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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
Bloating after transplant
Hi, I had 2nd kidney transplant 2017 after 14 years dialysis. I have trouble with stomach bloating , if it's hot at work and I swear I feel better otherwise after every meal always feel bloated for hours. 10mg pred still Tacrolimus Mycophenalte Warfarin for heart
Hi, I had 2nd kidney transplant 2017 after 14 years dialysis. I have trouble with stomach bloating , if it's hot at work and I swear I feel better otherwise after every meal always feel bloated for hours. 10mg pred still Tacrolimus Mycophenalte Warfarin for heart
Kompai
in
Kidney Transplant
3 years ago
Can I come to UK for transplant?
I am 23 and I am on dialysis from two years. I have been recommended kidney & liver transplant. Unfortunately from where i am doctors are not doing the transplant from out family donor. My younger has the same gene mutation so he is rejected for donating but my friends want to donate. I have seen UK's
I am 23 and I am on dialysis from two years. I have been recommended kidney & liver transplant. Unfortunately from where i am doctors are not doing the transplant from out family donor. My younger has the same gene mutation so he is rejected for donating but my friends want to donate. I have seen UK's
Devumair
in
Dialysis Support
3 years ago
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Had my third kidney transplant
Hello everyone:) Happy Holidays! 2 weeks ago I received the phone call that they had a kidney for me ..this was very unexpected because I had been told throughout the whole pre transplant process that I would have a living donor through the paired exchange program. My husband would donate to someone
Hello everyone:) Happy Holidays! 2 weeks ago I received the phone call that they had a kidney for me ..this was very unexpected because I had been told throughout the whole pre transplant process that I would have a living donor through the paired exchange program. My husband would donate to someone
Calebzztop
in
Kidney Transplant
3 years ago
Worried and
Hello all. I am wondering what are criteria for liver transplant? I keep ask my doctor if I need this he keeps saying no. He told my damage of liver out of 10 is 8.5 so I think its big. Also he informed me that 25% of people with my disease could have reverse of damage and MAYBE I HAVE THAT LUCK THAT
Hello all. I am wondering what are criteria for liver transplant? I keep ask my doctor if I need this he keeps saying no. He told my damage of liver out of 10 is 8.5 so I think its big. Also he informed me that 25% of people with my disease could have reverse of damage and MAYBE I HAVE THAT LUCK THAT
Bazinga89
in
British Liver Trust
3 years ago
Cold medicine
I’m a kidney transplant recipient. I received my kidney 16 months ago. What OTC meds can we take for a head cold?
I’m a kidney transplant recipient. I received my kidney 16 months ago. What OTC meds can we take for a head cold?
Charly1429
in
Kidney Transplant
3 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
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
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
I have had enough
This is Randy I had my Mohs procedure Thursday. 60 stitches in my temple, 30 stitches in my arm. Squamous carcinoma cancer from the Sun. Doctor told me cancer on my temple is very aggressive may come back. That really bothers me. I hope that no one has to go through this. So far this year I have had
This is Randy I had my Mohs procedure Thursday. 60 stitches in my temple, 30 stitches in my arm. Squamous carcinoma cancer from the Sun. Doctor told me cancer on my temple is very aggressive may come back. That really bothers me. I hope that no one has to go through this. So far this year I have had
Randy1805
in
Kidney Transplant
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
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
The Melody Study
Dear All, have you been asked about The Melody Study, into COVID immunity? If not then Do ask- your Doctors/ Consultants or even your GP. I 'qualify' BOTH as a Vasculitis Patient and a 'Solid' Organ Recipient (I had a Kidney Transplant, in July 2013). The Test is, relatively 'easy' to do, a small Finger
Dear All, have you been asked about The Melody Study, into COVID immunity? If not then Do ask- your Doctors/ Consultants or even your GP. I 'qualify' BOTH as a Vasculitis Patient and a 'Solid' Organ Recipient (I had a Kidney Transplant, in July 2013). The Test is, relatively 'easy' to do, a small Finger
