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07-14-2015 08:54 AM - edited 07-14-2015 08:56 AM
So much has been on the news lately about these drugs and heart disease but I wanted to relate my story. I have pretty bad arthritis. The worst is it is in my back so I wake every day with back pain and can hardly move to get out of bed and walk around.I have had arthritis in my ankle requiring a major surgery that had me in a wheelchair for 5 months and a very long recovery.Bilateral knee surgeries and back surgery. Soon will be having hip replacement. I am an orthopedic mess! I also had kidney cancer and had to have a kidney removed. Every day for the past about 12 years or so I have taken an NSAID every AM for the pain and stiffness in my back, so I could just get moving in the mornings. I only took that one pill a day.I started out on vioxx then when it was d/c I was taking a drug called Daypro my rheumatologist recommended and gave me a Rx for. That was d/c and our doctor in Florida told me to use Aleve. Well, this winter my blood work started to show signs of renal failure.My doctor said I absolutelyu had to stop taking the aleve and offered nothing to replace it. So now I am taking Tylenol, normal dose but in a timed release form, once a day. I know I won't be able to continue to take this forever, but tylenol is not as dangerous when taken in a small dose as the NSAID are.
My point is - even if you are only taking NSAID in the recommended doses and only once a day - they are very dangerous drugs to take on a daily basis.I have decided when we get home from our summer vacation I am going to go to a rhematologist and see what else he can recommend for me. It is a shame that these drugs are not the miracle they were first thought to be.
I remember when I was in nursing school the only thing out there for arthritis was aspirin( ecotrin or anacin to prevent stomach issues) or tylenol. I guess we are pretty much back to there.
07-14-2015 09:56 AM - edited 07-14-2015 11:22 AM
I am sorry to hear about your renal disease. It is scary. I was diagnosed this past December with stage 3 chronic renal disease. Not big deal at this time. But a complete shock.
The first thing my PCP told me was NO more NSAIDS. I did not use them a lot but they were my drug of choice not Tylenol which never helped me (w/muscle aches, headaches, etc.) .
Right away she put me on a high blood pressure med. I never thought my BP was that high. It was 140/90 that day but it is always high at the doctor. Is always lower at home.
What irks me is that when I asked what caused my kidney disease she said sometimes we never know; that answer does not make me happy.. I always want to know.
I have done lots of research and lots of things can cause it.
This April I developed Bakers cyst; lost of pain and was put on Prednisone. Didn't help. I broke the leg (knee) which had the Bakers cyst many years ago when I was in college. Anyway, I saw two doctors (one an orthopedic surgeon) who was no help. My friends said he must have thought I was looking for drugs when I told him I could not take NSAIDS. Then saw a rheumetologist. He sent me to physical therapy for a few weeks and the exercises did help. But my ankle on that leg is still a bit swollen. I do not understand that as it is my knee giving me problems.
Oh doctor also give me RX for Voltaren gel which is a topical NSAID. I told him I was not supposed to use NSAIDS because of my kidney problem. He said it was not that much and I thought, yes but it is not your kidney. Got Rx filled ($50) w/insurance and it really did not help much anyway.
Sorry this is so long; what stage is your kidney disease if you do not mind me asking?
I too wish they could come out with some pain meds that don't have side effects that damage other parts of our bodies.
07-14-2015 09:59 AM - edited 07-14-2015 10:01 AM
My Mom had multiple disabilities and had a high resistance to many drugs including Morphine, Percodan, Codeine, etc.
She also took Daypro 600 MG once daily as well as Aleve for many years as she had cracked vetebra and spinal stenosis.
I believe all the drugs we take also take a toll on our internal organs and overall general health and well being, but many are life sustaining so many times we have no choice. Either take them, or pass on.
I always said police your own medical health and research every drug and its consequences as there is good and bad with everything the Drug Companies manufacture.
I read many complaints about Cipro which is a very dangerous antibiotic and Leviquin which is also the same. My Mom was never told what drugs they placed her on and took both antibiodics when she was in the Hospital, and almost died. Many died on Cipro and Leviquin has its many drawbacks and angers including hallucinations.
Celebrex also has its dangerous characteristics.
All of these need to be controlled and if used used for a very short period of time under medical scrutiny and supervision.
I know my Mom had a really bad time being disabled early in life but she lived until she was in her 80's and I attribute that to her scrutiny and questioning of everything as well as reading and researching everything they prescribed before she filled those scripts.
"Newer does not mean safer or better, and many times even those writing the scripts for their patients truly have no clue as to the harm they can do, and how many have already died taking them according to scripts".
I wish 151949 and everyone the best of luck when trying to find something that is safe, works well and has a proven track record for many years.
07-14-2015 10:01 AM - edited 07-14-2015 11:20 AM
I forgot to add rheumatolgist said I had osteoarthritis in my knee but did not think I would ever need knee replacement. Just to lose about ten pounds and keep up exercising.
I really feel for you as you have so many problems with arthritis.
