Question:
Hi Teresa, I just wanted to add that I know someone who has the same problem as us. She is stable on Plaquinil alone. I am just pointing out that we are all different. What works for one, does not necessarily work for another. BJ "Teresa" <tnowo…@snet.net> wrote in message
news:3C4236EE.8926AF4B@snet.net… – Hide quoted text — Show quoted text -> Hi, I just found this newsgroup today and was hoping someone might have > some experience with what I’m currently dealing with. > I’ve had what I considered a mild case of Lupus for 21 years now. Any > flares were dealt with by either going back on prednisone or taking more > plaquenil. > On New Years Eve, I was hospitalized with a platelet (sp) count of less > than 1000 and told I now also have Thrombocytopenia (ITP) – I was given > platelets and gamma globulin. This was followed up with 3 days of high > doses of salumedrol (sp). By Thursday my count had risen to 100,000 and > they canceled a tentative bone marrow test and let me go home, taking 60 > mgs. of prednisone a day and 200 mg plaquenil. > I had a follow up appt. with the hematologist this past Thursday, > feeling well and expecting at least to have maintained that number but > was told my count had dropped to > 45,000. My prednisone was increased at that time to 80 mgs and the > plaquenil was stopped. I’m experiencing a numb feeling in my hands and > feet. Plus my ankles and legs are swelling and I’m getting these sudden > electric like sensations in my legs. > Now I am schedule for the bone marrow test for this coming Wednesday. > They are putting all these things out there, a splenectomy, > Cytoxan,Imuran and something called IVIG. I was once on Imuran when I > was initially diagnosed and had a awful experience with it and the quack > Dr. I had at the time. I was young and just doing as told, so I have no > idea why it was used at the time. The Dr’s I currently have I have > faith in, especially my Rhuematologist. > Has anyone had any experience with this that they can pass on to me? > Thank you. > Teresa
Response:
Hi Teresa, Linda my DW went through most of this 20 some years ago. Will confirm what BJ says except that she didn’t have the IVIG. Linda also lost most of her hair but we attribute that more to the lupus than the meds. Not much else to add beyond what BJ says. Courage, and keep the group posted on your results. Welcome to ASL. Sorry you need to be here. Timothy "BJ" <B…@sk.nojunk.ca> wrote in news:JAt08.1453$iOo3.48103543@tomcat.sk.sympatico.ca: – Hide quoted text — Show quoted text -> Hi Teresa, > I am glad that I can be of some help. There are not a lot of people > who have this problem. I can only think of three others here. IVIG > is intervenous immunoglobulin. It is gathered from whole blood > donors and it takes a lot of different donors to make one bag which > I believe is 30g. It is started slowly at first and you are watched > closely for any reaction. The drip is increased when considered > safe to do so. I spent three full days at the hospital. I think > that is correct as best I can recall. I lost most of my hair, but > it was from the lupus, not the meds. I also suffered severe weight > loss, but again, from the lupus. I can see why you would be > reluctant to take Imuran. I take Pantaloc to protect my stomach. > High pred doses leave you open to a lot of side effects too. > Perhaps a combo of the two would work for you, or Plaquinil and > pred. I know how you feel about the bone marrow. I have had more > than one. I am not going to try to kid you by saying that there is > nothing to it. It is painful. The pain is very brief though. It > comes at the moment the doctor does the aspiration. It is over > immediately after that. Short, so not that bad. I am about to sign > off for the night, but I usually look at things in the morning. If > you have any more questions, please ask. Some others may yet reply > too. We all take turns just whining and complaining around here > too. Feel free. We will listen. BJ > "Teresa" <tnowo…@snet.net> wrote in message > news:3C425D7C.72D799AF@snet.net… >> BJ, >> Thank you for