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I want to stop using Prednisone
Hello again !
I guess Im very active on this forum at the moment, I think its because I feel a bit helpless and no one else to talk to.
I have bin on the Prednisone for two weeks now, and I can stop now after two weeks or then I have to take them on lower doses for 4 months. I really dont want to take them anymore but I feel the doc if pressing me to take them. If not I have to go with the pains in my breast ... The breast is hurting more now after the two weeks and I really dont see the point of taking them anymore because of the sideaffects. Is that selfish of me?
Hope anyone can relply.
Lill
I guess Im very active on this forum at the moment, I think its because I feel a bit helpless and no one else to talk to.
I have bin on the Prednisone for two weeks now, and I can stop now after two weeks or then I have to take them on lower doses for 4 months. I really dont want to take them anymore but I feel the doc if pressing me to take them. If not I have to go with the pains in my breast ... The breast is hurting more now after the two weeks and I really dont see the point of taking them anymore because of the sideaffects. Is that selfish of me?
Hope anyone can relply.
Lill
I'm glad to know your GM is a little better. Keep us updated. Maybe you will get more information in the capital.
Im agree also after the GM has relaxed a bit for some days, its just that its so painfull when it was so active.
I have bin feeling a bit better and im going to the capital for a second opinion. Its better for me to have "someting" to do, than get the answer : we cant do anything for you, you just have to wait and see if it relaxes" My doc has motivated me a bit more. For some weeks ago I didnt have any motivations at all ..
When things looks black its not easy to think positive.
I have bin feeling a bit better and im going to the capital for a second opinion. Its better for me to have "someting" to do, than get the answer : we cant do anything for you, you just have to wait and see if it relaxes" My doc has motivated me a bit more. For some weeks ago I didnt have any motivations at all ..
When things looks black its not easy to think positive.
I totally agree with Miram's philosphy of buying time and trying every possible treatment before mastectomy.
Lill,
In my experience with this disease, everything takes TIME. It takes time for the abscesses to form and open up. It takes time for the inflammation. And then it takes lots and lots of time to get better. I know the pain is terrible and you probably feel like you are living through a nightmare. But I would suggest that you wait much, much longer than May to have your doctors consider removing the breast. You are in the beginning stages, which are the worst (I think!). It DOES get better with time....or at least it should. I would consider trying everything possible before getting your breast removed. And I mean everything- consullt with alternative medicine practitioners, take lots of herbal supplements that they recommend (but it does take time for them to work!!!), eat a non-inflammatory diet...or you can try the medicine route- prednisone and/or methotrexate. I personally would rather try high doses of prednisone for a period of time, than have my breast removed. But it is your decision.
Miriam
In my experience with this disease, everything takes TIME. It takes time for the abscesses to form and open up. It takes time for the inflammation. And then it takes lots and lots of time to get better. I know the pain is terrible and you probably feel like you are living through a nightmare. But I would suggest that you wait much, much longer than May to have your doctors consider removing the breast. You are in the beginning stages, which are the worst (I think!). It DOES get better with time....or at least it should. I would consider trying everything possible before getting your breast removed. And I mean everything- consullt with alternative medicine practitioners, take lots of herbal supplements that they recommend (but it does take time for them to work!!!), eat a non-inflammatory diet...or you can try the medicine route- prednisone and/or methotrexate. I personally would rather try high doses of prednisone for a period of time, than have my breast removed. But it is your decision.
Miriam
Hi Jojo
I dont think my case is any worse than the others, but I guess its very active at the moment and praying everyday that it will burn out and be settled. Going back to hospital on friday.. then Im taking my husband with me so he can get some information. I think its very difficult for the ppl near me to understand GM. It looks so bad and its frustrating that they cant do anything about it. I was very clear today to my doc that I woundt take any more sterioids. I guess its selfish of me but I cant help it. I gain so mutch weigth when I was pregnant with my last kid and I finaly after so mutch hard work lost almost 40 kg. Now I cant work out when I have GM and I am very afraid of the side affects. Anyway, my doc have only treated one persone with GM so she does not push me to take steriods. I think she feels a bit helpless she also..
I am very glad that u are so inspired to find out more about GM jojo. U must be a good hearted persone who wants to help others as mutch as u do , sending out questions to doc, emailing and starting this greate group for us with GM. It inspires me to keep looking for an alternativ treatment and not giving up.
I just sendt WLD and message, its good to know that we are not alone.
Have a good evening.
