Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Hello All: This is my third or fourth post on the site...thanks to all of those who have responded to my earlier messages. I was diagnosed with ReA in Jan 08 after developing joint pain in ankles, knees, hips, elbows, wrists and shoulders. I also developed pitting in my nails, pustules on the soles of my feet. So far I have never had an inflammed or swollen joint...my joints just crack or pop. Now that I have learned more about ReA, I realise that I had mild, isolated symptoms back in Oct/Nov/Dec 07. I am thinking that a bad case of food poisoning from some Chicken Mhakni in the summer probably brought all this on. I wonder if any of you guys had very mild symptoms at first which subsequently developed into something more. At this point my main complaint is inflammation under my arms and around my shoulders...i can usually tolerate the discomfort without any pain meds. When the inflammation spread then I get fatigued. So far I have only had 10 to 12 " bad days " where I had to take Alleve all day and had to rest from the fatigue. Has anyone else had a slow progression of symptoms like this? I have had people tell me to attack this disease early, but I am not quite sure what I should be doing at this point. Also, seems like the last few times I took some NSAIDS my stomach got bloated, and gassy and i felt like i had a rock in it....i took some over the counter Prilosec for two days, but the bloating and upset stomach feeling continued. Anyone have any experience like this? Should I have taken the prilosec longer? I am seeing my rheumatologist on wednesday, and would like to get some information before then. The last time i was there he told me to take the NSAIDs as needed, but if the consensus is I should be taking stronger meds to try to keep the ReA in check I will explore that with him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 , it appears no one's ReA runs a perfectly typical course. You may be in the worst of yours right now, or it my continue to get worse before it gets better. I have had mine for about a year and a half now, and the worse was about 2 to 4 months after I got an infection (Oct 06), and about 1 to 3 months after the symptoms really started going (Dec 06). I'm still not well, but I'm gradually better. Last summer, which was about 5 to 9 months after everything may have begun, was a bad spell. If you are like me, the bad spells will get very gradually less bad and the good spells very gradually better and longer lasting. I tried Ibuprofen at first and found it caused me to feel like my heart was pounding, so I switched to naproxen. Neither helped a great deal, but may have helped some. Tramadol helps. Just remember, during the really bad days, that it will get better. Good luck. Spencer --------------------------------- You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Thanks for your good wishes Spencer...I am maintaining a good attitude overall...this disease is amazing in that every day its something new! The worst thing is that you never know how you are going to feel from day to day. But I am coping! > > > > , it appears no one's ReA runs a perfectly typical course. You may be in the worst of yours right now, or it my continue to get worse before it gets better. I have had mine for about a year and a half now, and the worse was about 2 to 4 months after I got an infection (Oct 06), and about 1 to 3 months after the symptoms really started going (Dec 06). I'm still not well, but I'm gradually better. Last summer, which was about 5 to 9 months after everything may have begun, was a bad spell. If you are like me, the bad spells will get very gradually less bad and the good spells very gradually better and longer lasting. > I tried Ibuprofen at first and found it caused me to feel like my heart was pounding, so I switched to naproxen. Neither helped a great deal, but may have helped some. Tramadol helps. > Just remember, during the really bad days, that it will get better. > Good luck. > Spencer > > > --------------------------------- > You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hello! Yes, mine started as a very slow progression. I believe I had an outbreak for the first time around 15 years ago which was isolated to my eyes. It went on for about 9 months and went away. Now it is back after the big peanut butter food poisoning last year. Mine started in my eyes during the summer and then went into the muscle in my forearm and the achilles tendon, both on the right side only. Eventually it moved into my elbow and all up and down my right side tendons. The only joint it settled in my was elbow. The muscle/arthritic symptoms gradually started last August/September and have gone on since. December/January were my worst months, to the point where I was considering getting crutches so I could walk. Now it's all over my body, most recently affecting both knees. I am a 42 year old, former runner, mother of 3 small children who has a hard time walking up and down 6 stairs. It sucks. Right now I'm only on OTC meds because I can't find a doctor to adequately treat me. I'm working on it though and hope to get some help here in the next few weeks. (THANKS TOM!) I need some " real " medication from a doctor who is qualified to treat this illness. I'm hoping it will go into some sort of " remission " and go away. I'm not giving up hope yet!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2011 Report Share Posted July 31, 2011 How are his other counts, red, platelets? Does he have swollen lymph nodes? Where? No " B " symptoms? No night sweats, fatigue, ? Try to resist aggressive docs who want to begin treatment right away, unless they have a good reason.... john In a message dated 7/24/2011 8:16:09 P.M. Eastern Daylight Time, bat@... writes: My husband has just been diagnosed with CLL last Wednesday, July 20. His white blood count is 16,000 and he is strong and in great condition. We go to a hematologist on Aug 11. Can anyone tell me what questions we should be asking? Thank you so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 Hi Ann, I am a newly diagnosed CLL patient and found these sites very helpful: http://updates.clltopics.org/ http://www.cllforum.com I wish I had gone to these sites and this Group / before my first appointment with the hematologist/oncologist. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 I find this page from the ACOR list the most helpful, because it's straight from two oncologists: http://cll.acor.org/Professors%27%20posts.htm Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 Ann - The booklet on CLL put out by the Lymphoma Research Foundation is very good. Go to http://Lymphoma.org/booklets With both the booklet and CLL Topics, which someone else recommended and is a great site, start with the information for beginners. Don't get bogged down in all the more advanced information. You won't ever need some of it. Also don't try searching for everything about CLL on line. Much of the information is dated or incorrect. This group (the group) and the other resources people here have recommended will give you accurate and up to date information. Another good site is http://CLLinfogroup.org which is the sponsoring group for this discussion group. There are two very good podcasts that you can listen to by two CLL specialists which you might want to check out. Start with the one by Dr. Keating, as Dr. Furman's was second and he sort of picked up from where Dr. Keating left off. Do take a recording device to your appointments. I was amazed at how much I missed at my early appointments, especially, because everything was so new to me and I was admittedly quite frightened. I have to echo 's comment about avoiding doctors who want to rush you into treatment. I fell into that with an oncologist who really didn't know much about CLL. Get a second opinion from a CLL specialist or a hematologist who is very familiar with CLL especially if treatment is recommended. People here can recommend doctors who are near you. Once all the diagnostic tests are back you may be told that your husband is watch and wait. This is a really hard concept to wrap your head around, but it really is a good thing. Patients who have an indolent form of CLL can remain watch and wait for the rest of their lives. Second to " the cure " it's what we all hope for. Pat Quote Link to comment Share on other sites More sharing options...
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