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Rituximab for SLE inflammation on the brain, please help not sure whether to accept???
Hi all, my mum is being offered rituximab for her brain inflammation, she has SLE and is on steroids along with mycophenelate. She also has vasculitis. She doesn't seem very different in terms of brain function, maybe a bit more confused now days but it's hard to say. I'm worried about whether she should
Hi all, my mum is being offered rituximab for her brain inflammation, she has SLE and is on steroids along with mycophenelate. She also has vasculitis. She doesn't seem very different in terms of brain function, maybe a bit more confused now days but it's hard to say. I'm worried about whether she should
KerrieB
in
LUPUS UK
9 years ago
So the latest is
So last week I spent every day at the hospital ! As I recently said a professional patient lol. So diabetic wise more bloods tests and see doc in two weeks but he's happy the abscesses cleared with antibiotics. Hand doctor upset more fibromas have grown on my left hand. So I need more radiotherapy
So last week I spent every day at the hospital ! As I recently said a professional patient lol. So diabetic wise more bloods tests and see doc in two weeks but he's happy the abscesses cleared with antibiotics. Hand doctor upset more fibromas have grown on my left hand. So I need more radiotherapy
allanah
in
NRAS
9 years ago
Low White Cells
After 9 years on W&W, I started chemotherapy for CLL last September. I had 3 rounds of Bendamustine & Rituximab followed each time by hospitalisation for neutropaenic fever. I was so ill and very low white cells, my consultant gave me a rest of 8 weeks and then I had a long acting GCSF followed by one
After 9 years on W&W, I started chemotherapy for CLL last September. I had 3 rounds of Bendamustine & Rituximab followed each time by hospitalisation for neutropaenic fever. I was so ill and very low white cells, my consultant gave me a rest of 8 weeks and then I had a long acting GCSF followed by one
jaypax
in
CLL Support
9 years ago
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Idelalisib gains SMC approval for NHS Scotland use + early access
Hi All, Some good news Idelalisib (Zydelig) has been accepted for restricted use by NHS Scotland. you can read the full guidance PDF from the download on the SMC website. http://www.scottishmedicines.org.uk/SMC_Advice/Advice/1026_15_idelalisib_Zydelig/idelalisib_Zydelig CLLSA have participated in
Hi All, Some good news Idelalisib (Zydelig) has been accepted for restricted use by NHS Scotland. you can read the full guidance PDF from the download on the SMC website. http://www.scottishmedicines.org.uk/SMC_Advice/Advice/1026_15_idelalisib_Zydelig/idelalisib_Zydelig CLLSA have participated in
HAIRBEAR_UK
Administrator
in
CLL Support
9 years ago
Ibrutinib and Atrial Fibrillation
I have been receiving Ibrutinib for 5 months but have just been diagnosed with Atrial Fibrillation. Ibrutinib was prescribed under the Named Patient Scheme following the failure of 4 cycles of FCR, 6 cycles of R-CHOP , 4 cycles of R-Bendamustin and 3 cycles of mega dose steroids all administered over
I have been receiving Ibrutinib for 5 months but have just been diagnosed with Atrial Fibrillation. Ibrutinib was prescribed under the Named Patient Scheme following the failure of 4 cycles of FCR, 6 cycles of R-CHOP , 4 cycles of R-Bendamustin and 3 cycles of mega dose steroids all administered over
horsehay
in
CLL Support
9 years ago
Anyone experiencing chronic low immunoglobulins
It's taken 4 years nearly, but my amazing rheumatologists have figured out that my version of (currently) seroneg SLE + Sjögren's features leukopenia + hypogammaglobulinaemia & our head of clinc has just referred me to immunology. I think it was recent persistent kidney infections + comprehensive metabolic
It's taken 4 years nearly, but my amazing rheumatologists have figured out that my version of (currently) seroneg SLE + Sjögren's features leukopenia + hypogammaglobulinaemia & our head of clinc has just referred me to immunology. I think it was recent persistent kidney infections + comprehensive metabolic
Barnclown
in
LUPUS UK
9 years ago
Fatigue
Anyone have advice about managing fatigue? I'm Currently on the sick & have been for months. The Rituximab infusion that I had in August has not worked for me. I'm currently on steroids & painkillers till they decide what's next. I'm so tired all the time & getting through the day is a struggle.
