Hi-Wanted to see if anyone here has severe flare ups of Arthritis. Apparently there is a CF relation, Arthritis that is not the "normal" to most people. It comes and goes with no real relief without Prednisone and unfortunately that has not so great side effects. History of it almost all his life 29 yrs. I would appreciate it if anyone can help us out.ThanksmichellePS I'm including my email if anyone wants to write.missmem@juno.com
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CF related Arthritis
- Thread starter anonymous
- Start date
Hi,I had this prior to transplant and it was quite painful... at times I found it very hard to walk. Rhis combined with by diminished lung capacity made things pretty tough. I think it is known as hypertrophic pulmonary osteoarthropathy (HTPO). From what the doctors told me it sounds like there is more or less extra growth of bone over the shins, wrists etc. I had x-rays which confirmed this.Andrew.hopeandrew@hotmail.com
Hi Michelle,I'm Dea...and 30 yrs old. I also have CF related arthritis...and have had it since I was about 9. Mine comes and goes also...and without prednisone I get NO relief. Mine gets soooo bad I cannot move at all. It is very very painful. I have started seeing a rheumatologist...and the good thing is that it is not affecting the bones. He says it definitely is a form of arthritis...but is hard to give it a name. We are still working on it....So far nothing has worked except prednisone. Mine is starting to flare up again about once every 2 weeks....very annoying. Good luck...if I find anything new out....I'll be sure to post!Dea
Hello, I suffer from arthritis also and I take Lortabs twice daily. I think prednisone is a good pain killer for me but my DR refuses to put me on it for my pain so he put me on Lortabs and they help better than the prednisone for me. I just wanted to add my 2 cents about my arthritis.Take Care
My daughter id almost 13 with cf dx at 6 months old. She has done really well up until a few years ago. Yesterday we went to CF dr. and he diagnosed cf related arthritis. I have searched online and books I have but can't find much on the topic. Can anyone help? Her pain is in several joints. She dances and is very active. Is there something I can do to stop joint damage. She currently takes motrin for pain. Thanks for your answers, Samantha
My daughter is 11 and she has CF related arthritis. The only time it acts up (hurts to the point she cannot walk) is about a week prior to a CF exacerbation (pulmonary). She used to take Celebrex (with great results) until all the negative press and removal of the med from the market. Her CF doctor said this arthritis is seen mainly in girls - states most of his female patients get it as a sort of "aura" prior to pulmonary exacerbation - and that when the arthritis flares up they want to get her in immediately and do PFT's - could give them a jump start on pulmonary problems. She started having the flare-ups (arthritic) since the age of 9. Sometimes the only thing that gives her any relief is moist heat and motrin.
thefrogprincess
New member
I just found out last year that there was such a thing as CF related arthritis! I was so irritated that my docs never told me. So far for me it isn't too bad yet. Aleve still takes care of it most of the time. But lately I've noticed the aches creeping back in in the evening. I'll probably have to find a job that doesn't require me to be on my feet so much before too long.
<img src="i/expressions/face-icon-small-happy.gif" border="0">-Thank goodness I found someone who knew what I was talking about. Sarah's pft's are down and will be doing bronch. and home IV's as soon as school is out. She refused until then. She is in the musical Annie and she has her ballet recital the same week. Her drs. said she could wait until then. Do you see a specialist for this? I'm kinda of at a loss for what to do. I think I am doing what I'm suppose to and watching for all the things I should and then something that I've barely heard of pops up up! Very frustrating!! Right now she is taking Motrin for pain. If I am understanding this right, will the pain go away after the infection is gone? My dr. explained it like an infection has gotten into the blood stream and settled into the joints?
Samantha
Sarah, curious, active, funny, beautiful, very headstrong, cf diagnosed at 6 months.
Samantha
Sarah, curious, active, funny, beautiful, very headstrong, cf diagnosed at 6 months.
When my daughter was first diagnosed with the CF related arthritis (there is an actual technical name - pulmonary osteoarthropathy) she was in the hospital at the same time with a pulmonary exacerbation. I remember the week leading up to this her legs (knees especially) hurt her so bad she could barely walk - by the day she went into the hospital she could not walk at all and we were carrying her around. They had a rheumatologist see her while she was in the hospital - they did x-rays & CT scans to make sure nothing else was going on. Other than that time she does not see a specialist - only her CF doctor. Like I said anytime she starts having this pain we are to let her pulmonologist know because it indicates an oncoming pulmonary exacerbation. We give her motrin - this helps take the edge off. The best thing we have found is a nice hot bath (hot as she can stand) - bengay - and we massage her legs. We've never had to resort to narcotics - and don't want to if at all possible because they are bad for the lungs in addition to everything else. Hope this helps you some -
tessa55454
New member
This is what I found out re: arthritis, and it's relationship with CF. Arthritis is an auto-immune disorder. When the immune system is weakened, arthritis flares. I had arthritis for many years, from 12-20 years old. I do not have flare-up's anymore. What I have now, is residual cartilage loss, and really bad knees.
The pattern that I noticed is, when one has an infection or anything is making the immune system work harder, I got an arthritis flare-up. Because my immune system was low, the arthritis was set in motion. When I keep my immune system up, no arthritis.
My arthritis was, i believed caused by many years of severe depression. I beat up my immune system with depression. But, it also was toppled with lung infections. It was this crazy circle of events.
Because I do not suffer from chronic depression anymore, and learned how to be much healthier, arthritis has gone away.
Anything that challenges the immune system with cause an effect with arthritis, unfortunatley. I have heard people being free of arthritis after seeking a therapist, I don't know if that works for everyone.
I emphasize with your child's pain, I could barely walk countless times. I missed school 'cause it took to long to get to class, hurt to much to sit in class, and couldn't barely walk period.
I very sorry your daughter has arthritis.
The pattern that I noticed is, when one has an infection or anything is making the immune system work harder, I got an arthritis flare-up. Because my immune system was low, the arthritis was set in motion. When I keep my immune system up, no arthritis.
My arthritis was, i believed caused by many years of severe depression. I beat up my immune system with depression. But, it also was toppled with lung infections. It was this crazy circle of events.
Because I do not suffer from chronic depression anymore, and learned how to be much healthier, arthritis has gone away.
Anything that challenges the immune system with cause an effect with arthritis, unfortunatley. I have heard people being free of arthritis after seeking a therapist, I don't know if that works for everyone.
I emphasize with your child's pain, I could barely walk countless times. I missed school 'cause it took to long to get to class, hurt to much to sit in class, and couldn't barely walk period.
I very sorry your daughter has arthritis.