine (like I'm not supposed to get the measles one)
I'm more concerned with their effectiveness when immuno suppressed

 

[Jombie]

I sure do... I had Psoriasis starting around age 32 and it was left unchecked until I was around 37... when I woke up in horrific pain and my wife went on a search. It felt like every joint in my body was on fire. I could not move.. so she discovered the Arthritis aspect of Psoriasis and that is when I got help. I ended up getting it looked at via a derm. She was able to get me on something that helped with both right away.. it was Otezla... this worked great for one year (I used their help to pay for it as it is pathetic how expensive it is).. but after year it just stopped working. My doctor called it Breakthrough.. which will happen. So after a few horrible months of pain she got me on Taltz which is a monthly shot. (After 12 weeks of every 2 weeks) I have been on it for a year now and its working great so far.. I got relief within hours of taking my first shot. The shots suck... but are only once a month. Now Taltz has the same issue as Otezla.. cost about 6k per shot but so far Taltz has a great program to help pay. $25 without insurance and only $5 with insurance. Now this only goes for 3 years so not sure what I will do after that, likely switch to another medicine.

You need to get on something.... every time your joints hurt its perm damage.. I have 2 toes that are hammer toes now because I acted too late, they were the first indication even before all the joint pain. Also Psoriatic Arthritis can not be tested for... you do need to see a Rheumatologists who pretty much looked at my Psoriasis and my toes and said I have it. Feel free to message me if you need any advice or help with anything.

Click to shrink...

Thanks. I'll book an appointment with a dermatologist. I had a horrible flare up about a month ago that lasted a couple of weeks. It was horrible.

 

[Android Sophia]

Hey peps, was wondering if any of you got any vaccine shots for Covid? My specialist was kinda passive towards the idea to get them "fast". He told me the longer I can wait the better with more studies out especially regarding its effects on autoimmune diseases.

Click to shrink...

I got my first shot of the Pfizer with no issues. Psoriatic Arthritis and Psoriasis, among other conditions.

I've dealt with psoriasis for most of my life, and think I have psoriatic arthritis flare ups every now and again. Anyone deal with this?

Click to shrink...

Yup. Psoriatic arthritis can be the worst. It's not as bad now that I'm on immunosuppressants, but prior to getting on the right medicine I spent entire days bedridden because of the flareups. I was in so much pain, fatigue, and stiffness. The actual Psoriasis isn't too bad for me now that I'm on the right medicines, although I still am using creams from a dermatologist to clear up what spots I do have (mainly on my legs)

I sure do... I had Psoriasis starting around age 32 and it was left unchecked until I was around 37... when I woke up in horrific pain and my wife went on a search. It felt like every joint in my body was on fire. I could not move.. so she discovered the Arthritis aspect of Psoriasis and that is when I got help. I ended up getting it looked at via a derm. She was able to get me on something that helped with both right away.. it was Otezla... this worked great for one year (I used their help to pay for it as it is pathetic how expensive it is).. but after year it just stopped working. My doctor called it Breakthrough.. which will happen. So after a few horrible months of pain she got me on Taltz which is a monthly shot. (After 12 weeks of every 2 weeks) I have been on it for a year now and its working great so far.. I got relief within hours of taking my first shot. The shots suck... but are only once a month. Now Taltz has the same issue as Otezla.. cost about 6k per shot but so far Taltz has a great program to help pay. $25 without insurance and only $5 with insurance. Now this only goes for 3 years so not sure what I will do after that, likely switch to another medicine.

You need to get on something.... every time your joints hurt its perm damage.. I have 2 toes that are hammer toes now because I acted too late, they were the first indication even before all the joint pain. Also Psoriatic Arthritis can not be tested for... you do need to see a Rheumatologists who pretty much looked at my Psoriasis and my toes and said I have it. Feel free to message me if you need any advice or help with anything.

Click to shrink...

Definitely know the feeling. Prior to getting treatment, it would feel like I was on fire and moving through a giant pile of mud. It was unbearable and one of the worst feelings ever.

I've got joint damage in a few spots now because of how quickly it impacted my body. It only took about two years. While I can still walk, I will no longer run for the rest of my life probably.

Anyone else get sick of unsolicited advice from assholes on your autoimmune disease? In my 40s with eczema and have been hearing it my whole life even from strangers. Honestly its made me a tougher and more passive aggressive person.