AndrewT
in
Vasculitis UK
3 years ago
Angiotensin Ⅱ Receptor Blockers
A new paper in the Japanese Journal of Cancer and Chemotherapy, below, [1]. "The use of anti-hypertensive drugs was reportedly associated with an increasing risk of Pca. However, as an effect of post diagnostic use of anti-hypertensive drugs, angiotensin Ⅱ receptor blockers(
[i][u]ARBs)was associated
A new paper in the Japanese Journal of Cancer and Chemotherapy, below, [1]. "The use of anti-hypertensive drugs was reportedly associated with an increasing risk of Pca. However, as an effect of post diagnostic use of anti-hypertensive drugs, angiotensin Ⅱ receptor blockers(
[i][u]ARBs)was associated
pjoshea13
in
Advanced Prostate Cancer
3 years ago
Spirinolactone question
I am on the liver transplant waiting list (6m and counting.) Last year I was put on spirinolactone to deal with ascites, which it has done very efficiently, however, I have just had a call from the specialist's secretary asking me to stop taking it... I will keep an eye on my weight and any swelling
I am on the liver transplant waiting list (6m and counting.) Last year I was put on spirinolactone to deal with ascites, which it has done very efficiently, however, I have just had a call from the specialist's secretary asking me to stop taking it... I will keep an eye on my weight and any swelling
taar
in
British Liver Trust
3 years ago
FDA approves new COVID-19 antibody drug to protect most vulnerable from coronavirus
FDA approves new COVID-19 antibody drug to protect most vulnerable from coronavirus AstraZeneca’s Evusheld okayed for those 12 and older who didn’t respond adequately to vaccines or who have history of severe allergic reactions to shots WASHINGTON — Federal health officials on Wednesday authorized
FDA approves new COVID-19 antibody drug to protect most vulnerable from coronavirus AstraZeneca’s Evusheld okayed for those 12 and older who didn’t respond adequately to vaccines or who have history of severe allergic reactions to shots WASHINGTON — Federal health officials on Wednesday authorized
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
3 years ago
Drug induced cirrhosis
Hi. I’ve been reading posts for around 6 months now. Reason being for my mum who sadly passed away 5months ago due to cirrhosis. My query is has anyone ever suffered cirrhosis due to antibiotics. My mum was prescribed 6 courses of a drug named flucloxocillin which I now know is known worldwide to cause
Hi. I’ve been reading posts for around 6 months now. Reason being for my mum who sadly passed away 5months ago due to cirrhosis. My query is has anyone ever suffered cirrhosis due to antibiotics. My mum was prescribed 6 courses of a drug named flucloxocillin which I now know is known worldwide to cause
Ebooth
in
British Liver Trust
3 years ago
IBS
I had my kidney transplant 3 1/2 years ago . I now have IBS with a very bad order. I’m very embarrassed by this. Any information to stop this Thanks
I had my kidney transplant 3 1/2 years ago . I now have IBS with a very bad order. I’m very embarrassed by this. Any information to stop this Thanks
11642
in
Kidney Transplant
3 years ago
HV88 Virus
Post liver transplant 3 years. Recently diagnosed with HV88 virus which I carried pre transplant but didn't know. Thankfully copies are low and now on 1mg of Sirolimus to keep copies low Taking 0.5 Advagraf now as LFT's are still excellent and all well within range and the reduction has helped renal
Post liver transplant 3 years. Recently diagnosed with HV88 virus which I carried pre transplant but didn't know. Thankfully copies are low and now on 1mg of Sirolimus to keep copies low Taking 0.5 Advagraf now as LFT's are still excellent and all well within range and the reduction has helped renal
Geordiemac
in
British Liver Trust
3 years ago
BK Virus
I am one month post kidney transplant however I have a BK virus that is freaking me out I do labs twice a week and it went from 0 to 57 to 461 to 12,000 haven’t got results from today but would greatly appreciate if anyone can share their experience with me to help me understand what to expect. Thank
I am one month post kidney transplant however I have a BK virus that is freaking me out I do labs twice a week and it went from 0 to 57 to 461 to 12,000 haven’t got results from today but would greatly appreciate if anyone can share their experience with me to help me understand what to expect. Thank
Alkaline1
in
Kidney Transplant
3 years ago
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