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reducing
haven,t posted for long time, but been reading some of your reduction plans, i started at 40 mg, oct 2016, got down to 10 mg last spring, when i told my rheumy in august last yr about my 49 yr son diagnosed , with cancer, multiple myeloma, and that he would be having a stem cell transplant in januar
haven,t posted for long time, but been reading some of your reduction plans, i started at 40 mg, oct 2016, got down to 10 mg last spring, when i told my rheumy in august last yr about my 49 yr son diagnosed , with cancer, multiple myeloma, and that he would be having a stem cell transplant in januar
arvine
in
PMRGCAuk
6 years ago
Mouth ulcers
I’m feeling sorry for myself as I have a mouth full of ulcers - literally a dozen of them. It’s making it hard to eat, drink and clean my teeth. I know I have to wait for them to heal - salt water and Anbesol work best for me - but I’m just feeling so miserable and you’re the only people that understand
I’m feeling sorry for myself as I have a mouth full of ulcers - literally a dozen of them. It’s making it hard to eat, drink and clean my teeth. I know I have to wait for them to heal - salt water and Anbesol work best for me - but I’m just feeling so miserable and you’re the only people that understand
Nurseladybird
in
LUPUS UK
6 years ago
CALR Type 1 & 2 Have Contrasting OS Outcomes
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
socrates_8
in
MPN Voice
6 years ago
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The History of BMT
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
MFBMT2011
in
MPN Voice
6 years ago
Myelofibrosis & Yransplant Symposium
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
MFBMT2011
in
MPN Voice
6 years ago
Transplant Viability
I started showing visible signs of AMN when I was 21 and am currently experiencing a constant, stiff aching pain in my legs from mid thigh down. I was diagnosed last year and the amount of study into my condition by the various health care teams has been admirable. Before the disease started having a
I started showing visible signs of AMN when I was 21 and am currently experiencing a constant, stiff aching pain in my legs from mid thigh down. I was diagnosed last year and the amount of study into my condition by the various health care teams has been admirable. Before the disease started having a
Laird_Mac
in
AMN EASIER
6 years ago
Advice for Summer?
I was diagnosed with lymphodema a few months ago, and have gradually gotten used to wearing thigh high compression stockings on my right leg. But I have to say I’m not looking forward to doing the same in the summer. What if it’s too hot for compression stockings? We own an inn and Summer is our high
I was diagnosed with lymphodema a few months ago, and have gradually gotten used to wearing thigh high compression stockings on my right leg. But I have to say I’m not looking forward to doing the same in the summer. What if it’s too hot for compression stockings? We own an inn and Summer is our high
Kallenubble
in
LSN
6 years ago
Never Diagnosed
Hello im new to this well my journey started back in 2008 when i got a horrible bout of mouth sores inside my mouth i would say almost 100 at a time. Then out of the blue one day i get this very bad stomach cramp like someone was grabbing my insides couldnt breath needed air went to bathroom vomiting
Hello im new to this well my journey started back in 2008 when i got a horrible bout of mouth sores inside my mouth i would say almost 100 at a time. Then out of the blue one day i get this very bad stomach cramp like someone was grabbing my insides couldnt breath needed air went to bathroom vomiting
Courtg86
in
Behçet's UK
6 years ago
Cold sores
Hi l was just wondering does anyone take l-lysine 1000mg supplements I have been told it is very good in stopping cold sore out breaks. Is it ok to take with levothyrine and liothyronine thanks.
Hi l was just wondering does anyone take l-lysine 1000mg supplements I have been told it is very good in stopping cold sore out breaks. Is it ok to take with levothyrine and liothyronine thanks.
teen17
in
Thyroid UK
6 years ago
Stem cell transplant?
Hi everyone, am glad to join this society of inspiring and strong people. I have been reading a lot of posts on here but no one seems to be talking about the only possible cure for this disease. So has anyone ever thought of having a transplant, especially for the little kids?
Hi everyone, am glad to join this society of inspiring and strong people. I have been reading a lot of posts on here but no one seems to be talking about the only possible cure for this disease. So has anyone ever thought of having a transplant, especially for the little kids?
Bellamie09
in
Sickle Cell Society
6 years ago
Hello from North Carolina USA
As of today, I have been officially diagnosed with ET following the results of my BMB and bloodwork. My name is Pam and I am a 62 year old woman who transplanted from Maine to North Carolina about two years ago -the weather is surely better here! My PCP originally suspected a problem when my platelets
As of today, I have been officially diagnosed with ET following the results of my BMB and bloodwork. My name is Pam and I am a 62 year old woman who transplanted from Maine to North Carolina about two years ago -the weather is surely better here! My PCP originally suspected a problem when my platelets
PamelaNC
in
MPN Voice
6 years ago
How do you know that you are in remission?
