Post Chemotherapy Rheumatism ( joint pain )
Done a lot of research on the web and here is what I'm finding out. 1-3 months after chemo this may occur.They call it Post-chemotherapy rheumatism.Not much info on it that I could find. I took 5 rounds of Folfox and finished up with only Xeloda. Has anyone here had these problems and if so what did you do? Does it go away? Should I contact my onc? I don't have an appointment until July 13 with her. Maybe go see my PCP? I believe anti-inflammatories might help but I have gastritis so I hesitate.
And I just thought I would be going back to work soon:(
It just keeps hitting the fan.
Please, any advice is welcome.
-Pat
Comments
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Hi Pat, sorry for your pain.
Hi Pat, sorry for your pain. I too have developed what my GP said was arthritis (sorry about spelling) she said I was probably predisposed for it but the chemo really gets it going. I had a lot of nueropathy in my hands and feet. My hands are much better, however still a little numb. My thumbs are just plain stiff. I too ache and feel ancient! ( I'm not quite that old yet....) When I tell the onc's they say, yep... after chemo all of that is what can happen. So, I haven't really tried any meds except steroids during chemo, they made me feel good, but can't stay on that! Some days are better, some not so good. I do well after I get up and going, but getting up and down is often uncomfortable. I finished oxy over 1 1/2 years ago. I am currently on a trial drug regiment and do not feel worse for it. I hope you get some relief as it is discouraging. Hang in there and do your best to keep moving! Jean0 -
Hi! Pat
I'm sorry about your pain and I really sympathize for you. I have extreme bone pain at times. I finished up Chemo in March and am currently on Avastin for 6-months. Since Chemo stiffness started in my feet especially in the morning trying to get out of bed. I have to shuffle for awhile until they loosen. The other day when I got up my ankle felt like it was actually broke along with my wrist. The worst pain yet. I also asked the Onc and he told me that Neulasta can stay in the bones for a couple of weeks. Well a couple of weeks came and went and I still feel it. I have noticed however that it moves. Yesterday it seemed like it traveled from that ankle to my knee and last night I felt it in my femur and today I don't feel it. It's strange. My doc told me that it was arthritis but I think it could be the neulasta moving in my joints hopefully until it dimininshes - not one to diagnose myself but we just never know. I am going to give it a full 6 months before I do anything with specialist unless of course it gets any worse. Well take care of yourself and treat yourself to some nice hot baths they do sometimes help. Hugs.0 -
my legs
sometimes still hurt at night. Also when going for a long drive I look like a old man getting out of my truck because I get stiff. But WTH. I we just had the fight of our lives fighting for our lives.
Brooks0 -
Yes, yes, yes.
I have it right now. It starts (for me) 3 - 5 weeks after my last treatment. I had this with Folfox and now Folfiri. The worst pain is in my front upper body. I get the sore legs from sitting too long too.
This time the pain is bad enough sometimes to wake me up. Aleve helps but I don't like taking it, but I will if I have to.
The best thing I have found is heat and then deep stretching and strengthening. I get this from power yoga in a hot room (but not as hot as "hot yoga"), yoga therapy and running and then stretching. The trick (at least for me) is to get the internal body temp up so that you can stretch for long enough and at a level that the tissue will "remember" the stretch.
I am going for a massage tomorrow as well.
I have found that going anymore than one day without exercising is accompanied by intense tightness and soreness in my affected areas.
Take Care,
Catherine0 -
Yup, me too
Hi Pat,
I definitely have also had issues with joint pain and stiffness. I've been on and off chemo for almost 3 yrs now (mostly on, and am currently on). I'm just 43, so I shouldn't be having all these arthritis issues for someone so young. The worst times for me is first getting up out of bed in the mornings and getting up out of a chair after sitting more than a few minutes and up out of the car after driving. Sitting still too long does me in. Xrays have shown some joint degeneration (arthritis), but just mildly. It sure doesn't feel mild! I look at my feet and think how can it hurt so bad when it really doesn't look like there's a problem?! It's just been in the past couple months that my left big toe joint is getting red and swollen, even though it's been hurting a LOT for a couple of years.
I have found recently that acupuncture can help a lot. My lower spine and right sacral area also gives me a lot of pain and trouble. The last two acupuncture treatments I've gotten (which my cancer center offers for free) have really helped the pain. It's been amazing to me how helpful it's been- I would highly recommend acupuncture!
