After too much digestive tract trouble with Colchicine, my rheumatologist and I have decided to eliminate meds completely, and just treat the symptoms (mouth ulcers) when they appear.
I thought I would be in a whole different nightmare, but it turns out, I'm doing just fine. I have a steroid paste to use when the ulcers come (surprisingly - they haven't, at least not in any number that would cause concern). My rheumatologist thinks that I have a pretty mild case of Behcet's. I am hoping that I'll outgrow it -- like I outgrew PMS. That's probably silly, but stranger things have happened to my body.
At any rate, I stress the importance of working closely with your rheumatologist to stay in the best of health. Don't ever believe that because you have X, you should be taking X. You should be listening to your body and paying attention to symptoms, triggers and your overall health. Had I done so earlier, I probably wouldn't have had to have an appendectomy last summer.
To manage Behcet's disease, work closely with your physician. Pay strict attention to your dietary triggers. Get exercise. My Behcet's symptoms are closely related to my overall health. When I catch a cold or get the flu, Behcet's symptoms flare. Stay in good health and don't get discouraged if you have an episode of not feeling well because you're having a Behcet's flare. There are plenty of remedies to help get past the symptom phase. If your rheumatologist is against steroid paste, I think its time to shop for a new rheumatologist. Or talk with your dentist.
Regardless, my health has been holding stable since stopping the medication in January. I feel great. I will be monitored a bit closer; have to see the rheumatologist once every six months now, instead of once a year; but not taking meds makes me happy. I'm down to one pill a day for hypertension. Not bad for someone my age.
Wednesday, February 20, 2013
Monday, January 21, 2013
Vision Complications
My eyesight is very bad right now, have had three prescriptions for glasses in 12 months, and my vision continues to decline.
On Wednesday, I am having my first cataract removal surgery, and I am strongly hopeful that this will be the beginning of better vision for me.
It seems that people with Behcet's Disease have some magnification of vision problems, no matter how serious the disease is or how easily symptoms are controlled.
See a good opthamologist regularly, and don't hesitate to call him frequently for any change in visual acuity. Although I dread more surgery, getting rid of my glasses is going to be a wonderful thing for me. I have been annoyed for the past year with having to wear glasses all the time, and to me, the best thing in the world will be to change these frames into sun glasses and never have to be bothered with eyeglasses again. Here's hoping.
On Wednesday, I am having my first cataract removal surgery, and I am strongly hopeful that this will be the beginning of better vision for me.
It seems that people with Behcet's Disease have some magnification of vision problems, no matter how serious the disease is or how easily symptoms are controlled.
See a good opthamologist regularly, and don't hesitate to call him frequently for any change in visual acuity. Although I dread more surgery, getting rid of my glasses is going to be a wonderful thing for me. I have been annoyed for the past year with having to wear glasses all the time, and to me, the best thing in the world will be to change these frames into sun glasses and never have to be bothered with eyeglasses again. Here's hoping.
Tuesday, January 8, 2013
Stopping Colchicine
In 2012, I suffered constant digestive tract issues, which I largely wrote off as diet related. Unfortunately, my poor little old appendix couldn't take it, and in July, I had an appendectomy, which was not a great way to spend the summer.
Lo and behold, I continued to have digestive tract issues after the appendectomy. I contacted my rheumatologist, who advised me to go off colchicine for 2 weeks, then reintroduce it, one pill a day, every other day. The 2 weeks I didn't take colchicine, I was symptom free (digestive tract issues and Behcet's symptoms). As soon as I restarted the colchicine, my digestive tract rebelled. I called the rheumatologist again to tell him I was going off colchicine, and I have. It's been two months, I'll see the doctor in another month and then we can decide what's next.
Meanwhile, if you are suffering from digestive tract issues from taking colchicine, stop it. Putting your body through that kind of distress is worse than enduring mild symptoms of Behcet's Disease.
Your doctor can prescribe a steroid paste for any mouth ulcers that occur, and I certainly intend to see what other options I have for treatment. Lucky for me, I have a very mild case of Behcet's, and I thought I would see many negative effects from not taking colchicine, but they have not materialized. In fact, I feel better than ever most of the time.
