How is everyone? Check in!

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Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 8/14/2016 12:52 PM (GMT -6)   
Been quiet here on the forum lately, how is everyone doing? Join us & check in!

I've been struggling with depression -- sitting down in a black hole, and the flashlight isn't working very well. Lupus symptoms quiet, life in general okay, just something going on I haven't yet identified. Been eating better, so am wondering if it somehow has something to do with that. No sugars, no processed carbs... something is sure messing with my brain chemistry!!!

Let us know how YOU are doing!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

keithvb
New Member


Date Joined Aug 2016
Total Posts : 8
   Posted 8/14/2016 1:59 PM (GMT -6)   
What's the deal with food & lupus? Are some bad for lupus? I've read to avoid alfalfa sprouts but are there more? Are any foods particularly beneficial?
Male, 73 yrs, Dx: 10, 2016, Lupus nephritis, Rx: Lisinopril 10mg, Pradaxa 300mg, Cellcept 3000mg, Plaqueni 400mg, Prednisone 5mg, Fossamax 35mg/wk, Bactrim 150mg 3x/wk, ViT D2 & D3, Calcium 1000mg, Iron130mg, Multi Vit

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 59
   Posted 8/14/2016 3:57 PM (GMT -6)   
From John Hopkins
www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/

[Just edited to make link live.]

Post Edited By Moderator (Lynnwood) : 8/14/2016 3:20:41 PM (GMT-6)


keithvb
New Member


Date Joined Aug 2016
Total Posts : 8
   Posted 8/14/2016 7:44 PM (GMT -6)   
Thanks Tinkerbee..
Items 1, 2 & 3 relate to me.I'll talk to the rheumatologist about switching to something else.
Male, 73 yrs, Dx: 10, 2016, Lupus nephritis, Rx: Lisinopril 10mg, Pradaxa 300mg, Cellcept 3000mg, Plaquenil 400mg, Prednisone 5mg, Fossamax 35mg/wk, Bactrim 150mg 3x/wk, ViT D2 & D3, Calcium 1000mg, Iron 130mg, Multi Vit

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/14/2016 11:13 PM (GMT -6)   
Well, I've officially have vitiligo now. The rheumatologist agreed I had it.

My PsA has got my feet inflamed more so. I have to rub Salonpas into my feet so I can sleep better. The pain keeps me awake.

Lupus has been playing in my gut again. Swinging from gas, flatulence, upset, and constipation and back again. Ugh!

This summer has been rough on me and my family. My middle brother's MIL, my aunt, my oldest brother all died suddenly. My sister has a nervous breakdown and is hospitalized for 31 days. I had to stay with her for six weeks until she was deemed well again.

I'm just beat right now.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 8/15/2016 8:18 AM (GMT -6)   
Joy,

So sorry the Lupus is playing in your guts. I really hated that period of my Lupus -- I had episodes of instant dumping. Worst times were riding in a car somewhere, when without warning I'd get sharp stomach spasms followed almost immediately by the need to vacate. No time to even pull my pants down IF I'd been in a position to do that! Made for some embarrassment and some spectacular messes.

Sounds like a horrid summer for you, sure hope the fall has things looking up!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 8/15/2016 8:47 AM (GMT -6)   
So far 69 people have viewed this thread, but only one person has checked in and let us know how life with Lupus is going for you!!

We're all in this together folks!

spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/15/2016 8:33 PM (GMT -6)   
Hi! I didn't know that our posts are visible for the public to read, but I haven't been on this site for quite some time.

