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Recovery from strep throat
I have cANCA positive GPA and had two rituximab infusions in January 2016 after which I had a fab spring with long forgotten levels of energy. I take 5mg prednisolon daily and once a week 7.5 mg Methotrexate. Sadly, I started to have a string of virus infections in May and June which took their toll
I have cANCA positive GPA and had two rituximab infusions in January 2016 after which I had a fab spring with long forgotten levels of energy. I take 5mg prednisolon daily and once a week 7.5 mg Methotrexate. Sadly, I started to have a string of virus infections in May and June which took their toll
Hidden
in
Vasculitis UK
8 years ago
Today is the day :-)
Morning you lovely people I'm having my first rituximab infusion this morning .Im really banking on this working as all else has failed .sulph, metho, hydox,Simponi biologic . I have been off work for 5 months now after contracting shingles in March .The clock is ticking re work as its coming up to
Morning you lovely people I'm having my first rituximab infusion this morning .Im really banking on this working as all else has failed .sulph, metho, hydox,Simponi biologic . I have been off work for 5 months now after contracting shingles in March .The clock is ticking re work as its coming up to
Fifi2
in
NRAS
8 years ago
Rituximab and infections
Hello all, Am seeing my rheumatologist privately next week for a chat as I am becoming increasingly concerned about the number of infections I am experiencing whilst on rituximab therapy. I have been on rituximab now for ten years and it has proved to be a wonderful treatment for my RD of 43 years. It
Hello all, Am seeing my rheumatologist privately next week for a chat as I am becoming increasingly concerned about the number of infections I am experiencing whilst on rituximab therapy. I have been on rituximab now for ten years and it has proved to be a wonderful treatment for my RD of 43 years. It
Scorer
in
NRAS
8 years ago
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RA and fibromyalga and PIP
Hi All, I am feeling pretty rubbish at the moment. I still have no word about my PIP mandatory reconsideration and my motability car has gone back. Because I had a break in my lease in 2013 when my driving licence was temporarily taken off me (due to benign essential tremor which DVLA thought was Parkinsons
Hi All, I am feeling pretty rubbish at the moment. I still have no word about my PIP mandatory reconsideration and my motability car has gone back. Because I had a break in my lease in 2013 when my driving licence was temporarily taken off me (due to benign essential tremor which DVLA thought was Parkinsons
dmc12
in
NRAS
8 years ago
Rituximab side effects
Hi all had my rtx infusion yesterday when they had to give me double antihistamine due to reaction, last night I had a terrible night I was awake nearly all night with heart beating fast and fuzzy feeling in both arms, has anybody else noticed these side effects, I am due to have 2nd treatment in 2 weeks
Hi all had my rtx infusion yesterday when they had to give me double antihistamine due to reaction, last night I had a terrible night I was awake nearly all night with heart beating fast and fuzzy feeling in both arms, has anybody else noticed these side effects, I am due to have 2nd treatment in 2 weeks
debsy29
in
NRAS
8 years ago
Rashes during chemo
Hello, My father has CLL for about 15 years now and had first round of chemo with bentamustine & rituximab 2 years ago when his WBC went too high. In Sept. 2015, his WBC went up again and his platelets dropped. His doctor ordered to have another chemo again with the same chemo cocktail. He has completed
Hello, My father has CLL for about 15 years now and had first round of chemo with bentamustine & rituximab 2 years ago when his WBC went too high. In Sept. 2015, his WBC went up again and his platelets dropped. His doctor ordered to have another chemo again with the same chemo cocktail. He has completed
yccymj
in
CLL Support
8 years ago
Update
Well I went to hospital and my nurse agreed to put me on rituximab .i just have to wait for finding and an infusion date . I'm so happy as I'm banking on this to work .Please God it does . My work has semi agreed to allow me to work on the ground for a temporary period until I'm fit to fly again .I was
