Scleroderma Information » Scleroderma » Thank you
Question:
Please post the list of her meds on here. – Hide quoted text — Show quoted text -Melvyn Palmer wrote: > I live in the UK, my mother (now 76) was diagnosed with scleroderma about 5 > years ago. I got lots of support from the people here when I became very > worried about my mothers condition. > My mother’s scleroderma has been under control with a cocktail of drugs (I > will send any interested persons a list) since then. > About two days ago my mother started to notice spots on her skin, > predominantly on her legs, although these spots seem to be almost > everywhere. We both thought they were insect bites her GP also seems to > think so. Looking at past records of GP’s though with scleroderma based > questions has taught me to seek help from specialists. I hope they are > insect bites, my mothers fingers are very cold though and the skin on her > legs has started to become tight once again. > As I mentioned before my mother has been on a cocktail of drugs, recently > though because of the tremendous way my mother was progressing she no longer > takes Methotrexate (very slow reduction to nil over 12 months). I also know > that there are many side effects with reducing this drug. > I wish everyone here the very best and I know what many of you are going > through. In case there are any here from the UK then I would like to say > that my mother has been seeing a fantastic consultant – Dr E. Baguley (Hull > Royal Infirmary) since being diagnosed with scleroderma. I also know that > this consultant regularly meets up with A US consultant – hmmm Dr Black, or > Brown. Sorry I can’t remember ? > Thanks for the support that everyone offered 5 years ago – I wish everyone > all the very best and that everyone knows there are lots of people here that > are willing to help and support you. > God bless everyone
Response:
Would that be Dr Black at Royal Free Hospital in London? http://www.scleroderma.org/news/newscarolblack.htm So glad you’ve found great care for your mother. I think you’ll find that the disease has its ups and downs despite all we do, but it makes it much easier to deal with when you see an experienced doctor instead of one who hasn’t seen much scleroderma. Melvyn Palmer wrote:
snipped – Hide quoted text — Show quoted text -> I wish everyone here the very best and I know what many of you are going > through. In case there are any here from the UK then I would like to say > that my mother has been seeing a fantastic consultant – Dr E. Baguley (Hull > Royal Infirmary) since being diagnosed with scleroderma. I also know that > this consultant regularly meets up with A US consultant – hmmm Dr Black, or > Brown. Sorry I can’t remember ? > Thanks for the support that everyone offered 5 years ago – I wish everyone > all the very best and that everyone knows there are lots of people here that > are willing to help and support you. > God bless everyone
Response:
Yes I think she’s the one 
) – many thanks I’m posting the medication my mother was on 4 years ago and the medication my mother is presently taking. It took a seemingly long time before the correct drugs were administered to my mother upon diagnoses of Scleroderma, many drugs were adminstered to her but caused unacceptable side effects. Also throughout the last four years she’s had to take other drugs for (other?) medical conditions such as Prozac, recently sleeping tablets – her condition however is under control and she currently very comfortable with her condition. Originally my mother tried different medications such as Cyclophophamine, during the course she had to be removed from this medication because of it affecting the lungs. We were quite rightly reminded about one drug working on one patient, having totally unacceptable side effects on another. Daily Dose 4 years ago, shortly after diagnoses Quinine 300mg Frusmide 40mg Captopril 50mg Prednisolone 10mg Calcichew 500mg Omeprazole 40mg Daily dose today Quinone Bisulphate 200mg Frusmide 40mg Captopril 50mg Calcichew 500mg Balneum Bath Oil (84.75%), as required Methatrexate 10mg/week Folic Acid 10mg/week Pantoprazole 20mg Zopiclone 3.75mg Frusemide 40mg – Hide quoted text — Show quoted text -> Would that be Dr Black at Royal Free Hospital in London? > http://www.scleroderma.org/news/newscarolblack.htm > So glad you’ve found great care for your mother. I think you’ll find > that the disease has its ups and downs despite all we do, but it makes > it much easier to deal with when you see an experienced doctor instead > of one who hasn’t seen much scleroderma. > Melvyn Palmer wrote: > snipped > > I wish everyone here the very best and I know what many of you are going > > through. In case there are any here from the UK then I would like to say > > that my mother has been seeing a fantastic consultant – Dr E. Baguley (Hull > > Royal Infirmary) since being diagnosed with scleroderma. I also know that > > this consultant regularly meets up with A US consultant – hmmm Dr Black, or > > Brown. Sorry I can’t remember ? > > Thanks for the support that everyone offered 5 years ago – I wish everyone > > all the very best and that everyone knows there are lots of people here that > > are willing to help and support you. > > God bless everyone
Response:
I live in the UK, my mother (now 76) was diagnosed with scleroderma about 5 years ago. I got lots of support from the people here when I became very worried about my mothers condition. My mother’s scleroderma has been under control with a cocktail of drugs (I will send any interested persons a list) since then. About two days ago my mother started to notice spots on her skin, predominantly on her legs, although these spots seem to be almost everywhere. We both thought they were insect bites her GP also seems to think so. Looking at past records of GP’s though with scleroderma based questions has taught me to seek help from specialists. I hope they are insect bites, my mothers fingers are very cold though and the skin on her legs has started to become tight once again. As I mentioned before my mother has been on a cocktail of drugs, recently though because of the tremendous way my mother was progressing she no longer takes Methotrexate (very slow reduction to nil over 12 months). I also know that there are many side effects with reducing this drug. I wish everyone here the very best and I know what many of you are going through. In case there are any here from the UK then I would like to say that my mother has been seeing a fantastic consultant – Dr E. Baguley (Hull Royal Infirmary) since being diagnosed with scleroderma. I also know that this consultant regularly meets up with A US consultant – hmmm Dr Black, or Brown. Sorry I can’t remember ? Thanks for the support that everyone offered 5 years ago – I wish everyone all the very best and that everyone knows there are lots of people here that are willing to help and support you. God bless everyone
no comment untill now