Guest guest Posted September 19, 2001 Report Share Posted September 19, 2001 Hi e, A few years ago I had to be on B12 injections, and my Dr. gave me an Rx for them, as my best friend was an RN who gave me the shots. I was only having her give me one per week -- sometimes two. When I told my Dr. I wasn't " bouncing back " as I thought I should; he asked my how often was I getting my injections. When I told him, he said, 'No Wonder, you should be getting these nearly every day --- then continued, that what I was doing was the same as taking one or two multiple vitamins per week. I needed to take them everyday! I felt like...... duh, I never really thought of it that way! I have no problem getting shots, however, I could never give myself one. Now, I have a daughter who gives totally painless shots --- she's finished before you realized she 'zapped' you! Hope this is helpful for someone! Blessings, Martha M. NSIF ----- Original Message ----- From: <eRene@...> < >; <SalineInfo > Sent: Tuesday, September 18, 2001 1:51 AM Subject: Relapse > Hi everyone! > > I hope everyone is doing well and dealing with the > tragedies of last wk okay. I am still in shock myself > as I think everyone in the world is. > > Anyway, I thought I'd let you all know that I have been > feeling much more sick in the last 2-3 wks than I have > all summer. My pain has come back full force, I am > having a horrible time with memory (is this what > everyone calls brain fog???), my fatigue is severe, and > my eyes and mouth have gotten severely dry again. The > memory thing is really worrying me, as I haven't had any > problems with memory since 1997, and even then when all > my health problems started, it wasn't this severe and > problematic. > > Anyway, I was wondering if I could contribute my > worsening of symptoms to the death of both of my > grandparents 2 wks ago. I lost them within 4 days of > each other, and then was not able to go to the funerals > because of work. But my symptoms were worsening before > that. > > I saw a rheumy here in Seattle today, and he agreed with > me that I'm having a flare of lupus (so I guess it isn't > completely gone), fibromyalgia, and Sjogren's. As much > as I didn't want to, I agreed to restart some meds that > were very helpful in the spring. I restarted > methotrexate, evoxac, and got a rx for vicodin. In > addition, I asked him about Vit B12 injections, and > whether he used them, believed in them, and would he be > willing to try it out on me. If you all remember, my > rheumy in Denver felt that B12 injections were not > necessary and caused people to have the placebo effect. > This doc is just the opposite. He uses B12 injections, > feels it works, and thinks I could benefit from it. So > I got my first shot today. OUCH---they hurt!! At any > rate, it is interesting to see different schools of > thought, and how docs in different parts of the country > view treatments. This rheumy in Seattle also knows my > rheumy in Denver, and has a great deal of respect for > him. However, they differ greatly in their opinions. > > Anyway, he drew a bunch of labs, and hopefully I will > get the results by the end of the wk. I will be curious > to see if my ANA titer has gone up. I also had him > check my thyroid, as I feel I might be hypothyroid. > > Now, my question to everyone who takes B12 injections is > how do you give it to yourself, or how does your doc > give them to you? And how often do you get them? I > told him that I would inject myself, thinking that they > were SQ injections, but I got it IM today, and the > pharmacist said that it should be given IM. My drug > book says it can be given either way. I don't know if I > can give myself an IM shot!! So, how does everyone do > it? And he told me to give myself an injection every > month. I thought that it was more frequent. So, any > and all info would be greatly appreciated. > > e > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2001 Report Share Posted September 19, 2001 Martha, My rheumy only has me giving an injection 1x/month!! I thought that I'd read somewhere that they should be given at least 3x/wk! I will have to check with my doc on that. Even my drug book says it should be given more frequently. Anyway, there is no way that I can give myself an IM shot. I could do a SQ, but not IM. So, I will have to get a friend to give it to me. I did notice that today I had more energy and seemed to be more " alert. " However, I have to wonder if that