Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Thanks! I have received a lot of input today, and it is all appreciated. We got her allergy shots today, but we decided to hold off on xolair until we have more info on issues she is dealing with. We see Dr. Minirth on Jan 20th. He is known nation-wide, and one of his specialties is determining interactions and reactions caused by medications. His office recommended holding off until he sees my daughter. When I shared my daughter's symptoms with his assistant, she told me that although he would not diagnose over the phone, his philosophy is very clear and well-known. " ANY medication can cause ANY type of reaction in ANYbody at ANY time. " I am interested in his thoughts re: these recent events. My daughter is very concerned about not getting her xolair today; she has become one of the " poster children " for Chronic Disease Fund, as the xolair has made such a significant difference in her quality of life. I will let you know what we learn when we meet with Dr. Minirth in a couple of weeks. Thanks again! <>< On Fri, Jan 9, 2009 at 3:00 PM, pyle456 <jamcculloch2@...> wrote: > I seriously doubt that Xolair is to blame here, BUT it may be that > your daughter has an underlying condition that has changed or > developed independent of Xolair that doesn't like Xolair. It may > also be that by drastically reducing your daughter's allergic > response, indirectly gave her short-term improvement in other > conditions that might normally be exacerbated by an allergic > response. In particular, (and this is based only on my own > experiences) I'm thinking that Xolair might have reduced allergic- > caused inflammation in her sinsuses and respiratory tract that may > normally have irritated other systems. OR, alternatively, other > medicines she took for allergies that she no longer takes may have > delayed the process of another disease or condition. My example here > is that before Xolair I took a lot of prednisone that minimized > inflammation in my right hand and foot which has since become > troublesome now that I don't have to take so much pred. Arthritis > runs in our family and typically appears early with slight trouble in > a foot/ankle and/or hand/wrist. > > I would urge you to have your daughter's immunologist contact the > folks at National Jewish and a couple of the other research hospitals > that were involved in the clinical trials (and continue to be > involved in Xolair research) to see if anyone else has a patient with > similar symptoms. > > Do everything you can, leave no stone unturned. Regardless, it would > probably not make a great difference either way if you delayed your > decision regarding your daughter getting another dose of Xolair for a > week, to give yourself some more time to get more info and so on. > > PLEASE let us know how your daughter does and what you find out. > > Addy > Group-co-owner > > > > > > > My teenage daughter began xolair treatments in October 2007 for > > severe allergic asthma. By Spring 2008, even her neurological > issues > > (chronic nerve pain, seizures, migraines) had improved > significantly. > > She has battled some illness the past few months, but nothing > severe. > > > > She received her December injections on Tues, Dec 9. She woke up > > dizzy on Weds, and she fell in the bathroom - did not hit her head. > > Since this time, she has suffered from significant memory lapses - > > many times each day. Within a couple of weeks of this, she was > > experiencing severe mood swings. This past weekend, she began > having > > minor hallucinations; the mental fuzziness is still quite severe. > She > > feels " dumb " and " fuzzy " - she has always been a bright, well- > > adjusted girl. It has only been the past two days that she has > seemed > > like her old self again ... she has had a few episodes, but nothing > > compared to what has taken place over the past month. > > > > Initially, her immunologist said it appeared to be a reaction to > the > > xolair. The did a 48 hr. video EEG to rule out seizures. Now that > we > > are at the point for her Jan injections, her immunologist says he > > doesn't think that the xolair has anything at all to do with these > > symptoms. > > > > Her neurologist has encouraged me to make an appointment with a > > psychiatrist, as she is dealing with a chemical imbalance. These > > symptoms STARTED just 12 hrs after her 14th xolair injections. We > > have an appt on Jan 20th with a psychiatrist, but I am concerned > > about getting injections before we meet with him to learn his > > opinions re: xolair triggering this reaction. > > > > Please ... if anyone in this group has experienced anything > similar, > > I would greatly appreciate any input. This drug is still so new > that > > information is limited. I have often referred to it as the " wonder > > drug that gave me my daughter back. " Unfortunately, we are now > > concerned that it has somehow had the opposite effect! > > > > > -- <>< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I was thinking about some of my teaching experiences and I can remember being very frustrated while on pred. All of you have experienced slow computer drives at some time or another. Right? Well, that's how my brain felt at times--like a slow moving computer finding the information. It had to do with trying to remember a certain word to use, a certain passage I had memorized in the past, etc. Eventually I would rremember it, but by the time I remembered it, it was too late. Grateful for xolair. I am once again working on increasing my capacity to remember things......Sometimes it is better. Then again, I am entering what some people know as " old age..... " Now when I can't remember something right away I attribute it to overload. From: uca79iii <uca79iii@...