"My cousin has such and such and taking X daily made it go away"

"Why don't you go to a doctor?"

"Why don\t you take medicine for it?"

Like WTF? I've tried everything and have gone to dozens of specialists. Also if you're a stranger (always an old white lady) mind your damn business.

Click to shrink...

I've actually been pretty lucky so far. Despite having a cane for walking around, almost nobody has given me unsolicited advice. I do get a lot of stares for being a 32 year old with a cane tho.

 

[yotsuben]

Hey peps, was wondering if any of you got any vaccine shots for Covid? My specialist was kinda passive towards the idea to get them "fast". He told me the longer I can wait the better with more studies out especially regarding its effects on autoimmune diseases.

Click to shrink...

Yup, got both Moderna shots over a month ago. No issues so far. My specialist was very adamant about me getting it as soon as possible, especially since I'm on immunosuppressants.

Anyone else get sick of unsolicited advice from assholes on your autoimmune disease? In my 40s with eczema and have been hearing it my whole life even from strangers. Honestly its made me a tougher and more passive aggressive person.

"My cousin has such and such and taking X daily made it go away"

"Why don't you go to a doctor?"

"Why don\t you take medicine for it?"

Like WTF? I've tried everything and have gone to dozens of specialists. Also if you're a stranger (always an old white lady) mind your damn business.

Click to shrink...

My family is a) anti-vaxxers, b) into all kinds of homeopathic remedies and essential oil bullshit. It was a huge pain when I first got diagnosed with Crohn's and type 2 diabetes back-to-back in the span of a couple months. Granted I'm 31, married, and don't live with them so it's fairly easy to ignore but it was really bothersome for a bit there at the start. Nowadays if I ever encounter someone where the topic comes up it's usually because they also have some sort of autoimmune disease and we're commiserating over it, lol. Granted, I have more "invisible" issues that don't show up unless I'm having a real bad flare up, and then I'm usually not leaving the house anyway. But there was a period of my life where my Crohn's was REAL bad before my doctor and I dialed in the exact meds that worked for me, and man, the advice I got was just laughable. I'm sure other folks have already cataloged the funnier/more nonsensical advice out there for comedy purposes.

 

[loco]

Hey peps, was wondering if any of you got any vaccine shots for Covid? My specialist was kinda passive towards the idea to get them "fast". He told me the longer I can wait the better with more studies out especially regarding its effects on autoimmune diseases.

Click to shrink...

My doctor told me not to worry and take it the moment it became available which I did. I guess it depends on the conditions and severity of the autoimmune disease.

 

[jml]

Anyone else get sick of unsolicited advice from assholes on your autoimmune disease? In my 40s with eczema and have been hearing it my whole life even from strangers. Honestly its made me a tougher and more passive aggressive person.

"My cousin has such and such and taking X daily made it go away"

"Why don't you go to a doctor?"

"Why don\t you take medicine for it?"

Like WTF? I've tried everything and have gone to dozens of specialists. Also if you're a stranger (always an old white lady) mind your damn business.

Click to shrink...

With Crohn's this is fun to deal with for a couple reasons:

1. There are very different levels of severity with Crohn's. I've heard of some people with a mild form of the disease where basically all they had to do to go into remission was make sure they stay away from a few problem foods and they're good. Meanwhile there are other people with the disease who can try to keep a strict diet, try out biologic medication after medication, undergo some pretty major surgery, and they still won't feel better after all of that. So don't tell me you have a friend and all she had to do was some simple thing and now she's feeling all better. If it was that easy I would've done the same thing a long time ago too.

2. Because it's a digestive disease you're bound to get diet advice. And again, people with Crohn's can have different trigger foods from person to person. Hell even my own trigger foods can change over time. Don't tell me to eat more salads and leafy vegetables; sometimes when I'm flaring up a salad is the absolute worst thing I can eat because it feels like shards of glass going through my system. Meanwhile, something like fast food fried chicken is usually one of the safer things I can eat - I know it's not "healthy" but it's a food I can reliably get down without it putting me in a lot of pain afterward.

