dorri
08-27-2005, 10:32 PM
I mentioned on this board that I haven't been taking my actonel for several weeks to see if the pain and side effects would subside. Well, on Monday it will be a month, and my muscle/joint pain is worse, my CD is giving me a lot of trouble as well. I don't know if the pain is from going off actonel, or if it's from the myalgia flaring and or a complication of CD. Who knows what negative changes the actonel has already made, and if these changes are still remaining in my system.
I went in to see my doctor the other day, and didn't even mention that I wasn't taking the actonel. He's the one that insists that I stay on it. There aren't many options here. So, here we go again.......I wish I knew what was going on??? :confused:
I went in to see my doctor the other day, and didn't even mention that I wasn't taking the actonel. He's the one that insists that I stay on it. There aren't many options here. So, here we go again.......I wish I knew what was going on??? :confused:
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peregrine
08-28-2005, 06:54 AM
I mentioned on this board that I haven't been taking my actonel for several weeks to see if the pain and side effects would subside. Well, on Monday it will be a month, and my muscle/joint pain is worse, my CD is giving me a lot of trouble as well. I don't know if the pain is from going off actonel, or if it's from the myalgia flaring and or a complication of CD. Who knows what negative changes the actonel has already made, and if these changes are still remaining in my system.
I went in to see my doctor the other day, and didn't even mention that I wasn't taking the actonel. He's the one that insists that I stay on it. There aren't many options here. So, here we go again.......I wish I knew what was going on??? :confused:
But you have the last say about your body. Right? I think it important to respect one's own instincts. Doctors do not "always know best". What are your Dexa numbers? Have you read the book The Myth of Osteoporosis?
I went in to see my doctor the other day, and didn't even mention that I wasn't taking the actonel. He's the one that insists that I stay on it. There aren't many options here. So, here we go again.......I wish I knew what was going on??? :confused:
But you have the last say about your body. Right? I think it important to respect one's own instincts. Doctors do not "always know best". What are your Dexa numbers? Have you read the book The Myth of Osteoporosis?
CrohnieToo
08-28-2005, 10:03 AM
Dorri, which doctor are you seeing who wants you on the Actonel? Family doctor, endocrinologist, rheumatologist, gastroeneterologist, gynecologist?
Can you tell if the pain is joint and bone or whether it is muscle? Sometimes we can, sometimes we can't. And I've had muscle pain from rotator cuff syndrome that I would have sworn was upper arm bone pain.
Anyway, look to your CD as the cause. Especially since the direct CD symptoms have increased. Have you given any consideration to Enbrel, Methotrexate, Remicade or Humira? They would treat both the extraintestinal bone, joint and muscle symptoms as well as the CD itself, altho Enbrel is the least likely to soothe the direct CD symptoms. It could well be that the Actonel aggravated the CD which then increased the aches and pains, a double whammy so to speak.
I know when Actonel and Fosamax were first suggested to me I felt like I was being given a choice of disintegrating to bone power dust or being carved up like a turkey. I opted to take my chances with the osteoporosis and placate and keep the CD happy. Thank goodness for Forteo, I can now at least do something for my osteoporosis that isn't risking setting off my CD!
Good luck and God bless!!!
Can you tell if the pain is joint and bone or whether it is muscle? Sometimes we can, sometimes we can't. And I've had muscle pain from rotator cuff syndrome that I would have sworn was upper arm bone pain.
Anyway, look to your CD as the cause. Especially since the direct CD symptoms have increased. Have you given any consideration to Enbrel, Methotrexate, Remicade or Humira? They would treat both the extraintestinal bone, joint and muscle symptoms as well as the CD itself, altho Enbrel is the least likely to soothe the direct CD symptoms. It could well be that the Actonel aggravated the CD which then increased the aches and pains, a double whammy so to speak.
