Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hi and Everyone, I took Yoga before I got sick, and am hoping to go back to the class. The class I took was called the Healing Oasis, and it focused on breathing and relaxation. I truly believe that the class helped. I hope to go back soon, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 Karol, I have extreme progressive PsA; only diagnosed in June 2008 and already need help with just walking. I take Humira injections every week and 50mg of Prednisone daily for almost 5 months now and I really have not been able to tell a difference yet. Have you or anyone out there encountered anyone with extreme progressive PsA? If so, please email me back. Thanks, Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 Karol... it's hard to get a handle on anything when coming off prednisone. I used to take it all the time and even 5mg. made me feel great...I'd say depending on where you live and the season of the year might be a great help. I live in northwest Indiana on the southern shores of Lake Michigan...we can have three different types of weather in a 24 hour period. Late October through mid December can be brutal as well as mid February through April...I find that as I get older my body is like a weather predicting machine. As the barometric pressure fluctuates so does the severity of discomfort...as a storm or weather system approaches I feel like crap but then once it is upon us...the icky feeling subsides and I feel more " normal " . I must also confess that as I am 48 now and interestingly enough went into a post menopausal state without going through menopause. I just started to feel all emotional...weepy...bitchy kinda like when I was pregnant long ago...had my rheumy run some blood work and it came up post menopausal. Needless to say it explained a lot about how I had been feeling...went to see a kinesiologist and he put me on an hebal supplement. It has made me feel much more in control and stopped all the emotional nonsense and the feelings of sadness and loss...being a woman is tricky business. Sorry to have gone off on such a sidebar here but I feel that as women we experience PA and most everything else a wee bit differently than men. So I'd just thought I'd throw that out there...hope you are taking calcium and vitamin D with that prednisone as it will do a number on your bones...stay strong and come on warmer weather!!! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 Strawberries have very high concentrations of pesticides. Jaco > From: spinedoc55 <spinedoc55@...> > Subject: [low dose naltrexone] flare up > low dose naltrexone > Date: Tuesday, March 3, 2009, 11:13 PM > My 14 year old has been on LDN (for ulcerative colitis) for > 5 months and was doing great then suddenly started to flare > with his usual symptoms: first severe abdominal pain and > then after a few days of being totally in severe pain, the D > starts. I used LDN to get him off pred and 6MP and it worked > for 5 months. Now we are back to pred again. I decided I > couldn't stand to see him in such pain anymore and pred > is the only med that seems to work so I started him on 30 > mg. It helps and he can start eating again and functioning. > My plan is to lower the pred until 10 mg and start him on > the LDN again and hope and pray he can get off the pred > again. He is also on azulfidine. He has been on SCD for 3 > years and it always seems to be when we try a new food that > he flares -- has been on a very strict SCD. But was doing so > well with the LDN that I thought we could try some > strawberries... or is it a combination of stresses and diet > and something like change of weather...So frustrating... > Judy > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 This is from Dr. McCandless - I'm sure no need to mention eliminate ALL refined sugar (if you love it, it isyour yeast screaming, "SUGAR, SUGAR, SUGAR!!!". Even too much fruit sugar is bad, especially strawberries, watermelon, pineapple, and ripe bananas, and no appleor grape products, as yeast love these fruits. Acceptable fruits are kiwi, pears, and berries in season except for strawberries. May there be a miracle in YOUR life today and may you have the EYES to see it.From My Heart to Yours Love, Hugs & Blessings, CrystalLDN_Users Group OwnerDiagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 3 years on LDN with Skip's Pharmacy.....No Relapses.....Crystal's MS,TM & LDN Websitehttp://www.freewebs.com/crystalangel6267/index.htm LDN Website http://ww.ldninfo.org/Crystal's LDN Support GroupLDN_Users/ LDN MySpace http://www.myspace.com/low dose naltrexone Cris - Case Health - Health Success Storieshttp://casehealth.com/case/about.html Crystal's LDN Gift Shophttp://www.cafepress.com/crystalldngifts Skip's Compounding Pharmacyhttp://www.skipspharmacy.com/ From: Jaco B <jaco.b7219@...>low dose naltrexone Sent: Tuesday, March 3, 2009 6:54:08 PMSubject: Re: [low dose naltrexone] flare up Strawberries have very high concentrations of pesticides.Jaco> From: spinedoc55 <spinedoc55@optonlin e.net>> Subject: [low dose naltrexone] flare up> low dose naltrexone> Date: Tuesday, March 3, 2009, 11:13 PM> My 14 year old has been on LDN (for ulcerative colitis) for> 5 months and was doing great then suddenly started to flare> with his usual symptoms: first severe abdominal pain and> then after a few days of being totally in severe pain, the D> starts. I used LDN to get him off pred and 6MP and it worked> for 5 months. Now we are back to pred again. I decided I> couldn't stand to see him in such pain anymore and pred> is the only med that seems to work so I started him on 30> mg. It helps and he can start eating again and functioning.