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Posted 2/16/2011 4:32 PM (GMT 0)
Hi folks,

Some of us who were here before 2008 are wondering what's happened to the folks we talked with a lot in that time frame -- so I'm starting this thread so the "old timers" can post a quick blurb to let us know what you're up to and how your lupus has been treating you.

I'll start -- I'm still active on the forum, now in my 5th (I think) year as a moderator. I don't post as much, mostly just when there is a post left unanswered or something I feel strongly about. I do check in 1-3 times a day to see that things are going okay.

My Lupus is fairly quiet -- still a lot of joint/muscle pain on my right side, but I've returned to some physical activity despite the pain. Being careful with rest & food helps a lot, as does the judicious use of pain medication & hot Epsom salt soaks. My brain dysfunction has subsided, but not back to normal...it stole my impeccable sense of direction & now I get lost! Also no return to work in sight. Still fatgiue, but nowhere near as bad as it once was. Sleep medication really helped with that! Can't do long days, or too much in one day -- but after 9 yrs w/lupus, I've finally gotten decent at predicting what will/won't work for me!

Almost off the prednisone, only 1 mg now. Maintenance meds: Plaquenil, Feldene, Wellbutrin, Prednisone (1 mg), Trazodone, Rozerem, and Vicodin as needed (2-3 x per week). Also a good multi-vitamin w/minerals, B12, C, and D3....should be taking Calcium but never found one I liked.

What's everyone else up too?
Posted 2/16/2011 10:14 PM (GMT 0)
Hi

It's me dbab AKA Des ... I peep (lurk tongue ) in every few days or so.  My lupus has been more active than usual which isn't saying much because it's usually more on the quiet side.  Nothing too serious though.  Major complaints are the joint pains especially in my fingers, wrists, and ankles... and the fatigue is kinda rough on me more than anything though, (taking long lunches and sleeping in my car during those) nono   what's a girl to do?

Currently taking Pred 4 mg, Plaq 400 mg, Sulindac 400 mg, Vicoprofen PRN, Tramadol PRN (hate it blah skull ), Topamax 100 mg, my supplements, (and prob missing some other stuff)

I'm currently seeing a liver doctor also because of concerns with my liver and some abnormal tests.

Des

Posted 2/16/2011 11:07 PM (GMT 0)
Great post. My lupus has been fairly well regulated since the introduction of CellCept about 20 months ago. My rheumy took a different job and I miss him tons but the new one I am seeing is ok (not great). Hope this finds everyone doing well.
Posted 2/18/2011 4:25 AM (GMT 0)
Great idea, Lynn. I continue to ride the roller coaster...I've been coasting down for several weeks lately, but saw my rheumy today and hopefully we're on the right path to getting it under control. It seems that every time we try to cut back or eliminate a med, it backfires. So, until we develop the super, cure-all med looks like I'll continue to "live better through chemistry" as our friend Butterflake always said!

One new wonderful treatment I got to try last month was botox injections on the palm of each hand at the base of each finger and thumb for Raynauds! It worked great! Since botox is a product of botulism which basically paralyzes, the blood vessels can't spasm. Therefore the blood continues to flow and the fingers stay warm AND a normal color. I'm not sure how widespread this treatmet is but if you suffer from Raynauds it might be worth inquiring about.

Hope to hear from more old timers who may be popping by from time to time.

Lynnwood, three cheers to you for the time, effort and wisdom you give to this forum. Take care!

emmie
Posted 2/18/2011 3:06 PM (GMT 0)
I haven't been active in posting lately, but I do peek in every day to read posts.  My lupus has been flaring for some time now. Joint pain, headaches, fatigue, cognitive problems, vision problems and issues with my APS.  I started Cellcept 5 days ago in the hopes that it will get everything under control. I was on Imuran for 10 years with very good results, until this past year.

 

I'm still working as a self employed photographer.  Work is slow at the moment which is a blessing because I'm not feeling well enough to work much anyway.  I'm just plugging along. :-)

 

 