 

[loco]

With Crohn's this is fun to deal with for a couple reasons:

1. There are very different levels of severity with Crohn's. I've heard of some people with a mild form of the disease where basically all they had to do to go into remission was make sure they stay away from a few problem foods and they're good. Meanwhile there are other people with the disease who can try to keep a strict diet, try out biologic medication after medication, undergo some pretty major surgery, and they still won't feel better after all of that. So don't tell me you have a friend and all she had to do was some simple thing and now she's feeling all better. If it was that easy I would've done the same thing a long time ago too.

2. Because it's a digestive disease you're bound to get diet advice. And again, people with Crohn's can have different trigger foods from person to person. Hell even my own trigger foods can change over time. Don't tell me to eat more salads and leafy vegetables; sometimes when I'm flaring up a salad is the absolute worst thing I can eat because it feels like shards of glass going through my system. Meanwhile, something like fast food fried chicken is usually one of the safer things I can eat - I know it's not "healthy" but it's a food I can reliably get down without it putting me in a lot of pain afterward.

Click to shrink...

That's rough and I know the aggravation it causes. Hoping you find that remission breakthrough soon. A couple of years ago I was flaring up and went to a CVS to get my meds. Some old lady looked me up and down and shouted "you need to cut all dairy out of your diet. My son is a nurse and says that always works". I was so pissed and bit my tongue hard. All I could say was I wished it was that simple.

 

[yotsuben]

2. Because it's a digestive disease you're bound to get diet advice. And again, people with Crohn's can have different trigger foods from person to person. Hell even my own trigger foods can change over time. Don't tell me to eat more salads and leafy vegetables; sometimes when I'm flaring up a salad is the absolute worst thing I can eat because it feels like shards of glass going through my system. Meanwhile, something like fast food fried chicken is usually one of the safer things I can eat - I know it's not "healthy" but it's a food I can reliably get down without it putting me in a lot of pain afterward.

Click to shrink...

Oh, you too? Salads can be the absolute worst thing for my Crohns at times but stuff like chicken nuggets or chicken sandwiches make me regular as hell. Dunno what it is lol. I assume it's because it's just soft mushy food.

 

[grang]

Anyone else get sick of unsolicited advice from assholes on your autoimmune disease? In my 40s with eczema and have been hearing it my whole life even from strangers. Honestly its made me a tougher and more passive aggressive person.

"My cousin has such and such and taking X daily made it go away"

"Why don't you go to a doctor?"

"Why don\t you take medicine for it?"

Like WTF? I've tried everything and have gone to dozens of specialists. Also if you're a stranger (always an old white lady) mind your damn business.

Click to shrink...

I know it's super lame but I have intense anxiety about getting a haircut because of my psoriasis, in this case on my scalp. I've gotten gasps and tons of unsolicited advice in the past.

Unrelated but just today got my second vaccination and it was National Guard folks administering shots, as soon as I pulled down my sleeve (exposing psoriasis spots) the guy's demeanor changed entirely and he barely spoke to me the rest of the time I was in the chair. I guess I could be reading into it too much but I don't think so, the first shot was staffed by paramedics and I didn't feel uncomfortable at all.

 

[Wrighteous86]

Is there anyone else on this board with myasthenia gravis? It's normally diagnosed in older men and women, but I was diagnosed a two years ago at 33. Still trying to find a good balance with my meds and come to grips with everything.

 

[Omegabalmung]

Awesome that I found this thread and I have to go back and read everyone's post.

33 years old and I have been just recently diagnosed with Rheumatoid arthritis. I'm Currently on methotrexate, folic acid, and vitamin d.

So I think my first symptoms were 2 years ago on my feet and toes with pain and aches. I work overnight at a grocery store so I'm on my feet my whole shift so I thought it was just that. It moved up to my right wrist with pain at the end of 2019. In early 2020, the pain moved to my left wrist also but it was on and off. Mid 2020, I started to have aches and pain all over my body when I woke up. During that time I just thought I'm being overworked so I just said i needed to stretch more and need more rest.

In November 2020, the pain moved down to both of my ankles and I was pretty much walking with a limp at work. It got so bad that when woke up, I couldn't even put pressure on my right foot and dragged my right foot around the house. December 2020, now the pain moved to both of my hands and that's when I stated to worry because now I couldn't do anything without having severe pain shooting through my hands and wrist.

