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Can I quote you?
Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among
Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among
LemonZest11
in
PMRGCAuk
2 years ago
Researchers report third case of HIV remission after stem cell transplant using umbilical cord blood
A US woman has become the third known person who's gone into HIV remission, and the first mixed-race woman, thanks to a transplant of stem cells from umbilical cord blood, according to research presented at a conference Tuesday. https://edition.cnn.com/2022/02/15/health/hiv-third-person-remission/index.html
A US woman has become the third known person who's gone into HIV remission, and the first mixed-race woman, thanks to a transplant of stem cells from umbilical cord blood, according to research presented at a conference Tuesday. https://edition.cnn.com/2022/02/15/health/hiv-third-person-remission/index.html
Farooqji
in
Cure Parkinson's
2 years ago
Is this possibly GCA again?
I am looking for some advice please. I was diagnosed with PMR 4four years ago and this was followed by Giant Cell Arteritis. I was given 60 mgs Prenisolone and gradually tapered down. Unfortunately I had a flare a few months later and I was not given appropriate advice and the sight in my left eye
I am looking for some advice please. I was diagnosed with PMR 4four years ago and this was followed by Giant Cell Arteritis. I was given 60 mgs Prenisolone and gradually tapered down. Unfortunately I had a flare a few months later and I was not given appropriate advice and the sight in my left eye
pamela4215
in
PMRGCAuk
2 years ago
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Pred sick day rules.
I'm currently on 2mg of Pred and weekly Tocilizumab and doing Ok as far as PMR and GCA symptoms go. However I've caught the dratted cold that's doing the rounds and wonder whether this means I should increase the Pred in line with the Sick Day Rules leaflet. I'm only using Paracetamol for the cold so
I'm currently on 2mg of Pred and weekly Tocilizumab and doing Ok as far as PMR and GCA symptoms go. However I've caught the dratted cold that's doing the rounds and wonder whether this means I should increase the Pred in line with the Sick Day Rules leaflet. I'm only using Paracetamol for the cold so
PastelsinArt
in
PMRGCAuk
2 years ago
Cord blood donation Northern Ireland
Does anyone know much about this? I’m very early on in pregnancy but heard about this years ago when beother in law had to have a stem cell transplant. I’m not sure if it’s available in Northern Ireland. Does it have to be donated or can it be froze for possible future use for child?
Does anyone know much about this? I’m very early on in pregnancy but heard about this years ago when beother in law had to have a stem cell transplant. I’m not sure if it’s available in Northern Ireland. Does it have to be donated or can it be froze for possible future use for child?
Babytwinkle
in
Pregnancy and Parenting Support
2 years ago
WARWICK's Latest Update on his POST ASCT journey thus far...
Post by MPN-MATE Admin » Sat Feb 12, 2022 10:39 pm Evening all... :D As some of you may recall, sometime ago in 2021, Warwick, (one of our committee members), underwent his Allogenic Stem Cell Transplant (ASCT) journey. While his condition is deemed a success, the journey itself remains ongoing w/
Post by MPN-MATE Admin » Sat Feb 12, 2022 10:39 pm Evening all... :D As some of you may recall, sometime ago in 2021, Warwick, (one of our committee members), underwent his Allogenic Stem Cell Transplant (ASCT) journey. While his condition is deemed a success, the journey itself remains ongoing w/
socrates_8
in
MPN Voice
2 years ago
10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
lankisterguy
Volunteer
in
CLL Support
2 years ago
Assistance with Potential misdiagnosis.
Hi All, I was unsure where to turn and you guys are my last hope! In July 2020 I was diagnosed with MS ( Multiple Sclerosis ) due to having some numbness and tingling in legs and foot and cognitive problems ( forgetful and thinking issues ) and extreme fatigue. I then had an MRI which revealed lesions
Hi All, I was unsure where to turn and you guys are my last hope! In July 2020 I was diagnosed with MS ( Multiple Sclerosis ) due to having some numbness and tingling in legs and foot and cognitive problems ( forgetful and thinking issues ) and extreme fatigue. I then had an MRI which revealed lesions
smileysammi
in
Pernicious Anaemia Society
2 years ago
JCVI advice recommending a fourth Covid jab for LVV-GCA patients on Tocilizumab?
