Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 Okay thanks. I am new to this. What is the omeprazol? You are taking both prednisone and remicade? I did not know that was needed. To: neurosarcoidosis Sent: Mon, November 29, 2010 2:29:49 PMSubject: Next Remicade You may remember that I had my first Infliximab (Remicade) infusion around four weeks ago. I am still on 20mg of prednisone and one omeprazol per day.Over the past week, things have not gone too well. Does the body kick back as the Remicade wear out, rather like cold turkey?Next infusion is on Wednesday, which should help - I hope!Best regards,Keit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 La, I think omeprazole is Prilosec. I just sent a post explaining the need for immune suppressants with the Remicade; otherwise you can form antibodies against the Remicade & have to discontinue it. , from reading about Tracie & Marla's experiences with Remicade, along with others, it seems that right after the infusion there is a day or two of exhaustion, then feeling pretty good for 2-4 weeks, then lousy the week or so before the next infusion. Marla, do I have that right? Of course, everyone will respond differently to any drug. Ramblin' RoseModerator I learned how to make Santa & Rudolph emoticons! Aren't they cute? *-=(:- )}}}> >:*) To: Neurosarcoidosis From: ladyt19119@...Date: Mon, 29 Nov 2010 13:54:13 -0800Subject: Re: Next Remicade Okay thanks. I am new to this. What is the omeprazol? You are taking both prednisone and remicade? I did not know that was needed. To: neurosarcoidosis Sent: Mon, November 29, 2010 2:29:49 PMSubject: Next Remicade You may remember that I had my first Infliximab (Remicade) infusion around four weeks ago. I am still on 20mg of prednisone and one omeprazol per day.Over the past week, things have not gone too well. Does the body kick back as the Remicade wear out, rather like cold turkey?Next infusion is on Wednesday, which should help - I hope!Best regards,Keit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 I get mine every 6 weeks, but w/o the other 2 drugs you ref'd. I always used to get Methotrexate w/mine but was taken off the MTX when it attacked my lungs. MTX is the only drug any of the docs ever told me was a compliment w/ all the biologics as a recommendation standard.My body does seem to know when it is time for another round of remicade. I always seem to want to sleep a lot as it wears off and again immediately after I get it.From: La Myers-Boswell To: Neurosarcoidosis Sent: Mon, November 29, 2010 12:54:13 PMSubject: Re: Next Remicade Okay thanks. I am new to this. What is the omeprazol? You are taking both prednisone and remicade? I did not know that was needed. To: neurosarcoidosis Sent: Mon, November 29, 2010 2:29:49 PMSubject: Next Remicade You may remember that I had my first Infliximab (Remicade) infusion around four weeks ago. I am still on 20mg of prednisone and one omeprazol per day.Over the past week, things have not gone too well. Does the body kick back as the Remicade wear out, rather like cold turkey?Next infusion is on Wednesday, which should help - I hope!Best regards,Keit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Hi Rose, I just checked and they are the same. It makes life very confusing, but as someone once said, we are two nations divided by a common language! Best regards, > > > La, I think omeprazole is Prilosec. I just sent a post explaining the need for immune suppressants with the Remicade; otherwise you can form antibodies against the Remicade & have to discontinue it. > > , from reading about Tracie & Marla's experiences with Remicade, along with others, it seems that right after the infusion there is a day or two of exhaustion, then feeling pretty good for 2-4 weeks, then lousy the week or so before the next infusion. Marla, do I have that right? Of course, everyone will respond differently to any drug. > > > > Ramblin' Rose > Moderator > > I learned how to make Santa & Rudolph emoticons! Aren't they cute? > > *-=(:- )}}}> > > >:*) > > > > > > > > > > To: Neurosarcoidosis > From: ladyt19119@... > Date: Mon, 29 Nov 2010 13:54:13 -0800 > Subject: Re: Next Remicade > > > > > > > > > > > Okay thanks. I am new to this. What is the omeprazol? You are taking both prednisone and remicade? I did not know that was needed. > > > > > > > To: neurosarcoidosis > Sent: Mon, November 29, 2010 2:29:49 PM > Subject: Next Remicade > > > You may remember that I had my first Infliximab (Remicade) infusion > around four weeks ago. I am still on 20mg of prednisone and one > omeprazol per day. > > Over the past week, things have not gone too well. Does the body kick > back as the Remicade wear out, rather like cold turkey? > > Next infusion is on Wednesday, which should help - I hope! > > Best regards, > Keit > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Yes the omeprazole is a generic for Prilosec so that meds like the naprosyn the doc just gave me for my Rhumetoid arthritis doesn;t upset my stomach so much, It is also used for the reasons you have said as well Rose. Hope all are as well as they can be. MattSubject: RE: Next RemicadeTo: neurosarcoidosis Date: Monday, November 29, 2010, 7:42 PM La, I think omeprazole is Prilosec. I just sent a post explaining the need for immune suppressants with the Remicade; otherwise you can form antibodies against the Remicade & have to discontinue it. , from reading about Tracie & Marla's experiences with Remicade, along with others, it seems that right after the infusion there is a day or two of exhaustion, then feeling pretty good for 2-4 weeks, then lousy the week or so before the next infusion. Marla, do I have that right? Of course, everyone will respond differently to any drug. Ramblin' RoseModerator I learned how to make Santa & Rudolph emoticons! Aren't they cute? *-=(:- )}}}> >:*) To: Neurosarcoidosis From: ladyt19119@...Date: Mon, 29 Nov 2010 13:54:13 -0800Subject: Re: Next Remicade Okay thanks. I am new to this. What is the omeprazol? You are taking both prednisone and remicade? I did not know that was needed. To: neurosarcoidosis Sent: Mon, November 29, 2010 2:29:49 PMSubject: Next Remicade You may remember that I had my first Infliximab (Remicade) infusion around four weeks ago. I am still on 20mg of prednisone and one omeprazol per day.Over the past week, things have not gone too well. Does the body kick back as the Remicade wear out, rather like cold turkey?Next infusion is on Wednesday, which should help - I hope!Best regards,Keit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 As the following two articles explain, many patients receiving Remicade (and related drugs such as Humira & Enbrel) form antibodies to the Remicade. Those with the antibodies have a higher rate of infusion reaction & also tend to experience loss of effectiveness by the Remicade therapy. So not everyone will develop antibodies, but if you do, the consequences could be serious. To read more than these two articles, type "antibodies to Remicade" in your browser. I didn't find anything that specifically addresses the possibility of antibody formation during treatment for sarcoidosis, but I do know of at least one patient who developed antibodies & subsequently had a very severe reaction to the Remicade. She was not given an immune-suppressant such as Pred, Imuran or Mtx. You might want to discuss this issue with your doctor. Taken from article by s Hopkins Arthritis Center http://www.hopkins-arthritis.org/arthritis-news/2003/crohns.html Conclusion: Patients who develop anti-infliximab antibodies are at higher risk for developing infusion reactions, and a reduced duration of response, to treatment with infliximab. Co-treatment with an immunosuppressive drug(s) can suppress the antibody response and prolong the clinical response to infliximab.Editorial Comments: In clinical trials in rheumatoid arthritis (RA), infliximab treatment in the absence of methotrexate (MTX) was associated with a higher incidence of anti-infliximab antibodies and a shorter duration of action compared to co-treatment with infliximab and MTX. Consequently, the FDA guidelines for infliximab use in RA recommend co-treatment with MTX. Early treatment studies of infliximab in Crohns disease utilized a single dose and the issue of antibodies was initially not as concerning. Furthermore, some argued that propensity for developing anti-infliximab antibodies might be more likely in diseases like RA that are characterized by numerous (auto)antibodies.The findings in this study in patients with Crohns disease, however, replicate those found in RA. Antibodies to infliximab were common in the absence of immunosuppressives, and their presence was associated with a shorter duration of drug effect and more infusion reactions. It seems likely that remicade therapy in Crohns disease will evolve towards combination therapy (remicade + immunosuppressive drug), as in RA, in patients requiring chronic treatment.Infliximab has also been proven to be beneficial for the treatment of ankylosing spondylitis and psoriasis. It remains to be seen whether these patients will also develop anti-infliximab antibodies, but it certainly seems likely. This is an excerpt from drugs.com, which contains info from the FDA: http://www.drugs.com/pro/remicade.html Patients who became positive for antibodies to infliximab were more likely (approximately two- to three-fold) to have an infusion reaction than were those who were negative. Use of concomitant immunosuppressant agents appeared to reduce the frequency of both antibodies to infliximab and infusion reactions [see Adverse Reactions (6.1) and Drug Interactions (7.3)]. Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: Neurosarcoidosis From: cmoralez_ak@...Date: Mon, 29 Nov 2010 22:42:25 -0800Subject: Re: Next Remicade I get mine every 6 weeks, but w/o the other 2 drugs you ref'd. I always used to get Methotrexate w/mine but was taken off the MTX when it attacked my lungs. MTX is the only drug any of the docs ever told me was a compliment w/ all the biologics as a recommendation standard.My body does seem to know when it is time for another round of remicade. I always seem to want to sleep a lot as it wears off and again immediately after I get it. To: Neurosarcoidosis Sent: Mon, November 29, 2010 12:54:13 PMSubject: Re: Next Remicade Okay thanks. I am new to this. What is the omeprazol? You are taking both prednisone and remicade? I did not know that was needed. To: neurosarcoidosis Sent: Mon, November 29, 2010 2:29:49 PMSubject: Next Remicade You may remember that I had my first Infliximab (Remicade) infusion around four weeks ago. I am still on 20mg of prednisone and one omeprazol per day.Over the past week, things have not gone too well. Does the body kick back as the Remicade wear out, rather like cold turkey?Next infusion is on Wednesday, which should help - I hope!Best regards,Keit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 , I had a 35+ year career in nursing & midwifery, and long before any brain fog or CRS (can't remember s**t) from sarc came along, I couldn't remember generic drug names. I could never have been a pharmacist! Or a botanist/biologist for that matter. Homo sapiens is about the extent of my memory of species' names! But those people probably couldn't catch a baby safely or sew up some delicate anatomy either. Different strokes for different folks, right? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Tue, 30 Nov 2010 08:15:11 +0000> Subject: Re: Next Remicade> > Hi Rose,> > I just checked and they are the same. It makes life very confusing, but as someone once said, we are two nations divided by a common language!> > Best regards,> > > > >> > > > La, I think omeprazole is Prilosec. I just sent a post explaining the need for immune suppressants with the Remicade; otherwise you can form antibodies against the Remicade & have to discontinue it.> > > > , from reading about Tracie & Marla's experiences with Remicade, along with others, it seems that right after the infusion there is a day or two of exhaustion, then feeling pretty good for 2-4 weeks, then lousy the week or so before the next infusion. Marla, do I have that right? Of course, everyone will respond differently to any drug.> > > > > > > > Ramblin' Rose> > Moderator> > > > I learned how to make Santa & Rudolph emoticons! Aren't they cute?> > > > *-=(:- )}}}> > > > > >:*) > > > > > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > Date: Mon, 29 Nov 2010 13:54:13 -0800> > Subject: Re: Next Remicade> > > > > > > > > > > > > > > > > > > > > > Okay thanks. I am new to this. What is the omeprazol? You are taking both prednisone and remicade? I did not know that was needed. > > > > > > > > > > > > > > To: neurosarcoidosis > > Sent: Mon, November 29, 2010 2:29:49 PM> > Subject: Next Remicade> > > > > > You may remember that I had my first Infliximab (Remicade) infusion > > around four weeks ago. I am still on 20mg of prednisone and one > > omeprazol per day.> > > > Over the past week, things have not gone too well. Does the body kick > > back as the Remicade wear out, rather like cold turkey?> > > > Next infusion is on Wednesday, which should help - I hope!> > > > Best regards,> > Keit> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Matt, I've about recuperated from Thanksgiving, but I've had to mess with my hot tub just about every day. I've had it nearly 7 years & it's wonderful for my back & leg cramps, as well as the neuropathic pain in my feet. It's also great for stress relief. It's an outdoor spa, and I love to go out there late at night, relax & just look up at the stars. However, after talking on the phone with the repairman & trying some things he recommended, we've decided that the heater pump is going out. It's barely keeping the water temp in the 70's, which is a bit too chilly for me! Especially with the temp starting to drop into the 20's. So he'll be out in the next few days; it will probably cost close to $500. I've told my kids & grandkids that they are getting a heat pump for Christmas! I just hope it's back in commission by the first snowfall. I absolutely love being out in my hot tub at night with the snow falling. It's better than Prozac. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis ; Neurosarcoidosis From: dmatt1960@...Date: Tue, 30 Nov 2010 15:29:55 -0800Subject: RE: Next Remicade Yes the omeprazole is a generic for Prilosec so that meds like the naprosyn the doc just gave me for my Rhumetoid arthritis doesn;t upset my stomach so much, It is also used for the reasons you have said as well Rose. Hope all are as well as they can be. Matt Subject: RE: Next RemicadeTo: neurosarcoidosis Date: Monday, November 29, 2010, 7:42 PM La, I think omeprazole is Prilosec. I just sent a post explaining the need for immune suppressants with the Remicade; otherwise you can form antibodies against the Remicade & have to discontinue it. , from reading about Tracie & Marla's experiences with Remicade, along with others, it seems that right after the infusion there is a day or two of exhaustion, then feeling pretty good for 2-4 weeks, then lousy the week or so before the next infusion. Marla, do I have that right? Of course, everyone will respond differently to any drug. Ramblin' RoseModerator I learned how to make Santa & Rudolph emoticons! Aren't they cute? *-=(:- )}}}> >:*) To: Neurosarcoidosis From: ladyt19119@...Date: Mon, 29 Nov 2010 13:54:13 -0800Subject: Re: Next Remicade Okay thanks. I am new to this. What is the omeprazol? You are taking both prednisone and remicade? I did not know that was needed. To: neurosarcoidosis Sent: Mon, November 29, 2010 2:29:49 PMSubject: Next Remicade You may remember that I had my first Infliximab (Remicade) infusion around four weeks ago. I am still on 20mg of prednisone and one omeprazol per day.Over the past week, things have not gone too well. Does the body kick back as the Remicade wear out, rather like cold turkey?Next infusion is on Wednesday, which should help - I hope!Best regards,Keit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 To add to Rose's article's. This is one of the reason's I've been avoiding (until absolutely necessary) the Remicade. This is from rxlist.com and this comes before any of the normal prescribing info. Normally they try and hide things like deep in the article not put it in a box as the first listing. Look where it says that most of the serious infections come when Remicade is given with other immunosuppressants such as methotrexate or corticosteroids. ..Not trying to scare or talk anyone into or out of anything, just sharing info. This one scared me, REMICADE (infliximab) Lyophilized Concentrate for Intravenous (IV) Injection WARNINGS SERIOUS INFECTIONS Patients treated with REMICADE® are at increased risk for developing serious infections that may lead to hospitalization or death [see WARNINGS ANDPRECAUTIONS and ADVERSE REACTIONS] Most patients who developed these infections were taking concomitant immunosuppressants such as methotrexate or corticosteroids. REMICADE should be discontinued if a patient develops a serious infection or sepsis. Reported infections include: Active tuberculosis, including reactivation of latent tuberculosis. Patients with tuberculosis have frequently presented with disseminated or extrapulmonary disease. Patients should be tested for latent tuberculosis before REMICADE use and during therapy.1,2 Treatment for latent infection should be initiated prior to REMICADE use.Invasive fungal infections, including histoplasmosis, coccidioidomycosis, candidiasis, aspergillosis, blastomycosis, and pneumocystosis. Patients with histoplasmosis or other invasive fungal infections may present with disseminated, rather than localized, disease. Antigen and antibody testing for histoplasmosis may be negative in some patients with active infection. Empiric anti-fungal therapy should be considered in patients at risk for invasive fungal infections who develop severe systemic illness.Bacterial, viral and other infections due to opportunistic pathogens. The risks and benefits of treatment with REMICADE should be carefully considered prior to initiating therapy in patients with chronic or recurrent infection. Patients should be closely monitored for the development of signs and symptoms of infection during and after treatment with REMICADE, including the possible development of tuberculosis in patients who tested negative for latent tuberculosis infection prior to initiating therapy. MALIGNANCY Lymphoma and other malignancies, some fatal, have been reported in children and adolescent patients treated with TNF blockers, including REMICADE [see WARNINGS AND PRECAUTIONS]. Postmarketing cases of hepatosplenic T-cell lymphoma (HSTCL), a rare type of T-cell lymphoma, have been reported in patients treated with TNF blockers including REMICADE. These cases have had a very aggressive disease course and have been fatal. All reported REMICADE cases have occurred in patients with Crohn's disease or ulcerative colitis and the majority were in adolescent and young adult males. All of these patients had received treatment with azathioprine or 6-mercaptopurine concomitantly with REMICADE at or prior to diagnosis. Next Remicade You may remember that I had my first