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karrie
New Member


Date Joined Apr 2009
Total Posts : 10
   Posted 3/1/2010 8:00 PM (GMT -7)   
i am looking for people with multiple autoimmune diseases. i'm really frazzeled. i've had lupus for 20 yrs. more recent diagnosis's are ankylosing spondylitis,hashimoto's thyroiditis, gastroparesis, and now diabetes. i was taking cellcept due to constrictive pericarditis. now i have to go on methotrexate. there's nothing much i can eat due to the gastroparesis, now with the the diabetes i don't know what to do. anyone going through anything like this???

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/1/2010 9:40 PM (GMT -7)   
Hi Karrie, wow you have things going on with you that I can't even pronounce. and 20 years at that! I'm sorry you are having such a rough time of it. I know there are other people in this forum that have the same things you do or at least some of them share the same things. I realy can't help you with it but I saw your post and I had hoped some one was one that could give you some answers. I guess it is getting a little late at night. You know how that goes. lots of sleep. But I just wanted to say you are not alone here. I'm sure there will be people on in the a.m. that will be of some help. As for me all I can say is You are not alone. we all have things we are going thru. That's why the group works so well. If we didn't have each other I don't think to many of us would manage as well as we do. I guess I need to get to bed but I just wanted to say welcome to the group I'm sending you gentle hugs and prayers and I look forward to getting to know you soon.
hugs
carol
Lupus lung, maybe, scleraderma maybe, another A/I maybe, Hang nail maybe. COPD
meds to many to fit in my 10 lines. but last count was 28.

 Jesus loves you and so do I!
 
 


karrie
New Member


Date Joined Apr 2009
Total Posts : 10
   Posted 3/2/2010 7:24 AM (GMT -7)   
thank you for reaching out. is methotrexate one of your drugs? i start it in 2 weeks and am a little nervous. i've had lupus lung before

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/2/2010 7:29 PM (GMT -7)   
Hi! Unfortunately, I haven't dealt with the issues you named either. Along with Okie, I just wanted to say hang in there and keep checking back. There are plenty of people who will be able to offer some sound advice. I know plenty of people have taken methotrexate. I certainly pray that it works for you. God Bless you, Judy

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/2/2010 7:36 PM (GMT -7)   
Hi Karrie, welcome to the forum!

I too have several auto-immune diseases' and take Methotrexate among other meds. I have tolerated it well, I think one of the main side effects is nausea but I think there is a med your doctor can prescribe that counter acts it but I'm not sure what the name is, my rheumy gave it to me but I didn't need it. Be sure to take your folic acid with it! Your doctor should also monitor your blood work, I go every 2 months to make sure I'm tolerating MTX and Imuran.

I pray it works well for you and that you see an improvement in your health. Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 3/2/2010 8:37 PM (GMT -7)   
karrie said...
i am looking for people with multiple autoimmune diseases. i'm really frazzeled. i've had lupus for 20 yrs. more recent diagnosis's are ankylosing spondylitis,hashimoto's thyroiditis, gastroparesis, and now diabetes. i was taking cellcept due to constrictive pericarditis. now i have to go on methotrexate. there's nothing much i can eat due to the gastroparesis, now with the the diabetes i don't know what to do. anyone going through anything like this???


Hi Karrie,

Welcome to the forum! This is a good group to be involved with....lots of kind, caring people here! I'm glad you found us, although I'm sorry to hear about all of your diagnoses!

I too have multiple autoimmune diseases, including lupus and hashimoto's. I don't have gastroparesis, but a friend of mine does, and she says that the main dietary recommendations include eating several small meals which are low in fiber and low in fat. With diabetes, you should probably watch your sugar and simple carbohydrate intake too.

Here's a sample eating plan I found online at www.motilitysociety.org:

Gastroparesis Dietary Recommendations

But this is also a topic you might want to bring up to your doctor....have you asked him/her about diet?

Good luck with everything! Please keep us posted!
(((((hugs)))))
JoAnn
Lyme Disease, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L4 and L5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 3/2/2010 8:40:56 PM (GMT-7)


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/3/2010 8:38 AM (GMT -7)   
Hi Karrie,
 
I have RA and I also have Gastroparesis, although not brought on by diabetes.  I'm so sorry you are struggling with GP.  It really impacts your life and limits what you can and cannot eat on a daily basis (especially with diabetes thrown into the mix).  How severe is your GP, can you eat solid foods?
 
Hugs to you!

karrie
New Member


Date Joined Apr 2009
Total Posts : 10
   Posted 3/3/2010 8:58 AM (GMT -7)   
thanks for your info. i eat peanut butter and jelly,yogurt'bananas. itried eating a tiny peice of chicken for my daughter' birthday but (not to be gross) i got sick 24 hours later and the chicken came back up totally undigested. i'm going on insulin for the diabetes, since i have no choice but to eat mushy carbs. it'd the most frustrating thing ever!

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/3/2010 7:29 PM (GMT -7)   
Karrie,
 
Yes, it is frustrating I agree! For me, I can eat the peanut butter and Jelly without the bread! I think I have made every smoothie there is to make, and there is nothing worse than eating something only to have it come back to visit latersmhair If you like, I can give you a link to a wonderful support board that is geared just for GP, great people and caring advice.

karrie
New Member


Date Joined Apr 2009
Total Posts : 10
   Posted 3/3/2010 8:28 PM (GMT -7)   
i'd love that thank you so much

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/3/2010 10:49 PM (GMT -7)   
I just wanted to say welcome, I am so sorry you are dealing with all of this. I don't have your conditions but I do have a problem with my spine, we found that enbrel helped with the pain though no one has a clue why but I had heard it might be an option for treating your spinal condition, sorry can't recall how to spell it and too tired to scroll around. I just wanted to toss that out there as a possibility. My hubby has type 2 diabetes and found that medication helped him more than changing his diet ever did for some reason. No idea why but he can eat an almost normal diet as long as he takes his pills twice a day. I really hope insulin works for you. I used to eat and then get sick 24-48 hours later and the food would be undigested. I had my gallbladder out and suddenly that problem stopped being a problem but I know that likely wouldn't work for someone who gallbladder was normal. I just wanted you to know I totally understand though about the odd diet you have to follow when the stomach is slow to empty, I can recall eating half a cup of soup and being full for 2 days it was hard because everyone around me wanted me to eat more and when I did it made me ill. Listen to your body when it comes to food and your doctor of course. I had heard there was medicine to help with slow emptying stomach but can't recall where I heard it. I also heard about experiments using a pacemaker like divise. Just ideas for research. Sorry I am rambling and likely not making sense. Just remember we are here to listen and hopefully someone with some knowledge will come along and make more sense than me.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


karrie
New Member


Date Joined Apr 2009
Total Posts : 10
   Posted 3/4/2010 6:46 AM (GMT -7)   
thanks for your thoughts. unfortunately the drug is banned in the us,because it can cause sudden cardiac arrest and i have heart problems. the pacemaker isn't for lupus patient because a forgein body in your body would lead to major problems. it's great to talk to all of you helpful kind people
 

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/4/2010 10:19 AM (GMT -7)   
Hi Karrie,
 
The link is www.inspire.com and hopefully this will take you to the homepage and not to mine!
 
The first time I checked to see if it worked, it went to my homepage for some strange reason!
 
The Domperidone that you mentioned is a scary medication! There is good reason that it isn't approved by the FDAshakehead  However, some do take the Reglan, and I did for a short while, although it gave me migraines, so I just try to manage with diet.
 
Best wishes and I hope you find support at the Inspire boards. 
 
 
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