Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi Jo, My name is Dottie, I rarely post anymore. I have had Stills for 16 years and started of with our Stills support group in it's infancy. There were only a few of us back then. Tom was our fearless leader. After 13 years of being totally devested by still's. I have been in compete remission for 4 years now, I am loving life again. I am training for a marathon, and hope that I can eventually do it to raise awareness about stills and money for the foundation. I am working on my Bachelors degree in the medical field to do advocacy work for people like us. I just wanted to introduce myself before I answered your question about Pernicious Anemia. I was diagnosed with Pernicious Anemia right before I started having stills symptoms. I was tired all the time, My coordination was off, my tongue tingled and felt funny. My biggest symptom was the fatigue. I could barely lift one foot in front of the other. A simple blood test will tell the doctors if you have it. Your red blood cells become smaller and die off earlier. I was given a B-12 shot and I felt great, then about a week later I started to feel like crap again. I started reading about Pernicious Anemia. In the beginning of treatment you need, a shot every day for a week, then a shot every week for a month and then a shot every three weeks to a month for life. It takes approximately five years to deplete your body of B-12. If you are a vegetarian (you can only get B-12 through meat sources) or you have an absorption problem that is blocking your body from absorbing B-12. If you feel you have a problem with B-12 your doc can run a simple blood test for both B-12 and folic acid, sometimes they go hand in hand. Good luck! As always my thoughts and prayers are with every one of us with stills. Dottie ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi Jo I am afraid that I can't help with your question on anemia but hope you will not mind if I suggest that it may be a good idea to see your doctor maybe for some help with your depression as feeling so depressed makes it hard to cope with the rest of the problems of stills etc. At least that has been my experience as I suffer from deep depressions myself so can imagine how you must be feeling. I am glad the people at work are being helpful and supportive. Take a day at a time and I know that things will improve. All the best Joan U.K. _____ From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of jookeefe_1960 Sent: 28 June 2007 05:34 To: Stillsdisease Subject: Pernicious Anemia Hi, Guys. I am doing very poorly so haven't been on the computer much. I searched and see you had a short discussion on anemia back in May. I wondered if anyone has been diagnosed with pernicious anemia, in particular, and if so, were you treated with B-12 injections? Did they help? My alkaline phosphatus (or something like that) is low, my HCT is low and my RBC is low. I found pernicious anemia by looking up the causes of the low alkaline phosphasomething test and I have all of the symptoms except weight loss. In that regard, though I have no appetite and am barely eating, I think I may have gained weight rather than losing. Otherwise, I am exhausted 24/7, my heart is racing, I'm dizzy, I have headaches (or head pains), etc. etc. etc. I hope everyone else is feeling well. Thank you for any information you can pass on. I was finally able to schedule an appointment with my rheumatologist for July 13th (better than the end of August, which is what they originally said). My new boss and co-workers are being wonderful to me during this, so that helps a lot, but I am really fighting depression along with this. I am past the point of even worrying what will happen if I am unable to keep working and now just am very depressed thinking of living like this for much longer. Thank you all for your kindness and support. I really appreciate it. Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi Jo I am afraid that I can't help with your question on anemia but hope you will not mind if I suggest that it may be a good idea to see your doctor maybe for some help with your depression as feeling so depressed makes it hard to cope with the rest of the problems of stills etc. At least that has been my experience as I suffer from deep depressions myself so can imagine how you must be feeling. I am glad the people at work are being helpful and supportive. Take a day at a time and I know that things will improve. All the best Joan U.K. _____ From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of jookeefe_1960 Sent: 28 June 2007 05:34 To: Stillsdisease Subject: Pernicious Anemia Hi, Guys. I am doing very poorly so haven't been on the computer much. I searched and see you had a short discussion on anemia back in May. I wondered if anyone has been diagnosed with pernicious anemia, in particular, and if so, were you treated with B-12 injections? Did they help? My alkaline phosphatus (or something like that) is low, my HCT is low and my RBC is low. I found pernicious anemia by looking up the causes of the low alkaline phosphasomething test and I have all of the symptoms except weight loss. In that regard, though I have no appetite and am barely eating, I think I may have gained weight rather than losing. Otherwise, I am exhausted 24/7, my heart is racing, I'm dizzy, I have headaches (or head pains), etc. etc. etc. I hope everyone else is feeling well. Thank you for any information you can pass on. I was finally able to schedule an appointment with my rheumatologist for July 13th (better than the end of August, which is what they originally said). My new boss and co-workers are being wonderful to me during this, so that helps a lot, but I am really fighting depression along with this. I am past the point of even worrying what will happen if I am unable to keep working and now just am very depressed thinking of living like this for much longer. Thank you all for your kindness and support. I really appreciate it. Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi Jo I am afraid that I can't help with your question on anemia but hope you will not mind if I suggest that it may be a good idea to see your doctor maybe for some help with your depression as feeling so depressed makes it hard to cope with the rest of the problems of stills etc. At least that has been my experience as I suffer from deep depressions myself so can imagine how you must be feeling. I am glad the people at work are being helpful and supportive. Take a day at a time and I know that things will improve. All the best Joan U.K. _____ From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of jookeefe_1960 Sent: 28 June 2007 05:34 To: Stillsdisease Subject: Pernicious Anemia Hi, Guys. I am doing very poorly so haven't been on the computer much. I searched and see you had a short discussion on anemia back in May. I wondered if anyone has been diagnosed with pernicious anemia, in particular, and if so, were you treated with B-12 injections? Did they help? My alkaline phosphatus (or something like that) is low, my HCT is low and my RBC is low. I found pernicious anemia by looking up the causes of the low alkaline phosphasomething test and I have all of the symptoms except weight loss. In that regard, though I have no appetite and am barely eating, I think I may have gained weight rather than losing. Otherwise, I am exhausted 24/7, my heart is racing, I'm dizzy, I have headaches (or head pains), etc. etc. etc. I hope everyone else is feeling well. Thank you for any information you can pass on. I was finally able to schedule an appointment with my rheumatologist for July 13th (better than the end of August, which is what they originally said). My new boss and co-workers are being wonderful to me during this, so that helps a lot, but I am really fighting depression along with this. I am past the point of even worrying what will happen if I am unable to keep working and now just am very depressed thinking of living like this for much longer. Thank you all for your kindness and support. I really appreciate it. Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 I have been trying desperately to get in to either of my doctors but the GP wants me to see the Rheumatologist and the soonest I can get in to the rheumatologist is July 13th. However, while I worked in mental health for 8 years and fully believe in medication for depression, I believe my depression in this case is a symptom of my illness and not a reaction to my illness, if that makes sense. So I'm not convinced an antidepressant would help without getting some relief from the rest of it. Thanks, Joan. hope you will > not mind if I suggest that it may be a good idea to see your doctor maybe > for some help with your depression as feeling so depressed makes it hard to > cope with the rest of the problems of stills etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Good morning Joan: I've been reading all this stuff (of course) and I do understand what you're saying. I will tell you the power to change the depression is within you. First of all I will tell you that I've been where you are and battled it for many years. When I had finally had enough, meds didn't work, therapy didn't work (I didn't work it) and my husband had had enough I decided to take matters into my own hands and simplify things. I started with my surroundings, uncluttered the closets, got rid of knick knacks that didn't hold importance to me or anyone else, that kind of thing. That took a couple of days. Then I went to work on uncluttering me. Too many outside influences, too much chatter and too many bad feelings. Simplify. I can't control chatter of others, influences are all around and can't always be avoided so I have feelings left to deal with. Meditation with deep breathing was helpful but the imagery was something I needed to create. Something along the lines of dark,heavy clouds came to mind immediately so I had to sweep them away to get to what I needed. Thus the inside sun was born. It burned off the clouds, warmed my heart and soul and brought a smile to my face. From there positive thinking or rather positive living was actually easier than I thought. I won't lie, it took awhile to remember to practice it but it's now second nature and oddly contagious. Out of that was born what I always say at the end of each email, message and phone conversation: Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Thank you, Dottie! It is very comforting to know that you actually recovered enough from this to run! My RBC and HCT have been low for at least 2 years. I felt like this before about 6 years ago, at which time I was started on a lot of medications, including methotrexate and folic acid 1 mg. I wonder if the folic acid maybe made a difference for awhile and now it's just not enough? I don't know. I am keeping my fingers crossed (or I would if I could cross them anyway) that this is it as it would be a much easier thing to deal with than to have to go to the next chemotherapy step. Thanks, again! Jo > > Hi Jo, > My name is Dottie, I rarely post anymore. I have had Stills for 16 years and > started of with our Stills support group in it's infancy. There were only a > few of us back then. Tom was our fearless leader. After 13 years of being > totally devested by still's. I have been in compete remission for 4 years now, I > am loving life again. I am training for a marathon, and hope that I can > eventually do it to raise awareness about stills and money for the foundation. I > am working on my Bachelors degree in the medical field to do advocacy work > for people like us. > I just wanted to introduce myself before I answered your question about > Pernicious Anemia. I was diagnosed with Pernicious Anemia right before I started > having stills symptoms. I was tired all the time, My coordination was off, my > tongue tingled and felt funny. My biggest symptom was the fatigue. > I could barely lift one foot in front of the other. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Hi . My husband suffers from the same thing. He was going to the doctor weekly for injections, and even with insurance, that got to be costly. He now gives himself his own b12 injections. The cost is extremely low this way. Good luck, and God bless. **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Hi ! Unfortunately folks diagnosed with PA have a lack of intrinsic factor found in the stomach which is necessary to break down and absorb B12 from foods and pills. B12 injections will be your only source for B12 with the diagnosis of PA. I hope you feel better soon and I know of people that have improved 100 % once they got on their regimen of B12 injections. Best of luck and let me know if you need anything! Liz > > Does anyone here have Pernicious anemia? I have all the symptoms and am > trying to fix with Black Strap molasses and B-12 pills, but I think I have to go > to the drs which I am trying to avoid because I have no insurance. Please if > anyone has this let me know. > Here is a website about this vitamin B-12 deficiency. > B > > _Anaemia due to vitamin B12 deficiency (pernicious anaemia)_ > (http://www.netdoctor.co.uk/diseases/facts/anaemiab12.htm) > > > > **************Start the year off right. Easy ways to stay in shape. > http://body.aol.com/fitness/winter-exercise? NCID=aolcmp00300000002489 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 I dont know if this will help, but I was diagnosed with Iron deficiency anemia until they did a folic acid and B12 test, and it turned out I had pernicious anemia, my Dr recommended B12 and folic acid sublingually and it worked and my levels are fine now. Blessings, Conrad - In , " EPR " <epr@...> wrote: > > Hi ! > Unfortunately folks diagnosed with PA have a lack of intrinsic factor > found in the stomach which is necessary to break down and absorb B12 > from foods and pills. B12 injections will be your only source for B12 > with the diagnosis of PA. > I hope you feel better soon and I know of people that have improved > 100 % once they got on their regimen of B12 injections. > Best of luck and let me know if you need anything! > Liz > > > > > > > > > > > > Does anyone here have Pernicious anemia? I have all the symptoms > and am > > trying to fix with Black Strap molasses and B-12 pills, but I think > I have to go > > to the drs which I am trying to avoid because I have no insurance. > Please if > > anyone has this let me know. > > Here is a website about this vitamin B-12 deficiency. > > B > > > > _Anaemia due to vitamin B12 deficiency (pernicious anaemia)_ > > (http://www.netdoctor.co.uk/diseases/facts/anaemiab12.htm) > > > > > > > > **************Start the year off right. Easy ways to stay in > shape. > > http://body.aol.com/fitness/winter-exercise? > NCID=aolcmp00300000002489 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 I suffered from that about 1 1/2 years out of surgery. I went to see my doc and he had me taking Fergon, an OTC iron pill which did not help. He then prescribed Chromagen tablets. I was supposed to take 3 per day but was only able to get in 2 per day and my iron level came back into range within 3 months. I feel soooo much better now. I still take 1-2 tabs daily. I believe the script is a combo of iron and b-12 (which helps with absorption). I was also b-12 deficient and even though my levels are back in range I still do b-12 shots, 2 cc, every 2 weeks. Ria In a message dated 1/30/2008 5:30:42 P.M. Central Standard Time, TreeBee123@... writes: Does anyone here have Pernicious anemia? I have all the symptoms and am trying to fix with Black Strap molasses and B-12 pills, but I think I have to go to the drs which I am trying to avoid because I have no insurance. Please if anyone has this let me know. Here is a website about this vitamin B-12 deficiency. B _Anaemia due to vitamin B12 deficiency (pernicious anaemia)_ (_http://www.netdoctohttp://www.netdohttp://www.netdohttp:_ (http://www.netdoctor.co.uk/diseases/facts/anaemiab12.htm) ) ************************<WBR>**Start the year off right. Easy ways to st _http://body.http://body.<WBRhttp://body.<WBRhttp://body.<WBRhttp://bo_ (http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489) [Non-text portions of this message have been removed] **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 hi there, B12 def. is nothing to play with. Go to your dr. and start the injections. You probably will be able to give them to yourself on a monthly basis. If left, this will cause such fatigue, tingling of hands and feet and irritability. Many get this without the MGB (usually vegetarians) so get to your dr. Pills cannot be absorbed without the intrinsic factor which is low and when you go to the dr. get a hemoglobin and ferriten done just to rule out anemia as well. (My Mom is a nurse and read the email. My surgery date is May 08 TreeBee123@... wrote: Does anyone here have Pernicious anemia? I have all the symptoms and am trying to fix with Black Strap molasses and B-12 pills, but I think I have to go to the drs which I am trying to avoid because I have no insurance. Please if anyone has this let me know. Here is a website about this vitamin B-12 deficiency. B _Anaemia due to vitamin B12 deficiency (pernicious anaemia)_ (http://www.netdoctor.co.uk/diseases/facts/anaemiab12.htm) **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 I have been looking for info about LDN and pernicious anemia. Would someone point me to studies, or tell me their experience with LDN and pernicious anemia? I know that PA is a risk factor for stomach cancer, and I assume that at least LDN would reduce that risk? But can it also alter the auto-immune reaction to intrinsic factor? Thanks, Quote Link to comment Share on other sites More sharing options...
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