Lill
I dont think my case is any worse than the others, but I guess its very active at the moment and praying everyday that it will burn out and be settled. Going back to hospital on friday.. then Im taking my husband with me so he can get some information. I think its very difficult for the ppl near me to understand GM. It looks so bad and its frustrating that they cant do anything about it. I was very clear today to my doc that I woundt take any more sterioids. I guess its selfish of me but I cant help it. I gain so mutch weigth when I was pregnant with my last kid and I finaly after so mutch hard work lost almost 40 kg. Now I cant work out when I have GM and I am very afraid of the side affects. Anyway, my doc have only treated one persone with GM so she does not push me to take steriods. I think she feels a bit helpless she also..
I am very glad that u are so inspired to find out more about GM jojo. U must be a good hearted persone who wants to help others as mutch as u do , sending out questions to doc, emailing and starting this greate group for us with GM. It inspires me to keep looking for an alternativ treatment and not giving up.
I just sendt WLD and message, its good to know that we are not alone.
Have a good evening.
Lill
I am glad you will be getting someone to look after you that has had some experience.
My breast did open up and it would then drain through this opening or channel (they call them sinuses too) - it is pretty normal in IGM or GM, I am afraid. Your case sounds quite serious and I am sorry for that. In my experience, once my breast started to drain, pressure was relieved and things were somewhat less painful.
I really hope you don't lose the breast.
My breast is settled right now, however I have spinal inflammation as well which is giving me trouble and I just had spinal biopsy last week and am waiting for results.
We have had another member just join - 'WLD', so hopefully together we can support one another. Her case is very active right now like yours...
My breast did open up and it would then drain through this opening or channel (they call them sinuses too) - it is pretty normal in IGM or GM, I am afraid. Your case sounds quite serious and I am sorry for that. In my experience, once my breast started to drain, pressure was relieved and things were somewhat less painful.
I really hope you don't lose the breast.
My breast is settled right now, however I have spinal inflammation as well which is giving me trouble and I just had spinal biopsy last week and am waiting for results.
We have had another member just join - 'WLD', so hopefully together we can support one another. Her case is very active right now like yours...
Hello :-)
I went back to the hospital today, my doc thinks that the breastmass is getting a bit smaller, but it looks worse cause it looks red and the breast got several openings.
They are getting a other doc next week to my hometown who has treated GM with steriods, he would be my doc for some weeks when my doc goes away for some weeks. We agreed today that we should give it a bit time ( til may month) and then see if it gets any better , if not they migth listen to me and take the breast of. ( it sounds very awfull, but I dont want to live with this pains anymore) I understand that Im still young and I should have my breast for as long as I can...
How are u doing jojo? are u doing fine? I think its amazing of u to do all this resarch . U are a very good person.
I wish the best for all of us. Sending good thougths.
I went back to the hospital today, my doc thinks that the breastmass is getting a bit smaller, but it looks worse cause it looks red and the breast got several openings.
They are getting a other doc next week to my hometown who has treated GM with steriods, he would be my doc for some weeks when my doc goes away for some weeks. We agreed today that we should give it a bit time ( til may month) and then see if it gets any better , if not they migth listen to me and take the breast of. ( it sounds very awfull, but I dont want to live with this pains anymore) I understand that Im still young and I should have my breast for as long as I can...
How are u doing jojo? are u doing fine? I think its amazing of u to do all this resarch . U are a very good person.
I wish the best for all of us. Sending good thougths.
Hear Lill -
I have just had another email from another woman in the same position as you.
My heart goes out to you - you should not have to go through this.
I am going to start campaigning doctors to see if we can't get some sort of network going.
Not acceptable that women are being told 'we don't know what to do' -
Sending good thoughts your way and keeping you in my heart.
Jo
I have just had another email from another woman in the same position as you.
My heart goes out to you - you should not have to go through this.
I am going to start campaigning doctors to see if we can't get some sort of network going.
Not acceptable that women are being told 'we don't know what to do' -
Sending good thoughts your way and keeping you in my heart.
Jo
Thanks !
Im going back to the hospiital today. I will try and push them. The breast is opening now, and its very painfull, I can see rigth into the flesh. Did u have the same problem?
My mum called the hospital today and pushed on them... It sure dossent look any good.
Lill :-)
Im going back to the hospiital today. I will try and push them. The breast is opening now, and its very painfull, I can see rigth into the flesh. Did u have the same problem?
My mum called the hospital today and pushed on them... It sure dossent look any good.
Lill :-)
http://surgpathcriteria.stanford.edu/breast/granmastitis/printable.html
Hi Lill - why don't you have the hospital review this article from Stanford and contact the doctors there for advice on your treatment.