I know when Actonel and Fosamax were first suggested to me I felt like I was being given a choice of disintegrating to bone power dust or being carved up like a turkey. I opted to take my chances with the osteoporosis and placate and keep the CD happy. Thank goodness for Forteo, I can now at least do something for my osteoporosis that isn't risking setting off my CD!
Good luck and God bless!!!
dorri
08-29-2005, 12:01 AM
Peregrine, thanks for the reply. No, I haven't read the book the Myth of Osteoporosis, but it sounds like I should. My last bone density was 2.6 at the spine and 2.7 at the hip. It's time for me to get tested again, but this past year has been so bad with my joints etc....I'm scared, because it feels like my bones are smaller so I told the doctor I don't want to go just yet.
But maybe that's playing the fools way out because IF the bone density test shows that actonel isn't helping, then maybe they will look into helping me with something else.
C2 thanks, I was in so much pain yesterday, that I crawled up and had a good cry. I do feel better today. My pain is in my joints and muscles, although the bone around my joints is very tender to touch. On some days it feels like I was lifting a ton of bricks all night and pulled or tore most of my joints and muscles. The pain is not in the long bones of my body. I got quite the lesson to differentiate, when I had a reaction to an iron infusion and ended up with pain in the length of my bones, this pain is not the same. I've been through a slew of tests with everything coming back ok. So the rheumatologist ended up diagnosing me with myalgia and arthralgia. Maybe I should take their word for it, and quit second guessing them, even though I feel that something must of set this off. My doctor is going to run some of the arthritis tests again, to see if anything shows up this time.
My family doctor, and my rheumatologist insist that I stay on the actonel. My gynecologist was treating me with Evista before I started Actonel. Unfortunately, my bone density test revealed that the osteoporosis had worsened, so he told me to take evista along with the actonel. I only did it for a month or so and dropped it soon after, because it seemed pointless to continue with a treatment that didn't help.
I complained to my GI about the pain, but he said he didn't know enough about Actonel to comment on it regarding the affect it may have on CD. He gave me prevacid to try to counteract some of the gastric affects..It doesn't really help that much.
I've been on remicade and didn't do well on it. I had extreme muscle fatigue that didn't go away after a few days, it continued for weeks. I had to hold myself up against the counter to do the dishes. It didn't do much for the CD either. They won't try humira because of my reaction to remicade.
I've also been on 6MP and didn't do well on that either.
My GI offered to give me an injection of methotrexate ( I think that was the name of it) but I declined because I had pain in more than one joint and from what I understood it was to be injected in the sore joint. ( I still don't understand it fully.)
I'm happy that you are doing well on the Forteo. Unfortunately, I can't get it yet but when it is available I will certainly be considering it.
Sorry this is so long , thanks for listening.
But maybe that's playing the fools way out because IF the bone density test shows that actonel isn't helping, then maybe they will look into helping me with something else.
C2 thanks, I was in so much pain yesterday, that I crawled up and had a good cry. I do feel better today. My pain is in my joints and muscles, although the bone around my joints is very tender to touch. On some days it feels like I was lifting a ton of bricks all night and pulled or tore most of my joints and muscles. The pain is not in the long bones of my body. I got quite the lesson to differentiate, when I had a reaction to an iron infusion and ended up with pain in the length of my bones, this pain is not the same. I've been through a slew of tests with everything coming back ok. So the rheumatologist ended up diagnosing me with myalgia and arthralgia. Maybe I should take their word for it, and quit second guessing them, even though I feel that something must of set this off. My doctor is going to run some of the arthritis tests again, to see if anything shows up this time.
My family doctor, and my rheumatologist insist that I stay on the actonel. My gynecologist was treating me with Evista before I started Actonel. Unfortunately, my bone density test revealed that the osteoporosis had worsened, so he told me to take evista along with the actonel. I only did it for a month or so and dropped it soon after, because it seemed pointless to continue with a treatment that didn't help.
