Joint Pain

J

Juniper

Guest
I started my course of ivs yesterday as they said this may help the joint issue. I've been on 10mg prednisolne which has been a godsend i've hardly had any pain but they would rather i didn't stay on this for a length of time as it causes other issues. I'm being put on the study starting 2nd Feb. I go for an MRI and an Ultasound on my joints and then see a rheumatologist who is working with my CF doctor on me and other patients to see how CF and arthritis are related and how to treat it. I live in the UK so i'm not sure what happens to the results but i will enquire and try to pass on anything i find out that may help.
I like many of you on here can cope with the rest but the pain was so debilitating and lack of sleep from the pain just makes you more run down and susceptible to infection.
 
J

Juniper

Guest
I started my course of ivs yesterday as they said this may help the joint issue. I've been on 10mg prednisolne which has been a godsend i've hardly had any pain but they would rather i didn't stay on this for a length of time as it causes other issues. I'm being put on the study starting 2nd Feb. I go for an MRI and an Ultasound on my joints and then see a rheumatologist who is working with my CF doctor on me and other patients to see how CF and arthritis are related and how to treat it. I live in the UK so i'm not sure what happens to the results but i will enquire and try to pass on anything i find out that may help.
I like many of you on here can cope with the rest but the pain was so debilitating and lack of sleep from the pain just makes you more run down and susceptible to infection.
 
D

dbsholes

New member
Okay... I continue to see additional variables. I do have a call into the National Foundation to talk to someone about this issue - Leslie Hazel. Waiting for a call back. I would love to begin gathering actual email addresses from you guys and develop some questionnaires to gather data. I have a mathematical/computer wizard friend (Dartmouth and Cornell) who is very interested in creating a database of variables. This is the kind of problem that makes his eyes sparkle.

I can offer that I had not been on Cipro or ANY antibiotic for two years prior to my recurrence of joint pain in September. By the time I was put on a ten-day Cipro course in December the joint pain had been awful for three months. So at least for an antibiotic I don't believe that had any correlation in my case. But oral medications, as mentioned in a recent post, certainly could play a role as already mentioned in medical toxicity.

Jen added:

5) Changes in weather. I agree. I used to call my knees a barometer because I could tell when the air pressure was changing just based on how they felt. How many others are affected by simple change in weather and not necessarily a specific "type" of weather?

I would like to add another:
6) lack of physical activity. This may not apply to all of you (especially you luv2run) but it certainly applies to me for the past few years. And of course this becomes self-fulfilling and cyclical. It's difficult to get out and move when you hurt so much, isn't it?

I have had a rotten four years; with a divorce, financial problems that so many are experiencing right now, depression, the challenges of being a half-time full-time father (as I call it), etc. So here we can also add:

7) stress; and:
8) depression.

For those who would like to really begin digging into this please email me directly at david@sholes.org.

Thanks,
David Sholes
Bennington Vermont
 
D

dbsholes

New member
Okay... I continue to see additional variables. I do have a call into the National Foundation to talk to someone about this issue - Leslie Hazel. Waiting for a call back. I would love to begin gathering actual email addresses from you guys and develop some questionnaires to gather data. I have a mathematical/computer wizard friend (Dartmouth and Cornell) who is very interested in creating a database of variables. This is the kind of problem that makes his eyes sparkle.

I can offer that I had not been on Cipro or ANY antibiotic for two years prior to my recurrence of joint pain in September. By the time I was put on a ten-day Cipro course in December the joint pain had been awful for three months. So at least for an antibiotic I don't believe that had any correlation in my case. But oral medications, as mentioned in a recent post, certainly could play a role as already mentioned in medical toxicity.

Jen added:

5) Changes in weather. I agree. I used to call my knees a barometer because I could tell when the air pressure was changing just based on how they felt. How many others are affected by simple change in weather and not necessarily a specific "type" of weather?

I would like to add another:
6) lack of physical activity. This may not apply to all of you (especially you luv2run) but it certainly applies to me for the past few years. And of course this becomes self-fulfilling and cyclical. It's difficult to get out and move when you hurt so much, isn't it?

I have had a rotten four years; with a divorce, financial problems that so many are experiencing right now, depression, the challenges of being a half-time full-time father (as I call it), etc. So here we can also add:

7) stress; and:
8) depression.

For those who would like to really begin digging into this please email me directly at david@sholes.org.

Thanks,
David Sholes
Bennington Vermont
 
L

lizlas

Guest
I havent read thru all the posts, so i dont know if this has been said......
but years afterNOT using any fluquinolone abx (cipro, levaquin, avelox etc) the joints may become affected , even after one round of these drugs some people have become debilitated. and normal people who had no long disease but just took them for occasional bronchitis.
I have used these abx countless times, in the last few years I start getting joint pain in knees hips and thumb joints. but when I d be off the abx it would go away.
I stopped cipro weeks ago but joint pain not getting better seems actually to be getting worse. and cipro didnt used to affect me. just the levaquin and the avelox.
So for me I think years of use is catching up.
Lizlas
 
L

lizlas

Guest
I havent read thru all the posts, so i dont know if this has been said......
but years afterNOT using any fluquinolone abx (cipro, levaquin, avelox etc) the joints may become affected , even after one round of these drugs some people have become debilitated. and normal people who had no long disease but just took them for occasional bronchitis.
I have used these abx countless times, in the last few years I start getting joint pain in knees hips and thumb joints. but when I d be off the abx it would go away.
I stopped cipro weeks ago but joint pain not getting better seems actually to be getting worse. and cipro didnt used to affect me. just the levaquin and the avelox.
So for me I think years of use is catching up.
Lizlas
 
D

dbsholes

New member
Lizlas - no, that perspective had not been offered and is very interesting. Thank you.

I did speak to Cindy George at the National foundation in Bethesda and she is not aware of any studies that have been done in this area, nor any that are planned. She suggested that I contact a team of researchers at Dartmouth Hitchcock where there are apparently a group of young doctors who are always looking for research ideas. So I'll be following up on that.

In the meantime..... I need emails from you guys. david@sholes.org

Thanks,
David
 
D

dbsholes

New member
Lizlas - no, that perspective had not been offered and is very interesting. Thank you.

I did speak to Cindy George at the National foundation in Bethesda and she is not aware of any studies that have been done in this area, nor any that are planned. She suggested that I contact a team of researchers at Dartmouth Hitchcock where there are apparently a group of young doctors who are always looking for research ideas. So I'll be following up on that.

In the meantime..... I need emails from you guys. david@sholes.org

Thanks,
David
 
K

kmhbeauty

New member
Ive been getting more joint pain and still on no meds. I think its an autoimmune thing that I have developed. Low immune system and I get the joint pain. The body reacting to something with my immune system. A lot has to do with sleep, the immune system and joint pain. I also get night sweats that come around the joint pain. Even a rash! Cf is lovely! Always something new! I better get to sleep now, I need at least 8 hours a night.
 
J

jester11

New member
Hi guys! I'm a CF patient from Switzerland and I found this topic by accident browsing the internet because of my joint pains with CF. I so much agree with a lot of points you mention which seem to cause this issue (especially cold weather!). I would also like to add alcohol bc I always get these rushes when I'm a night out with and especially if it's a cold night and we're standing outside for example. My doctor gave me Colchicin first, but it did not really get better so I am now starting with plaquenil.

What I wanted to ask is if anybody out there found a possible "solution" or an approach or a drug that really help to deal with this issue? I saw this thread and that most of it is from 2012, so maybe there now is some research about this issue or maybe some of you sorted out something?
 
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