Best wishes,
Lisa0 -
Hey Folkslisa42 said:Yup, me too
Hi Pat,
I definitely have also had issues with joint pain and stiffness. I've been on and off chemo for almost 3 yrs now (mostly on, and am currently on). I'm just 43, so I shouldn't be having all these arthritis issues for someone so young. The worst times for me is first getting up out of bed in the mornings and getting up out of a chair after sitting more than a few minutes and up out of the car after driving. Sitting still too long does me in. Xrays have shown some joint degeneration (arthritis), but just mildly. It sure doesn't feel mild! I look at my feet and think how can it hurt so bad when it really doesn't look like there's a problem?! It's just been in the past couple months that my left big toe joint is getting red and swollen, even though it's been hurting a LOT for a couple of years.
I have found recently that acupuncture can help a lot. My lower spine and right sacral area also gives me a lot of pain and trouble. The last two acupuncture treatments I've gotten (which my cancer center offers for free) have really helped the pain. It's been amazing to me how helpful it's been- I would highly recommend acupuncture!
Best wishes,
Lisa
Thanks for the replies. At least I don't feel 'lonely' anymore.Sorry Y'all have the joint pain too because it tremendously SUX! The few things I've been able to research & understand it seems like there is a big grey area about this side effect. Some of the older articles tend to try & blame it on menopause....that is until someone did a study and found that men get it too...well, duh!
I just know that I am hurting from shoulders to feet and that I was ignorant to the fact that there are side effects that occur AFTER chemo. I knew it took awhile to get back to somewhat normal but didn't know that new stuff would be cropping up.
Oh well...live & learn and very glad to be alive.
-Pat
Edited to say: I bit the bullet and started taking Advil today. It seems to be helping a wee bit. I had inflammation around my surgery site a few months back and onc told me to take Zantac in the AM and Prilosec in the PM to stave off the stomach problems. I'll try that this time too.0 -
For me I had a great
For me I had a great reaction to my Osteo Arthritis, not sure which drug did it, the Oxy or the Xeloda, but I noticed my fingers no longer hurt. That indeed has been a blessing for me.0 -
The more i read the boards,
The more i read the boards, the more i see what we all have in common, the aches and pains from our treatment is the screwing we get for the screwing we got from Mother nature,,, I've been post chemo since Jan and i have good days and bad days, some days i can barely grip the steering wheel, and when i get out of the car, i walk bow legged and slowwhen i frought it to my Onc dr he said, well it aint that bad... I pop a couple naproxen OTC and go about my daily chores,0 -
I hurt....classicman said:The more i read the boards,
The more i read the boards, the more i see what we all have in common, the aches and pains from our treatment is the screwing we get for the screwing we got from Mother nature,,, I've been post chemo since Jan and i have good days and bad days, some days i can barely grip the steering wheel, and when i get out of the car, i walk bow legged and slowwhen i frought it to my Onc dr he said, well it aint that bad... I pop a couple naproxen OTC and go about my daily chores,
I have these pains also, almost one year off chemo....I was blaming it on the antibiotic Levaquin. Anyone else take this antibiotic? I know there are some lawsuits out there.
http://www.aboutlawsuits.com/levaquin-1119/0 -
Check out Devils Claw
Pat,
I'm way out from chemo (8 months of folfox w/ avastin in 2004) but experienced the pain and stiff joints for years until I found a few supplements that helped me. One in particular was pretty expensive but I stuck with it. In 2008, I decided my fat old fat butt needed to start running again. I had run for years until I hit 40 and always enjoyed it and thought I'd do it again in my mid-50s. I hurt my knee last year and surgery wasn't going to do much good so I rehabed it with bike riding and exercises but anytime I tried to run it would swell and hurt like hell. I was also moving around like an "old person".
My sports med doc knows I don't do meds unless absolutely necessary so he recommended the herb Devils Claw (a plant that grows in deserts and has tentacles that look like a "devils fingers", hence the name). It is an natural anti-inflamatory for joint pain and arthritis. It was only $9 for 100 capsules so I started talking it mid March. I noticed a difference in a week and swear by it now. I take it once a day now when needed but my joint pain and knee swelling are long gone!!!
On a side not, my 8 year old boxer has hip dysplasia that was getting pretty bad. I looked on the internet and saw some devils claw oil for animals and decided to give her part of one of my capsule and now a month later she is much more nibble. Great stuff and no side effects!!
Be careful with the anti-inflamatory meds, they all have side effect and be sure to NEVER take them on an empty stomach since they erode the lining of the stomach and intestines.