I have been on (self-injected) Ro Actemra (Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and
I have been on (self-injected) Ro Actemra (Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and
Suzita76
in
PMRGCAuk
2 years ago
Happy to be here!
With everything that's been going on with my lung disease over the past few years, I often forget just how fortunate I am to still be here. In September 2003 I was diagnosed with chronic myeloid leukaemia at the age of 18. I was totally blindsided and the future looked bleak. The amazing treatments
With everything that's been going on with my lung disease over the past few years, I often forget just how fortunate I am to still be here. In September 2003 I was diagnosed with chronic myeloid leukaemia at the age of 18. I was totally blindsided and the future looked bleak. The amazing treatments
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
Life expectancy with MF
Hello, all. I was diagnosed with post ET MF in 2019, after having been diagnosed with ET jak 2 in 2008. In 2019, I had my second BMB where it was confirmed I had progressed to MF, intermediate 1. I had a third BMB last September to determine whether I was a candidate for a bone marrow transplant. At
Hello, all. I was diagnosed with post ET MF in 2019, after having been diagnosed with ET jak 2 in 2008. In 2019, I had my second BMB where it was confirmed I had progressed to MF, intermediate 1. I had a third BMB last September to determine whether I was a candidate for a bone marrow transplant. At
Cja1956
in
MPN Voice
2 years ago
Help make a drug to treat post-transplant CMV available to patients in Canada
If you have experienced Cytomegalovirus (CMV) following your Allogeneic Stem-Cell Transplant, you can help Canadian patients gain access to this treatment by completing our survey! You do not need to live in Canada to complete this survey. CLL Canada is working with a coalition of blood cancer patient
If you have experienced Cytomegalovirus (CMV) following your Allogeneic Stem-Cell Transplant, you can help Canadian patients gain access to this treatment by completing our survey! You do not need to live in Canada to complete this survey. CLL Canada is working with a coalition of blood cancer patient
CLL_Canada_Group
in
CLL Support
2 years ago
Jaw spasm & neck muscle problems?
Hi, I am new to this forum which I am now following on behalf of my husband. He has scleroderma primarily upper body, as a result of Chronic Graft vs Host Disease post stem cell transplant. He has had and still has many issues with c GvHD. This year he has developed 2 more problems which are proving
Hi, I am new to this forum which I am now following on behalf of my husband. He has scleroderma primarily upper body, as a result of Chronic Graft vs Host Disease post stem cell transplant. He has had and still has many issues with c GvHD. This year he has developed 2 more problems which are proving
AnnW22
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Sudden Lymph Node Enlargement
I am a 58 year old female and was diagnosed a year ago. I have great bloodwork and have been without symptoms until a month ago & now have an enlarged lymph node that will require surgical removal for biopsy. The PET scan results are “worrisome for advanced lymphoma” and its hard not to mentally go
I am a 58 year old female and was diagnosed a year ago. I have great bloodwork and have been without symptoms until a month ago & now have an enlarged lymph node that will require surgical removal for biopsy. The PET scan results are “worrisome for advanced lymphoma” and its hard not to mentally go
StrengthHopeLove
in
CLL Support
2 years ago
Starting tocilizumab
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
Sharitone
in
PMRGCAuk
3 years ago
Join the Virus Watch project ( in the UK)
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Suzita76
in
PMRGCAuk
3 years ago
Does anyone know whether I will experience steroid withdrawal even though I’m on tocilizumab?
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
Erikaknitssocks
in
PMRGCAuk
3 years ago
Summary Paper from Drs, Claire N. Harrison and Donal P. McLornan
Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.16573 From chart, HCT control matters. This was discovered ~2011 and is likely a big part of what we've discussed
Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.16573 From chart, HCT control matters. This was discovered ~2011 and is likely a big part of what we've discussed
EPguy
in
MPN Voice
3 years ago
Tocilizumab cessation.
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
AncientMariner
in
PMRGCAuk
3 years ago
Stopping Tocilizumab
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
AncientMariner
in
PMRGCAuk
3 years ago
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