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I know that there are a few PP with Raynaud's Phenomenon and wanted to know if any of you are taking anything for it. My has progressively gotten worse each year and I have been putting "hot hands" in mittens. When I went to my Rheumatologist he wanted to put me on Procardia XL once a day. I don't know if there is any gluten, dairy or soy in this stuff either.
Also, does anybody know anything about Limited Scleroderma? Does this have any connection with cc? (Tex, I bet you can help me with this one).
Love,
Rose
Raynaud's Phenomenon Question
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Hi Rose,
I didn't know there was anything you could take for it. I guess I've just always lived with it, but yours sounds like it may be more severe than mine. I also use the "hot hands" packs when I have to be outside for any length of time in winter. Also, exercise helps temporarily, but I'm sure you're aware of that since you exercise so regularly. I guess that's not very helpful, but that's all I can think of at the moment.
Love,
Courtney
I didn't know there was anything you could take for it. I guess I've just always lived with it, but yours sounds like it may be more severe than mine. I also use the "hot hands" packs when I have to be outside for any length of time in winter. Also, exercise helps temporarily, but I'm sure you're aware of that since you exercise so regularly. I guess that's not very helpful, but that's all I can think of at the moment.
Love,
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Hi Rose,
I have to say that I know very little about Limited Scleroderma. On the surface, it would appear that it should be connected with CC, but after doing some research, I can't find any documentation to confirm a connection. In fact, the one example that I found with concurrent CC and systemic sclerosis, pointed out that co-occurrence is extremely rare. Of course, both diseases are considered rare, to begin with, so it's no surprise that co-occurrence would be even rarer.
As far as Procardia XL is concerned, I don't see any ingredients in it that should cause any intolerance problems.
As common as Raynaud's phenomenon seems to be among the members of this board, (along with the other CREST symptoms), I have a hunch that some sort of connection does, indeed, exist. Also, it appears that controlling the symptoms of MC, minimizes, (and in some cases, eliminates), the symptoms of many/most of these other autoimmune diseases, which would also suggest a connection.
Love,
Tex
I have to say that I know very little about Limited Scleroderma. On the surface, it would appear that it should be connected with CC, but after doing some research, I can't find any documentation to confirm a connection. In fact, the one example that I found with concurrent CC and systemic sclerosis, pointed out that co-occurrence is extremely rare. Of course, both diseases are considered rare, to begin with, so it's no surprise that co-occurrence would be even rarer.
As far as Procardia XL is concerned, I don't see any ingredients in it that should cause any intolerance problems.
As common as Raynaud's phenomenon seems to be among the members of this board, (along with the other CREST symptoms), I have a hunch that some sort of connection does, indeed, exist. Also, it appears that controlling the symptoms of MC, minimizes, (and in some cases, eliminates), the symptoms of many/most of these other autoimmune diseases, which would also suggest a connection.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Courtney,
I wear mittens all the time (even exercising). I often have to go ride my exercise bike just to warm up my hands (I was running them under hot water and decided that it was not a smart idea - duh). When I get an attack my fingers hurt so much it takes about 1 1/2 hours to get them back to normal (even with the hot hands).
Tex,
Thank you so much for your input. I didn't know if there was a connection b/c of the gastrointestonal effects of the LS. I get nauseated after I eat breakfast and dinner only. Not a problem with lunch. It was just hunch and thought I would ask you if you thought there was any corelation with the two. I really appreciate you investigating the Procardia XL for me. I could not find anything on it and I was so scared of taking any new medications for fear of contamination with gluten, lactose or soy.
Love,
Rose
I wear mittens all the time (even exercising). I often have to go ride my exercise bike just to warm up my hands (I was running them under hot water and decided that it was not a smart idea - duh). When I get an attack my fingers hurt so much it takes about 1 1/2 hours to get them back to normal (even with the hot hands).
Tex,
Thank you so much for your input. I didn't know if there was a connection b/c of the gastrointestonal effects of the LS. I get nauseated after I eat breakfast and dinner only. Not a problem with lunch. It was just hunch and thought I would ask you if you thought there was any corelation with the two. I really appreciate you investigating the Procardia XL for me. I could not find anything on it and I was so scared of taking any new medications for fear of contamination with gluten, lactose or soy.