I have a friend who founds hers at Walmart. I get mine from my local health food store.
If you try it, let me know what you think. You can read all about it if you google it.
Lisa P.
PS. I forgot to mention that I stopped taking the expensive supplements for my joints and only take the Devils Claw now and things are just fine.0 -
This comment has been removed by the Moderatorscouty said:Check out Devils Claw
Pat,
I'm way out from chemo (8 months of folfox w/ avastin in 2004) but experienced the pain and stiff joints for years until I found a few supplements that helped me. One in particular was pretty expensive but I stuck with it. In 2008, I decided my fat old fat butt needed to start running again. I had run for years until I hit 40 and always enjoyed it and thought I'd do it again in my mid-50s. I hurt my knee last year and surgery wasn't going to do much good so I rehabed it with bike riding and exercises but anytime I tried to run it would swell and hurt like hell. I was also moving around like an "old person".
My sports med doc knows I don't do meds unless absolutely necessary so he recommended the herb Devils Claw (a plant that grows in deserts and has tentacles that look like a "devils fingers", hence the name). It is an natural anti-inflamatory for joint pain and arthritis. It was only $9 for 100 capsules so I started talking it mid March. I noticed a difference in a week and swear by it now. I take it once a day now when needed but my joint pain and knee swelling are long gone!!!
On a side not, my 8 year old boxer has hip dysplasia that was getting pretty bad. I looked on the internet and saw some devils claw oil for animals and decided to give her part of one of my capsule and now a month later she is much more nibble. Great stuff and no side effects!!
Be careful with the anti-inflamatory meds, they all have side effect and be sure to NEVER take them on an empty stomach since they erode the lining of the stomach and intestines.
I have a friend who founds hers at Walmart. I get mine from my local health food store.
If you try it, let me know what you think. You can read all about it if you google it.
Lisa P.
PS. I forgot to mention that I stopped taking the expensive supplements for my joints and only take the Devils Claw now and things are just fine.0 -
Joint Painunknown said:This comment has been removed by the Moderator
Hi all,
I too had the joint pain, stiff fingers, it was awful. I finished chemo (oxaliplatin and xeloda) last June, 2009. It and the neuropathy both started the last week of chemo. The joint pain was with me through at least December and nothing I took helped, so I just lived with it. My fingers were so stiff in the morning I had to run them under warm water to get them going and it was very hard to button my buttons, clasps, etc.
The tingling in my hands was intense at first and slowly start to melt alway around Nov/Dec of 2009. It's barely there now, but notice it comes on a little bit if my hands get cold. The feet lasted longer and still have some tingling, but it's like a dull tingling now -- if for some reason it didn't go away I could live with it. I still can't wear my stiletto's, I tried and made it only 2 blocks, my feet hurt too much in the really high pointy shoes, that fill my entire closet
But I found a nice heel w/a small platform and can wear those, hallelujah.
The rest of my joints were in lots of pain too and also walked like an old lady. My friends and I would get out the car for dinner and they'd be practically at the restaurant and I was still just walking away from the car - it was awful. That too has subsided, but the knees are still a little stiff when I first get up from sitting and then they feel fine and my steps are almost back to normal. I'm much quicker than I was even 5 months ago. So it all starts to fade after a while, but I think we'll have some kind of after-effect for a long time.
For me...it beats the alternative
Keep healthy all.
Luda0 -
Gonna'scouty said:Check out Devils Claw
Pat,
I'm way out from chemo (8 months of folfox w/ avastin in 2004) but experienced the pain and stiff joints for years until I found a few supplements that helped me. One in particular was pretty expensive but I stuck with it. In 2008, I decided my fat old fat butt needed to start running again. I had run for years until I hit 40 and always enjoyed it and thought I'd do it again in my mid-50s. I hurt my knee last year and surgery wasn't going to do much good so I rehabed it with bike riding and exercises but anytime I tried to run it would swell and hurt like hell. I was also moving around like an "old person".
My sports med doc knows I don't do meds unless absolutely necessary so he recommended the herb Devils Claw (a plant that grows in deserts and has tentacles that look like a "devils fingers", hence the name). It is an natural anti-inflamatory for joint pain and arthritis. It was only $9 for 100 capsules so I started talking it mid March. I noticed a difference in a week and swear by it now. I take it once a day now when needed but my joint pain and knee swelling are long gone!!!