I hope everyone is doing okay. #StrongerTogether
Worry is anxiety backed up by excuses invented by the mind. -Deepak Chopra

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 8/16/2016 12:58 PM (GMT -6)   
Yes, anyone/everyone can read the posts on Healing Well. A reader must be a member to post or to look at the details of your profile. It's always been that way...
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 8/16/2016 10:18 PM (GMT -6)   
Not a lot of activity on the board, lately. Hoping that means everyone is busy and doing well. I've started a course of physical therapy to try and alleviate worsening pain along my spine and hips. Hoping it will help although it is too soon to see any results, yet. Hard to believe it has been 14 years since my diagnosis. So far, so good. Ups and downs, but I just keep on going!
Take care, Fran

BreRosie
Regular Member


Date Joined Jun 2016
Total Posts : 60
   Posted 8/17/2016 12:25 PM (GMT -6)   
Things for me have been pretty good the past week and half or so. I ended up taking the prednisone my doc had suggested and then called my doc to update him. He told me to keep taking it everyday and moved my appt. from Oct. to Sept. I don't know if the pred. is helping or if the hydrox. is finally working ,either way I'm not complaining. Hope things are going good for all of you!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 8/17/2016 2:32 PM (GMT -6)   
Hi Fran & BreRose,

Thanks for checking in! It's always nice to hear how other people are doing with their Lupus journeys.

Fran, I make myself go to the gym 3x a week and work out for at least an hour - otherwise my hips, knees, and ankles get so stiff I can hardly move!! Hope the PT helps with your pain, I think it will!

BreRose, Hydroxychloroquine works by slowing the disease progression, and in a lot of cases we patients don't believe it's working until we stop it and find out where we're really at! Glad the prednisone is working for you -- it can give you horrible, physical cravings for sugar and carbs. If you are on it very long try really hard to stick to proteins, veggies, and fruits!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 8/17/2016 4:19 PM (GMT -6)   
Ok overall but lupus keeps attacking my platelets so I was on prednisone for a couple of months which raised them out of the danger zone. My life has been a wreck ever since one of our sons died 14 months ago and his only son came to live with us. He has mental health issues but moved out a few weeks ago and we are trying to put our own lives back to normal, whatever that is.

In short physical health OK (no problems with polymyositis) but stress levels over the top for the past 18 months. Hope for a quiet rest of the summer and looking forward to immersing myself in skiing this winter.

Hope everyone else is doing well.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 8/17/2016 4:41 PM (GMT -6)   
Oh, Bill, so sorry to hear about the loss of your son and the resulting uproar. Stress is so hard on people in general, but when it's compounded by diseases like ours, AND accompanied by aging... oh my gosh, I hope things get easier for you soon.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 8/17/2016 8:53 PM (GMT -6)   
Lynnwood, I hope you are finding some answers for your recent struggles. Once depression grabs a hold of us, it can be very difficult to shake. I have been there more than once and I feel for you. Please know that positive thoughts are being sent your way.

Thank you for mentioning the gym. Because I am a long time CellCept user, I tend to avoid crowded places. Perhaps I should reconsider that decision. The therapy is both in a pool and on land. So far, they have been very "gentle" with me but I have already been warned that tomorrow they will ratchet up the difficulty. Once the therapy ends, I am considering continuing on my own. Hoping it helps.
Take care, Fran

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 8/17/2016 9:40 PM (GMT -6)   
I was on Cellcept (what I call my miracle drug, it really turned my Lupus on it's head) for about 2 years. I knew the warnings about being out with people, but mostly it was children (and all their colds) that I avoided. I never felt like it was dangerous to go out. However, I do understand having concerns about a sweaty gym.

The gym I use is very small, it only has 4 trainers (usually only 2 of them are working) and isn't open to the public - that is, if you aren't with a trainer you aren't there. Maybe you can find something small that will work for you -- maybe a smaller yoga studio or something that will get you moving?

Thanks for the concern, Fran. I've dealt with chronic depression for about 35 years, so have a lot of tricks up my sleeve! I know that, "This too shall pass". Just hoping for sooner rather than later, ya' know?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

BreRosie
Regular Member


Date Joined Jun 2016
Total Posts : 60
   Posted 8/18/2016 2:29 PM (GMT -6)   
Lynnwood, My daughter was on cellcept from ages 2-7 for her kidney disease. It stopped working after that but it kept things in check for a few years. Its amazing how some drugs can be used for so many things! My daughter (now almost 12!) has been taking prednisone on and off but mostly on since she was two. Unfortunatley she has developed cataracts from it and we are slowly weaning her off. It seems every time we get close she starts spilling more protien... its a vicious circle. I was really hessitant to take the prednisone but I felt so crappy and I just couldn't take it anymore.