> My plan is to lower the pred until 10 mg and start him on> the LDN again and hope and pray he can get off the pred> again. He is also on azulfidine. He has been on SCD for 3> years and it always seems to be when we try a new food that> he flares -- has been on a very strict SCD. But was doing so> well with the LDN that I thought we could try some> strawberries. .. or is it a combination of stresses and diet> and something like change of weather...So frustrating. ..> Judy> > > > ------------ --------- --------- ------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 I'm always in some kind of pain but when I'm having a flare it gets intense and if mine doesn't resolve it self in 48 hours then I know I need something extra to get it under control and I take prednisone. Celeste Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 I consider a flare any time my pain or swelling or stiffness increases. It can happen for a number of reasons - an infection, an allergy, coming off a med, delay in taking a med, bad weather, stress, doing too much, not resting enough, etc. So yes, tapering off prednisone can cause a flare, hopefully a mild one. Let your doctor know if the pain level is unacceptable - he may slow your taper. " S. Zorzi " <szorzi_1999@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 > > My 14 year old has been on LDN (for ulcerative colitis) for 5 months and was doing great then suddenly started to flare with his usual symptoms: first severe abdominal pain and then after a few days of being totally in severe pain, the D starts. I used LDN to get him off pred and 6MP and it worked for 5 months. Now we are back to pred again. I decided I couldn't stand to see him in such pain anymore and pred is the only med that seems to work so I started him on 30 mg. It helps and he can start eating again and functioning. My plan is to lower the pred until 10 mg and start him on the LDN again and hope and pray he can get off the pred again. He is also on azulfidine. He has been on SCD for 3 years and it always seems to be when we try a new food that he flares -- has been on a very strict SCD. But was doing so well with the LDN that I thought we could try some strawberries... or is it a combination of stresses and diet and something like change of weather...So frustrating... Judy >============ Have you had his yeast load checked? Steroids cause candida yeast overgrowth and sugar from strawberries can be bad for an anti-candida program. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Karol, When I start to have a flare up the first thing I notice is extreme fatigue. Usually sometime during that day my joints start to swell and hurt more. My skin starts acting up the next day usually. Thats just my personal experience. I see flare ups as my body telling me that somewhere I am doing too much and it is stressed in some way. You should talk with your physician about any possible connection between the sacroiliitis and PA. It can be difficult for us to recognize that every pain we have may not be PA, and should be checked by the physician. Learning to cope without steroids is a stressful thing for the body. I've been taking Humira for 6 months now and it has really helped me. However I am still learning to balance my activity. On those days when I'm feeling 'normal' i tend to do too much and wind up useless for 2 or 3 days. So, pace yourself. Blessings, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Diseases like Crohns and UC can go into remission for periods of time. That makes it hard to know if something is working or your just in remission at the time. Jeanette Bren wrote: > > >> My 14 year old has been on LDN (for ulcerative colitis) for 5 months and was doing great then suddenly started to flare with his usual symptoms: first severe abdominal pain and then after a few days of being totally in severe pain, the D starts. I used LDN to get him off pred and 6MP and it worked for 5 months. Now we are back to pred again. I decided I couldn't stand to see him in such pain anymore and pred is the only med that seems to work so I started him on 30 mg. It helps and he can start eating again and functioning. My plan is to lower the pred until 10 mg and start him on the LDN again and hope and pray he can get off the pred again. He is also on azulfidine. He has been on SCD for 3 years and it always seems to be when we try a new food that he flares -- has been on a very strict SCD. But was doing so well with the LDN that I thought we could try some strawberries... or is it a combination of stresses and diet and something like change of weather...So frustrating... Judy >> ============ >> > > Have you had his yeast load checked? Steroids cause candida yeast overgrowth and sugar from strawberries can be bad for an anti-candida program. > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Hi Judy Sad that your son has a flare up - having Crohn's myself and using LDN as well, I earlier had to to take Prenisone during flare-up's - same dose, 30mg's for few days, then tapering off slowly - my personal, experienced advice would be: continue LDN anyway - there is no direct conflict or risk of adverse reactions, just that LDN MAY loose some efficiency - but not ALL of it - so please continue LDN throughout the Pred-cure - please also considerate if your son has any Candida-issues - I have (or had) - the last 8 months I've been fighting this bugger seriously - not 100% clear yet, but MUCH