Love,
Rose
Tex,
BTW, I have started getting d again. No explosions yet, but I have gotten "mushy." I am taking the SSRI every other day now and will continue that until next week and then I will be off them completely and hopefully that will help. But, on the other hand we did my Humira injection last night.
Rose
BTW, I have started getting d again. No explosions yet, but I have gotten "mushy." I am taking the SSRI every other day now and will continue that until next week and then I will be off them completely and hopefully that will help. But, on the other hand we did my Humira injection last night.
Rose
Rose,
Pfizer has the info on Procardia XL posted on the net as a PDF file:
http://media.pfizer.com/files/products/ ... dia_xl.pdf
Scleroderma can affect virtually any part of the GI tract, but the lower esophageal sphincter is most often affected. However, I suspect that the normal digestive motions of the stomach, and the phloric sphincter are frequently affected, also, (the phloric sphincter is the valve at the bottom of the stomach), and this can certainly cause nausea, since those interferences would tend to cause delayed gastric emptying, (delayed emptying of the stomach contents). When gastric emptying is delayed, the chime, (partially digested food), may begin to "spoil", for lack of further timely digestion, and this can cause nausea, gas, etc, plus it can cause additional compromised digestion further down the line. Here's a reference on that:
http://www.ncbi.nlm.nih.gov/pubmed/15080266
Hmmmmmmm. The mushy stools are probably due to the Entocort wearing off, but maybe the situation will improve when the effects of the Humira injection wind down. As I'm sure you're well aware, connective tissue diseases, together with various meds, to treat various issues, can really complicate things.
I'm hoping the D will settle down again, after a day or so.
Love,
Tex
Pfizer has the info on Procardia XL posted on the net as a PDF file:
http://media.pfizer.com/files/products/ ... dia_xl.pdf
Scleroderma can affect virtually any part of the GI tract, but the lower esophageal sphincter is most often affected. However, I suspect that the normal digestive motions of the stomach, and the phloric sphincter are frequently affected, also, (the phloric sphincter is the valve at the bottom of the stomach), and this can certainly cause nausea, since those interferences would tend to cause delayed gastric emptying, (delayed emptying of the stomach contents). When gastric emptying is delayed, the chime, (partially digested food), may begin to "spoil", for lack of further timely digestion, and this can cause nausea, gas, etc, plus it can cause additional compromised digestion further down the line. Here's a reference on that:
http://www.ncbi.nlm.nih.gov/pubmed/15080266
Hmmmmmmm. The mushy stools are probably due to the Entocort wearing off, but maybe the situation will improve when the effects of the Humira injection wind down. As I'm sure you're well aware, connective tissue diseases, together with various meds, to treat various issues, can really complicate things.
I'm hoping the D will settle down again, after a day or so.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Rose,
My Mom was diagnosed with scleroderma in the mid 80's, with a life expectancy of about 7 years, at that time. She also had diagnosed with lupus earlier. She would get a prescription, go read the physician desk reference and then decide if she wanted the side effects or not. She never had any gastro problems. In fact I can remember when I was diagnosed with MC she told me it couldn't be "that bad". A few months later she came down with a terrible case of the flu and told me she had a better understanding of what I was going through.
Basically I guess I wanted to tell you she didn't find anything that she felt like she wanted to face the side effects so took nothing. Her coldness came more in her legs and feet so she always wore heavy socks. I lost her 18 months ago to lung cancer. The last year or so of her life they were doing more tests for her kidneys and heart because she was showing decreased function in those organs. As Tex said, it can hit so many organs beside the gi tract.
I sure hope you can find something to help you feel on top of the world again.
Jan
My Mom was diagnosed with scleroderma in the mid 80's, with a life expectancy of about 7 years, at that time. She also had diagnosed with lupus earlier. She would get a prescription, go read the physician desk reference and then decide if she wanted the side effects or not. She never had any gastro problems. In fact I can remember when I was diagnosed with MC she told me it couldn't be "that bad". A few months later she came down with a terrible case of the flu and told me she had a better understanding of what I was going through.
