So, you've just been diagnosed with a chronic disease -

[hedgehog]

My rheumatologist wrote down a web address on the lupus brochure - (he was out of the Sjogren's brochures) and said he's see me in a few months unless I had a flare before then. he suggested I might be going on prednisone. The guy meant well, but he's a specialist. I think he'd be great for stiff joints, but my impression is that for anything else, he drops the ball.

So - I got out every book the library system has on Sjorgen's and found out that yes, fatigue is a major complaint, that my GERD was probably due to Sjorgren's, that my dry cough was likely a symptom ( and that the Singulair I've been taking for years has been shown to be effective!), that the salmon oil and Vitamin E I've been using are recommended, etc. I've made an appointment with my optometrist to be evaluated for dry eyes and to see what he recommends for now. (Having lived with allergies all my life, I'm used to ignoring minor complaints, so I want a professional opinion on this!) I have the special toothpaste sitting up on my sink counter right now, and a glass of water at my desk.

I showed the rheumatologist a problem with my eye, and he indicated he didn't treat eyes. I took it to the dermatologist, who suggested an opthamologist. My optometrist may be able to solve the problem when I see him next week. I'm 99% sure it's some aspect of Sjorgren's.

I'll be seeing my Family Doctor and asking him about planquenil vs. prednisone and how to bring that up with the rheumatologist.

I'm doing all this having raised several kids with autoimmune disorders. I know that generally there is a main symptom and then a cluster of secondary symptoms that may themselves be the more serious problem. I also know that most specialists just don't have the time to do the proper patient counseling on how to live with a chronic illness.

The point is - the best way to take care of a chronic disease is to be your own advocate. Get out there, get educated and be proactive!

[NightWatcher]

1. Oh goodness yes. I've been diagnosed for only 2 months

but I fear that I know more about my conditions than do either my rheumy or my PCP. I research online, talk with others who have similar situations, and compile what all my Dr.s say. I take what the Nephrologist says and then ask the Liver Doc about what the rheumy says......and then think out what's best for me. For example, my rheumy wants to put me on a chemo drug, Azathioprine, to wipe out my immune system and hopefully knock out two of my conditions. One of the side effects of it however is liver damage. So I asked my liver guy if I should do it and he said he'd monitor me extra close for liver problems, but he wouldnt have checked me out had I not said something in the first place.

Another thing I might add to your post. GET AND KEEP YOUR COMPLETE MEDICAL RECORDS. I get a printout every time I go and I add it to the huge binder that has everything about everything, including from my time in the hospital. I keep a running log of my lab results and Dr.'s notes. I reread everything to make sure that someone isnt missing something else.

Like you said, You are your own best advocate. You are your own Doctor from now on. Your life and treatment are in your own hands.

Take care of yourself

Me: SLE, Lupus Nephritis, Dermatomyositis, Raynaud's....

[unapatriciated]

12. My son was on Cyclosporine and Methotrexate for years (1991- 2010).

He was diagnosed with Dermatomyositis in 1991. Doctors were unable to control it and recommended two rounds of Chemo than maintenance dosages of Cyclosporine and Methotrexate. He was also taking Prednisone, Plaquenil and a host of other drugs to counter act the side effects of those four drugs. His rheumatologist suggested he take milk thistle to help with liver damage. I agree with you on getting copies of complete medical records. I kept a file for my son that I gave to him when he left home at 23. Having this file has helped him many times in regards to treatment and control of his disease.

http://www.umm.edu/altmed/articles/milk-thistle-000266.htm

[Warpy]

2. I know all about SS. And SLE. And GERD. And IBS. And RA

so ask me anything.

Sjogren's Foundation: http://www.sjogrens.org/ It used to be called "Moisture Seekers" but the board realized the cutesy poo name was turning a lot of sour sick people like me off so they went dignified. The newsletter is very informative and is still called "Moisture Seekers." They have a lot of good, solid everyday information as well as information about new drugs and treatments coming down the pipeline.

Plaquenil is a good drug but you'll need your eyes dilated and retinas looked at every 6 months. The retinal complication is rare and if caught early, won't threaten your sight completely.

Methotrexate is now also a first line drug. I took mine once a week and felt wiped out for that one day a week but the rest of the week was worth it.

Prednisone has a whole list of horrible side effects. If you need it, take it. Just realize that it will make the GERD worse and put you on an emotional roller coaster for a while. I've been on it for over 20 years, meaning you can get used to anything.

Gold salts, used in simple RA, aren't recommended for SS as a first line treatment because of increased pulmonary complications. They'll try them when you start running out of other drugs due to side effects.

The one other thing I would strongly suggest you get is a good medical dictionary. While you can look up Medicalese online when you're reading articles that are full of it, it's easier just to have the dictionary in your lap. I like Mosby's about the best but it's expensive, even in paper. http://www.amazon.com/Mosbys-Dictionary-Medicine-Nursing-Professions/dp/0323052916/ref=sr_1_8?s=books&ie=UTF8&qid=1339868518&sr=1-8&keywords=medical+dictionary

ETA: one person to educate besides your GP is your dentist. I educated mine and he went on to diagnose two other cases that were confirmed via blood work. He was so happy! I'm just glad that two people who were going around feeling lousy and beating themselves up for being wimps found out they're really sick.

[hedgehog]

3. Saying that Sjogren's amounts to dry eyes and dry mouth seems to trivialize

it when placed next to the big guns like Lupus and RA. I'm slowly learning that the hallmarks are no picnic and that the other symptoms can be pretty nasty. So far my biggest problem is the fatigue.

[Warpy]

4. It's not a trivial disease

because the whole endocrine system is under attack along with several organ systems. Then there's the arthritis.

"Dry mouth" is not trivial. I know people who have feeding tubes because they can't swallow. I know people who have had ulcerated corneas and blindness from dry eyes.

