Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 > Debs, My rheumy also is hesitant to acknowledge that Enbrel is responsible for my 2 serious infections. However, other doctors have. I also know what I've read, & I think I am done with Enbrel!! I am really frightened to take it any more. I am currently reading books on antibiotic protocol & have an appointment with a doctor who is experienced in that later this week. I certainly understand your concern. I lost faith in my rheumy after I read about how Enbrel appears to be causing fungal infections. Many people have died from this, & he just seemed so casual about it. Good luck to you, & take care! Judy > > > > > > > > > > > > I saw my rheumy on Wednesday and he tells me that my health woes > (abdominal cellulitis) was not the fault of the Orencia. My > infectioius disease doc says no more " new drugs " . The ID doc said that > I had 3 incidents that wouod have killed most peopoe (cellulitis, GI > bleed out-7 units of blod and finally pulmonary embolism). I don't > know about ohters, but this REALLY scares me. She definitely got my > attention! > > Any suggestions?????? > > > Gentle, tender, springtime angel hugs...... > > > > Debs in FL > > > > > > .. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 Debs, Are your physicians talking to each other? If they can't come up with a plan, Mayo in Rochester, MN or s Hopkins in Baltimore await. Not an MD On Sun, Apr 19, 2009 at 6:21 PM, <BadKneesDebs@...> wrote: > > > > > I saw my rheumy on Wednesday and he tells me that my health woes > (abdominal cellulitis) was not the fault of the Orencia. My > infectioius disease doc says no more " new drugs " . The ID doc said that > I had 3 incidents that wouod have killed most peopoe (cellulitis, GI > bleed out-7 units of blod and finally pulmonary embolism). I don't > know about ohters, but this REALLY scares me. She definitely got my > attention! > > Any suggestions?????? > > Gentle, tender, springtime angel hugs...... > > Debs in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 Debs, I am so sorry that you are still having so many problems. You've been on every imaginable RA medication, and all of them have caused you lots of grief. I can do nothing but offer my sympathy. Your infectious disease doctor and your rheumatologist should get together and map out a plan. You shouldn't have to suffer so much. Hugs, Sue On Apr 19, 2009, at 7:21 PM, BadKneesDebs@... wrote: > > I saw my rheumy on Wednesday and he tells me that my health woes > (abdominal cellulitis) was not the fault of the Orencia. My > infectioius disease doc says no more " new drugs " . The ID doc said > that > I had 3 incidents that wouod have killed most peopoe (cellulitis, GI > bleed out-7 units of blod and finally pulmonary embolism). I don't > know about ohters, but this REALLY scares me. She definitely got my > attention! > > Any suggestions?????? > > > Gentle, tender, springtime angel hugs...... > > > > Debs in FL > > > > > > .. > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Yikes,things just keep getting worse. When I saw the Infectious Disease, I showed her all these lumps and bruises all over my body. She sent me for " STAT " lab work for bleeding time and CBC stuff. Well, I went to the oncologist yessterday and since 4/18/09, ALL my doctors knew that my coumadiin had no effect on my Lupus induced " sticky blood " . So I was walking around with the potential for another pulmonary embolism or worse. THEN, he goes on to tell me that my hemoglobin of 7.3, (normal around 10-12). He says that I need a blood transfusion, but he will tyr IV iron yesterday and then again in a few days. I didn't sleep at all last night and feel awful. I am so scared and disgusted at the same time. How can they treat people like this????? Well, back to redecorating my living room/dining room. Ordered certain wndow coverings from J C Penney and they decided to send ones that they liked better. UGH! Gentle, tender, angel hugs................... Debs in FL [ ] Re: Orencia???????? > Debs, My rheumy also is hesitant to acknowledge that Enbrel is responsible for my 2 serious infections. However, other doctors have. I also know what I've read, & I think I am done with Enbrel!! I am really frightened to take it any more. I am currently reading books on antibiotic protocol & have an appointment with a doctor who is experienced in that later this week. I certainly understand your concern. I lost faith in my rheumy after I read about how Enbrel appears to be causing fungal infections. Many people have died from this, & he just seemed so casual about it. Good luck to you, & take care! Judy > > > > > > > > > > > > I saw my rheumy on Wednesday and he tells me that my health woes > (abdominal cellulitis) was not the fault of the Orencia. My > infectioius disease doc says no more " new drugs " . The ID doc said that > I had 3 incidents that wouod have killed most peopoe (cellulitis, GI > bleed out-7 units of blod and finally pulmonary embolism). I don't > know about ohters, but this REALLY scares me. She definitely got my > attention! > > Any suggestions?????? > > > Gentle, tender, springtime angel hugs...... > > > > Debs in FL > > > > > > .. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 , Back to the ol' reliables!!!!!!! Thanks, sure am going to give them a thought. My only drawback is traveling while missing a leg. They were never ablle to fit a prosthesis due to the way the stump healed. Now my left leg has the cracked kneecap, so my left leg is nearly non functioning in addition to the peripheral neuropathy. Gentle, tender, angel hugs..................... Debs in FL Re: [ ] Orencia???????? Debs, Are your physicians talking to each other? If they can't come up with a plan, Mayo in Rochester, MN or s Hopkins in Baltimore await. Not an MD On Sun, Apr 19, 2009 at 6:21 PM, <BadKneesDebs@...> wrote: > > > > > I saw my rheumy on Wednesday and he tells me that my health woes > (abdominal cellulitis) was not the fault of the Orencia. My > infectioius disease doc says no more " new drugs " . The ID doc said that > I had 3 incidents that wouod have killed most peopoe (cellulitis, GI > bleed out-7 units of blod and finally pulmonary embolism). I don't > know about ohters, but this REALLY scares me. She definitely got my > attention! > > Any suggestions?????? > > Gentle, tender, springtime angel hugs...... > > Debs in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Hey Sue, I can't tell you how upset I am over the whole situation. The ID doc said let the oncologist decide. Well, I saw him yesterday and he tells me that my blood is clumping together at an alarming rate and my hemoglobin has dropped dramatically to 7.3 with no explanation other than I am bleeding somewhere internally!!! I was so scared and in shock that we never even got to the Orencia. The unexplained bruising on my arms has started again, when they were happening right in front in him. Ugh, I didn't sleep last night I am so upset and scared that I can't even think. The best part about this whole thing is that ALL my doctors have known since 4/18/09. Gentle, tender, angel hugs............... Debs in FL Re: [ ] Orencia???????? Debs, I am so sorry that you are still having so many problems. You've been on every imaginable RA medication, and all of them have caused you lots of grief. I can do nothing but offer my sympathy. Your infectious disease doctor and your rheumatologist should get together and map out a plan. You shouldn't have to suffer so much. Hugs, Sue On Apr 19, 2009, at 7:21 PM, BadKneesDebs@... wrote: > > I saw my rheumy on Wednesday and he tells me that my health woes > (abdominal cellulitis) was not the fault of the Orencia. My > infectioius disease doc says no more " new drugs " . The ID doc said > that > I had 3 incidents that wouod have killed most peopoe (cellulitis, GI > bleed out-7 units of blod and finally pulmonary embolism). I don't > know about ohters, but this REALLY scares me. She definitely got my > attention! > > Any suggestions?????? > > > Gentle, tender, springtime angel hugs...... > > > > Debs in FL > > > > > > .. > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Have a couple questions, I am getting ready to start rituxan infusions. Wanted to know if anyone in the group has been on this and what kind of side effects did you have from it From: [mailto: ] On Behalf Of BadKneesDebs@... Sent: Tuesday, April 28, 2009 9:12 AM Subject: Re: [ ] Orencia???????? , Back to the ol' reliables!!!!!!! Thanks, sure am going to give them a thought. My only drawback is traveling while missing a leg. They were never ablle to fit a prosthesis due to the way the stump healed. Now my left leg has the cracked kneecap, so my left leg is nearly non functioning in addition to the peripheral neuropathy. Gentle, tender, angel hugs..................... Debs in FL Re: [ ] Orencia???????? Debs, Are your physicians talking to each other? If they can't come up with a plan, Mayo in Rochester, MN or s Hopkins in Baltimore await. Not an MD On Sun, Apr 19, 2009 at 6:21 PM, <BadKneesDebs@... <mailto:BadKneesDebs%40aol.com> > wrote: > > > > > I saw my rheumy on Wednesday and he tells me that my health woes > (abdominal cellulitis) was not the fault of the Orencia. My > infectioius disease doc says no more " new drugs " . The ID doc said that > I had 3 incidents that wouod have killed most peopoe (cellulitis, GI > bleed out-7 units of blod and finally pulmonary embolism). I don't > know about ohters, but this REALLY scares me. She definitely got my > attention! > > Any suggestions?????? > > Gentle, tender, springtime