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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
3 years ago
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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
3 years ago
INF+ ATO Study, "A knockout combination for MPN stem cells"
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
EPguy
in
MPN Voice
3 years ago
Alex TLC Digital Community Weekend
The agenda for our weekend is available to view: https://www.alextlc.org/digital-community-weekend-2021/ On Saturday, the Science Day, we have presentations about the new NHS Inherited White Matter Disorders Patient Registry and research updates on the following Leukodystrophies: - AMN & ALD - Alexander's
The agenda for our weekend is available to view: https://www.alextlc.org/digital-community-weekend-2021/ On Saturday, the Science Day, we have presentations about the new NHS Inherited White Matter Disorders Patient Registry and research updates on the following Leukodystrophies: - AMN & ALD - Alexander's
Hidden
Partner
in
Leukodystrophy Support
3 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
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
Getting there….🏃♀️
After dealing with cancer, radiotherapy , chemotherapy , a stem cell transplant & a total hip replacement less then 10mts ago - I have just completed week 6 & Run 2! The thought of catching COVID because of my health issues has kept me locked away for nearly 2yrs - getting back out there to run has helped
After dealing with cancer, radiotherapy , chemotherapy , a stem cell transplant & a total hip replacement less then 10mts ago - I have just completed week 6 & Run 2! The thought of catching COVID because of my health issues has kept me locked away for nearly 2yrs - getting back out there to run has helped
SunShineRae
in
Couch to 5K
3 years ago
Steroid sparers
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
marantha
in
PMRGCAuk
3 years ago
Senolytic combo Dasatinib + Quercetin
Nalakrats has in two major posts shared fascinating insights on senescence and senolytics, drugs that selectively clear senescent cells. I am most grateful to him for this, which set me off on a journey the results of which I sum up in this post. Senescence has also recently been well reported on by
Nalakrats has in two major posts shared fascinating insights on senescence and senolytics, drugs that selectively clear senescent cells. I am most grateful to him for this, which set me off on a journey the results of which I sum up in this post. Senescence has also recently been well reported on by
Purple-Bike
in
Advanced Prostate Cancer
3 years ago
31 year old facing AML fight.
Evening everyone. In the last few days ive had to come to terms that i will be battling AML. But sadly there isnt much information out there regarding its effects on younger people. It seems to be all info regarding 65+ years old. No treatment has been started yet, still waiting on results coming back
Evening everyone. In the last few days ive had to come to terms that i will be battling AML. But sadly there isnt much information out there regarding its effects on younger people. It seems to be all info regarding 65+ years old. No treatment has been started yet, still waiting on results coming back
NathaN89
in
Leukaemia Support
3 years ago
Advice dealing with chronic GVHD in the eyes and skin while trying to withdraw steroids
Hello everyone! I had a stem cell transplant last year and I am dealing with very uncomfortable Graft Versus Host Disease in my eyes and skin. The one in the eyes is the worse! I need to have drops every 10mins. Punctal ducts were helpful for three weeks only. I am waiting for some stem cell eye drops
Hello everyone! I had a stem cell transplant last year and I am dealing with very uncomfortable Graft Versus Host Disease in my eyes and skin. The one in the eyes is the worse! I need to have drops every 10mins. Punctal ducts were helpful for three weeks only. I am waiting for some stem cell eye drops
lifeafterSCT
in
MPN Voice
3 years ago
NHS app health record says my GCA is minor!
I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this: 29 October 2021 Giant cell arteritis without polymyalgia rheumatica Significance: Minor Status: Active I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after
I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this: 29 October 2021 Giant cell arteritis without polymyalgia rheumatica Significance: Minor Status: Active I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after
Broseley
in
PMRGCAuk
3 years ago
Pfizer Pill
I received this news via the New York Times which, if true, will be helpful as we learn to live with this wretched disease. A Covid pill developed by Pfizer cuts the risk of hospitalisation or death in vulnerable adults by 89 per cent, according to a clinical trial carried out by the US company. Incidentally
I received this news via the New York Times which, if true, will be helpful as we learn to live with this wretched disease. A Covid pill developed by Pfizer cuts the risk of hospitalisation or death in vulnerable adults by 89 per cent, according to a clinical trial carried out by the US company. Incidentally
Thelmarina
in
PMRGCAuk
3 years ago
First Stem Cell Transplant Appointment done
Thanks to everyone who replied to my first post on this. My husband and I stayed over in Southampton and we got home today. To my great relief, the consultant was extremely approachable and excellent at explaining things. I didn't ask all of my questions as these initial discussions are being done over
Thanks to everyone who replied to my first post on this. My husband and I stayed over in Southampton and we got home today. To my great relief, the consultant was extremely approachable and excellent at explaining things. I didn't ask all of my questions as these initial discussions are being done over
Otterfield
in
MPN Voice
3 years ago
Study shows low or undetectable immune response to double COVID-19 vaccination in patients with impaired immune systems
The first data from the ongoing OCTAVE (Observational Cohort Trial-T-cells Antibodies and Vaccine Efficacy in SARS-CoV-2) study show that a significant proportion of clinically at-risk patients with certain immunocompromised or immunosuppressed conditions mount a low or undetectable immune response after
The first data from the ongoing OCTAVE (Observational Cohort Trial-T-cells Antibodies and Vaccine Efficacy in SARS-CoV-2) study show that a significant proportion of clinically at-risk patients with certain immunocompromised or immunosuppressed conditions mount a low or undetectable immune response after
2greys
in
Lung Conditions Community Forum
3 years ago
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