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 242
   Posted 8/25/2016 11:16 AM (GMT -6)   
Hi All, I have been feeling great! Still taking plaquenil and my lupus antibodies are slowly decreasing. My rheumy thinks (hope, hope) that I have drug induced lupus and it is just taking a long time to subside. Anxiously awaiting retest of my antibodies in November for confirmation. Hope everyone is feeling well and that's why the board has been so quiet. Wishing everyone good health!
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Feb, 2016
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid, Hydrocort Enemas; Prilosec; Iron; Plaquenil; Vit D; Uceris
Past Meds: Lialda -initial DX Drug Induced Lupus , discontinued mesalamine, symptoms returned - less severe, DX Lupus new DX DIL as some antibodies are now negative, pending add'l tests Nov 2016

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/25/2016 11:00 PM (GMT -6)   
I had a vertigo test on Tuesday which has set me into a flare. I feel like a big truck ran over me. I figure having to lay under fluorescent lighting at the doctor's office without my hat overexposed me to UV rays.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Stones
New Member


Date Joined Mar 2006
Total Posts : 11
   Posted 9/25/2016 3:19 AM (GMT -6)   
Hello, I haven't been around in quite a while, though I should have been.

My diseases are pretty much okay, with the occasional flare. Stress is out the roof. My husband has stage 4 metastatic melanoma. He had brain surgery in June and radiation and is being treated for the rest of the mets that remain (bone, lung, brain).

I'm finding that my physical and mental energy is in the basement. Hard to find ways to stay happy. I am grateful for every day we have together, but it's so hard watching him go through this. We have been together for 30 years - he has been my rock through my own illness.

Anyway, hello strangers ;)
DX MCTD 2006, Pericardial Effusion 2006 (still there), Polycystic Kidney Disease 2006, Fibromyalgia, Microscopic Colitis, Asthma
Currently taking Methotrexate, Plaquenil 200mg 2x a day, Bystolic, Valsartan, Flonase, Lyrica, Rheumate, Cymbalta, Singulair, Breo

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/25/2016 6:54 PM (GMT -6)   
Oh my, Stones! I'm so sorry your husband is battling cancer.
It's a mean disease. I hope there is some relief for both of you soon.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Stones
New Member


Date Joined Mar 2006
Total Posts : 11
   Posted 9/26/2016 2:13 AM (GMT -6)   
Thank you couchtater <3
DX MCTD 2006, Pericardial Effusion 2006 (still there), Polycystic Kidney Disease 2006, Fibromyalgia, Microscopic Colitis, Asthma
Currently taking Methotrexate, Plaquenil 200mg 2x a day, Bystolic, Valsartan, Flonase, Lyrica, Rheumate, Cymbalta, Singulair, Breo

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 9/26/2016 8:12 PM (GMT -6)   
Stones I am so very sorry to hear of your husband's cancer and from reading what you've been through it saddens me to hear that he can't be your rock now. I have a rock too.
I know that your husband is extremely grateful for everything you do for him and that he is acutely aware of how hard this is on you (even if you think that you should do more).
I am sending you lots of love and I will hope and pray for the very best. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Stones
New Member


Date Joined Mar 2006
Total Posts : 11
   Posted 9/28/2016 2:59 AM (GMT -6)   
Thank you so so much Butterflake. <3

sdgirl
New Member


Date Joined Nov 2016
Total Posts : 2
   Posted 11/10/2016 6:37 PM (GMT -6)   
Hi,

I'm new to this forum, but so glad I found it! I've had systemic lupus for 28 years and also have a lot of skin related issues. I took high does of prednisone for several years to get the lupus under control and by the time I was done to 5 mg, the cartilage in my left hip was gone. I had to have total left hip replaced in 2004. Being on prednisone for a long period of time isn't good for our bones, I know it helps us when we have a flare, but I try to not take it longer than a couple of weeks.
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