Early January 2021 is where it was at the worst. It's gotten to the point where I couldn't even get out of my bed anymore so I finally called my doctor to find out what was wrong. Went to get checked up and he pretty much said that sounded like RA but wanted to do some blood work just in case. The results came in and yup, I had high numbers for RA so he sent me to a rheumatologist.

So far I'm about 50% of what I used to be but it's much better then in January when I couldn't even get out of bed.

Edit: Also I had severe case of fatigue during all of this. At least once or twice a week I would be knocked out the whole day. I would get home at 7am and sleep until I had to get up for work at 10pm. Even after all that sleep, I would still feel tired.

 

[bombermouse]

I got hashimotos and this thread scares me a lot, my joint pain keeps increasing and I'm worried it might be compounded with something else. I'm just very afraid to go to a doctor right now.

 

[vainya]

I found another doctor. She's leaning toward me not having RA but she also thinks it could be a very mild case. I was diagnosed in 2016 and I haven't gotten worse so that's what she's going off of. However, I got my blood tests back and they are puzzling. They are showing a possible autoimmune disease somewhere in my body but none of the actual tests for autoimmune diseases are positive (although my Rheumatoid factor number keeps creeping up). I'm going to have a fun time at my next appointment.

As for the vaccines, I have to go to physical therapy for my hand for Carpal Tunnel Syndrome but the doctor won't let me go until I'm fully vaccinated. So I'm getting the shot tomorrow. I hope I don't have bad side effects.

 

[RoninZ]

I just got a Primary Biliary Cholangitis diagnosis earlier this month through blood and MRIs (already have UC and had my gallbladder removed), actually have to have a liver biopsy today to confirm if is true and if so what stage. Happy there is a group here on Era, been feeling horrible mentally and emotionally lately.

 

[Vommy]

I got hashimotos and this thread scares me a lot, my joint pain keeps increasing and I'm worried it might be compounded with something else. I'm just very afraid to go to a doctor right now.

Click to shrink...

I just got a Primary Biliary Cholangitis diagnosis earlier this month through blood and MRIs (already have UC and had my gallbladder removed), actually have to have a liver biopsy today to confirm if is true and if so what stage. Happy there is a group here on Era, been feeling horrible mentally and emotionally lately.

Click to shrink...

Welcome bombermouse and RoninZ, glad to have you here. If you ever feel the need to vent, just send a dm. Hope that everything turns out as well as it could be for you.

 

[pizoxuat]

My diagnosis got modified to hashimoto's, poly arthritis, ibd, and fibromyalgia. I agree on the fibro, I have the classic wandering tender points and the fatigue. I am not sure I agree that I don't have ana-negative lupus. My family has a history of it. My blood does have elevated inflammation markers and with no thyroid tissue or thyroid cancer present in my body it shouldn't be the hashimotos doing that. They didn't find arthritis in my hands, so it's just a guess that the arthritis is what causes the much worse pain I experience in my hips and ankles.

With me being opioid intolerant, they have me on diclofenac, amitriptyline, and gabapentin to control the pain. On a bad day I'm authorized to take so much gabapentin that I don't feel hunger or thirst cues and have to remember to eat and drink by the clock. Nothing for the fatigue. On a good day I can get up to about 5000 steps on my pedometer before I am too tired to do anything. On a bad day I am lucky to break 1000. I walk with a cane now, something I didn't think I would be doing at 40. Somedays I use a walker. If my company decides to go back to all people in the office, I am fucked unless I get a motorized wheelchair. Just the walk from the handicapped parking to the elevator would be like half my steps for the day.

It's a lot to deal with emotionally. I am about to hire a cleaning service because I can't keep up with my half of the chores and it's not fair to ask my husband to carry my share of the load. I am in at least low-grade pain all the time. I never know when fatigue is going to suddenly knock me on my ass. I used to love the rain, now I know that the pressure changes before a storm mean I will be suffering the entire time. And this is my new normal. This is my new normal and I can't let myself pretend otherwise, because getting my hopes up that it will get better hurts too.



Anyway, I meant to post about the vaccine. I have had both shots, Moderna. First one was no big deal, just soreness in the arm I got it in. The second one whipped my ass for 3 days straight before I was able to work again. Feverish, all over soreness and joint pain, absolute misery. Still happy to have it done, and if they need to do more boosters for additional variants I will get them.