Infliximab (Remicade) infusion around four weeks ago. I am still on 20mg of prednisone and one omeprazol per day. Over the past week, things have not gone too well. Does the body kick back as the Remicade wear out, rather like cold turkey? Next infusion is on Wednesday, which should help - I hope! Best regards, Keit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Good point, Mitch. This is another one of those danged if you do & danged if you don't situations. Some of our members have gotten to the point where their symptoms are unmanageable, or life-threatening in Tracie's case. In that situation, Remicade may be your best option. If you go for the Remicade, then you need to decide if you want to take an immune-suppressant with it to prevent the formation of antibodies to the Remicade. We've had only 2 or 3 members, to my recollection, who've had serious infections with the Remicade. Darlene apparently had an undiagnosed histoplasmosis, which went wild with the Remicade & nearly killed her. I don't remember if she was taking Pred or another immune-suppressant with the Remicade. Most members on the Remicade have done fine. Just remember: none of these drugs can be taken forever, without a toll on your body. As Tracie said, she's glad for the Remicade, because it kept her alive long enough to learn about alternatives, but eventually the Remicade itself nearly killed her. So whatever drug therapy you opt for (notice I said YOU opt for; not your doctor), don't expect to be on it forever. Look into the nutritional changes; if it's not feasible to do something like Standard Process or Aden protocol, start making changes you can live with to improve your diet. We've touched on this recently, but I'd like to see some more input from those who have incorporated healthier eating & supplements. Speak up, y'all! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: mjcv29a@...Date: Wed, 1 Dec 2010 01:49:35 -0500Subject: Re: Next Remicade To add to Rose's article's. This is one of the reason's I've been avoiding (until absolutely necessary) the Remicade. This is from rxlist.com and this comes before any of the normal prescribing info. Normally they try and hide things like deep in the article not put it in a box as the first listing. Look where it says that most of the serious infections come when Remicade is given with other immunosuppressants such as methotrexate or corticosteroids..Not trying to scare or talk anyone into or out of anything, just sharing info. This one scared me, REMICADE(infliximab) Lyophilized Concentrate for Intravenous (IV) Injection WARNINGS SERIOUS INFECTIONS Patients treated with REMICADE® are at increased risk for developing serious infections that may lead to hospitalization or death [see WARNINGS ANDPRECAUTIONS and ADVERSE REACTIONS] Most patients who developed these infections were taking concomitant immunosuppressants such as methotrexate or corticosteroids. REMICADE should be discontinued if a patient develops a serious infection or sepsis. Reported infections include: Active tuberculosis, including reactivation of latent tuberculosis. Patients with tuberculosis have frequently presented with disseminated or extrapulmonary disease. Patients should be tested for latent tuberculosis before REMICADE use and during therapy.1,2 Treatment for latent infection should be initiated prior to REMICADE use. Invasive fungal infections, including histoplasmosis, coccidioidomycosis, candidiasis, aspergillosis, blastomycosis, and pneumocystosis. Patients with histoplasmosis or other invasive fungal infections may present with disseminated, rather than localized, disease. Antigen and antibody testing for histoplasmosis may be negative in some patients with active infection. Empiric anti-fungal therapy should be considered in patients at risk for invasive fungal infections who develop severe systemic illness. Bacterial, viral and other infections due to opportunistic pathogens. The risks and benefits of treatment with REMICADE should be carefully considered prior to initiating therapy in patients with chronic or recurrent infection. Patients should be closely monitored for the development of signs and symptoms of infection during and after treatment with REMICADE, including the possible development of tuberculosis in patients who tested negative for latent tuberculosis infection prior to initiating therapy. MALIGNANCY Lymphoma and other malignancies, some fatal, have been reported in children and adolescent patients treated with TNF blockers, including REMICADE [see WARNINGS AND PRECAUTIONS]. Postmarketing cases of hepatosplenic T-cell lymphoma (HSTCL), a rare type of T-cell lymphoma, have been reported in patients treated with TNF blockers including REMICADE. These cases have had a very aggressive disease course and have been fatal. All reported