the quick response. From what I can remember when I >> was taking the Imuran, this was 21 years ago, I was constantly >> vomiting, went down to 85 lbs, was bleeding from the mouth, losing >> my hair. I generally was feeling really,really horrible. Then I >> went for a 2nd opinion and was taken off of it and put on >> prednisone, I think it was 40 mgs. Which was the highest I was >> ever on until now, which is 80. >> Can you tell me what IVIG is? I’m really am scared to death of >> this bone marrow test that I’m having Wednesday. I still can’t >> wrap my mind around that for 21 yrs. I’ve been really lucky and >> now I’ve got this new thing. I guess I lulled myself into a false >> sense of security. >> I’m glad I was able to find a place where people understand. >> BJ wrote: >> > Hi Teresa, >> > Welcome. You have found the right place. There are a few people >> > here who have immune thrombocytopenia as part of their lupus. I >> > am one of them. They will have to do the bone marrow to >> > determine whether it is idiopathic(unknown cause) or immune ( >> > autoimmune platelet distruction). My platelet count dropped to >> > 6. I was put on 60mgs pred, IVIG, and pulse therapy. Once the >> > level was stable, I started on 150mgs Imuran and am on low dose >> > pred. Splenectomy is not usual recommended for immune >> > thrombocytopenia. I don’t think the sensations you descibed in >> > your hands and feet would be caused by the platelet problem. >> > Another blood problem, pernicious anemia could do that. I have >> > that too. It could also be something else related to your lupus. >> > What problem did you have with Imuran? I started it in the hopes >> > of avoiding chemo. It took time, but it has worked for me and I >> > am able to be on a low dose of pred. I am glad that you have a >> > rheumy you feel good about. He/she will guide you through. My >> > hematologist and my neurologist were my anchors. Feel free >> > to ask me more if you think I can be of help. Let us know how it >> > goes with your marrow on Wednesday. Regards, >> > BJ >> > "Teresa" <tnowo…@snet.net> wrote in message >> > news:3C4236EE.8926AF4B@snet.net… >> > > Hi, I just found this newsgroup today and was hoping someone >> > > might have some experience with what I’m currently dealing >> > > with. >> > > I’ve had what I considered a mild case of Lupus for 21 years >> > > now. Any flares were dealt with by either going back on >> > > prednisone or taking more plaquenil. >> > > On New Years Eve, I was hospitalized with a platelet (sp) >> > > count of less than 1000 and told I now also have >> > > Thrombocytopenia (ITP) – I was given platelets and gamma >> > > globulin. This was followed up with 3 days of high doses of >> > > salumedrol (sp). By Thursday my count had risen to 100,000 >> > > and they canceled a tentative bone marrow test and let me go >> > > home, taking 60 mgs. of prednisone a day and 200 mg plaquenil. >> > > I had a follow up appt. with the hematologist this past >> > > Thursday, feeling well and expecting at least to have >> > > maintained that number but was told my count had dropped to >> > > 45,000. My prednisone was increased at that time to 80 mgs >> > > and the plaquenil was stopped. I’m experiencing a numb >> > > feeling in my hands and feet. Plus my ankles and legs are >> > > swelling and I’m getting these sudden electric like sensations >> > > in my legs. >> > > Now I am schedule for the bone marrow test for this coming >> > > Wednesday. They are putting all these things out there, a >> > > splenectomy, Cytoxan,Imuran and something called IVIG. I was >> > > once on Imuran when I was initially diagnosed and had a awful >> > > experience with it and the quack Dr. I had at the time. I was >> > > young and just doing as told, so I have no idea why it was >> > > used at the time. The Dr’s I currently have I have faith in, >> > > especially my Rhuematologist. >> > > Has anyone had any experience with this that they can pass on >> > > to me? >> > > Thank you. >> > > Teresa
– Most of the worlds great discoveries are made with a cry, not of "Eureka!" but "That’s funny".