Diet is important in Behcet's. I can look at a food now, after five years, and know immediately whether it will cause me distress or not. Keep experimenting with your diet; no processed foods, no food chemicals or additives and no dyes.
It's not as boring as one would think.
Lo and behold, I continued to have digestive tract issues after the appendectomy. I contacted my rheumatologist, who advised me to go off colchicine for 2 weeks, then reintroduce it, one pill a day, every other day. The 2 weeks I didn't take colchicine, I was symptom free (digestive tract issues and Behcet's symptoms). As soon as I restarted the colchicine, my digestive tract rebelled. I called the rheumatologist again to tell him I was going off colchicine, and I have. It's been two months, I'll see the doctor in another month and then we can decide what's next.
Meanwhile, if you are suffering from digestive tract issues from taking colchicine, stop it. Putting your body through that kind of distress is worse than enduring mild symptoms of Behcet's Disease.
Your doctor can prescribe a steroid paste for any mouth ulcers that occur, and I certainly intend to see what other options I have for treatment. Lucky for me, I have a very mild case of Behcet's, and I thought I would see many negative effects from not taking colchicine, but they have not materialized. In fact, I feel better than ever most of the time.
Diet is important in Behcet's. I can look at a food now, after five years, and know immediately whether it will cause me distress or not. Keep experimenting with your diet; no processed foods, no food chemicals or additives and no dyes.
It's not as boring as one would think.
Saturday, June 23, 2012
Avoid Melatonin
I apologize, I neglect this site all the time. But here is a tip. Melatonin is going to interact with colchicine, so if you take colchicine as part of your treatment for Behcet's Disease, avoid taking Melatonin. It took me six months to figure this out, all the while suffering with chronic digestive tract issues. I stopped taking Melatonin when I went on vacation, and immediately, all my symptoms abated. I would rather spend a few nights tossing and turning, trying to fall asleep than to spend so much time with stomach cramps and diarrhea.
I made the big mistake of not talking to my doctor before adding a new substance to my medication routine. He probably could have advised me; or maybe not. Regardless, Melatonin made me quite sick, so I will avoid it in the future.
Just a tidbit of information, too.......my eyesight really got very bad in six months. My opthamologist couldn't believe it, so he tested me for diabetes, which I'm happy to report I do not have. Point is, I waited six months before telling my doctor that my vision was blurry, kept chalking it up to silly things, like my eyes are "tired". Don't do this. If you notice any change in your vision, get in and see your eye doctor immediately. We still don't know why my vision went so bad so quickly, but it was corrected with new glasses and I'm back to 20/20 vision. Sometimes I am SUCH a DOOFAS when it comes to my health.
I made the big mistake of not talking to my doctor before adding a new substance to my medication routine. He probably could have advised me; or maybe not. Regardless, Melatonin made me quite sick, so I will avoid it in the future.
Just a tidbit of information, too.......my eyesight really got very bad in six months. My opthamologist couldn't believe it, so he tested me for diabetes, which I'm happy to report I do not have. Point is, I waited six months before telling my doctor that my vision was blurry, kept chalking it up to silly things, like my eyes are "tired". Don't do this. If you notice any change in your vision, get in and see your eye doctor immediately. We still don't know why my vision went so bad so quickly, but it was corrected with new glasses and I'm back to 20/20 vision. Sometimes I am SUCH a DOOFAS when it comes to my health.
Thursday, February 23, 2012
Probiotics
I take one probiotic tablet everyday. It helps. The colchicine stills wreaks havoc with me periodically, but the probiotic tablet does work. They aren't cheap, but they are effective. I highly recommend this remedy.
I've been surprisingly without mouth ulcers since I started the probiotics a few months ago. I still have bouts of intestinal distress from the Colchicine, but the lack of mouth ulcers is wonderful.
My doctor and I decided to switch to Naproxen for pain relief when I do have mouth ulcers; Tramadol, although very effective for pain relief, makes me dizzy and I just don't have time for that. Sometimes I think that maybe a narcotic pain reliever would help with some of the intestinal crap (no pun intended) that I go through. But narcotics would be my last choice for dealing with pain. Naproxen is surprisingly effective and comes without the brain fog narcotic pain relief brings.