BETTER - and NO NEED for Pred any longer )) Best Wishes " The Norwegian " > > My 14 year old has been on LDN (for ulcerative colitis) for 5 months and was doing great then suddenly started to flare with his usual symptoms: first severe abdominal pain and then after a few days of being totally in severe pain, the D starts. I used LDN to get him off pred and 6MP and it worked for 5 months. Now we are back to pred again. I decided I couldn't stand to see him in such pain anymore and pred is the only med that seems to work so I started him on 30 mg. It helps and he can start eating again and functioning. My plan is to lower the pred until 10 mg and start him on the LDN again and hope and pray he can get off the pred again. He is also on azulfidine. He has been on SCD for 3 years and it always seems to be when we try a new food that he flares -- has been on a very strict SCD. But was doing so well with the LDN that I thought we could try some strawberries... or is it a combination of stresses and diet and something like change of weather...So frustrating... Judy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 If you have Crohn’s (I can’t speak for Colitis), it’s not unusual to “flare” when you try a new food, however benign you may think it might be. Having had Crohn’s for nearly 30 years I’ve found that my gut (and I suspect a lot of people’s) likes what it’s used to, even if what it’s used to is bad for it. If one is three or four meds they may not necessarily be working in concert. That alone would cause my body to go nuts (but I’m quite drug sensitive in general). Just curious: why would a person not stay on LDN all the time? From everything I’ve read it needs to be taken constantly and pretty much indefinitely. It’s not likely it’s the LDN that’s causing the flare. It’s whatever new food is introduced. Which one’s body will either adjust to over some days or a few weeks, or not. Strawberries can be killers (not literally, I would hope, but in terms of pain). They’re full of tiny seeds that can wreak havoc in/on a tender gut. They were one of the first things I tried, along with yogurt, after my first Crohn’s surgery and they made my intestines feel like they were ripping apart and turning inside out. n, also on the SCD From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Jeanette Sent: Wednesday, March 04, 2009 11:04 AM low dose naltrexone Subject: Re: [low dose naltrexone] Re: flare up Diseases like Crohns and UC can go into remission for periods of time. That makes it hard to know if something is working or your just in remission at the time. Jeanette Bren wrote: > > >> My 14 year old has been on LDN (for ulcerative colitis) for 5 months and was doing great then suddenly started to flare with his usual symptoms: first severe abdominal pain and then after a few days of being totally in severe pain, the D starts. I used LDN to get him off pred and 6MP and it worked for 5 months. Now we are back to pred again. I decided I couldn't stand to see him in such pain anymore and pred is the only med that seems to work so I started him on 30 mg. It helps and he can start eating again and functioning. My plan is to lower the pred until 10 mg and start him on the LDN again and hope and pray he can get off the pred again. He is also on azulfidine. He has been on SCD for 3 years and it always seems to be when we try a new food that he flares -- has been on a very strict SCD. But was doing so well with the LDN that I thought we could try some strawberries... or is it a combination of stresses and diet and something like change of weather...So frustrating... Judy >> ============ >> > > Have you had his yeast load checked? Steroids cause candida yeast overgrowth and sugar from strawberries can be bad for an anti-candida program. > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Kathy, I was so glad to see you talk about menopause. I don't see it discussed that much and it is affected by PA just as much as any other system of our bodies. I had a very early menopause and I feel it was because the PA was already coming on and stressed my body. Sorry you men out there, but we need to talk more about this. ha! Deanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 Karol, Sorry for replying so late. I have extreme PA. According to my rheumy, Dr. Partrick Knibbe, the second worst case that he has every personally known of. The bad news is that there is a lot of trail and error finding out what works. There is not one set solution that works for everyone. Also be aware, that the medical community can only do so much for individuals such as us. You will have to be very pro-active in finding solutions within your own lifestyle that affect the condition. I do not care what any doctor and anyone else says but lifestyle, diet, sleep patterns, career, personal relationships have a huge impact on what will happen to you in the future. Stress is one of biggest factors in setting off flares. Then that leads to pain, which leads to more flares. Dr. Knibbe taught me this: He painted a picture in my mind, that the disease works in a circular fashion. the disease itself, then pain and stress (or call it the emotional aspect of it. however outside stress factors just as equally can contribute to setting off flares) So one off the greatest lessons he taught me was to stop the cycle). Remember anyone of three can trigger the cycle. Pain management is so important. I have learn to manage the pain with the pain medication that works for me. Not all pain medications are effective for me. 1) I NEVER let the pain get out of control. 