 

[Android Sophia]

I never know when fatigue is going to suddenly knock me on my ass.

Click to shrink...

This is definitely a mood, and I feel you there. I'm considering hiring a maid/cleaning service as well, simply because it takes so much energy just to clean the most basic of things.

 

[Valcrist]

Aside from dealing with palpitations for like... entire days lately, last night my left eye began to ache pretty bad towards the back when I moved it or looked at my phone or smart watch. Might be having another MS relapse, unsure. Spine feels like it is dancing when I lay on my back.

Autoimmune diseases suck so bad. MS in particular is just like "fuck you, I do whatever I want" and it is unnerving.

 

[Kompis]

Cross posting from the "I most likely have Chrons disease" thread.

I have lived with Ulcerative Colitis (UC) since I was a kid, over 30 years now. I also got Primary sclerosing cholangitis (PSC) in my mid twenties because of the UC. My doctor that diagnosed me with PSC told me to not expect living beyond the age of 40, but i'm still going strong at the age of 43.
Honestly it has affected me mentally way worse than physically so far as I worry for the future all the time. Not to say it can be very physically challanging from time to time as well.

I also have a mild case of vitiligo on my back and ass! :3

 

[Valcrist]

Cross posting from the "I most likely have Chrons disease" thread.

I have lived with Ulcerative Colitis (UC) since I was a kid, over 30 years now. I also got Primary sclerosing cholangitis (PSC) in my mid twenties because of the UC. My doctor that diagnosed me with PSC told me to not expect living beyond the age of 40, but i'm still going strong at the age of 43.
Honestly it has affected me mentally way worse than physically so far as I worry for the future all the time. Not to say it can be very physically challanging from time to time as well.

I also have a mild case of vitiligo on my back and ass! :3

Click to shrink...

Can you not get a liver transplant?

 

[Replicant]

Cross posting from the "I most likely have Chrons disease" thread.

I have lived with Ulcerative Colitis (UC) since I was a kid, over 30 years now. I also got Primary sclerosing cholangitis (PSC) in my mid twenties because of the UC. My doctor that diagnosed me with PSC told me to not expect living beyond the age of 40, but i'm still going strong at the age of 43.
Honestly it has affected me mentally way worse than physically so far as I worry for the future all the time. Not to say it can be very physically challanging from time to time as well.

I also have a mild case of vitiligo on my back and ass! :3

Click to shrink...

I got diagnosed with psc in early 2019. I will be 43 in August. Shit sucks man. Having something so incredibly rare and no cure is devastating. The only good news is it usually slow progressing. A liver transplant can happen, though it cold come back. My bigger worry than the liver damage is it raises your chances of both colon cancer and liver cancer by a large percentage.

If I didn't know i had psc, I would be much unaware as. I don't have any symptoms of it yet. Only way I knew was some mild liver enzyme inflation for about 3 months. Since I've been diagnosed my liver tests have been normal. I have had 3 ercp's since 2019 to check on it and after the second one there was a cancer scare with some cells they found in the bile duct.

 

[Replicant]

Can you not get a liver transplant?

Click to shrink...

Only at end stage of liver disease can you get one. PSC has a chance to return as well.

 

[Kompis]

Can you not get a liver transplant?

Click to shrink...

Hopefully I can the day it is needed. It obviously depends on finding the correct donor in time.
I will not be put up on a donation list until my doctor consider my liver to be in a state it needs to be replaced.

But honestly I worry more about cancer as there is a pretty high correlation between PSC and colon/liver cancer.

 

[Kompis]

I got diagnosed with psc in early 2019. I will be 43 in August. Shit sucks man. Having something so incredibly rare and no cure is devastating. The only good news is it usually slow progressing. A liver transplant can happen, though it cold come back. My bigger worry than the liver damage is it raises your chances of both colon cancer and liver cancer by a large percentage.

If I didn't know i had psc, I would be much unaware as. I don't have any symptoms of it yet. Only way I knew was some mild liver enzyme inflation for about 3 months. Since I've been diagnosed my liver tests have been normal. I have had 3 ercp's since 2019 to check on it and after the second one there was a cancer scare with some cells they found in the bile duct.

Click to shrink...

Yeah shit truly sucks, sorry you have it as well. What has worked best for me is not reading to much on the internet because it can make you depressed pretty fast.

