I will try to make a long story as short as possible: My sister was DX'ED with agressive RA 13 mos. ago, age 66. After many tried and failed mixtures of meds she is not one bit better. My question is, does anyone know someone who has died from RA, had no remissions ,or nothing helped? I just don't see how much longer she can go on. Her Dr. told her this week she has the worst case of RA she has ever seen. Her meds right now are: 400mg infusion remicade every 6 wks w/Boniva,30mgs pred.,50mg Duagesic Pain Patch, Oxycodone ?mg, had a large steroid shot yesterday, and is having the worst flare ever in her hips, feet and hands.
She is so sick I'm afraid she'll die from so much pain and breathing difficulties. She is also so depressed from the pain and feels like there is no hope. She's never been this bad or this sad for so long and we feel so helpless. Other meds. they tried for months at a time were Injections of MTX, Humira, 75 mgs pred , vicodin, percoset and she still had stress fractures on her spine, esophageal spasms, lung damage,pluerisy, eye damage, pneumonia, asthma, and is still in a wheel chair most of the time. Has not slept in a bed in 4 wks due to pain getting up and down so spends 99% of time in recliner. She goes nowhere but to the Drs. or hospital. Her eyes are so bad she can't read and can barely watch TV. I've just never seen someone so vital and healthy become so debilated almost overnight. And the pain is so excruciating she can hardly move. She crie's at times...
She's on a ton of other meds too, this is a partial updated list this week. What else is there to do? I've read every post and article I can get my hands on but I'm at a loss and so are her Drs. She lives in Charlotte N.C. and has some very thorough , good Drs. My family and I can't help but be so worried even though out stong christian faith always gives her and us hope.... Please keep her in your thoughts and prayers....Thank You
Genesis,Genesis, I am so sorry your sister is so sick. And I feel horrible for you and your family. You are suffering too.
Have you read about the stem cell treatment that Stemcell4me was given? From what I have read, it is a difficult road to take, but she seems to have had great success with it.
I hope and pray you will find something soon that will help. My best wishes for all of you.
I am so sad to hear about your sister. I am praying for her and for you. It must be such a comfort to her to have such a caring family. I am going to the eye doc (again) today as I cannot see out of my right eye again. I had a hole in my Retina repaired in Dec., pred drops and restastis and it is still getting worse, so I understand the pain and eye problems well.
I really hope something starts to work for her and the relentless pain will let up for a while. It is just so hard.A good (and short) book to read at a time like this is "When Bad Things
Happen to Good People" by Rabbi Harold S Kushner. It's very comforting.
Thank you all for your prayers and kind words of encouragement. It really means a lot to know others care too. I've just never seen anything so relentless and destructive as this disease. My mom had lung cancer for a year before she died and it was nothing compared to the pain and agony my sister is going through.I do know the Lord is in control and is helping us all and will not let us bear more than we can stand, but sometimes I just want to say "how long Lord, how long"? I'm not prepared to lose my sister. She is such a wonderful person and needed and loved by so many. I have such empathy for people suffering with this. I would never want to see my worst enemy have RA. I thank the Lord for family and friends that are caregivers and encouragers to people with this. Love to all...
Gimpy, thanks for the book tip, I'm going to look for it today. I've heard it was very comforting too.
G~I'll keep your sister in my prayers. I'm real sorry to hear she is doing do poorly. She really is lucky to have you. Geneis, I am so sorry about your sister. I never heard of anyone dying of RA but I can see how this can happen with complications. I'll keep your sister in my positive thoughts. Genesis. I have a question about your sister? Is she overweight? Is she
Hey Lori, It's good to hear from you, I've missed your post's as I'm sure everyone else has too! I don't know where to begin about Barbara but thanks for asking and here is what I can tell you : She has never been overweight before now and is still not obese. Pred. and inactivity has made her gain some weight. She has always been the more health conscious of us all. Fresh fruits and veggies,little red meats, low fats and carbs, very little sugars, you name it. She has always been very active,and got plenty of exercise in flower and vegetable gardening, kept an immaculate house, raised three great kids and has a wonderful husband. Probably less stress than most women and she was always able to stay home, but baby sat for years for extra income when her kids were in college. She loved that though, and had a waiting list because she was in such demand. Mostly children from their church.
About 15 yrs ago (at menopause) she developed severe allergies and asthma. Thats when she started prednisone and allergy shots. (I wonder too if theres a connection), She seemed to be alergic to everything, foods, grass, dust mites, trees,pollen, and many others,sometimes to the point of anaphalaxis. Pred and inhalers bailed her out many times. After a few yrs. of shots and meds most of the allergies just went away except for the grasses and dust and she still has on and off again asthma..She's been off the allergy shots for years now. About 7 yrs ago she developed CAD (corony artery disease) and had a mild heart attack, 5 stents, and an anuryesm(sp) in her stomach which is still there. Can you believe this? I would think this story had to be made up if I hadn't witnessed it all. Too sick to be humourous... Anyway her Cardio is pretty good for the last couple years with trial and error meds and surgeries. Her BP and cholestrol have always been low but is on meds for them anyway. Her arteries are most likely genetically diseased so By-Pass is not an option. her daughter is a Pharm-D so keeps a close eye on her 20 something different meds a day.
That brings us up to date with her severe RA onset 13 months ago and you know most of the rest... except for bleeding ulcers, two go rounds with H Pelori (sp) bacteria, cataracts,and IBS. Are you wondering why she's still alive? I am, after seeing it all in writing. Sorry so long but this is her Honest to God history. Oh and she had carpal tunnel surgery on both hands and gall bladder removal in the last few years.She was hospitalized twice with pneumonia right before Ra. She also had a tick imbeddied on her back for God knows how long, she and hubby thought it was a mole till it became infected. Had antibiotic treatment but I begged her yesterday to be tested for Lyme disease. Her Sed. rates are really high but she's not sure what they are. Would Lyme Disease make them high?
Oh and Lori , her food and drink regime has stayed pretty much the same which was good to start with... Thank God for small blessings...
Thanks again for listening and the kind words, thoughts and prayers from everyone
Hope you had a great time in N.Y Lori, tell us more of your adventures and an update on the baby and Candace. Hope all is well..
Oh my, why have they not tested her for Lyme Disease??? This could very
Hey Lori,sounds like your trip was wonderful and very EXPENSIVE lol. So glad the baby is in good hands and Candace is doing better. I will keep them in my prayers. I think about them a lot.
I just talked with Barbara and she is a little better with her RA flare in her feet, hands, and back but her hip/pelvic area is worse. Dr. has ordered an MRI and thinks she may have a fracture in the pelvis. Next week was earliest appt unless they have a cancellation. UGHHH!!
I asked her again to be tested for Lyme but her daughter told her her SED rates would not be high if that was the case. So I don't know.. I'm going to do more research on that one. She never did ask her Dr. about AP therapy that I suggested months ago, because he always seems "too busy", SHEESE! Oh and the tick was found on her about 4 yrs ago.
So thats the update and I'm as frustrated with her right now as I am her Dr.! I don't let her see it so I just pray and cry