Posted 2/18/2011 3:24 PM (GMT 0)
Ginny, I see that you have Raynaud's Syndrome noted as well. I have been trying to get the General Mgr. or the main contact of this forum to post a new topic for Reynaud's Syndrome, but have had no luck. I sent an email and also posted a request, but yet no answer. Can you give me input on Reynaud's? I have a very good friend who was just diagnosed w/ this and I would like to be more educated on this topic. Can you enlighten me or does anyone have any input? I appreciate it. Thank You and hope you have a better day today. I also have another best friend who has Lupus since the age of 12. She just had a flared and almost lost her life, but thank God, she is back in remission. She is now 26 years old. I see her discomfort everyday and she is so strong and full of life and this seems to help her cope daily. The positive attitude behind all the pain keeps her sane. Good Luck. Stay positive. God Bless.
Simplistic007 (breast cancer remission, FM, (beginning stages of RA), depression.
Posted 2/18/2011 4:00 PM (GMT 0)
Well after being diagnosed 2 years ago I feel like things are pretty much in check right now and thankful for it.  The biggest complaint I have is some joint pain and stiffness, mostly in the hands, but in the knees periodically.  Trying to increase my activity daily to build the joints back up.  Hardest thing for me is not knowing how I will feel day to day and when I wake up the first thing that pops into my head is the fact that I have the disease and wonder what each day will bring.  I'm currently taking plaquenil, prednisone 3 mgs a day, etolodac, lisiniprol, folic acid, tramadol as needed (miss the darvocet), cenestin and prometrium (hormones) and as many vitamins I can stomach in a day. Really want to get off the prednisone, have definitely seen the side effects after 2years of use and don't like it.  But, I'm thankful that I do not have as many problems as alot of us with the disease do and try not to get on the pity pot as I know that there are many others who have it worse.  I do check in here periodically, but to be honest, it can be kind of depressing to go to the forum everyday.  It just reminds me of all that can go wrong and there are many days I just want to forget that I have it and want a "normal" day.  Or I should say a "new normal" day.  Don't get me wrong, I'm very thankful that I found this website and the support it has brought me, but if I don't always post or respond it's because I'm trying to enjoy all the other little things that bring joy to me. I wish you all a pain free day and an enjoyable weekend. 

Hugs and Angels,

Lynnette

Posted 2/19/2011 2:23 AM (GMT 0)
Sorry I've not been around much, I do stop in and read post. I've had a busy couple of months and a couple of flares in between (joint pain, chest pain, pleurisy, muscle pain, fatigue, etc). My lupus is not under control right now fortunately I see my rheumy next month so plan on having a heart to heart, just discouraged a little. It's been cold here in the South (except the last couple of days) and the Raynaud's has been really acting up and very painful. Also have some new stuff happening too, it's always something, isn't it?

Hugs and prayers to everyone!
Posted 3/2/2011 12:13 AM (GMT 0)
Just came on for a moment to check in. Have been getting slowly worse due to liver, enzymes elevated all the time and now are looking at PBC due to positive AMA. Connective tissue disease worse, scleroderma in the forearms, rheumatoid fingers developing, psoriatic arthritis in the knees and elbows, along with the vitiligo I think they could make an autoimmune skin disease chart just from me. Sjogrens still there. I've had some improvement in GI taking pancreatic enzymes per my rheumies recommendation. tired alot. Life is good, though, doing everything to stay away from docs and hospitals.
My mom had pancreatic cancer and they say it is hereditary and due to her autoimmune disease, which I don't get. She was at Moffitt and had her pancreas removed and part of it sewn on to her liver. She then had a stroke and I was there to help her through just after it happened. It was really hard, she had quite an incision and was wanting to get up and leave. I'm glad I could be there, though.

So I'm just worn out, too worn out to log in sometimes. Just trying to enjoy the cool weather while we still have it.
Love, marji
Posted 3/10/2011 12:58 AM (GMT 0)
Hi, To all...Been here since 2005. I just pop in every now and then. I have not been in a flair for at least 2 years now. I have done very well since my pcp put me on CYMBALTA. Just, found out this year....I have a sleep disorder, gount ln my right foot. I am able to work still, but as you know some days are better then others.

Love, to all
Posted 3/10/2011 5:17 AM (GMT 0)
Thanks Lynnwood...it's good to hear about you folks again. My lupus has been fairly quiet. I had two foot surgeries last year and that set me back, causing my lupus and fibro to flare, but mostly caused me to become weaker since I was so sedentary last year. But I believe I'm on the mend again. I changed rheumys about a year ago and finally, someone came to my rescue and offered to give me Norco for my pain. My lupus pain still comes and goes, mostly in my hands, fingers, and other joints, and I still suffer from a lot of fatigue. My fibro pain, however has really ramped up and pain meds have been helpful. After six or seven years, I got off prednisone a year ago. Still take plaquenil, neurontin, cymbalta, synthroid, actonel, lunesta, and the requisite vitamins, fish oil, and calcium. Walk, try to eat well, and ride my stationary bike. And never get out in the sun.