I'm currently in this medicinal study testing the effect of a drug that might have beneficial effects. Not sure if i'm in the group getting the real drug or the group getting the sugar pills though. It just started this spring and will go on for 5 years. I think it's a pretty common drug that is called Simvastatin.

 

[Replicant]

Yeah shit truly sucks, sorry you have it as well. What has worked best for me is not reading to much on the internet because it can make you depressed pretty fast.

I'm currently in this medicinal study testing the effect of a drug that might have beneficial effects. Not sure if i'm in the group getting the real drug or the group getting the sugar pills though. It just started this spring and will go on for 5 years. I think it's a pretty common drug that is called Simvastatin.

Click to shrink...

I'm taking vancomycin for my UC which also has some evidence of some therapy for psc. I convinced my doctor to prescribe it after about a few months of begging. The vancomycin has helped with the psc a bit but the past 2 months or so..I've noticed it not helping as much. But it gave me solid bowel movements for the first time in years. I've had a pretty weird stomach pain for a couple of months that is nagging and I have a doctors appointment in the next week to check on that..I maybe waited a bit long to talk about it. I did just recently have a blood test and all my blood and liver numbers were normal.

I do worry I maybe have something going on in my pancreas.

 

[The Boat]

This thread just taught me there's such a thing as psoriatic arthritis. I found out I have psoriasis a month or two ago and my joints and back pain are very weak, I hurt them all the time... I suppose I need to check this out.

Last week, by chance, I saw the symptoms of fybromialgia and most things fit perfectly... I'm always exhausted, my sleep is shit, I have depression and anxiety, foggy brain, my neck is always super stiff and my lower legs completely stiffen up if I even pick up the pace a bit for a minute. I also have IBS and a weak digestive system, feel dizzy often, have tinnitus and the skin on my hands sometimes gets hiper sensitive (only happened a couple of times, but recently). I guess I have to book some appointments, I read that it's hard for men to get a fybromyalgia diagnostic.

 

[Android Sophia]

This thread just taught me there's such a thing as psoriatic arthritis. I found out I have psoriasis a month or two ago and my joints and back pain are very weak, I hurt them all the time... I suppose I need to check this out.

Last week, by chance, I saw the symptoms of fybromialgia and most things fit perfectly... I'm always exhausted, my sleep is shit, I have depression and anxiety, foggy brain, my neck is always super stiff and my lower legs completely stiffen up if I even pick up the pace a bit for a minute. I also have IBS and a weak digestive system, feel dizzy often, have tinnitus and the skin on my hands sometimes gets hiper sensitive (only happened a couple of times, but recently). I guess I have to book some appointments, I read that it's hard for men to get a fybromyalgia diagnostic.

Click to shrink...

For what it's worth, psoriatic arthritis and fibromyalgia often tend to go hand and hand, and you can have both. Digestive issues with psoriatic arthritis are extremely common too, especially Irritable Bowel Syndrome or Inflammatory Bowl Disease. Your symptoms sound very similar to mine: Weak joints, lower back pain, legs stiff up, hypersensitive, foggy brain, tinnitus, and digestive issues (in my case, non celiac gluten intolerance.)

Definitely worth checking out. If you have psoriasis, then odds are very good you've got the arthritis to go with it.

 

[The Boat]

For what it's worth, psoriatic arthritis and fibromyalgia often tend to go hand and hand, and you can have both. Digestive issues with psoriatic arthritis are extremely common too, especially Irritable Bowel Syndrome or Inflammatory Bowl Disease. Your symptoms sound very similar to mine: Weak joints, lower back pain, legs stiff up, hypersensitive, foggy brain, tinnitus, and digestive issues (in my case, non celiac gluten intolerance.)

Definitely worth checking out. If you have psoriasis, then odds are very good you've got the arthritis to go with it.

Click to shrink...

Fun times ahead!

 

[Android Sophia]

Fun times ahead!

Click to shrink...

Yeah, tell me about it. Hopefully it goes better for you than it has for me.

 

[Jay1V]

Hopefully my scalp psoriasis stays on my head and doesn't go to my joints or eyes

 

[Stronginthearm]

This thread just taught me there's such a thing as psoriatic arthritis. I found out I have psoriasis a month or two ago and my joints and back pain are very weak, I hurt them all the time... I suppose I need to check this out.