Oh made a new post b/c I do not know how to edit with new forums; this is my first post with them and I never did post much anyway.
07-14-2015 11:13 AM
151949, I just reread your post and see that you had kidney cancer. My vision is not the greatest. I am so sorry you had to deal with the removal of your kidney (and all the other things that go along with cancer). And now the other kidney diseased! You certainly have a lot to bear just with that in addition to all your problems with arthritis.
I hope you can find something to take care of the pain.
07-14-2015 11:24 AM
I have taken recommended doses of Tylonal since it came to the market because I've had serious TMJ starting at age 8. Also aspirin (also low doses as recommended) and recently Advil (on occasion). Chronic pain is horrible and these meds have really helped me. I had a serious fall in 2010 and now have a pinched nerve in my neck (mimic'ed a heart attack about a year later) and a terrible time sleeping because of the neck pain.
So.... based on the newest evidence regarding the pain medications out there, I will also have to be careful.... thanks for the information.... I will go research more....
07-14-2015 12:23 PM
To the OP,
While I have my ortho problems they are not even close to what have been and are dealing with now. Not sure what specific point you making with this thread, so I will just wing it. You have only 1 remaining kidney, unless I am reading your post wrong, and now you are having renal failure on that kidney?
I now see at the end of your post your comment on NSAID meds. I was on Celebrex for 2 or 3 years for many arthritic issues, including 3 ruptured/removed lumbar discs/3 crushed cervical vertabrae/most fingers on both hands(primarily caused from 30+ years of factory work).
I have had 2 heart attacks, 1 where Aspiration Pneumonia left me jn ICU for 7+ days, along with 3+ weeks in thd hospital. Took about a year to regain my prior lung values.
After heart attack 2, I heard Vioxx was taken off the market for heart valve related issues. I talked with my Ortho doc and my Cardiologist, and " I " made the decision to get off Celebrex. That was in 2007, and at that time I was on Coumadin(Warfarin) blood thinner. In 2008 came my bleeding Colon issues, that were unrelated to my taking an NSAID.
I have come to understand that for me life comes in stages. I did what I felt was the best for me during each stage. I understood/understand the risk factors and my quality of life during each stage was/is my top priority. I chose what allowed me to function at my highest level and if that stage included taking an NSAID? So be it.
Looking back would I change my choices? NO, I would not. My life has always been primarily focused on the present, while always understanding my risks of what "might be" in the future. Living the moment has always superceded what "might be's" in my future.
Many as they age face similar decisios. What choices they make, if they truly understand some of the risks, is best left to how they choose to function through each stage of their lives.
Knowledge gave me the power to choose what I have wanted during each stage I have passed through in life. All Studies/Health related reports gave me knowledge, but they were not the reasons for my choices. That I left to me knowing my own body better than any study or report.
I have lived among enough people to know way too many have little clue when it comes to knowing and understanding their bodies and that me is sad.
NSAID/Blood thinnerd(rat poison)/Beta Blockers/Statins, and I could go on and on.
Some like to say " I would die before taking those meds". My reply? It is your life and your choices. If you want to base your decisions on A Study or A Report, as opposed to gaining all the knowledge you can find, and truly understanding your own body during each stage of your life?
07-14-2015 12:24 PM
I'm right in there with you and wish we could be in a better place.
Remember when we were in nursing school and were taught that injuries to the CNS were permament - that the CNS could not heal itself? Well, I'm not exactly a cretin or on the dumb side, but I never heard anyone address the fact that the kidney cannot be healed once damaged.
As with others here, I'm in Stage III after having taken Mobic for 12 years for chronic migraine (have had this headache now for 34 years). I'm really furious at the circumstances that made this possible. I refuse to do a number on myself and blame me for this.
I've also got numerous ortho challenges. If I listed them, people would be in disbelief, it's that ridiculous. Basically, Tylenol on its own does nothing for me - like taking a sugar pill. I'm taking oxycodone and Soma (muscle relaxant), when needed. Since I also have a seizure disorder and my neuro has me changing meds which makes me half asleep every day, I'm unable to take my pain meds as I need. These days it's certainly a challenge.
Remember to keep hydrated, as that will keep your eGFR in a better range and will make your kidney happier. Will remember you in my prayers, OP.
07-14-2015 02:24 PM
I worked for the final 5 years of my career in dialysis so I have some friends in this field. Once a kidney is damaged it will not go back - it can't heal itself and rebuild nephrons (the part of the kidney that does the work) so if your lucky your kidney damage won't get any worse but if your not it will be a downhill slide.
Yes, it is true that when you tell a doctor that you have pain but can't take NSAID for it due to renal disease they jump right to an assumption you are looking for narcotics. A sad state of affairs brought onto us all by the druggies.
I just wanted to write this thread so people would realize that these drugs can severely damage more than just heart valves. They are toxic to kidneys and livers and you don't have to be taking them in large doses to get the side effects. If you are taking NSAID you MUST regularly get blood work done to monitor the condition of your kidneys and liver.
07-14-2015 04:58 PM
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