People with Behcet's disease really need to study their diet and eliminate all foods that trigger symptoms. For me, it's been trial and error, but I seem to have found some balance. No processed food. Organic food at least 90% of the time. I seem to have found some long lasting relief from recurrent mouth ulcers with the probiotics.
Last year, I suffered enormous fatigue and had months of recurrent low-grade fevers that just sapped my strength. I don't know why those symptoms ultimately abated, but they did. The fatigue had gotten so bad, I was going to ask for Adderal. Glad I didn't have to, because it seems that when a Behcet's patient tries something new, there is always some sort of response from our body; sometimes good, most times not so good.
I have a very mild case of Behcet's Disease. I truly empathize with people who have a full-blown case of this truly nasty disease. I remember how I felt in the two years my internist failed to make a correct diagnosis. I remember how I suffered on a daily basis and how nothing and no one could help me. I remember wanting to die.
I'm in a good place now with this disease.....but that could change, although remaining positive and optimistic is so important, and relatively impossible when you become just a collection of symptoms.
I think the most important thing a Behcet's patient can do for themselves is find an excellent doctor who listens and is willing to work with you on your treatment. I'm truly blessed to have done that.
I've been surprisingly without mouth ulcers since I started the probiotics a few months ago. I still have bouts of intestinal distress from the Colchicine, but the lack of mouth ulcers is wonderful.
My doctor and I decided to switch to Naproxen for pain relief when I do have mouth ulcers; Tramadol, although very effective for pain relief, makes me dizzy and I just don't have time for that. Sometimes I think that maybe a narcotic pain reliever would help with some of the intestinal crap (no pun intended) that I go through. But narcotics would be my last choice for dealing with pain. Naproxen is surprisingly effective and comes without the brain fog narcotic pain relief brings.
People with Behcet's disease really need to study their diet and eliminate all foods that trigger symptoms. For me, it's been trial and error, but I seem to have found some balance. No processed food. Organic food at least 90% of the time. I seem to have found some long lasting relief from recurrent mouth ulcers with the probiotics.
Last year, I suffered enormous fatigue and had months of recurrent low-grade fevers that just sapped my strength. I don't know why those symptoms ultimately abated, but they did. The fatigue had gotten so bad, I was going to ask for Adderal. Glad I didn't have to, because it seems that when a Behcet's patient tries something new, there is always some sort of response from our body; sometimes good, most times not so good.
I have a very mild case of Behcet's Disease. I truly empathize with people who have a full-blown case of this truly nasty disease. I remember how I felt in the two years my internist failed to make a correct diagnosis. I remember how I suffered on a daily basis and how nothing and no one could help me. I remember wanting to die.
I'm in a good place now with this disease.....but that could change, although remaining positive and optimistic is so important, and relatively impossible when you become just a collection of symptoms.
I think the most important thing a Behcet's patient can do for themselves is find an excellent doctor who listens and is willing to work with you on your treatment. I'm truly blessed to have done that.
Wednesday, November 2, 2011
Intestinal Care
Maybe it's because I have Behcet's Disease.
Maybe it's because I lost 12" of colon to diverticulitis.
Maybe it's because I take Colchocine.
Maybe because, after a tooth extraction, I took exactly four Vicodan tablets, as prescribed, for pain.
Whatever it is, I have just been really miserable with sharp lower abdominal pain for four days, which was only, at last, relieved by Kobucha probiotic tea.
People with Behcet's should be very aware of digestive tract health, and do everything to maintain the right bugs in the right combinations. I lost 3 pounds this week because I stopped eating. It hurt to eat. Anything. Soup filled me up after a few teaspoon and caused sharp pains. Motrin helped the pain. But the real problem was an imbalance in the bugs in the intestines.
Eat yogurt at least twice a week. Drink a few ounces of pro biotic tea, or take a pro biotic tablet a few times every week.
I definitely am going to pay more attention to this part of my body after this miserable week. It's not enough to just eat lots of fruit, vegetables and fiber. Like the pro biotics, be pro-active and do routine maintenance on maintaining your digestive health, even when you feel good.