Basically I guess I wanted to tell you she didn't find anything that she felt like she wanted to face the side effects so took nothing. Her coldness came more in her legs and feet so she always wore heavy socks. I lost her 18 months ago to lung cancer. The last year or so of her life they were doing more tests for her kidneys and heart because she was showing decreased function in those organs. As Tex said, it can hit so many organs beside the gi tract.
I sure hope you can find something to help you feel on top of the world again.
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Jan, I wanted to thank you for your input and sorry to hear about your loss. I have not been diagnosed with this I just didn't know if there was a connection.
Tex, thank you for the link. After reading that, my dh would like me to just keep doing what I am currently doing and to stop polluting my body with drugs I don't really need. I don't want anymore s/e (the Entocort's s/e were enough for me). So far I have only had the 1 bm this am and I sure did think that more would be on the way after that one, but I am one happy camper so far.
Love,
Rose
Tex, thank you for the link. After reading that, my dh would like me to just keep doing what I am currently doing and to stop polluting my body with drugs I don't really need. I don't want anymore s/e (the Entocort's s/e were enough for me). So far I have only had the 1 bm this am and I sure did think that more would be on the way after that one, but I am one happy camper so far.
Love,
Rose
Rose,
I tend to agree with your husband. One of the problems with meds is that they all have side effects, and in many cases, additional meds are prescribed to relieve some of the side effects, and then other specialists will prescribe additional drugs for other purposes, which interfere with some to the existing drug treatments, and eventually it can become a huge convoluted mess, where the patient's symptoms are worse than when she/he started, and the doctors will still be trying to prescribe more drugs.
We have more than a few members, who have decided to just get off the merry-to-round, and discontinue all the drug treatments that they were taking, and most of them have found that they felt just fine, once all the drugs left their system.
Just a single BM all morning, sounds mighty encouraging.
Love,
Tex
I tend to agree with your husband. One of the problems with meds is that they all have side effects, and in many cases, additional meds are prescribed to relieve some of the side effects, and then other specialists will prescribe additional drugs for other purposes, which interfere with some to the existing drug treatments, and eventually it can become a huge convoluted mess, where the patient's symptoms are worse than when she/he started, and the doctors will still be trying to prescribe more drugs.
We have more than a few members, who have decided to just get off the merry-to-round, and discontinue all the drug treatments that they were taking, and most of them have found that they felt just fine, once all the drugs left their system.Just a single BM all morning, sounds mighty encouraging.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
I always try to go without any meds if I can (except for Humira for my psoriatic arthritis). Even after surgery I would not take any pain medication b/c I just hate being doped-up. My MIL (a retired nurse) wants me to take this stuff b/c she is afraid that I will end up getting my fingers amputated.
BTW, I ended up have a few more explosions, but so far the battle field is quiet today.
Love,
Rose
I always try to go without any meds if I can (except for Humira for my psoriatic arthritis). Even after surgery I would not take any pain medication b/c I just hate being doped-up. My MIL (a retired nurse) wants me to take this stuff b/c she is afraid that I will end up getting my fingers amputated.
BTW, I ended up have a few more explosions, but so far the battle field is quiet today.
Love,
Rose
Rose,
Please don't let my above comments discourage you from taking a med to treat any form of sclerosis. I know very little about those issues, and while we know that MC can be effectively treated without meds, we don't actually have any information or experience to suggest that approach might also apply to connective tissue issues. It's a completely different issue.
I certainly wouldn't want you to risk suffering from permanent damage, because of something that I said. My knowledge about connective tissue diseases is very limited, (as if it's not limited for everything else, also.
).
Love,
Tex
Please don't let my above comments discourage you from taking a med to treat any form of sclerosis. I know very little about those issues, and while we know that MC can be effectively treated without meds, we don't actually have any information or experience to suggest that approach might also apply to connective tissue issues. It's a completely different issue.
