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Muscle Ache
I have muscle ache from shoulder to elbow in both arms but worse in my right. I have given infusions of Rituximab recently but had these aches before that. Just wondered if the infusion will help settle this down. I have been told the infusion takes 12-16 weeks to take effect so it is still early days
I have muscle ache from shoulder to elbow in both arms but worse in my right. I have given infusions of Rituximab recently but had these aches before that. Just wondered if the infusion will help settle this down. I have been told the infusion takes 12-16 weeks to take effect so it is still early days
Ellieellie
in
NRAS
7 years ago
ITP
Hi I was diagnosed 9 years ago with lupus after a long drawn out journey of tests consultants etc, I have like most of you may have to the extras fibro, raynaurds, sjorgens, in 2014 I was also diagnosed with thrombocytopenia or Itp, does anyone have this, and if so how are you getting on with treatment
Hi I was diagnosed 9 years ago with lupus after a long drawn out journey of tests consultants etc, I have like most of you may have to the extras fibro, raynaurds, sjorgens, in 2014 I was also diagnosed with thrombocytopenia or Itp, does anyone have this, and if so how are you getting on with treatment
Manclady61
in
LUPUS UK
7 years ago
Wondering
Hello all. Well I had my second infusion of Rituximab on Thursday. Took six attempts to get the cannula in so am a bit bruised. I know they said it can take up to 12 weeks to see a difference. What they haven't said is what sort of difference. At the moment I can't close my bra because I don't seem
Hello all. Well I had my second infusion of Rituximab on Thursday. Took six attempts to get the cannula in so am a bit bruised. I know they said it can take up to 12 weeks to see a difference. What they haven't said is what sort of difference. At the moment I can't close my bra because I don't seem
Ellieellie
in
NRAS
7 years ago
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3 Years past FCR
After a FCR ride from 10/13 -4/14, with more or less no side effects, I went in CR and MRD -! Since then, blood counts were always in normal range. I have been doing well since end of treatment, enjoying a normal life with quarterly or all six months checking in hospital After one year past treatment
After a FCR ride from 10/13 -4/14, with more or less no side effects, I went in CR and MRD -! Since then, blood counts were always in normal range. I have been doing well since end of treatment, enjoying a normal life with quarterly or all six months checking in hospital After one year past treatment
seoul
in
CLL Support
7 years ago
Immunoglobulin Replacement
Is anyone on here having infusions/injections to replace low immunoglobulins? I've been advised by immunology at derriford hospital that I'm at risk of severe infections and need to start replacement treatment but I've been at the same igg level since 2013 with no problems. I'd like to hear of people's
Is anyone on here having infusions/injections to replace low immunoglobulins? I've been advised by immunology at derriford hospital that I'm at risk of severe infections and need to start replacement treatment but I've been at the same igg level since 2013 with no problems. I'd like to hear of people's
DevonLottie
in
Vasculitis UK
7 years ago
Arthroscopy of the knee?
Just back from my GP where we discussed the knee X-ray that I had just before Christmas. There is a piece of loose bone or cartilage floating around that is causing pain and swelling, as well as some arthritis. I've been referred to an orthopaedic surgeon for a possible arthroscopy. Has anyone had this
Just back from my GP where we discussed the knee X-ray that I had just before Christmas. There is a piece of loose bone or cartilage floating around that is causing pain and swelling, as well as some arthritis. I've been referred to an orthopaedic surgeon for a possible arthroscopy. Has anyone had this
BronteM
in
Vasculitis UK
7 years ago
Bendamustine vs FCR
My consultant is discussing treatment options with me. Been in W and W for almost 6 years but now my ALC is over145 and my haemaglobin is drifting down below 120. He is suggesting that Bendamustine with Rituximab will be a better option for me than FCR because of some particular presentation of my condition
My consultant is discussing treatment options with me. Been in W and W for almost 6 years but now my ALC is over145 and my haemaglobin is drifting down below 120. He is suggesting that Bendamustine with Rituximab will be a better option for me than FCR because of some particular presentation of my condition
Clovelly
in
CLL Support
7 years ago
Dealing with malaria and mosquito's on holiday
Hi Everyone. My husband has CLL and finished FCR treatment 21/2 years ago. So far all is good - bloods normal WBC in normal range and stable. We are now considering a holiday in India (Goa) and I have maybe unwisely chosen a hotel with no aircon so I am worried about the risk of mosquito borne disease
Hi Everyone. My husband has CLL and finished FCR treatment 21/2 years ago. So far all is good - bloods normal WBC in normal range and stable. We are now considering a holiday in India (Goa) and I have maybe unwisely chosen a hotel with no aircon so I am worried about the risk of mosquito borne disease
Hidden
in
CLL Support
7 years ago
Infusion hurrah!