Surely, they owe you that much. - it is not ok to just tell a patient we don't know what to do - they need to start networking...
Be pushy - I know it is hard when you feel awful - Jo
Hi Lill - why don't you have the hospital review this article from Stanford and contact the doctors there for advice on your treatment.
Surely, they owe you that much. - it is not ok to just tell a patient we don't know what to do - they need to start networking...
Be pushy - I know it is hard when you feel awful - Jo
Hi Lill -
Miriam is right - we know the pain is so awful, you want the breast off, but I also know in my case and in most others I have read about, it can get better, and I am happy I have my breast in the end. Please don't give up yet.
I am really angry to hear that no one is responsibly helping you. You need to have a high dose anti-inflammatory I believe, as Miriam suggests, that is usually frontline IGM treatment. I know you were on a regime, but how high did they go? It bothers me that your breast has not responded well. Do you have a definitive diagnosis? Have you had core biopsy performed?
I don't know what else to say, except you are not alone, there are others of us that have dealt with this, it is awful. But you will get through it.
I am going to go do some research now to give you some links - hopefully you can provide to the doctors and they might educate themselves.
Sending healing thoughts your way....Jo
Miriam is right - we know the pain is so awful, you want the breast off, but I also know in my case and in most others I have read about, it can get better, and I am happy I have my breast in the end. Please don't give up yet.
I am really angry to hear that no one is responsibly helping you. You need to have a high dose anti-inflammatory I believe, as Miriam suggests, that is usually frontline IGM treatment. I know you were on a regime, but how high did they go? It bothers me that your breast has not responded well. Do you have a definitive diagnosis? Have you had core biopsy performed?
I don't know what else to say, except you are not alone, there are others of us that have dealt with this, it is awful. But you will get through it.
I am going to go do some research now to give you some links - hopefully you can provide to the doctors and they might educate themselves.
Sending healing thoughts your way....Jo
Lill,
I think most of us who have gone through this horrible disease have had the urge to have a surgeon remove the whole breast. The doctor who treats me is actually a breast surgeon, and we had planned for her to remove the inflammed areas last September-October if I didn't get better. Luckily, she was very cautious and did not want to remove breast tissue unless absolutely necessary. Slowly I got better and now I still have my whole breast and I am so relieved that I didn't need extensive surgery. But I do know how you are feeling, I was in so much pain at times that I wanted to cut everything also. Is there any chance that a high dose of prednisone could at least take down some of the inflammation? Or could the doctors consider a drug like methotrexate?
I think most of us who have gone through this horrible disease have had the urge to have a surgeon remove the whole breast. The doctor who treats me is actually a breast surgeon, and we had planned for her to remove the inflammed areas last September-October if I didn't get better. Luckily, she was very cautious and did not want to remove breast tissue unless absolutely necessary. Slowly I got better and now I still have my whole breast and I am so relieved that I didn't need extensive surgery. But I do know how you are feeling, I was in so much pain at times that I wanted to cut everything also. Is there any chance that a high dose of prednisone could at least take down some of the inflammation? Or could the doctors consider a drug like methotrexate?
Hello again :-)
I have bin the hospital every day now, no one who can help me since the doc Im using is on a hollyday. Very frustrating. My breast is getting more and more red now, and its so hard. On the ultrasound its just hard tissue and they cant drain anything. I wish they could do something soon. They want me to be in the hospital for some days if it get worse..
Its so frustrating to get the answer : we dont know what to do. I really wish they could do some surgery. Now I wish they could take the hole breast off....
This is a very bad day for me. I cant belive this is happening to me.
How many painkillers and morfinpills do I have to take before they do something?
All the doc is shocked to see my breast but they dont know ANYTHING and my doc is the only one in Norway who know a bit about IGM but she is having here hollyday.
Can I say to the doc that I want them to try to operate on me?
Thanks for ur answer. It really helps with ur reply. It seems u know more about IGM than my doc..
I have bin the hospital every day now, no one who can help me since the doc Im using is on a hollyday. Very frustrating. My breast is getting more and more red now, and its so hard. On the ultrasound its just hard tissue and they cant drain anything. I wish they could do something soon. They want me to be in the hospital for some days if it get worse..
Its so frustrating to get the answer : we dont know what to do. I really wish they could do some surgery. Now I wish they could take the hole breast off....
This is a very bad day for me. I cant belive this is happening to me.
How many painkillers and morfinpills do I have to take before they do something?