Maybe it's because I lost 12" of colon to diverticulitis.
Maybe it's because I take Colchocine.
Maybe because, after a tooth extraction, I took exactly four Vicodan tablets, as prescribed, for pain.
Whatever it is, I have just been really miserable with sharp lower abdominal pain for four days, which was only, at last, relieved by Kobucha probiotic tea.
People with Behcet's should be very aware of digestive tract health, and do everything to maintain the right bugs in the right combinations. I lost 3 pounds this week because I stopped eating. It hurt to eat. Anything. Soup filled me up after a few teaspoon and caused sharp pains. Motrin helped the pain. But the real problem was an imbalance in the bugs in the intestines.
Eat yogurt at least twice a week. Drink a few ounces of pro biotic tea, or take a pro biotic tablet a few times every week.
I definitely am going to pay more attention to this part of my body after this miserable week. It's not enough to just eat lots of fruit, vegetables and fiber. Like the pro biotics, be pro-active and do routine maintenance on maintaining your digestive health, even when you feel good.
Thursday, October 20, 2011
Climate Affects Behcet's Disease
I live in a northern state, where the days are pretty short for 3/4 of the year, the temperature is freezing, if we're lucky, for about six months, and precipation ranges from cold rain to snow and sleet, six months of the year. Sound pleasant? It is also next to a Great Lake, which keeps things damp and the wind slamming in off icy cold waters.
I should move.
Climate does play an important part in how manageable my Behcet's symptoms can be.
All late spring through early autumn, I enjoyed relatively good health. Not perfect, not all the time, but I was otherwise healthy and my Behcet's symptoms were minimal.
It's late fall. It's cold. I caught a cold. I therefore had another bout with mouth ulcers. As I've stated before, when I get sick, the Behcet's gears up for a good kick.
Something I had forgotten about was that I now am experiencing Reynaud's phenomenon as part of the change in climate. My fingers and hands suffer the most, with numbing, tingling, and generally annoying pain that is really more discomfort than pain. My feet also get cold, but I can keep them in wool socks, which helps a great deal. Another thing to put on my shopping list when I see my rheumatologist. I had forgotten about this particular annoyance until today, when it returned in the morning, for no particular reason that I can discern. It does go away after awhile, and it helps to hold a cup of something hot.
I also went to the eye doctor because my vision has taken a steep decline rather rapidly. He thinks I only need new glasses, for which I am very thankful. We'll know more when I have a visual field test, which my insurance company doesn't pay for unless a certain amount of time has passed. I hate insurance companies. In fact, today, I hate all corporations. Just having one of those days, I guess. This country is run by a bunch of fat corporate pigs who have destroyed all semblance of a good life for the working class. It bothers me more than a little that a bunch of executives hold sway over my health care. In a perfect world, these pigs will ultimately suffer painful, slow and agonizing demises, for which there will be no insurance coverage. No sympathy, either, at least not from me.
At any rate, I am going to climb on the band wagon of moving to Nevada, or Florida, or Belize. My husband likes these ideas, he just doesn't act on them quickly. He still is working. I've given up, having discovered that my health is more important than my finances. Hell, I'm ready to walk away from a mortgage and everything that goes with it, and settle for a simpler, more healthy lifestyle, meaning a whole lot less creature comforts, but a whole lot more satisfaction. Can't take it with me.
Meanwhile, I urge Behcet's sufferers to take extra care in cold, damp and inclement weather. Dress properly. Eating properly is more important in the colder months, when we become more sedentary than we are when its warm outside. A diet rich in vegetables and fruit (I don't really like fruit, so try to make up for it in vegetables and tomato juice) and plenty of whole grains really works wonders.
Halloween candy is my nemesis, and I wish I could be in a coma for the next two weeks and not see it everywhere. I thought I could satisfy my sweet tooth (which I broke in half on Monday - and can't see the dentist till my mouth ulcers are healed) with a trip to a very high end chocolate shoppe. (adding a "p" and an "e" to "shop" automatically gives them the right to charge exorbitant prices). I spent $30 on a bag of chocolate non-pareils and a box of smaller solid chocolates. Well, obviously, I'm not doing well on giving up certain creature comforts. At any rate, chocolate is better than those orange and green pumpkin sugar blobs, but I think maybe they contributed to my current symptoms, as I ate two handfuls of them.