angel hugs...... > > Debs in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2009 Report Share Posted April 29, 2009 hi deb take serropeptase several times a day on an empty stomach and that should get rid of your sticky blood. sorry to hear you are having such a rough time. monique Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2009 Report Share Posted April 29, 2009 , In our group, people with " sticky blood " usually have antiphospholipid syndrome, and it's quite dangerous to recommend or take a home remedy for it. Also, such a remedy will not remove the antibodies which are the source of the problem. The balance between " sticky blood " and " thin blood " must be maintained under the supervision of a physician. Not an MD On Wed, Apr 29, 2009 at 1:14 PM, Sauve <moniquesauve@...> wrote: > > > hi deb > > take serropeptase several times a day on an empty stomach and that > should get rid of your sticky blood. sorry to hear you are having such a > rough time. > > monique Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2009 Report Share Posted May 1, 2009 thanks for posting that, . Seems like a lot of people outside our community are not aware of antiphospholipid antibody syndrome. There was a thing on the Discovery channel about people with rare, undiagnoseable illnesses. One case history was a young woman that no one could figure out what was wrong with her, she kept having miscarriages, getting blood clots, microstrokes, etc. I immediately thought she must have aps. Sure enough, that's what it turned out to be and they were talking like the doctor had found the answer for world peace or something. I guess we ARE a rare breed at that! > > > > > > hi deb > > > > take serropeptase several times a day on an empty stomach and that > > should get rid of your sticky blood. sorry to hear you are having such a > > rough time. > > > > monique > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2009 Report Share Posted May 1, 2009 Just call in Dr. House! He would figure it out. Sue On May 1, 2009, at 10:12 AM, JANE wrote: > thanks for posting that, . Seems like a lot of people outside > our community are not aware of antiphospholipid antibody syndrome. > There was a thing on the Discovery channel about people with rare, > undiagnoseable illnesses. One case history was a young woman that no > one could figure out what was wrong with her, she kept having > miscarriages, getting blood clots, microstrokes, etc. I immediately > thought she must have aps. Sure enough, that's what it turned out to > be and they were talking like the doctor had found the answer for > world peace or something. I guess we ARE a rare breed at that! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Sue, I still have a huge crush on that guy! Not an MD On Fri, May 1, 2009 at 7:02 PM, marysue <marysue@...> wrote: > > > Just call in Dr. House! He would figure it out. > > Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Jane, It's amazing how many physicians still don't know what antiphospholipid syndrome is. Time to get with the program. I would flee any rheumatologist who doesn't know. Not an MD On Fri, May 1, 2009 at 9:12 AM, JANE <janeatregis@...> wrote: > > > thanks for posting that, . Seems like a lot of people outside our > community are not aware of antiphospholipid antibody syndrome. There was a > thing on the Discovery channel about people with rare, undiagnoseable > illnesses. One case history was a young woman that no one could figure out > what was wrong with her, she kept having miscarriages, getting blood clots, > microstrokes, etc. I immediately thought she must have aps. Sure enough, > that's what it turned out to be and they were talking like the doctor had > found the answer for world peace or something. I guess we ARE a rare breed > at that! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2009 Report Share Posted May 6, 2009 Sue, LOL......if it was just that easy!!!!! Debs in FL Re: [ ] Re: Orencia???????? Just call in Dr. House! He would figure it out. Sue On May 1, 2009, at 10:12 AM, JANE wrote: > thanks for posting that, . Seems like a lot of people outside > our community are not aware of antiphospholipid antibody syndrome. > There was a thing on the Discovery channel about people with rare, > undiagnoseable illnesses. One case history was a young woman that no > one could figure out what was wrong with her, she kept having > miscarriages, getting blood clots, microstrokes, etc. I immediately > thought she must have aps. Sure enough, that's what it turned out to > be and they were talking like the doctor had found the answer for > world peace or something. I guess we ARE a rare breed at that! Quote Link to comment Share on other sites More sharing options...
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