In the day unit connected up to rituximab!! I wasn't sure if it would be happening today but came prepared with kindle, warm cardigan , eydrops and lipsil . I hope i it has a good effect again. The staff are all lovely here , the worse thing at the moment is going to the loo as the drip has to go with
In the day unit connected up to rituximab!! I wasn't sure if it would be happening today but came prepared with kindle, warm cardigan , eydrops and lipsil . I hope i it has a good effect again. The staff are all lovely here , the worse thing at the moment is going to the loo as the drip has to go with
weathervane
in
LUPUS UK
7 years ago
Update for followers
I note I have 11 followers and I'm surprised I have not provided an update for quite a while. I started Obinutuzumab and venetoclax in march 2016 with 75 percent CLL in my bone marrow aged 47. I had some early challenges but by August I had only 0.08 percent! Mrd positive. Next bone marrow biopsy
I note I have 11 followers and I'm surprised I have not provided an update for quite a while. I started Obinutuzumab and venetoclax in march 2016 with 75 percent CLL in my bone marrow aged 47. I had some early challenges but by August I had only 0.08 percent! Mrd positive. Next bone marrow biopsy
Corin850
in
CLL Support
7 years ago
B-Cell Depletion
As further trials are carried out on M.E treatment using Rituximab by Fluge and Mella it is of some interest how the same treatment is providing useful options within a similar autoimmune neurological condition MS http://www.nejm.org/doi/full/10.1056/NEJMe1614717?rss=searchAndBrowse&
As further trials are carried out on M.E treatment using Rituximab by Fluge and Mella it is of some interest how the same treatment is providing useful options within a similar autoimmune neurological condition MS http://www.nejm.org/doi/full/10.1056/NEJMe1614717?rss=searchAndBrowse&
readerlist
in
Ramsays Disease
7 years ago
Reducing lyrica?
Happy new year! I am with the rheumy on Friday and I hope to get 2nd rituximab infusion. Should i also ask about stopping/reducing my lyrica? I take 100mg twice a day and it has really helped muscle pain from sjogrens. I haven't noticed any side effects so should i stick with what is working?? I have
Happy new year! I am with the rheumy on Friday and I hope to get 2nd rituximab infusion. Should i also ask about stopping/reducing my lyrica? I take 100mg twice a day and it has really helped muscle pain from sjogrens. I haven't noticed any side effects so should i stick with what is working?? I have
weathervane
in
LUPUS UK
7 years ago
Rituximab how long before it starts to work?
My husband had his last (4th) treatment on the 23rd December but still no change in his platelets. We've read it can take up to 12 weeks to hopefully work but is that from the 1st or the 4th treatment? Any advice gratefully received. Thank you.
My husband had his last (4th) treatment on the 23rd December but still no change in his platelets. We've read it can take up to 12 weeks to hopefully work but is that from the 1st or the 4th treatment? Any advice gratefully received. Thank you.