Anyone have advice about managing fatigue? I'm Currently on the sick & have been for months. The Rituximab infusion that I had in August has not worked for me. I'm currently on steroids & painkillers till they decide what's next. I'm so tired all the time & getting through the day is a struggle.
Rachel43
in
NRAS
9 years ago
Has anyone disgnosed with Churg Strauss Syndrome (EGPA) has experience of taking Alemtuzmab (Campath)
Question from the face book group if anyone can help Just wondering if anybody has had - Alemtuzumab Dr David Jayne has put me forwards for it. I have to wait until June, 6 months clear of Rituximab but hopefully I will finally be able to get things under control with this new one... Any info anyone
Question from the face book group if anyone can help Just wondering if anybody has had - Alemtuzumab Dr David Jayne has put me forwards for it. I have to wait until June, 6 months clear of Rituximab but hopefully I will finally be able to get things under control with this new one... Any info anyone
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Different knee pain
Hi everyone, I'm new here, this site looks great tho just what I've been looking for! I'm 25, been diagnosed with RA for 6 years now in my knees and hands mostly and I've had Rituximab infusions as a last medication resort after years of pills that did nothing. It has done wonders for me, just wish they
Hi everyone, I'm new here, this site looks great tho just what I've been looking for! I'm 25, been diagnosed with RA for 6 years now in my knees and hands mostly and I've had Rituximab infusions as a last medication resort after years of pills that did nothing. It has done wonders for me, just wish they
EmLem89
in
NRAS
9 years ago
FCR or FR? Which is better?
Hi, everyone and Chris, In Canada, tbe treatment is FR is major, not FCR. Do you know why? Does cyclophosphamide have any toxic effects, although FCR is more effective than FR ? Miee
Hi, everyone and Chris, In Canada, tbe treatment is FR is major, not FCR. Do you know why? Does cyclophosphamide have any toxic effects, although FCR is more effective than FR ? Miee
Miee
in
CLL Support
9 years ago
Immunosuppressant's with Rituximab
I am on my 2nd round of Rituximab and am having to consider another immunosuppressant along side it, as I still do not feel well and my symptoms get worse as I taper my steroids. Has anybody experienced similar problems and if so, which drug worked well. Any experiences very welcome.
I am on my 2nd round of Rituximab and am having to consider another immunosuppressant along side it, as I still do not feel well and my symptoms get worse as I taper my steroids. Has anybody experienced similar problems and if so, which drug worked well. Any experiences very welcome.
Maudy1
in
Vasculitis UK
9 years ago
I,m interested to know
Does anybody know or been told of the complications that can arise with other conditions and Vasculitus. As some of you know (me being a regular poster of this forum) I suffer from Wergener's and unfortunately I haven't been having a good time of it lately, having to go back on rituximab after two years
Does anybody know or been told of the complications that can arise with other conditions and Vasculitus. As some of you know (me being a regular poster of this forum) I suffer from Wergener's and unfortunately I haven't been having a good time of it lately, having to go back on rituximab after two years
Dave_Buzzey_B
in
Vasculitis UK
9 years ago
Does anyone have any experience with Rituximab?
So I've been having IVIg on and off for the last 8 months and while it works well for me it's really difficult to make the whole week off college and work fit (and I know it'll make keeping a career difficult). My rheumy has suggested Rituximab as an alternative so that she can also get me off the godforsaken
So I've been having IVIg on and off for the last 8 months and while it works well for me it's really difficult to make the whole week off college and work fit (and I know it'll make keeping a career difficult). My rheumy has suggested Rituximab as an alternative so that she can also get me off the godforsaken
IrishLupie
in
LUpus Patients Understanding and Support
9 years ago
Does anyone have experiences with Rituximab?
