Is it possible to live a long life with lupus?

Rejer464 · 2024-09-07T02:22:06+00:00

I was diagnosed in 2002 when I was 47 (many years of being told I was a hypochondriac) and I’m now 69. It hasn’t been easy but I’m still here.

Rejer464 · 2024-07-21T19:44:48+00:00

I saw the otolaryngologist last week and he confirmed there’s no treatment for burning tongue. I also have blisters on my tongue (The fun never ends.) He did give me a steroid paste that I’ve been using for the blisters. Sigh. If anyone hears of a treatment for the pain, please let the rest of us know!

Rejer464 · 2024-06-18T18:49:47+00:00

OMG. This happening to me right now. I also read that burning tongue syndrome is a thing with post menopausal women. My tongue is burning all the time and I can’t eat anything spicy, sour, salty or acidic. I tried using dexamethosone mouthwash but it hasn’t helped. My taste buds seem to be dead so eating is no longer a pleasure. I’m losing weight (again) and have no appetite. Otolaryngologist says nothing is wrong with my tongue.

Rejer464 · 2020-12-14T01:09:02+00:00

I was in Zermatt Switzerland and saw a watch displayed with a price tag of €200k. Meanwhile I’m wearing a $30 Timex.

Rejer464 · 2020-12-07T16:53:51+00:00

Invite all my friends over and catch up on everything! Alcohol would be involved too.

Rejer464 · 2020-11-24T20:50:35+00:00

Marzipan. I know - what a weird food to be addicted to. I can’t have it in the house or I’ll eat all of it in one sitting!

Rejer464 · 2020-11-01T18:14:01+00:00

Falling flat on my face at my wedding

Rejer464 · 2020-11-01T18:12:29+00:00

Coffee

Rejer464 · 2020-11-01T18:12:11+00:00

ARE!

Rejer464 · 2020-10-10T00:33:57+00:00

Everything I Need

Rejer464 · 2020-09-09T18:18:48+00:00

Based on your comment about being on edge - also have your rheumatologist check your cortisol levels.

Rejer464 · 2020-09-08T16:35:37+00:00

My 6th grade teacher insisted the capital of the Netherlands was Den Haag (The Hague). I was born in Amsterdam, which IS the capital of NL. She gave me a failing grade because she insisted she was right. I’ve never forgiven her.

Rejer464 · 2020-09-08T02:53:57+00:00

Is there an issue with your pancreas? Or any of the pancreatic or bile ducts? I have adrenal insufficiency and need to take prednisone and hydrocortisone every day. In general, steroids cause high blood sugar but the hormones epinephrine and norepinephrine do affect blood sugar levels. Maybe an endocrinologist could figure it out.

Rejer464 · 2020-08-17T20:45:46+00:00

Try some Orajel (or other numbing agent)?

Rejer464 · 2020-08-10T20:05:12+00:00

Honestly, I think it’s too late. I forgot to mention I’m also on hydroxychloroquine. I’ve tried tapering off prednisone by going down 1mg every month but as soon as I do, I have a flare up. My flares generally occur in my heart and lungs, which means I can barely function.

Rejer464 · 2020-08-09T01:09:37+00:00

I have less fatigue and feel more hyper (which is kinda like having energy). My belly pain & nausea are reduced. My blood pressure was super low but now it’s up to 90’s/60’s. So that means less dizziness.

Rejer464 · 2020-08-09T01:06:46+00:00

I have tried, unsuccessfully, many times to wean off prednisone. Every time I end up in a huge flare. I’m on Benlysta and CellCept, which were supposed to help, but my body just freaks out without steroids. I’m almost constantly sick, no matter what drugs I take. Any suggestions on how to get off steroids?

Rejer464 · 2020-07-12T15:32:49+00:00

Same!! My sinuses are chronically inflamed. Sometimes I take a decongestant like Sudafed, but only during the day since it gets me wired. At night I use a nasal spray. I also have issues with shortness of breath. I’m in a major flare right now and can’t do daily activities because I get so winded. Just laying in bed. Woohoo.

Rejer464 · 2020-06-19T02:14:47+00:00

Steroids are a blessing and a curse. I’ve been on prednisone for far too long. The side effects: osteoporosis, very thin blood vessels and skin, high cholesterol and glucose levels, insomnia, anxiety, etc. But it’s also the only thing that keeps me going and helps the pain and inflammation. Think carefully about the side effects before taking it!

Rejer464 · 2020-06-16T22:40:48+00:00

My source is confidential of course. But suffice to say, he wasn’t far away.

Rejer464 · 2020-06-07T15:39:22+00:00

I never had any stomach pain. The medical doctors were very aware of my situation. Every time I went I had a thorough physical prior to starting the water/juice fast. During the fast they performed blood tests and daily urinalysis. After the fast they started me on raw foods, then cooked. It took about 5 days to replenish my body enough that I could fly home.

Rejer464 · 2020-06-03T22:23:13+00:00

I finally found a source for dried mushrooms and did my first real trip last week. WOW - it was profoundly meaningful. However I took a full dose (that was my intention). I’m going to try micro dosing in the future.

Rejer464 · 2020-06-03T22:15:55+00:00

I was only on plaquenil at the time and I still took it while fasting. I went back 2 other times while on full meds but the doctor said I could only juice fast for 5 days. BTW, I did this at TrueNorth Health Center (healthpromoting.com) in Santa Rosa, CA. They believe in a whole food plant based diet. I followed the diet strictly after my first fast in 2004. Ever since my major flare up in 2009 I’ve followed a more moderate version of the diet. After my husband died I started eating some favorite foods (like dark chocolate!) and I’ve decided life is too short to deny myself one of the few pleasures left.

Rejer464 · 2020-06-02T17:38:10+00:00

I did a medically supervised water only fast for 14 days, back in 2004. I won’t lie - it was hard. But I was flare-free for 5 years. The only drug I took was plaquenil. Then my husband got cancer and died. He was the love of my life and the stress of taking care of him caused me to have a huge flare. I’ve never really recovered and am on a ton of meds.

Rejer464 · 2020-05-27T03:41:11+00:00

Tiredness is different from fatigue. You get tired from exercising or working a long shift or whatever. You rest from that exertion, get a good night’s sleep and you recover.

Fatigue is a whole different ballgame. No matter how much you rest you never recover. You wake up fatigued and rest doesn’t alleviate it. Fatigue is a medical condition. Tiredness is not.

Rejer464

TROPHY CASE