Last week, by chance, I saw the symptoms of fybromialgia and most things fit perfectly... I'm always exhausted, my sleep is shit, I have depression and anxiety, foggy brain, my neck is always super stiff and my lower legs completely stiffen up if I even pick up the pace a bit for a minute. I also have IBS and a weak digestive system, feel dizzy often, have tinnitus and the skin on my hands sometimes gets hiper sensitive (only happened a couple of times, but recently). I guess I have to book some appointments, I read that it's hard for men to get a fybromyalgia diagnostic.

Click to shrink...

My gp suspects I have both psoriasis and psoriatic arthritis and I'm on the waiting list to see a dermatologist to be officially diagnosed but the waiting lists here in Ireland plus covid mean I've been waiting a long time to be seen. Until then I have to get by with ibuprofen and paracetamol plus moisturizers.

 

[Android Sophia]

Hopefully my scalp psoriasis stays on my head and doesn't go to my joints or eyes

Click to shrink...

Mine's on my legs and feet. Coincidentally the areas most affected by my arthritis. Luckily, being on immunosuppressants has cleared it up significantly.

 

[msdstc]

This thread just taught me there's such a thing as psoriatic arthritis. I found out I have psoriasis a month or two ago and my joints and back pain are very weak, I hurt them all the time... I suppose I need to check this out.

Last week, by chance, I saw the symptoms of fybromialgia and most things fit perfectly... I'm always exhausted, my sleep is shit, I have depression and anxiety, foggy brain, my neck is always super stiff and my lower legs completely stiffen up if I even pick up the pace a bit for a minute. I also have IBS and a weak digestive system, feel dizzy often, have tinnitus and the skin on my hands sometimes gets hiper sensitive (only happened a couple of times, but recently). I guess I have to book some appointments, I read that it's hard for men to get a fybromyalgia diagnostic.

Click to shrink...

As a heads up, the majority of major autoimmune conditions will all tick the same boxes in terms of symptoms. Sjogrens, ankylosing spondylitis, RA, PSA, lupus, etc all have very similar lists of symptoms.

 

[Jay1V]

Mine's on my legs and feet. Coincidentally the areas most affected by my arthritis. Luckily, being on immunosuppressants has cleared it up significantly.

Click to shrink...

Oh I didn't know the areas were correlated. Do the immunosuppressants have any adverse effects?

 

[Android Sophia]

Oh I didn't know the areas were correlated. Do the immunosuppressants have any adverse effects?

Click to shrink...

I dunno if they're actually correlated, hence why I said it was a coincidence. I have joint issues in spots I don't have psoriasis too, such as my hands and hip.

I've been very lucky with the medicines I take. So far no major side effects. I tolerated the methotrexate VERY WELL, which I hear is not always the case.

 

[Jombie]

I'm going to book an appointment with a dermatologist because the psoriasis on my face is getting out of control. It used to be just a few small spots, now it's everywhere - it's especially bad at my hairline. I can't get a break from doctor visits.

 

[Wireframe]

Type 1 Diabetes represent

Click to shrink...

o/

 

[Merrill]

Aside from dealing with palpitations for like... entire days lately, last night my left eye began to ache pretty bad towards the back when I moved it or looked at my phone or smart watch. Might be having another MS relapse, unsure. Spine feels like it is dancing when I lay on my back.

Autoimmune diseases suck so bad. MS in particular is just like "fuck you, I do whatever I want" and it is unnerving.

Click to shrink...

Have you tried taking magnesium glycinate? Those helped my palpitations. I take one 200mg day.

 

[StopMakingSense]

edit: eh I wasn't adding much

 

[Valcrist]

Have you tried taking magnesium glycinate? Those helped my palpitations. I take one 200mg day.

Click to shrink...

I had Oxide. I can try Glycinate next maybe.

 

[Android Sophia]

Psoriasis and arthritis correlate very strongly. They don't need to be in the same location at all. There's even a version of the spondylitises that called Psoriatic Arthritis. Biologics for arthritis usually also target psoriasis.

Click to shrink...

I know, I have a pretty severe care of Psoriatic Arthritis in addition to mild psoriasis, and it affects my feet, legs, hands, wrists, arms, and lower back. What I meant was that the location of psoriasis doesn't always correlate to the location of arthritis.