I complained to my GI about the pain, but he said he didn't know enough about Actonel to comment on it regarding the affect it may have on CD. He gave me prevacid to try to counteract some of the gastric affects..It doesn't really help that much.
I've been on remicade and didn't do well on it. I had extreme muscle fatigue that didn't go away after a few days, it continued for weeks. I had to hold myself up against the counter to do the dishes. It didn't do much for the CD either. They won't try humira because of my reaction to remicade.
I've also been on 6MP and didn't do well on that either.
My GI offered to give me an injection of methotrexate ( I think that was the name of it) but I declined because I had pain in more than one joint and from what I understood it was to be injected in the sore joint. ( I still don't understand it fully.)
I'm happy that you are doing well on the Forteo. Unfortunately, I can't get it yet but when it is available I will certainly be considering it.
Sorry this is so long , thanks for listening.
peregrine
08-29-2005, 07:15 AM
Dorri,
Osteoporosis does not cause pain (unless you have fractures); however, the medicine they prescribe for it certainly can.
This, of course, is just my opinion, but I don't see that your dexa numbers are so extremely high that there would be that much concern that would necessitate taking dual medications. Please do read the Myth book. My problems started with those medicaitons and ended when I stopped taking them. You will do what you think best for your body, but I also woudn't buy into the scare tactics that are often employed by docs,often just out of ignorance of all the facts.
All the best!
Osteoporosis does not cause pain (unless you have fractures); however, the medicine they prescribe for it certainly can.
This, of course, is just my opinion, but I don't see that your dexa numbers are so extremely high that there would be that much concern that would necessitate taking dual medications. Please do read the Myth book. My problems started with those medicaitons and ended when I stopped taking them. You will do what you think best for your body, but I also woudn't buy into the scare tactics that are often employed by docs,often just out of ignorance of all the facts.
All the best!
Linni
08-30-2005, 09:38 PM
I have been off Fosamax for almost a year and STILL suffering mightily with leg pains. Walking and standing are difficult for me sometimes. I'm pretty sure that this is from the Fosamax as I never had one inkling of this kind of pain before I went on it.
I have an appointment with my dr at the end of this month, and she wants me to go back on Fosamax, but I've sort of decided that, hey, this is my body. I must listen to it.
So, stick to your guns - listen to yuor body.And read The Myth of Osteoporosis.
I have an appointment with my dr at the end of this month, and she wants me to go back on Fosamax, but I've sort of decided that, hey, this is my body. I must listen to it.
So, stick to your guns - listen to yuor body.And read The Myth of Osteoporosis.
dorri
08-30-2005, 10:41 PM
Thanks Peregrine and Linni. Well, I did it, I popped the pill yesterday...groan.... I was so confused because the pain lingered when I wasn't on it for a few weeks, so I was already starting to think that maybe the pain wasn't from the actonel. That's what makes it so hard, trying to pinpoint the actual cause of the pain. Could it be that the actonel has made some permanent changes in my bones, so the pain will linger whether I'm on the actonel or not?
With CrohnieToo's explanation of having your bones turn to dust, it makes one wonder about the long term effects of this drug? Actonel hasn't been around all that long, with fosamax being on the market a little longer. I haven't come across many (if any) personal testimonies of people taking bisphosphonates since they first came out, but I sure would like to hear their story. I hope they are still walking around and didn't turn to dust. My concern being, the doctor's are now giving out these medications to younger and younger people who have a longer life span than an eldery person and will have to take this medication longer. Do they know what long term effect it will have on them? Sometimes I have to wonder if the drug companies aren't making osteoporosis a bigger issue than it actually is, soley for their own profit.
Where can you buy The Myth of Osteoporosis book? Is it available in book stores or do you have to buy it direct?
Again thanks for the replies.