All the doc is shocked to see my breast but they dont know ANYTHING and my doc is the only one in Norway who know a bit about IGM but she is having here hollyday.
Can I say to the doc that I want them to try to operate on me?
Thanks for ur answer. It really helps with ur reply. It seems u know more about IGM than my doc..
I have just emailed two doctors at Stanford that have published on this disease, and asked for their advice on how we can create a resource for the rheumatologists to access when they are having a patient with the disease for the first time.
Will let you know when I hear anything.
I may try others as well.
I don't think for legal reasons they will advise us direct, but maybe we can create a resource page for doctors when they are first treating someone,..sort of a network of doctors with experience with the disease and also a summary of published articles.
Jo
Will let you know when I hear anything.
I may try others as well.
I don't think for legal reasons they will advise us direct, but maybe we can create a resource page for doctors when they are first treating someone,..sort of a network of doctors with experience with the disease and also a summary of published articles.
Jo
Hello :-)
Im back in my hometown now, I felt better earlier today but after a while it didnt go so well..
Do u know any emailadresses for som doctors? I have tried to googel it but cant find anythings.
Thanks for ur good thougths.
Lill
Im back in my hometown now, I felt better earlier today but after a while it didnt go so well..
Do u know any emailadresses for som doctors? I have tried to googel it but cant find anythings.
Thanks for ur good thougths.
Lill
Hi Lill - you need to get your doctors to start researching and to start contacting other doctors who have published on the subject, as they obviously have some knowledge and contacts.
http://www.jrheum.org/content/36/7/1559.full
how about the doctor's listed in the above article...start emailing doctors who are publishing on the web about GM or IGM...they can talk to your doctor.
I am worried that you may need additional testing and diagnosis.
Be pushy and do not let yourself be shuflled about because no one knows what to do - I went through 3 rheumatologists before I found someone with an open mind and who would spend time researching the disease.
Praying for your healing, be ASSERTIVE. Jo
http://www.jrheum.org/content/36/7/1559.full
how about the doctor's listed in the above article...start emailing doctors who are publishing on the web about GM or IGM...they can talk to your doctor.
I am worried that you may need additional testing and diagnosis.
Be pushy and do not let yourself be shuflled about because no one knows what to do - I went through 3 rheumatologists before I found someone with an open mind and who would spend time researching the disease.
Praying for your healing, be ASSERTIVE. Jo
I went to one of the biggest hospital in Norway today, and they was very suprised to c my breast, they called all the hostpital in the capital and no one know what to do about it. Is there a hospital out there in the world who knows more about GM?
Hello :-)
Im on a easter-holliday so Im a bit late answering. Nice to get away a bit with the kids and my boyfriend, but the pain is a bit heavy at the moment so I feel a bit helpless.
I used to breastfeed my son til he was one year old, he i three now.
I stooped using the prednisone before this weekend, my doc said it was ok, but here only advice is now to take some time and c how it goes.. Going back to the hospital every week now and see if the breastmass will go down. .. Its growing at the moment so I dont feel like I have any motivation to go with this IGM for a year like my doc says I migth have to. My doc says that I should b lucky this is breast cancer but I dont feel any happy at the moment...
I wish I could get an second opinion about the breast...I dont know how I could get it.
They dont know what to do with me at the moment..
Thanks everybody for nice thougths . Its so nice to have here.
Im on a easter-holliday so Im a bit late answering. Nice to get away a bit with the kids and my boyfriend, but the pain is a bit heavy at the moment so I feel a bit helpless.
I used to breastfeed my son til he was one year old, he i three now.
I stooped using the prednisone before this weekend, my doc said it was ok, but here only advice is now to take some time and c how it goes.. Going back to the hospital every week now and see if the breastmass will go down. .. Its growing at the moment so I dont feel like I have any motivation to go with this IGM for a year like my doc says I migth have to. My doc says that I should b lucky this is breast cancer but I dont feel any happy at the moment...
I wish I could get an second opinion about the breast...I dont know how I could get it.
They dont know what to do with me at the moment..
Thanks everybody for nice thougths . Its so nice to have here.
Hi Lill:
I am worrried about you. Is there anyway you are able to receive a second opinion on your breast? I can imagine your pain with having your breast so active. I know that there are other treatments, eastern and western medicine for GM and Prednisone (corticosteroids) while once considered the best treatment are now being seen as limited success.