I still poke my head in here from time to time. I occasionally hear from AlwaysRosie and Hippi. Rosie seems to be doing real well, but Hippi is still suffering, maybe more than she was a few years ago. I'm saddened to hear about Redrose, and hope that Donna's crisis is over.
Posted 3/10/2011 8:22 PM (GMT 0)
Hi, I am Omega. My lupus has been under control and fairly quiet. Thanks for the Cellcept. It rocks. I havn't been on a flare for more than half a year. My Raynaud is better this winter, at least I don't get little painful lumps which I used to have in winter time. I don't know if it's because the Cellcept that helps or what, but happy that no little painful lumps for this long cold winter. I am off all the Pred half a year ago (after 20 years of taking it). Still taking Cellcept, Candesartan, Omerprazole, calcium+ Vit D, warafin, simvastatin, verapmil.
Posted 3/10/2011 11:32 PM (GMT 0)
Tell Alwaysrosie I said Hi....thanks
Posted 3/12/2011 3:08 PM (GMT 0)

Hi! to all,

and it's good to have the chance to 'check in' with everyone. I was diagnosed in 2005, and because of worsening flares and prolonged respiratory infections and falls, just had to stop working. It took 3 months for my SSD to be approved, and 7 months for my disability retirement to be approved. I miss work alot, and am dealing with the reality that, contrary to my expectations, my illness didn't go away. First two years we tried the 40/30/20/10 high dose prednisone plan. Didn't work. Been on 5 mg/daily but unable to wean to every other day per new recommendation from rheumy. Asthma growing worse and chest pain scary. Every cold triggers asthma that requires 20-40 mg of additional prednisone. Have had alot of respiratory infections. I am finally willing to trade prednisone for cellcept. See rheumy next month. Have had same husband,  and same little old house for 38 yrs. 2 1/2 yr. old grandaughter the joy of my life. Save most all my energy for Gramma fun.

hugs, suetoo

ps. I like Frank's advice. "Enjoy what  you can today, and leave the rest for another day"

Posted 3/12/2011 5:58 PM (GMT 0)
Hi all,

I am doing well and continue to "defy gravity" with my recovery.  Lupus hit me hard (kidneys, joints, cognitive, fatugue), scleroderma was minimal (raynauds), but polymyositis turned me into a quad and could not swallow.  Have made a one of a kind recovery and lead an active (although not as active as before) life despite considerable loss of muscle cells.  Lots of damage done but I look as those as speed bumps compared to what I went through in 2005-6.

My rheumies said that my case might "burn out" and so far that is true...no flares of any kind.  I get nervous when there is an change in my labs but so far every adnormal reading returns to normal the next time.  Almost off all controlling meds except for 2.5mg pred which should go this year unless I have more problems.

I am active on several forums and run a myositis support group in Chicago and volunteer at a rehab hospital and interact with patients.  Even though I do not need to post I like to tell people that there can be a light at the end of the tunnel with AI diseases. 

My strength continues to improve through exercise but I am working at the wrong end of the clock as I approach 70 but intend to enjoy each and every day I can.  No time to waste.  Ski season is over for me and I can't wait for warmer weather and golf.  Life is good.

Bill

Posted 3/18/2011 4:05 AM (GMT 0)
Hi Lynn,

   I haven't been around in awhile and I have missed everyone. I think this is my seventh year here so I guess I qualify as an "old timer"...:)

   I have had some ups and downs over the last year. I'm still crossing my bridges and not looking back. Most recently, I have been in the hospital 3 times. I was hauled off in an ambulance---incoherent....to find out later I had pneumonia and a fever of 105 on Feb. 18th. During my 8 day stay at the local hospital my heart stopped beating a few times and my heart rate dropped in the 40's.

   After being released from that hospital I was sent to another hospital to have a pacemaker implanted. I ended up staying in that hospital 2 nights. A few days later I was back in the local ER with breathing problems and chest pain. Come to find out when the heart doctor put my pacemaker in he punctured my lung and it partially collapsed.....the same lung with pneumonia. At the same time fluid built up around my heart causing Pericarditis. Seven days later I was released....that was this past Sunday.

   I see the doctor tomorrow and have a chest X-ray. I can see the light at the other end of this dark bridge and I'm ready to put it behind me and move on.

   It's good to see everyone and I've noticed there are a lot of new members to meet.

Take care all,

Love and hugs, Babs

  

Posted 3/18/2011 4:07 AM (GMT 0)
Hey Babs!

Great to see you back online! Sorry for your troubles, I don't even have the words to say what I think of Drs that make stupid, stupid, stupid mistakes.
Posted 3/18/2011 4:18 AM (GMT 0)
Hi Babs,

So sorry for your health problems this past winter. I am so happy to see Spring coming around the corner. I'm sure that will help your recovery tremendously! Hope you get a good report at the dr. tomorrow. All the best to you!

xoxo emmie
Posted 3/24/2011 12:30 AM (GMT 0)
Hi Lynn and Emmi,

   It's good to see you ladies again. My appointment was rescheduled for today so I waited until this past Monday to get the x-ray. The collapsed part of the lung is healed. I still have scarring from the pneumonia and I have pluerisy but, I'm getting better. I see the heart doctor tomorrow to get the pacemaker checked.

   Thanks to both of you for the well wishes and welcome back! Best wishes and take care.  love, Babs

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