Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 You are doing the right thing by having your daughter see her doctors. I personally have not experienced any mental " fuzziness " or dizziness with xolair. However, prednisone played havoc with my mind and singulair can also cause some mental issues in some people. No pred for three years! Thanks to xolair. What I do notice after my xolair shot is that for a day or so afterwards (even that afternoon) I want to sleep more than usual and I have to be careful not to get too drowsy. I do take naps on the day of and the day or two after and that seems to help. Hope you can get some help for your daughter. From: slgolder <slgolderl@...> 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 I experience dizziness and fuzziness from Xolair as well, although not at the intensity of what your daughter experiences. It usually lasts 24 hours after the shot. > > 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 9, 2009 Report Share Posted January 9, 2009 It sounds by your use of tense in your first paragraph that she had neurological issues before she began Xolair. So, just based upon that it would seem unlikely Xolair plays much of a role in what she has now. It might have helped her neurolgical symptoms tangentially to treatment for allergic asthma, but it seems unlikely it would cause what she goes through now. Just a word of note: I have had some dizziness after two shots in the one year that I have taken Xolair. The explanation given to me is that it is a lot of medication all at once hitting the system, so sometimes the body's difficulty in assimilating it causes some light- headedness. But, it it short term and not a patholgical side effect. --- In , " slgolder " <slgolderl@...> wrote: > > 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 9, 2009 Report Share Posted January 9, 2009 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 9, 2009 Report Share Posted January 9, 2009 >The explanation given to me > is that it is a lot of medication all at once hitting the system, so > sometimes the body's difficulty in assimilating it causes some light- > headedness>> You would not believe the whole pharmacy that I take daily for several chronic problems. Whenever I am asked what I am taking by a nurse, I get out my wallet and give her a typed written page of everything, what it's for and what doctor prescribed it. They love this because they don't have to take several minutes to write it all down in my chart. I have never had any problems at all with Xolair in the 5+ years I have been taking 2 shots per week. Regular allergy shots are much different. I always feel the needle and the sting of the extract being injected and it always is sore for a few days. BTW, I just had my shots 4 hours ago. Never felt a thing and can't tell where they were given. Doug Group founder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 > > 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 > > 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. > Adah, it is NOT old age. I am only 54 and have problems remembering things all the time. The other day someone asked me how my short term memory was. I replied: " Uhhh, what did you just say? " LOL Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 2-1/2 years on the max dose of Xolair every two weeks here. The first couple times I took it I remember some warm flushes that may or may not have had anything to do with the Xolair. But since then, nothing. No allergic reactions. No dizziness. Nothing but improved breathing. Unlike your teenage daughter, I'm in my early sixties. Still, Xolair, being a genetically engineered monoclonal antibody, is a very new medication so don't rule anything out and follow the advice of her doctors as well as your daughter's and your own intuition. Might be a worthwile idea to call the folks at Genetech and discuss your daughter's situation with them. I have a daughter that grew up with asthma too so I appreciate your concern. Fortunately, for now, she seems to have grown out of it in her mid 20's. But I think it's a ticking time bomb that will come back one day so I'm grateful that new medications like Xolair are evolving. > > 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 March 9, 2009 Report Share Posted March 9, 2009 Finally catching up on reading my e-mail. I developed a really bad vertigo that lasted several months after I was on Xolair (375 mg every two weeks) for over a year and off oral prednisone for 6 months. I caught a program on tv one night regarding side affects of singulair - depression, vertigo, suicide in young users just to name a few. I took myself off of it for one month and began to feel much better - I personally didn't think the drug was doing anything anyway and I have been off of it for over 9 months. My vertigo was so bad that I stopped driving on the interstate - and I am so paranoid now that I will have another attack of it, that I still take back roads to Yale when I have appointments - it takes me an hour and a half to get there verses 45 minutes but at least I feel that I am not a potential danger to myself or others. I still take zertec, Fexofenodine, and I pick up - guaffesin (OTC) to keep my congestion more liquid. I use Inhaled pred and albuterol. My mind isn't what it used to be - but then I'm 61 and its older than it used to be. For most of my adult life I always used some cough syrup at night (Nyquil when I was really bad - but mostly Robitussin DM)- when I told my dr. this she went ballistic - she is just my gp and I don't think she has a clue that some of us are worse at night and have a hard time going to sleep. Without Xolair however, I don't think I would be alive today - I was asthmatic 24/7 - now I just have exacerbations a couple of times a day which I check with my rescue inhaler or my nebulizer. Also, does anyone else here have trouble in grocery stores? Last I had to just leave my cart and go home the other day - I could not stand at the check out. Anne ________________________________ From: Adah Voigt <asthmatic50@...> Sent: Friday, January 9, 2009 11:32:47 AM Subject: Re: [ ] Mental issues - You are doing the right thing by having your daughter see her doctors. I personally have not experienced any mental " fuzziness " or dizziness with xolair. However, prednisone played havoc with my mind and singulair can also cause some mental issues in some people. No pred for three years! Thanks to xolair. What I do notice after my xolair shot is that for a day or so afterwards (even that afternoon) I want to sleep more than usual and I have to be careful not to get too drowsy. I do take naps on the day of and the day or two after and that seems to help. Hope you can get some help for your daughter. 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 > > 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...
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.