I certainly wouldn't want you to risk suffering from permanent damage, because of something that I said. My knowledge about connective tissue diseases is very limited, (as if it's not limited for everything else, also.
).Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
I have not been diagnosed with any form of sclerosis other than raynaud's phenomenon. It is just this year has been the worst and I don't know anyone else who has this (except for some of the PP) and I just wanted to know anybody took anything for it since my Rheumatologist prescribed this stuff to open up the blood vessels in my fingers. I think that my MIL is over reacting and since I do not have any ulcers on my fingers I don't think I have to worry about any amputations any time soon. I just don't want to pollute my body anymore than I am. I think if it was something serious my Rheumatologist would definitely tell me so.
I appreciate your comments and concerns and value everyones opinion.
Love,
Rose
I have not been diagnosed with any form of sclerosis other than raynaud's phenomenon. It is just this year has been the worst and I don't know anyone else who has this (except for some of the PP) and I just wanted to know anybody took anything for it since my Rheumatologist prescribed this stuff to open up the blood vessels in my fingers. I think that my MIL is over reacting and since I do not have any ulcers on my fingers I don't think I have to worry about any amputations any time soon. I just don't want to pollute my body anymore than I am. I think if it was something serious my Rheumatologist would definitely tell me so.
I appreciate your comments and concerns and value everyones opinion.
Love,
Rose
My mother was diagnosed with raynaud's disease but i am not aware she was prescribed any medication for it...shes passed now though...
The funny thing is i have the hot hands and feet and this has only started within the past couple of months...im beginning to think i might have raynaud's too...sometimes my feet and hands are on fire, very swollen and pulsate...
i have not checked this out with my doc though so reading your post has got me thinking...
The funny thing is i have the hot hands and feet and this has only started within the past couple of months...im beginning to think i might have raynaud's too...sometimes my feet and hands are on fire, very swollen and pulsate...
i have not checked this out with my doc though so reading your post has got me thinking...
Angy ;)
Rose,
Don't think I'm oversimplifying your issues at all, but this year has been the worst for me, too. In my own case, I think it's at least partly due to the fact that this winter has been so insanely cold! A normal person can't keep warm. I notice some years my hands will turn completely red/blue and crack, and other years, they're okay. This has been a bad year, and I blame it on the cold coming from within and without.
Love,
Courtney
Don't think I'm oversimplifying your issues at all, but this year has been the worst for me, too. In my own case, I think it's at least partly due to the fact that this winter has been so insanely cold! A normal person can't keep warm. I notice some years my hands will turn completely red/blue and crack, and other years, they're okay. This has been a bad year, and I blame it on the cold coming from within and without.
Love,
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Angy,
I don't know if it is the same thing, but I guess it could be. My hands are not hot, but cold, numb and painful. It feels like frost bite or you stuck your hands in ice water. The pain is unbelievable. Your fingers turn white, then blue and red. It really sucks, but I can live with it, lets face it, it is better than the symptoms of cc thats for sure. I use the hot hand packs in mittens that I have to wear all the time.
Courtney, although we have had some cold snaps, it has been close to 70 degrees a couple of time and I still have no relief. It is weird but every time I eat they seem to go cold (even if I am eating something hot) I don't know if it is b/c of the digestion process drawing the blood away from my hands or what. Today its 65 and I am wearing my gloves. It is crazy stuff.
Love,
Rose
I don't know if it is the same thing, but I guess it could be. My hands are not hot, but cold, numb and painful. It feels like frost bite or you stuck your hands in ice water. The pain is unbelievable. Your fingers turn white, then blue and red. It really sucks, but I can live with it, lets face it, it is better than the symptoms of cc thats for sure. I use the hot hand packs in mittens that I have to wear all the time.
Courtney, although we have had some cold snaps, it has been close to 70 degrees a couple of time and I still have no relief. It is weird but every time I eat they seem to go cold (even if I am eating something hot) I don't know if it is b/c of the digestion process drawing the blood away from my hands or what. Today its 65 and I am wearing my gloves. It is crazy stuff.
Love,
Rose