REMICADE cases have occurred in patients with Crohn's disease or ulcerative colitis and the majority were in adolescent and young adult males. All of these patients had received treatment with azathioprine or 6-mercaptopurine concomitantly with REMICADE at or prior to diagnosis. Next Remicade You may remember that I had my first Infliximab (Remicade) infusion around four weeks ago. I am still on 20mg of prednisone and one omeprazol per day.Over the past week, things have not gone too well. Does the body kick back as the Remicade wear out, rather like cold turkey?Next infusion is on Wednesday, which should help - I hope!Best regards,Keit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2010 Report Share Posted December 1, 2010 Kieth, Yes that is what I find, at first I was getting Remicade every 6 weeks, and that last weekwas not a good one, so my doctor upped it to every 5 weeks, which is better, but I still find that those last few days right before I'm due, I fall back, then after, I don't the best for a day or two, If I come home rest that first day, and lay low the next I do better, but who does that:) you should feel better with your treatment today, you may or may not feel it right away. or you may, my problem is I get a little burst of energy right away and feel like I can do anything and try, then pay, so rest after your infusion you will feel better sooner. Good luck I hope all goes well for you today, I'm sorry I didn't get back to you sooner, Thanksgiving set me behind. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)Â Â Â You may remember that I had my first Infliximab (Remicade) infusion around four weeks ago. I am still on 20mg of prednisone and one omeprazol per day. Over the past week, things have not gone too well. Does the body kick back as the Remicade wear out, rather like cold turkey? Next infusion is on Wednesday, which should help - I hope! Best regards, Keit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 Rose, Thank you very much for the useful articles. I still need more time to study them fully, but first reading was very interesting. Thank you also, Marla, for your kind thoughts. The second infusion went fine on Wednesday. I felt good and don't appear to have had any sytrange side effects. In fact I slept better that night than for a long time. One matter I discussed with the neuro concerned the migraine attacks that I have. They are a bit strange, in that there is no pain. When they happen, which is occasionally and when under stress or tiredness (more than usual, they start as twinkly triangles in a circle at the centre of vision in both eyes, expand outwards and then contract back to the centre. Because it's in both eyes, it's brain, rather than optical. I usually have a slight headache afterwards. Anyway, he has put me on Topiramate, which is primarily used to prevent epileptic seizures, as well as migraine prevention. I took the first last evening and feel quite calm this morning, but will be interested to see how it pans out. The drug can be called Topamax, which may be the US name. Best regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 Hi , So glad to hear that the second infusion helped more, and each one will to a point, then it will hopefully hold you at a good place for some time. I have issues with my eyes too, vision going in and out, I get the lights, I haven't had a migraine in years, but still sometimes feel like one is coming on. I do however get terrible nerve pain in the head, and they are so different, it's a numbness kind of pain for me. Hope you just get better and better. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)Â Â Â Rose, Thank you very much for the useful articles. I still need more time to study them fully, but first reading was very interesting. Thank you also, Marla, for your kind thoughts. The second infusion went fine on Wednesday. I felt good and don't appear to have had any sytrange side effects. In fact I slept better that night than for a long time. One matter I discussed with the neuro concerned the migraine attacks that I have. They are a bit strange, in that there is no pain. When they happen, which is occasionally and when under stress or tiredness (more than usual, they start as twinkly triangles in a circle at the centre of vision in both eyes, expand outwards and then contract back to the centre. Because it's in both eyes, it's brain, rather than optical. I usually have a slight headache afterwards. Anyway, he has put me on Topiramate, which is primarily used to prevent epileptic seizures, as well as migraine prevention. I took the first last evening and feel quite calm this morning, but will be interested to see how it pans out. The drug can be called Topamax, which may be the US name. Best regards, 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.