On a side not, my 8 year old boxer has hip dysplasia that was getting pretty bad. I looked on the internet and saw some devils claw oil for animals and decided to give her part of one of my capsule and now a month later she is much more nibble. Great stuff and no side effects!!
Be careful with the anti-inflamatory meds, they all have side effect and be sure to NEVER take them on an empty stomach since they erode the lining of the stomach and intestines.
I have a friend who founds hers at Walmart. I get mine from my local health food store.
If you try it, let me know what you think. You can read all about it if you google it.
Lisa P.
PS. I forgot to mention that I stopped taking the expensive supplements for my joints and only take the Devils Claw now and things are just fine.
I'm gonna' try me some Devils claw. Thank you Lisa! I have gastritis so the ibuprofen isn't good for the tummy although it does give relief to the joints.Gonna' find me some devils claw.............
-Pat0 -
I used to eat Moltrin like candyJaylo969 said:Gonna'
I'm gonna' try me some Devils claw. Thank you Lisa! I have gastritis so the ibuprofen isn't good for the tummy although it does give relief to the joints.Gonna' find me some devils claw.............
-Pat
and never took the time to read the directions so I took it on an empty stomach most of the time. Dumb me!!! That is why I had to reply to your post Pat. I have no doubt that I helped give myself my rectal tumor and this was just one way.
Y'all have to let me know how it works for you, okay.
Have a great 4th and Happy Canada Day to our friends up north!!! I saw a park in Vancouver during the Olympics that is now a dream goal of mine to get to and run/walk thru.
Lisa P.0 -
left big toelisa42 said:Yup, me too
Hi Pat,
I definitely have also had issues with joint pain and stiffness. I've been on and off chemo for almost 3 yrs now (mostly on, and am currently on). I'm just 43, so I shouldn't be having all these arthritis issues for someone so young. The worst times for me is first getting up out of bed in the mornings and getting up out of a chair after sitting more than a few minutes and up out of the car after driving. Sitting still too long does me in. Xrays have shown some joint degeneration (arthritis), but just mildly. It sure doesn't feel mild! I look at my feet and think how can it hurt so bad when it really doesn't look like there's a problem?! It's just been in the past couple months that my left big toe joint is getting red and swollen, even though it's been hurting a LOT for a couple of years.
I have found recently that acupuncture can help a lot. My lower spine and right sacral area also gives me a lot of pain and trouble. The last two acupuncture treatments I've gotten (which my cancer center offers for free) have really helped the pain. It's been amazing to me how helpful it's been- I would highly recommend acupuncture!
Best wishes,
Lisa
My husband, Don, had trouble like that with his toe. It turned out to be gout. I also have arthritis and nerve damage in hands and feet, but unlike your toe, I am not having redness and swelling. You might check out gout. Jo Ann0 -
I love you Lisa P.scouty said:I used to eat Moltrin like candy
and never took the time to read the directions so I took it on an empty stomach most of the time. Dumb me!!! That is why I had to reply to your post Pat. I have no doubt that I helped give myself my rectal tumor and this was just one way.
Y'all have to let me know how it works for you, okay.
Have a great 4th and Happy Canada Day to our friends up north!!! I saw a park in Vancouver during the Olympics that is now a dream goal of mine to get to and run/walk thru.
Lisa P.
I realize how much I miss you. I can hardly wait for CP8 so that we can have another reunion. I am going to try the devil's claw also and try to get Don to try it. Jo Ann0 -
wow, my onc said it was unrelated!
I'm like everyone who responded--stiff in the knees and hands in the morning and after sitting for too long. I've even been to a physical therapist since one knee is sooo bad and had bursitis there previously. I finally decided to just get moving and it sounds like that's all I can do. Oh and get some devil's claw
Thanks for the info and the knowledge that I'm not alone out there 0 -
dittotraci43 said:wow, my onc said it was unrelated!
I'm like everyone who responded--stiff in the knees and hands in the morning and after sitting for too long. I've even been to a physical therapist since one knee is sooo bad and had bursitis there previously. I finally decided to just get moving and it sounds like that's all I can do. Oh and get some devil's claw Thanks for the info and the knowledge that I'm not alone out there
Thanks for the Devil's Claw tip --- I'll have to try it for my very sore feet, legs, and hands. As with so many on the board, the hand pain is worst in the morning. But the feet and leg pain is all day. I'm less than one week out from six months of oxi and xeloda so I'm hoping things will improve (for all of us!).0
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