Well I went to hospital and my nurse agreed to put me on rituximab .i just have to wait for finding and an infusion date . I'm so happy as I'm banking on this to work .Please God it does . My work has semi agreed to allow me to work on the ground for a temporary period until I'm fit to fly again .I was
Fifi2
in
NRAS
8 years ago
Shingles and methotrexate
Hello all, Some advice please. Due to take my methotrexate today but had to go to docs with suspected shingles. Diagnosis was confirmed and have started on antivirals so hoping disease will not develop. This is the 3rd. time I have had shingles over the last few years and guess it is due to the fact
Hello all, Some advice please. Due to take my methotrexate today but had to go to docs with suspected shingles. Diagnosis was confirmed and have started on antivirals so hoping disease will not develop. This is the 3rd. time I have had shingles over the last few years and guess it is due to the fact
Scorer
in
NRAS
8 years ago
life insurance
Have just taken out life insurance, declared sero negative ra, asked loads of questions re heart, lungs and eyes!!, but more interestingly if I was taking any of the following:- adalimumab, azathioprine, entercept, infliximab. lefumonide( is being considered by consultant) or rituximab.. now is this
Have just taken out life insurance, declared sero negative ra, asked loads of questions re heart, lungs and eyes!!, but more interestingly if I was taking any of the following:- adalimumab, azathioprine, entercept, infliximab. lefumonide( is being considered by consultant) or rituximab.. now is this
summer32
in
NRAS
8 years ago
Rituximab??
Hi everyone im new on here and would love to hear other peoples advice. I have lupus overlap and was seriously ill 3 years ago with it. I recovered due to given a VERY large amount of methylprednislone, which was the worst experience of my life! And then given rituximab. 3 years on ive have not had to
Hi everyone im new on here and would love to hear other peoples advice. I have lupus overlap and was seriously ill 3 years ago with it. I recovered due to given a VERY large amount of methylprednislone, which was the worst experience of my life! And then given rituximab. 3 years on ive have not had to
Rach459
in
LUPUS UK
8 years ago
Low dose naltrexone for alcohol cravings intefere with Anca positive MPA vasculitis treatment?
Using low dose naltrexone 50mg to curb alcohol cravings after going through a course of rituximab and currently taking prednisilone 25mg. Is this going to screw with my treatments?
Using low dose naltrexone 50mg to curb alcohol cravings after going through a course of rituximab and currently taking prednisilone 25mg. Is this going to screw with my treatments?
alcoman
in
Vasculitis UK
8 years ago
4 weeks post FCR
Hi All, been a tough last 10days, 2 hospital visits with one of them an overnight stay. Temperature has been spiking at 39 and still continues to do so. Doctors are pretty convinced its a virus as the blood results and cultures don't show an infection, and that it will eventually clear. In with the Prof
Hi All, been a tough last 10days, 2 hospital visits with one of them an overnight stay. Temperature has been spiking at 39 and still continues to do so. Doctors are pretty convinced its a virus as the blood results and cultures don't show an infection, and that it will eventually clear. In with the Prof
jackhammer
in
CLL Support
8 years ago
FCR-neutrophils
Hi All, I've just finished 6 rounds of FCR, last infusion 2 weeks ago 13th July.I have been hospitalised twice during rounds 3 and 4 with neutropenic sepsis and then had a rest bite of a further 2 weeks before going on to round 5 for my neutrophils to come up and were at 1.1 on treatment day. My blood
Hi All, I've just finished 6 rounds of FCR, last infusion 2 weeks ago 13th July.I have been hospitalised twice during rounds 3 and 4 with neutropenic sepsis and then had a rest bite of a further 2 weeks before going on to round 5 for my neutrophils to come up and were at 1.1 on treatment day. My blood
jackhammer
in
CLL Support
8 years ago
FCR stopped after cycle 5