So I've been having IVIg on and off for the last 8 months and while it works well for me it's really difficult to make the whole week off college and work fit (and I know it'll make keeping a career difficult). My rheumy has suggested Rituximab as an alternative so that she can also get me off the godforsaken
So I've been having IVIg on and off for the last 8 months and while it works well for me it's really difficult to make the whole week off college and work fit (and I know it'll make keeping a career difficult). My rheumy has suggested Rituximab as an alternative so that she can also get me off the godforsaken
IrishLupie
in
LUPUS UK
9 years ago
Neutropenia after chemo
Blood work yesterday my husband is again very neutropenic after several months of slightly improved numbers. We are 10 months after 6 cycles of FCR. Oncologist rather grimly speculating his bone marrow may not recover. So very very discouraged. He has had shots of neulasta in the past and responds
Blood work yesterday my husband is again very neutropenic after several months of slightly improved numbers. We are 10 months after 6 cycles of FCR. Oncologist rather grimly speculating his bone marrow may not recover. So very very discouraged. He has had shots of neulasta in the past and responds
dwolden
in
CLL Support
9 years ago
Original Coping strategies for Living with CLL - Part 1- Making good use of "Watch and Wait". Please read new version!
[i]The updated version to this very popular post can be found here:[/i] https://healthunlocked.com/cllsupport/posts/134219303/coping-strategies-things-we-can-do-to-improve-our-chances-on-the-cll-journey.-part-one-updated[i] - Admin[/i] When people are first diagnosed with CLL, they are usually told
[i]The updated version to this very popular post can be found here:[/i] https://healthunlocked.com/cllsupport/posts/134219303/coping-strategies-things-we-can-do-to-improve-our-chances-on-the-cll-journey.-part-one-updated[i] - Admin[/i] When people are first diagnosed with CLL, they are usually told
PaulaS
Volunteer
in
CLL Support
9 years ago
FLAIR Trial – ErnieUK: Red and White Cell Cytopenias before round 3 FCR
I’m happily into round 3 of the FCR arm of the FLAIR trial now, with a couple of hiccups on the way. As always please correct me on any errors/omissions and please share your own experiences. I have had problems in round 3 with both Red Cell and White Cell Cytopenias i.e. Not enough of these cells.
I’m happily into round 3 of the FCR arm of the FLAIR trial now, with a couple of hiccups on the way. As always please correct me on any errors/omissions and please share your own experiences. I have had problems in round 3 with both Red Cell and White Cell Cytopenias i.e. Not enough of these cells.
Ernest2
in
CLL Support
9 years ago
rituximab
HI, and best wishes all, I have just had a call from my consultants secretary for an app. for my next cycle ,which will be my 4th,and strangely she said he wants me to have just the one infusion this time. I wondered if anyone else has had this happen? jaxx
HI, and best wishes all, I have just had a call from my consultants secretary for an app. for my next cycle ,which will be my 4th,and strangely she said he wants me to have just the one infusion this time. I wondered if anyone else has had this happen? jaxx
jaxx1
in
NRAS
9 years ago
11q Deletion - Starting First Treatment Via Trial
Hi everyone. I will be starting my first treatment since having been on on watch and wait. I have signed up for a clinical trial that will offer me either FCR or Imbrutinib. The Arm will be computer selected. I am obviously nervous about FCR and had hoped to avoid chemo. That may not be an option. Having
Hi everyone. I will be starting my first treatment since having been on on watch and wait. I have signed up for a clinical trial that will offer me either FCR or Imbrutinib. The Arm will be computer selected. I am obviously nervous about FCR and had hoped to avoid chemo. That may not be an option. Having
cfgsmith
in
CLL Support
9 years ago
First infusion of rituximab
It took from 9.30 to 4.00 as scheduled. Had an injection of piriton, then some steroid then some saline. Then they put this large bag of the rituximab magic potion on the drip. By then I was feeling a bit woozy because of the piriton but felt more alert after various trips to the loo - still all hooked
It took from 9.30 to 4.00 as scheduled. Had an injection of piriton, then some steroid then some saline. Then they put this large bag of the rituximab magic potion on the drip. By then I was feeling a bit woozy because of the piriton but felt more alert after various trips to the loo - still all hooked
cathie
in
NRAS
9 years ago
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