 

[StopMakingSense]

I know, I have a pretty severe care of Psoriatic Arthritis in addition to mild psoriasis, and it affects my feet, legs, hands, wrists, arms, and lower back. What I meant was that the location of psoriasis doesn't always correlate to the location of arthritis.

Click to shrink...

Oh yeah I figured you did lol. I read deeper into the thread and realized the whole of the conversation and that you didn't need to be explained at, apologies.

For the record I have AS and had some temporary bouts of psoriasis following chemo for unrelated cancer.

once got it off and on on my penis, including the head, which sucked so much lol

 

[Android Sophia]

Oh yeah I figured you did lol. I read deeper into the thread and realized the whole of the conversation and that you didn't need to be explained at, apologies.

Click to shrink...

All good!

Psoriatic Arthritis is a giant pain tho. I'm doing laundry right now and it's taking everything I have just to go to and from the laundry room a few times.

If I ever get more money I'm moving to a fancy apartment with washer and dryer built in, haha.

once got it off and on on my penis, including the head, which sucked so much lol

Click to shrink...

You have my full sympathies. I once had psoriasis in places where you really shouldn't have something like that, and it was a nightmare to deal with, not to mention painful.

 

[The Boat]

Yeah, tell me about it. Hopefully it goes better for you than it has for me.

Click to shrink...

Thank you, I'm sorry to hear things didn't go great.

My gp suspects I have both psoriasis and psoriatic arthritis and I'm on the waiting list to see a dermatologist to be officially diagnosed but the waiting lists here in Ireland plus covid mean I've been waiting a long time to be seen. Until then I have to get by with ibuprofen and paracetamol plus moisturizers.

Click to shrink...

That sucks. I'm lucky that I was able to go to a private practice to take a look at my skin. Hope you can get an appointment soon!

As a heads up, the majority of major autoimmune conditions will all tick the same boxes in terms of symptoms. Sjogrens, ankylosing spondylitis, RA, PSA, lupus, etc all have very similar lists of symptoms.

Click to shrink...

Yeah I figured as much.

 

[DanteMenethil]

I hope CRISPR will bring therapeutics breakthroughs for psoriaris. Mine isn't too bad atm but I know it will only go worse with age and I'll be afflicted with arthritis when I get old.

Articles such as these gives me hope

News: CRISPR Delivery To The Skin With Microneedles - CRISPR Medicine

Using microneedles for transdermal delivery of CRIPSR-Cas9 and glucocorticoids researchers have found a viable way to precisely treat inflammation caused by conditions like psoriasis and atopic dermatitis.

crisprmedicinenews.com

 

[Android Sophia]

Looks like I'll be adding Sulfasalazine to my treatment, alongside the Methotrexate. I really hope it works, because my symptoms just keep getting worse and worse at a pretty rapid pace.

 

[divination]

I got diagnosed with psc in early 2019. I will be 43 in August. Shit sucks man. Having something so incredibly rare and no cure is devastating. The only good news is it usually slow progressing. A liver transplant can happen, though it cold come back. My bigger worry than the liver damage is it raises your chances of both colon cancer and liver cancer by a large percentage.

If I didn't know i had psc, I would be much unaware as. I don't have any symptoms of it yet. Only way I knew was some mild liver enzyme inflation for about 3 months. Since I've been diagnosed my liver tests have been normal. I have had 3 ercp's since 2019 to check on it and after the second one there was a cancer scare with some cells they found in the bile duct.

Click to shrink...

If you don't mind me asking, what prompted your doc to look for PSC? Was it the liver enzyme levels alone and then you just had an ERCP or did they try to rule out other causes first before going to the ERCP?

The reason I ask is because I have ileal Crohn's, which I've been in endoscopic remission for 5 years now after a bowel resection, but my ALP levels have been slightly elevated for maybe a year and a half now and I've been having some upper right-sided abdominal pain/discomfort that continues through to my right shoulder blade. I've mentioned the pain to my doc and I've had both an abdominal ultrasound (which looked at the liver, gallbladder, bile ducts, pancreas, and spleen) and a nuclear medicine gallbladder scan, both of which came back normal. I also have an upper and lower endoscopy coming up next month, so maybe that will shine a light on something. But my doc seems to want to go down the food intolerance route rather than something related directly to the liver.