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Stem cell mobilization
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Has anyone navigated Medicare while trying to get the TPIAT?
Hi All š We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. š They ask that anyone who has also navigated the
Hi All š We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. š They ask that anyone who has also navigated the
Skye_MC
Administrator
in
Chronic Pancreatitis Support
11 months ago
hot flushes
Iāve struggled with these for about twenty years and they have diminished over time. However, since going on preds, just over five weeks ago, they have got worse. Nothing like when they were at their worst when I was younger, but boy do they wake me up, when my sleep is pretty poor anyway, since the
Iāve struggled with these for about twenty years and they have diminished over time. However, since going on preds, just over five weeks ago, they have got worse. Nothing like when they were at their worst when I was younger, but boy do they wake me up, when my sleep is pretty poor anyway, since the
Freshairfiend
in
PMRGCAuk
7 months ago
Charity request for help: GCA patients in England
Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again. However, a recent study
Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again. However, a recent study
Fran_Benson
Partner
in
PMRGCAuk
7 months ago
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How often to Self Inject
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
MrJustatip
in
Pernicious Anaemia Society
10 months ago
Tocilizumab
I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
Noni71
in
PMRGCAuk
8 months ago
Stem cell transplant starts on Monday
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
Jm954
Administrator
in
CLL Support
1 year ago
Tocilizumab in the UK
I thought it may be helpful to share my Rheumy appointment yesterday. I have GCA and PMR and due to various reasons cannot tolerate Steriods. Instead I am treated with Methotrexate and tocilizumab which I received for a year as in standard in the UK. I was worried about what would happen when year expired
I thought it may be helpful to share my Rheumy appointment yesterday. I have GCA and PMR and due to various reasons cannot tolerate Steriods. Instead I am treated with Methotrexate and tocilizumab which I received for a year as in standard in the UK. I was worried about what would happen when year expired
WaltzG
in
PMRGCAuk
8 months ago
Should I switch SSRIs?
Hi all, Iāve been on sertraline for around 14 years on varying dosages. Most recently I was on 150mg, but over the past few weeks Iāve been coming down and Iām now on 50mg, in preparation for a switch to Paroxetine. I take sertraline as I was originally diagnosed with OCD and also had an eating disorder
Hi all, Iāve been on sertraline for around 14 years on varying dosages. Most recently I was on 150mg, but over the past few weeks Iāve been coming down and Iām now on 50mg, in preparation for a switch to Paroxetine. I take sertraline as I was originally diagnosed with OCD and also had an eating disorder
Griffo_
in
Thyroid UK
1 year ago
Adrenals
Morning everyone. This is my first post on here. I was diagnosed with GCA in August 2022 and have been tapering down the Prednisolone to 5mg. I also take Tocilizumab and Methotrexate as Iāve had a difficult time with the Prednisolone so many side effects. How do I know if my adrenal glands are working
Morning everyone. This is my first post on here. I was diagnosed with GCA in August 2022 and have been tapering down the Prednisolone to 5mg. I also take Tocilizumab and Methotrexate as Iāve had a difficult time with the Prednisolone so many side effects. How do I know if my adrenal glands are working
Noni71
in
PMRGCAuk
9 months ago
Thereās no point to this post
Hi everyone, hope youāre all as well as can be. Iām approximately 3 1/2 years into this PMR. Sometimes it gets me down. Iāve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! Itās been so long since I last took it that Iām wondering
Hi everyone, hope youāre all as well as can be. Iām approximately 3 1/2 years into this PMR. Sometimes it gets me down. Iāve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! Itās been so long since I last took it that Iām wondering
Bramble2000
in
PMRGCAuk
9 months ago
"Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica" - that's the headline but don't get too excited ...
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
PMRpro
Ambassador
in
PMRGCAuk
9 months ago
Tapering with new issues ongoing
Tapering while new issues arvine profile image arvineā¢ 8 hours agoā¢1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
Tapering while new issues arvine profile image arvineā¢ 8 hours agoā¢1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
arvine
in
PMRGCAuk
1 year ago
Tapering while new issues
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
arvine
in
Pain Concern
1 year ago
Red face / flushing. Possible rosacea
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Kraskie1915
in
CLL Support
1 year ago
Benefits of knowing your illness/condition/disease to help others as well as yourself
Itās about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and havenāt, until now, felt ready to share his story on the forum.
Itās about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and havenāt, until now, felt ready to share his story on the forum.
123-go
in
PMRGCAuk
10 months ago
Life beyond Myelofibrosis
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
Scaredy_cat
in
MPN Voice
1 year ago
introducing myself...
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
jmcasbar
in
Leukaemia Support
1 year ago
A case study post bariatric surgery
For anyone who has access to twitter, this case study posted yesterday might be of some interest. Probably as much for the discussion as the original case. (Don't get too excited! It is just another case where the origination of the problem doesn't get blamed. As I see it, the cause was iatrogenic and
For anyone who has access to twitter, this case study posted yesterday might be of some interest. Probably as much for the discussion as the original case. (Don't get too excited! It is just another case where the origination of the problem doesn't get blamed. As I see it, the cause was iatrogenic and
helvella
in
Pernicious Anaemia Society
1 year ago
Tooth extraction and tocilizumab
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from tocilizumab and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (tocilizumab and methotrexate) first? Advice appreciated
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from tocilizumab and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (tocilizumab and methotrexate) first? Advice appreciated
WaltzG
in
PMRGCAuk
10 months ago
FDA Approves Cell Therapy for Patients with Blood Cancers to Reduce Risk of Infection Following Stem Cell Transplantation- Released 4/17/23
Today [4/17/23], the U.S. Food and Drug Administration approved Omisirge (omidubicel-onlv), a substantially modified allogeneic (donor) cord blood-based cell therapy to quicken the recovery of neutrophils (a subset of white blood cells) in the body and reduce the risk of infection. The product is intended
Today [4/17/23], the U.S. Food and Drug Administration approved Omisirge (omidubicel-onlv), a substantially modified allogeneic (donor) cord blood-based cell therapy to quicken the recovery of neutrophils (a subset of white blood cells) in the body and reduce the risk of infection. The product is intended
PhysAssist
in
MPN Voice
1 year ago
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