It's something you really have to take care of so you can avoid the worst complications like kidney and lung damage.

Unfortunately, my teeth turned out to be a lost cause. However, I've managed everything else very well since my diagnosis 38 years ago.

[hedgehog]

5. Thanks, I needed to hear that!

[libodem]

16. I have a friend with SS

She is a naturally hard worker. The fatigue is a battle for her. She complains of dry everything. Poor woman.

I have the chronic pain of failed back surgery. But I have had my share of steroid injections and a few oral tapers. The prednisone made my normal blood sugar go to 120 about the top of normal. I had protein in my urine as well. Ate up my stomach made me jumpy and crabby. I disliked it very much.

[vegan-magazine.com]

6. Chronic disease is caused by chronically eating wrong

All autoimmune disorders, plus cancer, diabetes and heart disease are caused by chronic inflammation from consuming inflammatory foods and beverages -- all animal derived foods plus sugar, sugar substitutes and preservatives. You can reverse and cure all these diseases by converting to an anti-inflammatory, plant-based vegan diet: organic greens, vegetables, potatoes, herbs, spices, beans, lentils, peas, fruit, and gluten-free whole grains such as brown rice, quinoa, and oatmeal. It's what your body is meant to have for nourishment and you'll never feel healthier, happier and more vibrant. Plant foods are cruelty-free and alive with nutrients that protect your body, organs, eyes, skin, etc. Animal foods are dead, slaughtered, cruel and extremely acidic and inflammatory to your body causing disease and death. Good books to read: Skinny Bitch; The China Study by T. Colin Campbell; Crazy, Sexy Diet by Kris Carr; Prevent and Reverse Heart Disease by Caldwell Esselstyn; and anything by Dr. Neal Barnard.

[NightWatcher]

7. Oh go fuck off, er I mean Alerted

Shit, this person is a doctor, hell maybe even a shaman since they seem to know where all autoimmune diseases come from. Looks like they created a whole screen name just to preach veganism to us. I'm sick and I don't need them. My diseases were passed to me genetically and have nothing to do with food or animals.

[Iggo]

8. "Vegan spam"

Ironic? Oxymoronic?

Both?

[kdmorris]

9. Yeah, whatever

Another "blame the victim" post... and in THIS group too... I agree with the first answer to you... go away. I WISH that it was all caused by chronically eating wrong... then I could magically eat right and never have another high or low blood sugar, colitis flare or have to be my own thyroid.

This post is just a cruel joke... in a group that is meant for support for people who are suffering through these diseases.

[Make7]

10. Can you reverse and cure chronic stupidity with a vegan diet?

Your post would appear to be evidence to the contrary.

[div style="width:100%; border-bottom: 1px solid #bfbfbf;"]
[div style="margin-left:2.9em; text-indent:-2.9em;"]ETA: Malware Warning from Google:
http://www.google.com/interstitial?url=http://vegan-magazine.com/

[Warpy]

11. Alas, it seems to increase it among too many adherents.

Our victim blaming "friend" has had a pizza delivered.

Thanks for the malware warning.

[uppityperson]

13. Going to that site results in MALWARE warnings so beware. Poster has been banned for spam also.

[brzysunset]

14. Predisone

I was diagnosed with Polymyalgia in the arthritis- auto immune area. I am also diabetic. When I went to the rhumatologist he wanted me to take predisone for one year. I read about it and thankfully I didn't take it. My MD gave me a couple 10 day intervals of predisone and I take Naproxen when I really feel my muscles tense.

My diabetes is kept in very good control. I eat well and try to keep it that way. Predisone can make you become a diabetic even if you weren't one. It can make a diabetic's blood levels uncontrollable. So read about it before agreeing to take predisone for a long period of time. Naproxen can cause stomach bleeding and the pharmacist says to take it with prilosec to coat the stomach lining first. Point always know what your taking and what the side effects are!!

This is my problem, maybe you and the members here can also help me. It is not always the US Government that does the oppressing to Native Americans!! The Seminole Tribe of Florida is denying tribal members of other tribes to use their health facilities as of 7-1-12 for any chronic problem if your are not Seminole, yet my Choctaw Nation of Oklahoma tribe sees every person of Native American heritage with a Indian card, (CDIB). So who is the oppressor? (IHS) Indian Health Services meant long ago for all Indians to have access to medical care wherever they lived, not just the area of their tribe. The Seminole Health states they will no longer treat anyone not Seminole for chronic conditions. Diabetes is a chronic condition and is prevalent in all our Indian families. They will see us for acute condition- short term duration like the flue and Indians living in Florida with Diabetes or other chronic illness patients are now uninsurable and thrown to the wolves. If you can help by faxing or sending letters stating this is unfair treatment, I would appreciate it. I am Choctaw and my tribe Choctaw Nation of Oklahoma treats all Indians of all tribes in clinics across Okla.
Connie Whidden is the Seminole Health Director- Her Fax [phone]-Phone [phone] address Seminole Tribe of Florida 3006 Josie Billie Ave., Hollywood, Fl. 33024

Thank you for allowing me to address this issue on your thread. Today is my first day as a member at DU, and they won't allow me to start my own thread yet. I am in tears, I was insurable when I started going to their clinic 7 years ago. Now that I have diabetes I can no longer buy affordable insurance. The govt insurance is $370.00 per month for one person my age (55).If the Seminoles can do this to me, it can be done to any Indian anywhere.

[hedgehog]

15. Prednisone - I have one son with severe asthma -

it doesn't hit him with a sudden attack but acts like a flare. When he was little, he'd lose lung capacity over a few days. I'd use every trick I knew to get him opened up just to avoid going to the prednisone. The few times we had to use it though, it was a literal life saver!