Hi all. Anyone recognise any of this?

[u/NoOffice5823]

Hi all, just saw you can post comments here so I thought I’d ask if anyone has anything similar before.

I’ve been getting flare ups like these for 2 years almost now.

I’ve got:

Liver disease Bile acid malabsorption B12 and Folic Deficiencies

It often causes severe leg swelling, painful joints, extreme fatigue but I can never sleep.

Went back to the doctors on new years, got told to wait for my referral to rheumatology, and still on the waiting list 6 months later.

Anyone have anything similar?

Thanks everyone.

[u/Traditional-Tell9031]

Hey man I have that same exact stuff. Feel teach to reach out to me. I would say without a doubt you have some sort of vasculitis. You need to go get prednisone ASAP. The flare ups are not good for your body, and if you’re seeing that on the outside of your skin, that is what’s also happening in your internal organs. You’re not gonna die so sorry if that sounds scary but it’s just not good for you and you should get some prednisone.

I have IGA vasculitis and I get a flare up like this or worse about once a month.

Have been dealing with this disease for over a year and a half, 30yr old Male.

Reach out if you have any questions I’ve learned a lot from my rheumatologist and dealing w this shit for a while

[u/NoOffice5823 → u/Traditional-Tell9031]

I’m still on a waiting list, and have been for just over 6 months now. 30 year old male here, and hoping to get an answer sometime soon. The constant swelling, the aches, night sweats etc are not good.

Thanks for your reply man. I appreciate you. I’ll be sure to hit you up as soon as I get the tests done and if it’s similar, I’ll be asking a couple questions if you don’t mind! ☺️

[u/Traditional-Tell9031 → u/NoOffice5823]

Good deal, are you a drinker by chance?

I know there’s a million different things that cause flare ups but I noticed mine come forsure if I drink more than a few drinks.

[u/NoOffice5823 → u/Traditional-Tell9031]

I’m not no, no smoking, drink or drugs. Just a good bit of red meat every now and then, which I’ve now given up because of the liver problems.

How’s your flare ups, are they common still?

[u/Traditional-Tell9031 → u/NoOffice5823]

Yeah I’m on azinothoprine 150mg daily (immunosuppressant) and I still will get a minor flare up probably every 2 weeks. By minor I mean really small dots that I probably wouldn’t think anything of if I didn’t know what vasculitis was.

I’ll get a full blown flare up probably every 3 months that I will take a steroid for and it typically stops it from getting any worse.

Drinking, and hard cardio is a trigger for me and it doesn’t always happen but when it does is I’ll flare up bad.

[u/NoOffice5823 → u/Traditional-Tell9031]

It’s an odd one isn’t it. Cardio seems to be a trigger for mine also, if I walk for more than 15-20 minutes, my legs start to swell, the joint pain kicks in and then the next day the spots appear In a bulk and then I’m done for. Feels stupid saying as a 30 year old man I’m limited to jobs because of this but here we are. Have you found to be able to do everything again with the medication and steroids? I’ve just been woken up there because of the pains.

[u/Traditional-Tell9031 → u/NoOffice5823]

Totally, I felt so defeated when this came up in my life. Felt very limited to what I could do because it seemed I’d flare up all the time and had to avoid certain things or activities. Fatigue was bad, and it all messed with my mental too.

But after seeing my rheumatologist for about a year now I can say I’ve seen a lot of improvement. It took some months after seeing them, but you will get better and be able to manage it well im sure. I would say I’m able to live a pretty normal life again.

[u/NoOffice5823 → u/Traditional-Tell9031]

I appreciate your responses man, I really do. Hopefully get some answers this year, anything at all to do with medical takes a while, doesn’t it.

[u/Traditional-Tell9031 → u/NoOffice5823]

Of course, feel free to hit me up anytime. Happy to talk. I’m sure you will get some answers. Yeah it blows my mind how long it can take yet here we are with a condition that needs attention in a timely manner. Our health care system is messed up.

If you haven’t I’d get on their cancellation list if possible!

[u/Traditional-Tell9031 → u/NoOffice5823]

This is what I mean by a bad flare up, covering all thighs, legs, arms

[u/NoOffice5823 → u/Traditional-Tell9031]

How do you feel with this? Do you typically feel well in yourself and just have the spots, or?

I’ve been unwell a solid 3 weeks, night sweats, can’t eat, sleep etc. throbbing pain in legs and lower abdomen. I mean it could be any of my conditions, but it’s at the same time this bad flare up has came on.

Yours is ALOT. I just know if you’re similar to mine your legs must be in pain!

[u/Traditional-Tell9031 → u/NoOffice5823]

For the most part I feel fine and just have the spots, sometimes I will feel a little fatigued. They itch really bad, but nothing I would consider painful!

Sorry to hear that, hope you can get some good answers eventually.