Response:
Hi Teresa, I am glad that I can be of some help. There are not a lot of people who have this problem. I can only think of three others here. IVIG is intervenous immunoglobulin. It is gathered from whole blood donors and it takes a lot of different donors to make one bag which I believe is 30g. It is started slowly at first and you are watched closely for any reaction. The drip is increased when considered safe to do so. I spent three full days at the hospital. I think that is correct as best I can recall. I lost most of my hair, but it was from the lupus, not the meds. I also suffered severe weight loss, but again, from the lupus. I can see why you would be reluctant to take Imuran. I take Pantaloc to protect my stomach. High pred doses leave you open to a lot of side effects too. Perhaps a combo of the two would work for you, or Plaquinil and pred. I know how you feel about the bone marrow. I have had more than one. I am not going to try to kid you by saying that there is nothing to it. It is painful. The pain is very brief though. It comes at the moment the doctor does the aspiration. It is over immediately after that. Short, so not that bad. I am about to sign off for the night, but I usually look at things in the morning. If you have any more questions, please ask. Some others may yet reply too. We all take turns just whining and complaining around here too. Feel free. We will listen. BJ "Teresa" <tnowo…@snet.net> wrote in message
news:3C425D7C.72D799AF@snet.net… – Hide quoted text — Show quoted text -> BJ, > Thank you for the quick response. From what I can remember when I was taking > the Imuran, this was 21 years ago, I was constantly vomiting, went down to 85 > lbs, was bleeding from the mouth, losing my hair. I generally was feeling > really,really horrible. Then I went for a 2nd opinion and was taken off of it > and put on prednisone, I think it was 40 mgs. Which was the highest I was ever > on until now, which is 80. > Can you tell me what IVIG is? I’m really am scared to death of this bone marrow > test that I’m having Wednesday. I still can’t wrap my mind around that for 21 > yrs. I’ve been really lucky and now I’ve got this new thing. I guess I lulled > myself into a false sense of security. > I’m glad I was able to find a place where people understand. > BJ wrote: > > Hi Teresa, > > Welcome. You have found the right place. There are a few people here who > > have immune thrombocytopenia as part of their lupus. I am one of them. They > > will have to do the bone marrow to determine whether it is > > idiopathic(unknown cause) or immune ( autoimmune platelet distruction). My > > platelet count dropped to 6. I was put on 60mgs pred, IVIG, and pulse > > therapy. Once the level was stable, I started on 150mgs Imuran and am on low > > dose pred. Splenectomy is not usual recommended for immune thrombocytopenia. > > I don’t think the sensations you descibed in your hands and feet would be > > caused by the platelet problem. Another blood problem, pernicious anemia > > could do that. I have that too. It could also be something else related to > > your lupus. What problem did you have with Imuran? I started it in the hopes > > of avoiding chemo. It took time, but it has worked for me and I am able to > > be on a low dose of pred. I am glad that you have a rheumy you feel good > > about. He/she will guide you through. My hematologist and my neurologist > > were my anchors. Feel free to ask me more if you think I can be of help. Let > > us know how it goes with your marrow on Wednesday. > > Regards, > > BJ > > "Teresa" <tnowo…@snet.net> wrote in message > > news:3C4236EE.8926AF4B@snet.net… > > > Hi, I just found this newsgroup today and was hoping someone might have > > > some experience with what I’m currently dealing with. > > > I’ve had what I considered a mild case of Lupus for 21 years now. Any > > > flares were dealt with by either going back on prednisone or taking more > > > plaquenil. > > > On New Years Eve, I was hospitalized with a platelet (sp) count of less > > > than 1000 and told I now also have Thrombocytopenia (ITP) – I was given > > > platelets and gamma globulin. This was followed up with 3 days of high > > > doses of salumedrol (sp). By Thursday my count had risen to 100,000 and > > > they canceled a tentative bone marrow test and let me go home, taking 60 > > > mgs. of prednisone a day and 200 mg plaquenil. > > > I had a follow up appt. with the hematologist this past Thursday, > > > feeling well and expecting at least to have maintained that number but > > > was told my count had dropped to > > > 45,000. My prednisone was increased at that time to 80 mgs and the > > > plaquenil was stopped. I’m experiencing a numb feeling in my hands and > > > feet. Plus my ankles and legs are swelling and I’m getting these sudden > > > electric like sensations in my legs. > > > Now I am schedule for the bone marrow test for this coming Wednesday. > > > They are putting all these things out there, a splenectomy, > > > Cytoxan,Imuran and something called IVIG. I was once on Imuran when I > > > was initially diagnosed and had a awful experience with it and the quack > > > Dr. I had at the time. I was young and just doing as told, so I have no > > > idea why it was used at the time. The Dr’s I currently have I have > > > faith in, especially my Rhuematologist. > > > Has anyone had any experience with this that they can pass on to me? > > > Thank you. > > > Teresa
Response:
BJ, Thank you for the quick response. From what I can remember when I was taking the Imuran, this was 21 years ago, I was constantly vomiting, went down to 85 lbs, was bleeding from the mouth, losing my hair. I generally was feeling really,really horrible. Then I went for a 2nd opinion and was taken off of it and put on prednisone, I think it was 40 mgs. Which was the highest I was ever on until now, which is 80. Can you tell me what IVIG is? I’m really am scared to death of this bone marrow test that I’m having Wednesday. I still can’t wrap my mind around that for 21 yrs. I’ve been really lucky and now I’ve got this new thing. I guess I lulled myself into a false sense of security. I’m glad I was able to find a place where people understand. – Hide quoted text — Show quoted text -BJ wrote: > Hi Teresa, > Welcome. You have found the right place. There are a few people here who > have immune thrombocytopenia as part of their lupus. I am one of them. They > will have to do the bone marrow to determine whether it is > idiopathic(unknown cause) or immune ( autoimmune platelet distruction). My > platelet count dropped to 6. I was put on 60mgs pred, IVIG, and pulse > therapy. Once the level was stable, I started on 150mgs Imuran and am on low > dose pred. Splenectomy is not usual recommended for immune thrombocytopenia. > I don’t think the sensations you descibed in your hands and feet would be > caused by the platelet problem. Another blood problem, pernicious anemia > could do that. I have that too. It could also be something else related to > your lupus. What problem did you have with Imuran? I started it in the hopes > of avoiding chemo. It took time, but it has worked for me and I am able to > be on a low dose of pred. I am glad that you have a rheumy you feel good > about. He/she will guide you through. My hematologist and my neurologist > were my anchors. Feel free to ask me more if you think I can be of help. Let > us know how it goes with your marrow on Wednesday. > Regards, > BJ > "Teresa" <tnowo…@snet.net> wrote in message > news:3C4236EE.8926AF4B@snet.net… > > Hi, I just found this newsgroup today and was hoping someone might have > > some experience with what I’m currently dealing with. > > I’ve had what I considered a mild case of Lupus for 21 years now. Any > > flares were dealt with by either going back on prednisone or taking more > > plaquenil. > > On New Years Eve, I was hospitalized with a platelet (sp) count of less > > than 1000 and told I now also have Thrombocytopenia (ITP) – I was given > > platelets and gamma globulin. This was followed up with 3 days of high > > doses of salumedrol (sp). By Thursday my count had risen to 100,000 and > > they canceled a tentative bone marrow test and let me go home, taking 60 > > mgs. of prednisone a day and 200 mg plaquenil. > > I had a follow up appt. with the hematologist this past Thursday, > > feeling well and expecting at least to have maintained that number but > > was told my count had dropped to > > 45,000. My prednisone was increased at that time to 80 mgs and the > > plaquenil was stopped. I’m experiencing a numb feeling in my hands and > > feet. Plus my ankles and legs are swelling and I’m getting these sudden > > electric like sensations in my legs. > > Now I am schedule for the bone marrow test for this coming Wednesday. > > They are putting all these things out there, a splenectomy, > > Cytoxan,Imuran and something called IVIG. I was once on Imuran when I > > was initially diagnosed and had a awful experience with it and the quack > > Dr. I had at the time. I was young and just doing as told, so I have no > > idea why it was used at the time. The Dr’s I currently have I have > > faith in, especially my Rhuematologist. > > Has anyone had any experience with this that they can pass on to me? > > Thank you. > > Teresa
Response:
Hi Teresa, Welcome. You have found the right place. There are a few people here who have immune thrombocytopenia as part of their lupus. I am one of them. They will have to do the bone marrow to determine whether it is idiopathic(unknown cause) or immune ( autoimmune platelet distruction). My platelet count dropped to 6. I was put on 60mgs pred, IVIG, and pulse therapy. Once the level was stable, I started on 150mgs Imuran and am on low dose pred. Splenectomy is not usual recommended for immune thrombocytopenia. I don’t think the sensations you descibed in your hands and feet would be caused by the platelet problem. Another blood problem, pernicious anemia could do that. I have that too. It could also be something else related to your lupus. What problem did you have with Imuran? I started it in the hopes of avoiding chemo. It took time, but it has worked for me and I am able to be on a low dose of pred. I am glad that you have a rheumy you feel good about. He/she will guide you through. My hematologist and my neurologist were my anchors. Feel free to ask me more if you think I can be of help. Let us know how it goes with your marrow on Wednesday. Regards, BJ "Teresa" <tnowo…@snet.net> wrote in message
news:3C4236EE.8926AF4B@snet.net… – Hide quoted text — Show quoted text -> Hi, I just found this newsgroup today and was hoping someone might have > some experience with what I’m currently dealing with. > I’ve had what I considered a mild case of Lupus for 21 years now. Any > flares were dealt with by either going back on prednisone or taking more > plaquenil. > On New Years Eve, I was hospitalized with a platelet (sp) count of less > than 1000 and told I now also have Thrombocytopenia (ITP) – I was given > platelets and gamma globulin. This was followed up with 3 days of high > doses of salumedrol (sp). By Thursday my count had risen to 100,000 and > they canceled a tentative bone marrow test and let me go home, taking 60 > mgs. of prednisone a day and 200 mg plaquenil. > I had a follow up appt. with the hematologist this past Thursday, > feeling well and expecting at least to have maintained that number but > was told my count had dropped to > 45,000. My prednisone was increased at that time to 80 mgs and the > plaquenil was stopped. I’m experiencing a numb feeling in my hands and > feet. Plus my ankles and legs are swelling and I’m getting these sudden > electric like sensations in my legs. > Now I am schedule for the bone marrow test for this coming Wednesday. > They are putting all these things out there, a splenectomy, > Cytoxan,Imuran and something called IVIG. I was once on Imuran when I > was initially diagnosed and had a awful experience with it and the quack > Dr. I had at the time. I was young and just doing as told, so I have no > idea why it was used at the time. The Dr’s I currently have I have > faith in, especially my Rhuematologist. > Has anyone had any experience with this that they can pass on to me? > Thank you. > Teresa
Response:
Hi, I just found this newsgroup today and was hoping someone might have some experience with what I’m currently dealing with. I’ve had what I considered a mild case of Lupus for 21 years now. Any flares were dealt with by either going back on prednisone or taking more plaquenil. On New Years Eve, I was hospitalized with a platelet (sp) count of less than 1000 and told I now also have Thrombocytopenia (ITP) – I was given platelets and gamma globulin. This was followed up with 3 days of high doses of salumedrol (sp). By Thursday my count had risen to 100,000 and they canceled a tentative bone marrow test and let me go home, taking 60 mgs. of prednisone a day and 200 mg plaquenil. I had a follow up appt. with the hematologist this past Thursday, feeling well and expecting at least to have maintained that number but was told my count had dropped to 45,000. My prednisone was increased at that time to 80 mgs and the plaquenil was stopped. I’m experiencing a numb feeling in my hands and feet. Plus my ankles and legs are swelling and I’m getting these sudden electric like sensations in my legs. Now I am schedule for the bone marrow test for this coming Wednesday. They are putting all these things out there, a splenectomy, Cytoxan,Imuran and something called IVIG. I was once on Imuran when I was initially diagnosed and had a awful experience with it and the quack Dr. I had at the time. I was young and just doing as told, so I have no idea why it was used at the time. The Dr’s I currently have I have faith in, especially my Rhuematologist. Has anyone had any experience with this that they can pass on to me? Thank you. Teresa
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