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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
2 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
2 years ago
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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
2 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
2 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
2 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
2 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
2 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
2 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
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
Intrinsic factor and parietal cell antibody positive but MMA normal is it PA?
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
Aumshantii
in
Pernicious Anaemia Society
3 years ago
Has anyone achieved a reduction in fatigue from PMR through the introduction of tocilizumab (Actemra) into their treatment regimen?
Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is
Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is
Ozark
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
Tocilizumab
I am seeing a new rheumatologist following an urgent referral from the hospital tomorrow, Thursday 16th, afternoon. It has been suggested by the hospital registrar, he rang before 9.00am on Monday to see how I was after my emergency visit last Thursday and increased to 60mgs from 5mgs dose of pred.,
I am seeing a new rheumatologist following an urgent referral from the hospital tomorrow, Thursday 16th, afternoon. It has been suggested by the hospital registrar, he rang before 9.00am on Monday to see how I was after my emergency visit last Thursday and increased to 60mgs from 5mgs dose of pred.,
MavisEllen
in
PMRGCAuk
3 years ago
Tocilizumab & Covid vaccine
I seem to remember that I delayed my Toc jab when I had my Phizer jab. Is that correct? If so, by a day or a week? Getting booster today when I’d normally inject Toc.
I seem to remember that I delayed my Toc jab when I had my Phizer jab. Is that correct? If so, by a day or a week? Getting booster today when I’d normally inject Toc.
Bachblues
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 CARE
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
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