2) Stress: over the years I have just found out that if something causes me stress I have to take action. Let's say a friend or someone I am dealing with in business. I have learned to be very polite and tell them that their behavior causes me a lot of stress which affects my health. If the person listens and understand that I have very serious health issue and understands great. But if not then I let them know that our dealings are terminated. PERIOD! Don't contact me again, ever. This was very hard at first but I am just blunt about now. Going on with this issue, I found that exercise is the # 1 thing that I can to control the stress levels. Additionally this also helps tremendously with pain as well. Something, yoga, tai chi, swimming, whatever works for YOU, is the right exercise. One cannot make the excuse that, well I am hurting from a flare so I will not exercise. That is the time to really do it. Easier said than done for sure. However you will have to make that call yourself. Do you want to have less pain and keep the flares under control or not? Your decision. No doctor can do this for you. No amount of medication can make up for this. In fact when I am exercising regularly I require much less medication. That's a fact. More pills or more exercise, which do you prefer? 3) Flares; Here also Dr. Knibbe told me the cold hard reality if I am having a flare, say a really bad one. The best prescription he ever wrote for me was one that required NO medication. I just have to take a time out from life. Your body is attacking itself. I will cancel activities, limit my work as much as possible, even time take off from work if I can, and just chill. Get plenty of sleep, take naps, exercise. I could go on but I the bottom line is that I just take a time out from life and let the flare run its course. This part for me is all about smart disease management. Once again a doctor cannot do this for you. You just have to find out what works for you. Make some form of a journal. I use a calender and track my flares. The reason I use the calender is that I can also follow what else is going on in my life. This helps me look back at my activities and see if there is pattern that is setting off my flares. I have more information that might be helpful to you but I gotta go right now. Hopefully this was helpful and good luck. Take care S. Carrington Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 Hi All, I just wanted to express some thoughts I had after reading e-mail. I understand and agree with some ideas but not all. First, being a worst case. I'm not sure what that means. When I hear those words I picture someone in a wheelchair with very crippled and gnarled hands, feet, spine, etc. If this is the case then I wish there was some miracle drug. But on the other hand if the person is still working I wonder where that leaves me because, I've been off work for 2yrs now and I am not expected to return. Next, I too find some exercise very helpful but when my hands, feet or back start aching I was told to stop what I'm doing and rest. The more I try to do things or exercise the more pain I have--whats that all about???? I do agree to ride out the flares and take meds that satisfy regular pain. Lastly, I try to change me and not so much my surroundings when it comes to stress. Some stress cannot be avoided so I prefer to learn better coping skills and change my attitude because chances of changing other people is slim to none. I would like to hear others ideas on the above mentioned. Maybe we should be looking forward to the great weather thats just around the corner and thinking of the nice warm days we can at least sit outside for a change. Also, has anyone tried salazopyrin (sulfasalazine)? These drugs scare me to death but I'm having more problems so I have to try something. Please advise. Thank you and all my best. SD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 , what an excellent post! The only thing I would adjust slightly is about the exercise. You are right that being in pain from a flare is no excuse for not exercising, however you must choose the exercise wisely. Anything weight-bearing on the feet can cause the feet to flare terribly. Both my rheumy and my physical therapist have advised me that I can walk briskly as long as it does not cause a flare but no jogging or running. This was difficult to accept as I was training for a half-marathon when I was diagnosed. Also for me, no more bench dips as it puts too much strain on my badly affected wrists. It's a good idea to check with your own physician for advice as to what type of exercise is appropriate for your particular situation. Some people have existing joint damage which may preclude some forms of exercise. " S. Zorzi " <szorzi_1999@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 May I ask what exercises you do do with your foot. I have to get in some shape but cant figure out how to get the upper half of my body and my upper leg area in shape. Jolene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Clarification; There are going to be links below here for all the suffer when walking. I really hope that they well benefit others as much as they benefit me. Go Z-Coil! And S. Zorzi you are right on the money about your comments concerning exercising. Actually I think that the group should start trying to focus on this issue more and support each other. Like I said it is easier said then done. Of course when there is a bad flare who in the heck whats to go to the pool or gym?! Much easier for me to have another pot