Thewakey31
in
ITP Support Association
7 years ago
Problems with RA
Hi, my name is Brenda and I am experiencing difficulties with RA flare ups affecting mainly my hands. As I live on my own daily tasks are proving difficult. Has anyone any advice on how to relieve the pain around knuckles without taking other medications. I am on methotrexate and rituximab infusions
Hi, my name is Brenda and I am experiencing difficulties with RA flare ups affecting mainly my hands. As I live on my own daily tasks are proving difficult. Has anyone any advice on how to relieve the pain around knuckles without taking other medications. I am on methotrexate and rituximab infusions
Brenda1952
in
NRAS
7 years ago
CLL Patient, unmutated CD 38-, FCR 10/13 - 4/14, MRD-, best blood results since then even t-Cells climbing to normal, IgG 650, IgA, IgM norm
After now three years ending FCR I am still pleased to feel great, no health problems at all. Blood counts in best shape. three times a week gym for 1 1/2 hour, and two/three times fast walking for one hour. having lots of raw vegetabiles and fruits, drinking green tea from leafs and little mango juice
After now three years ending FCR I am still pleased to feel great, no health problems at all. Blood counts in best shape. three times a week gym for 1 1/2 hour, and two/three times fast walking for one hour. having lots of raw vegetabiles and fruits, drinking green tea from leafs and little mango juice
seoul
in
CLL Support
7 years ago
Back to methotrexate...which I'm allergic to?!?!
So since my hospital admission in July I've been off all ra drugs, I can tell you it's not been easy. After all the issues with my lungs and how every drug has given me the worst of its side effects I really believed in myself that I would go into my future without anymore ra drugs, that I would just
So since my hospital admission in July I've been off all ra drugs, I can tell you it's not been easy. After all the issues with my lungs and how every drug has given me the worst of its side effects I really believed in myself that I would go into my future without anymore ra drugs, that I would just
orchidcass77
in
NRAS
7 years ago
Good and the bad.
Good to hear that there is some GPS out there that take the time to follow up your hospital appointment. My experience is that the second my surgery haven't a clue what is going on with me. I have had lupus since 2008 my lungs heart kidneys liver and skin are involved pretty much my whole body. My main
Good to hear that there is some GPS out there that take the time to follow up your hospital appointment. My experience is that the second my surgery haven't a clue what is going on with me. I have had lupus since 2008 my lungs heart kidneys liver and skin are involved pretty much my whole body. My main
Silvertop46
in
LUPUS UK
7 years ago
Rituximab - side effects
Hi On Friday 16th December, I received my 2nd infusion of Rituximab - 2 weeks after the 1st infusion; this is for treatment of anca positive vasculitis, probably Churgg Strauss. I would be interested to hear from others how they felt at this stage and whether they had any side effects. I do feel a little
Hi On Friday 16th December, I received my 2nd infusion of Rituximab - 2 weeks after the 1st infusion; this is for treatment of anca positive vasculitis, probably Churgg Strauss. I would be interested to hear from others how they felt at this stage and whether they had any side effects. I do feel a little
sealives
in
Vasculitis UK
7 years ago
FCR Cycle 4 (For CLL) - Itchy Rash
Hello all CLL enthusiasts. I have just finished cycle 4 of my 6 cycle FCR treatment after being on 8-9 years W&W. I am on the FLAIR trial, but got randomly sorted into the current treatment. In hindsight I am not too disappointed as FCR is the current gold standard treatment, it hasn't been too bad to
Hello all CLL enthusiasts. I have just finished cycle 4 of my 6 cycle FCR treatment after being on 8-9 years W&W. I am on the FLAIR trial, but got randomly sorted into the current treatment. In hindsight I am not too disappointed as FCR is the current gold standard treatment, it hasn't been too bad to
Rich316
in
CLL Support
7 years ago
Nervous
Starting Biological treatment this month on the 29th. Been told to expect to be there for quite a few hours as drug will be given intravenously. Followed by another session two weeks later. I am being given Rituximab. Don't know what to expect after first round. How long does it take to notice a
Starting Biological treatment this month on the 29th. Been told to expect to be there for quite a few hours as drug will be given intravenously. Followed by another session two weeks later. I am being given Rituximab. Don't know what to expect after first round. How long does it take to notice a
Ellieellie
in
NRAS
8 years ago
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