> Subject: [ ] Re: Mental issues - Date: Friday, January 9, 2009, 4:32 PM > > I seriously doubt that Xolair is to blame here, BUT it may be that > your daughter has an underlying condition that has changed or > developed independent of Xolair that doesn't like Xolair. It may > also be that by drastically reducing your daughter's allergic > response, indirectly gave her short-term improvement in other > conditions that might normally be exacerbated by an allergic > response. In particular, (and this is based only on my own > experiences) I'm thinking that Xolair might have reduced allergic- > caused inflammation in her sinsuses and respiratory tract that may > normally have irritated other systems. OR, alternatively, other > medicines she took for allergies that she no longer takes may have > delayed the process of another disease or condition. My example here > is that before Xolair I took a lot of prednisone that minimized > inflammation in my right hand and foot which has since become > troublesome now that I don't have to take so much pred. Arthritis > runs in our family and typically appears early with slight trouble in > a foot/ankle and/or hand/wrist. > > I would urge you to have your daughter's immunologist contact the > folks at National Jewish and a couple of the other research hospitals > that were involved in the clinical trials (and continue to be > involved in Xolair research) to see if anyone else has a patient with > similar symptoms. > > Do everything you can, leave no stone unturned. Regardless, it would > probably not make a great difference either way if you delayed your > decision regarding your daughter getting another dose of Xolair for a > week, to give yourself some more time to get more info and so on. > > PLEASE let us know how your daughter does and what you find out. > > Addy > Group-co-owner > > I totally agree with Addy! Never in all my 5 years of being on xolair and with my training to be a patient speaker have I heard of xolair causing anything this serious however, you need to leave no stone unturned in getting answers. Doug Group founder and co-owner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Whew! That's a relief.....Not old age, ? Thanks for your encouragement. Now what was it we were discussing? :-) note from Doug: hahahahaha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 I still think xolair caused my sinusitis. CT scans performed before I started Xolair therapy were normal without signs of any gunk and now they are filled with gunk. I have read that xolair can cause a sinus infection. Since I am already slightly low on IGA which is a substance found in the mucosa to combat infection, I believe taking xolair caused a negative synergy effect. A month into xolair, the sludge showed up and it now will go away for a day or two after I receive xolair and then returns by day 3. This drug has a black box warning for a reason..... ________________________________ From: uca79iii <uca79iii@...> Sent: Monday, March 9, 2009 5:16:41 PM Subject: [ ] Re: Mental issues - > > From: slgolder <slgolderlgmail (DOT) com> > Subject: [ ] Mental issues - > > Date: Thursday, January 8, 2009, 9:35 PM > > My teenage daughter began xolair treatments in October 2007 for > severe allergic asthma. By Spring 2008, even her neurological issues > (chronic nerve pain, seizures, migraines) had improved significantly. > She has battled some illness the past few months, but nothing severe. > > She received her December injections on Tues, Dec 9. She woke up > dizzy on Weds, and she fell in the bathroom - did not hit her head. > Since this time, she has suffered from significant memory lapses - > many times each day. Within a couple of weeks of this, she was > experiencing severe mood swings. This past weekend, she began having > minor hallucinations; the mental fuzziness is still quite severe. She > feels " dumb " and " fuzzy " - she has always been a bright, well- > adjusted girl. It has only been the past two days that she has seemed > like her old self again ... she has had a few episodes, but nothing > compared to what has taken place over the past month. > > Initially, her immunologist said it appeared to be a reaction to the > xolair. The did a 48 hr. video EEG to rule out seizures. Now that we > are at the point for her Jan injections, her immunologist says he > doesn't think that the xolair has anything at all to do with these > symptoms. > > Her neurologist has encouraged me to make an appointment with a > psychiatrist, as she is dealing with a chemical imbalance. These > symptoms STARTED just 12 hrs after her 14th xolair injections. We > have an appt on Jan 20th with a psychiatrist, but I am concerned > about getting injections before we meet with him to learn his > opinions re: xolair triggering this reaction. > > Please ... if anyone in this group has experienced anything similar, > I would greatly appreciate any input. This drug is still so new that > information is limited. I have often referred to it as the " wonder > drug that gave me my daughter back. " Unfortunately, we are now > concerned that it has somehow had the opposite effect! > > I had really bad vertigo too last year. It would attack in the middle of the night while I was sound asleep. They ran all sorts of tests and couldn't find out why I was having it. I even had my neurosurgeon do a whole MRI where I had my neck fusion surgeries and he even a brain MRI. (My wife always said I needed my head examined LOL) Finally, I asked my PC doctor to look over all the meds I was takeing again. (I have several from all the specialists too) She told me to drop my Lamictal to 150 mg instead of 200 every night. that did it, NO MORE VERTIGO! Vertigo started when another doctor upped my dose to 200 mg. Xolair had nothing do to with it. I have been on xolair for 5.5 years with no problems whatsoever. Lamictal is a medication for or Bi-Polar seizures. Oh yea, I don't have those either thanks to Lamictal. LOL! Have your PC check everything you are taking. You might find the answer like I did Doug Group founder Quote Link to comment Share on other sites More sharing options...
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