might be the placebo affect. I guess I will just need to wait and see if I continue to feel better. e > Hi e, > > A few years ago I had to be on B12 injections, and my Dr. gave me an Rx for > them, as my best friend was an RN who gave me the shots. I was only having > her give me one per week -- sometimes two. When I told my Dr. I wasn't > " bouncing back " as I thought I should; he asked my how often was I getting > my injections. When I told him, he said, 'No Wonder, you should be getting > these nearly every day --- then continued, that what I was doing was the > same as taking one or two multiple vitamins per week. I needed to take them > everyday! I felt like...... duh, I never really thought of it that way! > > I have no problem getting shots, however, I could never give myself one. > Now, I have a daughter who gives totally painless shots --- she's finished > before you realized she 'zapped' you! > > Hope this is helpful for someone! > > Blessings, > Martha M. > NSIF > > ----- Original Message ----- > From: <eRene@...> > < >; <SalineInfo > > Sent: Tuesday, September 18, 2001 1:51 AM > Subject: Relapse > > > > Hi everyone! > > > > I hope everyone is doing well and dealing with the > > tragedies of last wk okay. I am still in shock myself > > as I think everyone in the world is. > > > > Anyway, I thought I'd let you all know that I have been > > feeling much more sick in the last 2-3 wks than I have > > all summer. My pain has come back full force, I am > > having a horrible time with memory (is this what > > everyone calls brain fog???), my fatigue is severe, and > > my eyes and mouth have gotten severely dry again. The > > memory thing is really worrying me, as I haven't had any > > problems with memory since 1997, and even then when all > > my health problems started, it wasn't this severe and > > problematic. > > > > Anyway, I was wondering if I could contribute my > > worsening of symptoms to the death of both of my > > grandparents 2 wks ago. I lost them within 4 days of > > each other, and then was not able to go to the funerals > > because of work. But my symptoms were worsening before > > that. > > > > I saw a rheumy here in Seattle today, and he agreed with > > me that I'm having a flare of lupus (so I guess it isn't > > completely gone), fibromyalgia, and Sjogren's. As much > > as I didn't want to, I agreed to restart some meds that > > were very helpful in the spring. I restarted > > methotrexate, evoxac, and got a rx for vicodin. In > > addition, I asked him about Vit B12 injections, and > > whether he used them, believed in them, and would he be > > willing to try it out on me. If you all remember, my > > rheumy in Denver felt that B12 injections were not > > necessary and caused people to have the placebo effect. > > This doc is just the opposite. He uses B12 injections, > > feels it works, and thinks I could benefit from it. So > > I got my first shot today. OUCH---they hurt!! At any > > rate, it is interesting to see different schools of > > thought, and how docs in different parts of the country > > view treatments. This rheumy in Seattle also knows my > > rheumy in Denver, and has a great deal of respect for > > him. However, they differ greatly in their opinions. > > > > Anyway, he drew a bunch of labs, and hopefully I will > > get the results by the end of the wk. I will be curious > > to see if my ANA titer has gone up. I also had him > > check my thyroid, as I feel I might be hypothyroid. > > > > Now, my question to everyone who takes B12 injections is > > how do you give it to yourself, or how does your doc > > give them to you? And how often do you get them? I > > told him that I would inject myself, thinking that they > > were SQ injections, but I got it IM today, and the > > pharmacist said that it should be given IM. My drug > > book says it can be given either way. I don't know if I > > can give myself an IM shot!! So, how does everyone do > > it? And he told me to give myself an injection every > > month. I thought that it was more frequent. So, any > > and all info would be greatly appreciated. > > > > e > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2001 Report Share Posted September 19, 2001 e, I have my husband or my teenage son give me the shot. I use 3 ml 25g 5/8 inch syringes, in my arm subcutaneously. The first B12 shot I ever got at the doctors office was in the arm. My vial of B12 says it can be given either subQ or intramuscularly. However the other vial that I got in Mexico was IM only, and for those, I used 3 ml 25G one and a half inch needles. Only my hubby gave me those shots, in the butt. I could never get up the nerve to give myself a shot. The nurse at the doctors office told me she could never give herself the shot, either. My sister (an RN) taught me how to give shots, but I just let her do it when I lived close to her. Now I don't. I have taken them as often as every other day. Now I am doing it only once or twice a week. I noticed a positive benefit immediately. Patty ----- Original Message ----- From: <eRene@...