What joy I was told at haematology clinic on Monday that I would not be having cycle 6 of FCR because there was no need. I had responded well and why put more chemo into me when associated with secondary cancer malignancies. For the past 3 cycles my lympocyctes have been below 0.5. Started at 265. Can't
What joy I was told at haematology clinic on Monday that I would not be having cycle 6 of FCR because there was no need. I had responded well and why put more chemo into me when associated with secondary cancer malignancies. For the past 3 cycles my lympocyctes have been below 0.5. Started at 265. Can't
devonrr
in
CLL Support
8 years ago
Untreated Aussies needing treatment - great clinical trial just for you
I just saw Con Tam at the Peter Mac in Melbourne today - I asked him when he thinks the trial of ibrutinib plus Venetoclax will open here for CLL patients (it's open for MCL and they're all doing well) and he said it's opening for treatment naieve in 3 months. Anyone approaching treatment here really
I just saw Con Tam at the Peter Mac in Melbourne today - I asked him when he thinks the trial of ibrutinib plus Venetoclax will open here for CLL patients (it's open for MCL and they're all doing well) and he said it's opening for treatment naieve in 3 months. Anyone approaching treatment here really
Debinoz
in
CLL Support
8 years ago
FCR Cycle 1
Hi, My dad is on day 2 of cycle 1 of FCR. Should he expect hair loss? If not, great and if yes then how long did it take for hair loss to occur? Thank you
Hi, My dad is on day 2 of cycle 1 of FCR. Should he expect hair loss? If not, great and if yes then how long did it take for hair loss to occur? Thank you
Lena2016
in
CLL Support
8 years ago
Waiting time for another round of Rituximab
Hi All. Not posted for a while as been well since my 3rd cycle of Rituximab last July ( should have been May but hospital messed me around and was quite unwell by the time finally booked in!!!). Anyway long story short it seems to start wearing off on me about 2 months prior to the year mark taking into
Hi All. Not posted for a while as been well since my 3rd cycle of Rituximab last July ( should have been May but hospital messed me around and was quite unwell by the time finally booked in!!!). Anyway long story short it seems to start wearing off on me about 2 months prior to the year mark taking into
lisalockit
in
NRAS
8 years ago
Blotches and Red Blood spots
Hi I'm on the Flair Trial I had my first of 6 treatments of Rituximab along with Ibrutinib and have been well apart from having Blood spots and getting a red blotch like sunburn on my cheek ,I see my specialist soon and have my next dose of Retuximab next week just hoping those symptoms are common thanks
Hi I'm on the Flair Trial I had my first of 6 treatments of Rituximab along with Ibrutinib and have been well apart from having Blood spots and getting a red blotch like sunburn on my cheek ,I see my specialist soon and have my next dose of Retuximab next week just hoping those symptoms are common thanks
Chuddie48
in
CLL Support
8 years ago
End of FLAIR. No more Ibrutinib. Great improvement!
I have been on FLAIR trail since November 2015, finished Rituximab end of March. Suffered side effect from Ibrutinib of severe muscle and joint pains. Despite reducing the dosage to the minimum these continued. So debilitating that eventually it was decided to stop the Ibrutinib completely. After
I have been on FLAIR trail since November 2015, finished Rituximab end of March. Suffered side effect from Ibrutinib of severe muscle and joint pains. Despite reducing the dosage to the minimum these continued. So debilitating that eventually it was decided to stop the Ibrutinib completely. After
romarin
in
CLL Support
8 years ago
Severe anemia
Since diagnosis at the beginning of May I have completed three rounds of FCR treatments. The first cycle went well and before second cycle my blood counts were close to normal (low lymphs). After second cycle everything started to go down and my third round was put off for two weeks while my counts improved
Since diagnosis at the beginning of May I have completed three rounds of FCR treatments. The first cycle went well and before second cycle my blood counts were close to normal (low lymphs). After second cycle everything started to go down and my third round was put off for two weeks while my counts improved
Elremsetay
in
CLL Support
8 years ago
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