Are you breastfeeding or were you? I am one of the few with the disease that has never had a child or breastfed, but I do have autoimmune, inflammatory issues that are coming up in other areas of my body. For me prednisone did settle my breast down quite quickly, but I had to go off because it made my crazy. (very anxious, etc.)
How were you diagnosed with GM? what other testing has been done on your best, any culturing?
Hang in there, I really think you need to be very vigilant right now, keep pressing the doctors until they can tell you exactly what is going on, and ask them what your treatment plan is...what they have researched. Prednisone is not the only treatment. You may have to educate your doctor on this and lead your treatment, I did.
sending strength and good thoughts your way
Jo
I am worrried about you. Is there anyway you are able to receive a second opinion on your breast? I can imagine your pain with having your breast so active. I know that there are other treatments, eastern and western medicine for GM and Prednisone (corticosteroids) while once considered the best treatment are now being seen as limited success.
Are you breastfeeding or were you? I am one of the few with the disease that has never had a child or breastfed, but I do have autoimmune, inflammatory issues that are coming up in other areas of my body. For me prednisone did settle my breast down quite quickly, but I had to go off because it made my crazy. (very anxious, etc.)
How were you diagnosed with GM? what other testing has been done on your best, any culturing?
Hang in there, I really think you need to be very vigilant right now, keep pressing the doctors until they can tell you exactly what is going on, and ask them what your treatment plan is...what they have researched. Prednisone is not the only treatment. You may have to educate your doctor on this and lead your treatment, I did.
sending strength and good thoughts your way
Jo
Hello :-)
Thanks for answering.
I have bin on two antibiotics and Im allergic to pencelin and the doc dont find any other cures for the GM than prednisone... I was at the hospital today, and we are now stopping the predisone since the GM got worse now after two weeks on predisone. Im relifed and glad that they are thinking new. They wanted me to come back on monday but we are going (trying) on a easter holliday..
Thanks for the advice , I do also belive in healthy diet and omega 3.
Is ur GM very actiove now? My breast is now over double the size as the healthy one and its having a very red colour. I wonder when it will stop..
Wish the best for all of us.
Lill
Thanks for answering.
I have bin on two antibiotics and Im allergic to pencelin and the doc dont find any other cures for the GM than prednisone... I was at the hospital today, and we are now stopping the predisone since the GM got worse now after two weeks on predisone. Im relifed and glad that they are thinking new. They wanted me to come back on monday but we are going (trying) on a easter holliday..
Thanks for the advice , I do also belive in healthy diet and omega 3.
Is ur GM very actiove now? My breast is now over double the size as the healthy one and its having a very red colour. I wonder when it will stop..
Wish the best for all of us.
Lill
Hi Lill,
I was on prednisone 60 mg for a few months, then slowly reduced my dosage. I think it helped calm down the disease in the beginning. But after some time, especially once I reduced the dosage, I'm not sure it really helped anymore. I think it is your decision what to do, since the doctors don't really know enough about our disease. Have you tried antibiotics first? Is the doctor giving you any other alternatives?
I believe in alternative medicine- naural and homeopathic remedies- and I started taking many supplements while I was decreasing my prednisone. I think it really helped to be taking herbs that were helping my immune system and adrenal glands (which the prednisone suppresses) and I didn't have too many problems while decreasing my dose (while under my doctor's supervision). You may also want to consider Omega 3's (fish oil) which helps with inflammation, and making sure you have a healthy diet- reduce foods that contribure to inflammation, such as processed foods, milk products, meat. Also in one of my previous posts I describe how making a castor oil pack can help with the pain.
It is not selfish of you to want to stop the prednisone especially if you don't think it helps.
Miriam
I was on prednisone 60 mg for a few months, then slowly reduced my dosage. I think it helped calm down the disease in the beginning. But after some time, especially once I reduced the dosage, I'm not sure it really helped anymore. I think it is your decision what to do, since the doctors don't really know enough about our disease. Have you tried antibiotics first? Is the doctor giving you any other alternatives?
I believe in alternative medicine- naural and homeopathic remedies- and I started taking many supplements while I was decreasing my prednisone. I think it really helped to be taking herbs that were helping my immune system and adrenal glands (which the prednisone suppresses) and I didn't have too many problems while decreasing my dose (while under my doctor's supervision). You may also want to consider Omega 3's (fish oil) which helps with inflammation, and making sure you have a healthy diet- reduce foods that contribure to inflammation, such as processed foods, milk products, meat. Also in one of my previous posts I describe how making a castor oil pack can help with the pain.
It is not selfish of you to want to stop the prednisone especially if you don't think it helps.
Miriam
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