> Subject: Relapse > Now, my question to everyone who takes B12 injections is > how do you give it to yourself, or how does your doc > give them to you? And how often do you get them? > So, how does everyone do > it? And he told me to give myself an injection every > month. I thought that it was more frequent. So, any > and all info would be greatly appreciated. > > e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2001 Report Share Posted September 20, 2001 Patty, When I got the rx filled, I requested the same needles you have--the 25G 5/8 needle. I will just use them for the IM shots, as you can use those needles if you don't have a lot of skin and can get right into the muscle. However, I am not going to give myself an IM shot. I am such a big baby when it comes to needles. I just about pass out when someone draws my blood, so I can't even imagine giving myself a shot. I am going to call my rheumy's office tomorrow and see if I can give myself an injection 3x/wk. 1x/month just didn't seem right. Thanks for the info. e > e, > I have my husband or my teenage son give me the shot. I use 3 ml 25g 5/8 > inch syringes, in my arm subcutaneously. > > The first B12 shot I ever got at the doctors office was in the arm. > > My vial of B12 says it can be given either subQ or intramuscularly. However > the other vial that I got in Mexico was IM only, and for those, I used 3 ml > 25G one and a half inch needles. Only my hubby gave me those shots, in the > butt. > > I could never get up the nerve to give myself a shot. The nurse at the > doctors office told me she could never give herself the shot, either. My > sister (an RN) taught me how to give shots, but I just let her do it when I > lived close to her. Now I don't. > > I have taken them as often as every other day. Now I am doing it only once > or twice a week. I noticed a positive benefit immediately. > Patty > ----- Original Message ----- > From: <eRene@...> > Subject: Relapse > > > > Now, my question to everyone who takes B12 injections is > > how do you give it to yourself, or how does your doc > > give them to you? And how often do you get them? > > So, how does everyone do > > it? And he told me to give myself an injection every > > month. I thought that it was more frequent. So, any > > and all info would be greatly appreciated. > > > > e > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 I did not realized I had relapsed when it happened after being on gleevec for 9 years. My platelets were extremely high which led to more tests including pcr and bone marrow biopsy which confirmed I relapsed. However I was suffering with diarrhea, bloating, gas and acid reflux in the weeks before confirmation. It was more than I had just with my usual gleevec dosage. Sent from my iPhone On Jan 24, 2011, at 9:41 AM, Jo-Dee McKibben <flyjod2007@...> wrote: > No tests. Just these symptoms. > > " The way I live my life, helps my neighbor paint his picture of God " > > ________________________________ > From: Mr Stickel <stick924@...> > > Sent: Mon, January 24, 2011 9:28:48 AM > Subject: Re: [ ] Relapse > > Joanne > > Have you had a series of tests that indicate you have relapsed? I would suggest > you make a call to your Dr to see if she/he feels you should do so. There are > many things that woudl cause you to have the symptoms you described. > > > > From: Jo-Dee McKibben <flyjod2007@...