With CrohnieToo's explanation of having your bones turn to dust, it makes one wonder about the long term effects of this drug? Actonel hasn't been around all that long, with fosamax being on the market a little longer. I haven't come across many (if any) personal testimonies of people taking bisphosphonates since they first came out, but I sure would like to hear their story. I hope they are still walking around and didn't turn to dust. My concern being, the doctor's are now giving out these medications to younger and younger people who have a longer life span than an eldery person and will have to take this medication longer. Do they know what long term effect it will have on them? Sometimes I have to wonder if the drug companies aren't making osteoporosis a bigger issue than it actually is, soley for their own profit.
Where can you buy The Myth of Osteoporosis book? Is it available in book stores or do you have to buy it direct?
Again thanks for the replies.
CrohnieToo
08-31-2005, 09:09 AM
Dorri, don't take my comment regarding our bones turning to dust w/o treatment to heart. It was just an expression. All I meant was it seemed I could risk ending up crippled or in a wheelchair due to compression and other fractures of weakened bones by not treating the osteoporosis to avoid the risks to the Crohn's disease. There are some crohnies taking Actonel or Fosamax w/o a worsening of their Crohn's. It is just my PERSONAL decision not to take that risk.
dorri
08-31-2005, 12:23 PM
CrohnieT thanks, and no I'm not taking it to heart, infact I'm grateful for your views, opinion and the valuable information you provide (keep it coming), and I do know that your decisions are soley your own and personal, just as mine are when I post. LoL, we turn to dust if we don't take meds, and we sometimes turn to dust if we do take them (that's what I was referring to in my reply), but one thing is inevitable, we will all turn to dust eventually regardless of what we do.
Hope you aren't offended that I used your name in my post. I apologize. Have an nice day.
Hope you aren't offended that I used your name in my post. I apologize. Have an nice day.
CrohnieToo
08-31-2005, 10:26 PM
Would you call that taking my name in vain??? :rolleyes:
Heaven's no. I didn't take offense at your mentioning my name. Do you sometimes get the feeling that no matter what we decide to do its still just a crap shoot? :eek:
Heaven's no. I didn't take offense at your mentioning my name. Do you sometimes get the feeling that no matter what we decide to do its still just a crap shoot? :eek:
dorri
09-01-2005, 12:12 AM
LoL, at times it does seem that way. My pharmacist told me that calcitonin is available here but since this drug is a salmon polypeptide and I'm allergic to salmon, I don't know if this drug would affect me in an adverse way. Also, I'm not too keen on irritating my nasal passages.
When was Forteo approved for osteoporosis in your country? Canada is usually 3-5 years behind the US when it comes to approving drugs and covering some or all of the costs. It may be available somewhere in Canada, but it's not covered at this time. I guess it will have to wait. In the meantime, the doctor's continue to prescribe what is available here, which isn't much to begin with.
When was Forteo approved for osteoporosis in your country? Canada is usually 3-5 years behind the US when it comes to approving drugs and covering some or all of the costs. It may be available somewhere in Canada, but it's not covered at this time. I guess it will have to wait. In the meantime, the doctor's continue to prescribe what is available here, which isn't much to begin with.
taape
09-01-2005, 01:30 AM
I think some time during 2002 because the package inserts say updated 2003.
majidak
09-01-2005, 08:39 PM
I have recently been diagnosed with RA, I'm on METX, Enbrel, and predison? I'm very concern about the cummulative side effect of these med. Anyone is taking these three? any advice,
Thanks,
majidak
Thanks,
majidak
taape
09-01-2005, 10:40 PM
Majidak,
Although I haven't taken those medications and can't answer your question. I do have a question about how well the Enbrel works for pain and inflammation - can you tell that it's working?
Although I haven't taken those medications and can't answer your question. I do have a question about how well the Enbrel works for pain and inflammation - can you tell that it's working?
dorri
09-02-2005, 12:51 AM
Although I haven't taken METX or Enbrel, I have taken prednisone for many years and that is why I'm now on actonel. Prednisone may cause a loss of calcium and result in bone fractures and degeneration of the ends of the large bones in the hip. I wish they would have told me this years ago.