of coffee and 2 more lortabs:) But hey more exercise or less pills. It is an individual choice. Actually I was in a wheel chair for years and would still be but for these shoes that I found. Here is the website for all http://www.zcoil.com/ I have no right ankle. That's correct and the foot is fused at a 90 degree angle with no movement. The removal the right ankle makes my right leg a little more then 1 " shorter then the left. Since it is fused it is impossible to walk normal. Imagine taking a piece of string to your toes and pulling back and walking on your heel. I had to go through 9 months of PT for gait training. However I will say that no doctor provided me a solution I had to be pro-active and go out and find a solution to the problem. I used MBT shoes at first: Here is their website: http://www.swissmasai.it/. However whether due to PA or walking on my heel now the bones on my heel have collapsed, so the foot is now bent to the right. I do not know how much " gnarled " a joint could get then that. It is gross to look it. Without Remicade there is no way I could go on living. Remicade is a miracle drug for me. Why it works so well I do not know. However, for me I have had a bit luck in that the University of Utah happens to be one of the leading research centers on PA. I have had 13 major surgeries and will be requiring more. If not for the z-coil shoes, there is no way I would be able to function, without a wheelchair. However at home I do use a wheelchair and I am sitting in it right now. PA is in my family, my younger cousin died at 38 years old due to complications from it. Individuals with serve PA should be aware this can kill you. That I am alive is a miracle. Having said that my rheumy Dr. Knibbe is the one who taught me so many of the points that I passing along. At first I did not what to hear it. Just give me a pill. We would actually butts heads, because it took him about 4 years to get me to realize that, hey I either take control of this issue or over a 4 or 5 year period I will die a very painful and miserable death. He was just blunt about. I thought he was being rude. I have never as of yet come across anyone out here in this area that anyone in the medical community knows of that has a more serve case then I do. But hey what does it matter? Just to let the gentlemen know express some doubts as the severity of my case, I also have uveitis in my right eye, which has required three surgeries and I cannot remember how shots of steroids I have had in that eye. What a freaking feeling the first few times that I had some one take a needle to my eye. So if I am not having any flares in the rest of my body and let's say that I did not have the ankle issue, just dealing with uveitis is a pain because the flares in the eye and the rest of body function separately. I have flares in the my right eye so bad that I will have to take massive doses of predisone to just calm it down. Massive doses for me would be 90 mg for up 7 days in row. What a drag, everything is could be somewhat stable and then here comes a extreme flare in the eye. Imagine trying to drive to the store. The pain is incredible. Then I have to take diazepam so prevent becoming a mental basket case. Sounds fun huh? So how does one function with all this insanity? Here is how I do it. 1) lifestyle management 2) disease management. So just to clarify, if someone can find a doc to do those two things for you, good luck. Personally I have now come to the this. The doctors work for me and are just one part of my team for disease management. Other suggestions that I have that work for me are message, chiropractic, de-toxic and I juice. By juicing I am good old veggies. I cannot believe what a difference juicing has on me. 3) building healthier relationships with others that understand I have a very serious disease. This part blows my mind because from my experience people either get it or don't. Really it's black or white. There have been people , even family that treat me like some type freak and put a guilt trip on me. Over the last ten years I have to just realize that I eliminate those people from me life. Goes back to the stress trigger. Everyone else use and do whatever makes you feel comfortable. Me, I guess my Chicago personality just comes out and I had tell my younger sister go away and don't call me contact me anymore. Her life is so full of B.S. of made up drama and she will suck anyone in her orbit into it. I don't have time for it and gives me so much anxiety. I have asked her for years to stop it. I have a disease to manage and life to live and a daughter raise. I have a ton more information for everyone that some might find helpful and others not. Take care and I have will have try to read the posts but I am very busy right now. If there is someone needs some specific information. Then I do know where to get free remicade for example if one does not have health insurance. Good luck everyone and have a good weekend. Bye S. Carrington Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Hello everyone. Well just woke up . and I told my husband all of my joints are throbbing . I feel like im going to have a flare up . I pray I dont . The last one I had was March of 08 . But I feel the symptoms of one coming on . Do the flares get worse even on biologic meds ? And how often do they come ? I am just very afraid because I remember how I was the last time . And it wasnt pleasant . I dont sleep well as it is with the RA . But with a flare forget sleeping at all .. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.