I just ate a cucumber. Not satisfying. Not sweet. No all that great......but better for me than the chocolate, which I promptly shipped off to a friend in New York because I had buyer's remorse.
I am trying to be responsible with my diet. I just wish it wasn't Halloween. I wish I didn't have this disease, either, but since I do, I think I should be entrepreneurial. Does anyone want to join me in my kitchen where we will attempt to concoct the sweetest, best candy anyone ever tasted that actually heals Behcet's ulcers? We'll probably kill ourselves trying, but hey, there are worse ways to die.
I should move.
Climate does play an important part in how manageable my Behcet's symptoms can be.
All late spring through early autumn, I enjoyed relatively good health. Not perfect, not all the time, but I was otherwise healthy and my Behcet's symptoms were minimal.
It's late fall. It's cold. I caught a cold. I therefore had another bout with mouth ulcers. As I've stated before, when I get sick, the Behcet's gears up for a good kick.
Something I had forgotten about was that I now am experiencing Reynaud's phenomenon as part of the change in climate. My fingers and hands suffer the most, with numbing, tingling, and generally annoying pain that is really more discomfort than pain. My feet also get cold, but I can keep them in wool socks, which helps a great deal. Another thing to put on my shopping list when I see my rheumatologist. I had forgotten about this particular annoyance until today, when it returned in the morning, for no particular reason that I can discern. It does go away after awhile, and it helps to hold a cup of something hot.
I also went to the eye doctor because my vision has taken a steep decline rather rapidly. He thinks I only need new glasses, for which I am very thankful. We'll know more when I have a visual field test, which my insurance company doesn't pay for unless a certain amount of time has passed. I hate insurance companies. In fact, today, I hate all corporations. Just having one of those days, I guess. This country is run by a bunch of fat corporate pigs who have destroyed all semblance of a good life for the working class. It bothers me more than a little that a bunch of executives hold sway over my health care. In a perfect world, these pigs will ultimately suffer painful, slow and agonizing demises, for which there will be no insurance coverage. No sympathy, either, at least not from me.
At any rate, I am going to climb on the band wagon of moving to Nevada, or Florida, or Belize. My husband likes these ideas, he just doesn't act on them quickly. He still is working. I've given up, having discovered that my health is more important than my finances. Hell, I'm ready to walk away from a mortgage and everything that goes with it, and settle for a simpler, more healthy lifestyle, meaning a whole lot less creature comforts, but a whole lot more satisfaction. Can't take it with me.
Meanwhile, I urge Behcet's sufferers to take extra care in cold, damp and inclement weather. Dress properly. Eating properly is more important in the colder months, when we become more sedentary than we are when its warm outside. A diet rich in vegetables and fruit (I don't really like fruit, so try to make up for it in vegetables and tomato juice) and plenty of whole grains really works wonders.
Halloween candy is my nemesis, and I wish I could be in a coma for the next two weeks and not see it everywhere. I thought I could satisfy my sweet tooth (which I broke in half on Monday - and can't see the dentist till my mouth ulcers are healed) with a trip to a very high end chocolate shoppe. (adding a "p" and an "e" to "shop" automatically gives them the right to charge exorbitant prices). I spent $30 on a bag of chocolate non-pareils and a box of smaller solid chocolates. Well, obviously, I'm not doing well on giving up certain creature comforts. At any rate, chocolate is better than those orange and green pumpkin sugar blobs, but I think maybe they contributed to my current symptoms, as I ate two handfuls of them.
I just ate a cucumber. Not satisfying. Not sweet. No all that great......but better for me than the chocolate, which I promptly shipped off to a friend in New York because I had buyer's remorse.
I am trying to be responsible with my diet. I just wish it wasn't Halloween. I wish I didn't have this disease, either, but since I do, I think I should be entrepreneurial. Does anyone want to join me in my kitchen where we will attempt to concoct the sweetest, best candy anyone ever tasted that actually heals Behcet's ulcers? We'll probably kill ourselves trying, but hey, there are worse ways to die.
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