> > Subject: [ ] Relapse > > Date: Monday, January 24, 2011, 9:21 AM > > Good Morning All! > > I have a question for anyone who was on Gleevec at one time and was doing well > and then relapsed. > > Did you have any symtoms? What were they. I remember right before I was > diagnosed getting cold sweats and weakness. > > I am just recovering from the flu so these could be related to that!! > > Any info is greatly appreciated!! > > Thanks and blessings, > > Jo-Dee > > " The way I live my life, helps my neighbor paint his picture of God " > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 and now which medicine are you taking? tasigna? I think my mother is relapsing too, she had been pcru for 6 years on gleevec and now she is pcr 0.216 I´m really worried, she was taking nexium to protect her stomach, and maybe that makes gleevec levels lower? as I said, I´m really worried From: Beverly Blair Sent: Tuesday, January 25, 2011 12:50 AM Cc: Subject: Re: [ ] Relapse I did not realized I had relapsed when it happened after being on gleevec for 9 years. My platelets were extremely high which led to more tests including pcr and bone marrow biopsy which confirmed I relapsed. However I was suffering with diarrhea, bloating, gas and acid reflux in the weeks before confirmation. It was more than I had just with my usual gleevec dosage. Sent from my iPhone On Jan 24, 2011, at 9:41 AM, Jo-Dee McKibben <mailto:flyjod2007%40> wrote: > No tests. Just these symptoms. > > " The way I live my life, helps my neighbor paint his picture of God " > > ________________________________ > From: Mr Stickel <mailto:stick924%40> > mailto:%40 > Sent: Mon, January 24, 2011 9:28:48 AM > Subject: Re: [ ] Relapse > > Joanne > > Have you had a series of tests that indicate you have relapsed? I would suggest > you make a call to your Dr to see if she/he feels you should do so. There are > many things that woudl cause you to have the symptoms you described. > > > > From: Jo-Dee McKibben <mailto:flyjod2007%40> > Subject: [ ] Relapse > mailto:%40 > Date: Monday, January 24, 2011, 9:21 AM > > Good Morning All! > > I have a question for anyone who was on Gleevec at one time and was doing well > and then relapsed. > > Did you have any symtoms? What were they. I remember right before I was > diagnosed getting cold sweats and weakness. > > I am just recovering from the flu so these could be related to that!! > > Any info is greatly appreciated!! > > Thanks and blessings, > > Jo-Dee > > " The way I live my life, helps my neighbor paint his picture of God " > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 > > and now which medicine are you taking? tasigna? I think my mother is relapsing too, she had been pcru for 6 years on gleevec and > now she is pcr 0.216 > I´m really worried, > she was taking nexium to protect her stomach, and maybe that makes gleevec levels lower? > as I said, I´m really worried __________________________________________________ Hi Ana, Your mother needs to get off the Nexium....it is a proton pump inhibitor and it is interferring with her cml drug. This has been determined now. You need to see what happens over the course of a few pcr tests, they could be done sooner, even once a month.....to determine if she is really relapsing on this drug. And then, or even now, she should have a mutation test done to see if she has developed a mutation that is making the drug not work. Acid in the stomach is normal, you need it for digestion and also the cml drugs need acid for absorption. If she has acid reflux, look at changing diet and avoiding some really acid foods (esp. soda and sugar. Even diet soda, it is the carbonation). C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Sprycel. Sent from my iPhone On Jan 25, 2011, at 1:49 PM, " hey00nanc " <ncogan@...> wrote: > > > > > > > and now which medicine are you taking? tasigna? I think my mother is relapsing too, she had been pcru for 6 years on gleevec and > > now she is pcr 0.216 > > I´m really worried, > > she was taking nexium to protect her stomach, and maybe that makes gleevec levels lower? > > as I said, I´m really worried > __________________________________________________ > > Hi Ana, > Your mother needs to get off the Nexium....it is a proton pump inhibitor and it is interferring with her cml drug. This has been determined now. > > You need to see what happens over the course of a few pcr tests, they could be done sooner, even once a month.....to determine if she is really relapsing on this drug. And then, or even now, she should have a mutation test done to see if she has developed a mutation that is making the drug not work. > > Acid in the stomach is normal, you need it for digestion and also the cml drugs need acid for absorption. If she has acid reflux, look at changing diet and avoiding some really acid foods (esp. soda and sugar. Even diet soda, it is the carbonation). > > C. > > Quote Link to comment Share on other sites More sharing options...
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