Hi, I had a stem cell transplant in feb 2016 which has been successful although I did suffer from very severe gut gvhd and to some extent skin gvhd which left me hospitalised at Kings for 5 months. I’ve been out of hospital for just over a year now and have been receiving chemo as a preventative measure
Hi, I had a stem cell transplant in feb 2016 which has been successful although I did suffer from very severe gut gvhd and to some extent skin gvhd which left me hospitalised at Kings for 5 months. I’ve been out of hospital for just over a year now and have been receiving chemo as a preventative measure
StarryRoo
in
Leukaemia Support
6 years ago
Sore tongue and Behçets disease
Hello I was diagnosed with behcets 2 years ago and after my initial 3 months of symptoms I have not had any for nearly two years. I think I am currently in a flare-up phase but do not have mouth ulcers although my tongue is extremely sore, also have muscle ache, fatigue, poor vision, joint ache, tingly
Hello I was diagnosed with behcets 2 years ago and after my initial 3 months of symptoms I have not had any for nearly two years. I think I am currently in a flare-up phase but do not have mouth ulcers although my tongue is extremely sore, also have muscle ache, fatigue, poor vision, joint ache, tingly
Sara0209
in
Behçet's UK
6 years ago
Results Of Sputum Lab Works
Well received results of sputum sample submitted week ago. Results confirmed oral yeast infection MAINLY oral thrush. Guess that will teach me to take oral thrush more serious. Steriods antibiotics did nothing to help ONLY thing that helped was NYSTAN fungi throat drops. Its like revolving door of symptoms
Well received results of sputum sample submitted week ago. Results confirmed oral yeast infection MAINLY oral thrush. Guess that will teach me to take oral thrush more serious. Steriods antibiotics did nothing to help ONLY thing that helped was NYSTAN fungi throat drops. Its like revolving door of symptoms
Hidden
in
Lung Conditions Community Forum
7 years ago
CLL and Myeloma anyone?
I've had CLL with no treatment for 11 years but recently broke my collarbone and xray and CT scan revealed multiple myeloma. Treatment for myeloma started 4 days ago and the plan is to have stem cell transplant in 3-4 months. Anyone in the same boat and could stem cell transplant also help the CLL.
I've had CLL with no treatment for 11 years but recently broke my collarbone and xray and CT scan revealed multiple myeloma. Treatment for myeloma started 4 days ago and the plan is to have stem cell transplant in 3-4 months. Anyone in the same boat and could stem cell transplant also help the CLL.
Hidden
in
CLL Support
6 years ago
Exercise making me ill
Has anyone experienced trying to get fit by exercise only to find you become ‘run down’ break out in cold sores, mouth ulcers and flare ups of other autoimmune such as Oral Lichen Planus, Lichen Sclerosus. I have had Hashimoto’s for 37 years and osteoarthritis. Whenever I try to keep strong I become
Has anyone experienced trying to get fit by exercise only to find you become ‘run down’ break out in cold sores, mouth ulcers and flare ups of other autoimmune such as Oral Lichen Planus, Lichen Sclerosus. I have had Hashimoto’s for 37 years and osteoarthritis. Whenever I try to keep strong I become
Blondiejayjay
in
Thyroid UK
7 years ago
Oral thrush
Has anyone got any tips on how to get rid of oral thrush. I'm so fed up with having a sore mouth and everything tasting disgusting. I've tried Nystatin but it's not working for me.
Has anyone got any tips on how to get rid of oral thrush. I'm so fed up with having a sore mouth and everything tasting disgusting. I've tried Nystatin but it's not working for me.
Hidden
in
Lung Conditions Community Forum
7 years ago
Jakafi scare - MPN Research Foundation reply
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Paul123456
in
MPN Voice
6 years ago
If swellling of the mouth common with mouth sores/ulcers?
Does anyone have swelling with their mouth sores? I havent got an official diagnoses but 2 specialist suspect BD. Even when the sores are tiny my lips are swollen (cheeks swelll if sores are in the back) and they hurt so freaking bad I think I must be crazy because they dont look that bad. I just havent
Does anyone have swelling with their mouth sores? I havent got an official diagnoses but 2 specialist suspect BD. Even when the sores are tiny my lips are swollen (cheeks swelll if sores are in the back) and they hurt so freaking bad I think I must be crazy because they dont look that bad. I just havent
chelseylauer
in
Behçet's UK
7 years ago
Stem Cell Transplant
I've just been watching the BBC new and they were talking about a relatively new treatment for MS that kills off your immune system with chemo and then transplants your own stem cells back in, re-booting your immune system. Can all autoimmune disease patients benefit from a stem cell transplant and would
I've just been watching the BBC new and they were talking about a relatively new treatment for MS that kills off your immune system with chemo and then transplants your own stem cells back in, re-booting your immune system. Can all autoimmune disease patients benefit from a stem cell transplant and would
AMDP
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
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