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Sodium / potassium
Sodium intake . Hi a question regarding sodium intake and potassium .I’m on pred 15 mg - I have noticed the days I am not paying attention to diet ( most days Im Good !) but if I eat anything salty !! - ie crisps / chips with salt etc then my fluid balance seems to go completely out of whack - my eyes
Sodium intake . Hi a question regarding sodium intake and potassium .I’m on pred 15 mg - I have noticed the days I am not paying attention to diet ( most days Im Good !) but if I eat anything salty !! - ie crisps / chips with salt etc then my fluid balance seems to go completely out of whack - my eyes
Ballywilliam
in
PMRGCAuk
3 years ago
Tocilizumab treatment?
A friend of mine recently suggested that I try the monoclonal antibody tocilizumab as a treatment for my PMR. My questions are as follows: Has tocilizumab brought anyone into remission and for how long? On balance, is treatment with tocilizumab preferable to the prednisone that I'm taking now? What is
A friend of mine recently suggested that I try the monoclonal antibody tocilizumab as a treatment for my PMR. My questions are as follows: Has tocilizumab brought anyone into remission and for how long? On balance, is treatment with tocilizumab preferable to the prednisone that I'm taking now? What is
Ozark
in
PMRGCAuk
3 years ago
Roactemra Tocilizumab - lab out of stock - advice needed please.
Some of you may remember that I am taking Tocilizumab injections (only) regularly for GCA. Not long ago, others in my situation wrote saying that they had been warned that it was going to run out for a while due to the same drug being used world wide for covid patients. This has happened here in France
Some of you may remember that I am taking Tocilizumab injections (only) regularly for GCA. Not long ago, others in my situation wrote saying that they had been warned that it was going to run out for a while due to the same drug being used world wide for covid patients. This has happened here in France
Frenchduck
in
PMRGCAuk
3 years ago
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Tocilizumab treatment extension, and latest PET-CT scan results
Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum). 2 days later, my Consultant emailed me to say that she
Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum). 2 days later, my Consultant emailed me to say that she
Suzita76
in
PMRGCAuk
3 years ago
Worried
I have a fistula which constantly leaks, PTSD and I have recently been diagnosed with radiation
enteritis
. The fistula leaks all sorts including a.bit of blood. I have had 2 CT scans and I worry that it maybe something ominous and they doctors have may have missed something.
I have a fistula which constantly leaks, PTSD and I have recently been diagnosed with radiation
enteritis
. The fistula leaks all sorts including a.bit of blood. I have had 2 CT scans and I worry that it maybe something ominous and they doctors have may have missed something.
CrochetDancer
in
Pelvic Radiation Disease Association
3 years ago
Radiation Enteritis
I have just been diagnosed (after 2 years to & fro A&E) with radiation
enteritis
. I already have 2 stomas and the colorectal consultant wants to do a 3rd and his intention is to go back to 2 stomas in 6 months. Intentions are all well and good but are not concrete.
I have just been diagnosed (after 2 years to & fro A&E) with radiation
enteritis
. I already have 2 stomas and the colorectal consultant wants to do a 3rd and his intention is to go back to 2 stomas in 6 months. Intentions are all well and good but are not concrete.
CrochetDancer
in
Pelvic Radiation Disease Association
3 years ago
Calling UK tocilizumab or epipen users: How do you dispose of your self-injector? Who arranges it?
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
PMRpro
Ambassador
in
PMRGCAuk
3 years ago
More on HELP #3 Day in Hospital Possible Giant Cell Arteritis Biopsy Tomorrow. San Antonio Rose
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
SARose
in
PMRGCAuk
3 years ago
Scared
I was diagnosed with radiation
enteritis
in April but I am too scared to eat anything (other than soup or yoghurt) as I really cannot deal with another bowel obstruction. I have 2 stomas (colostomy and an urostomy). The urostomy is fine but the colostomy does what it wants.
I was diagnosed with radiation
enteritis
in April but I am too scared to eat anything (other than soup or yoghurt) as I really cannot deal with another bowel obstruction. I have 2 stomas (colostomy and an urostomy). The urostomy is fine but the colostomy does what it wants.
CrochetDancer
in
Pelvic Radiation Disease Association
3 years ago
Long term tocilizumab use
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
christine2715
in
PMRGCAuk
3 years ago
So Scared
Hi, I have recently been diagnosed with radiation
enteritis
and I am too scared to eat. The doctor told me I need a 3rd stoma and he wouldn’t listen to my concerns. He discharged me because I wouldn’t have a 3rd stoma and refused to give me any diet advice or refer me to a nutritionist.
Hi, I have recently been diagnosed with radiation
enteritis
and I am too scared to eat. The doctor told me I need a 3rd stoma and he wouldn’t listen to my concerns. He discharged me because I wouldn’t have a 3rd stoma and refused to give me any diet advice or refer me to a nutritionist.
CrochetDancer
in
Pelvic Radiation Disease Association
3 years ago
Fatigue and very hot flushes
On 5th June I reduced to 7mg but since then I have found the basics of life a massive struggle and I’m normally a few miles a day person. Various limbs have become painful even an old break in my wrist is giving me jip. When these hot flushes come on I feel absolutely drained so I’m going to add an
On 5th June I reduced to 7mg but since then I have found the basics of life a massive struggle and I’m normally a few miles a day person. Various limbs have become painful even an old break in my wrist is giving me jip. When these hot flushes come on I feel absolutely drained so I’m going to add an
AnniesRyder5
in
PMRGCAuk
3 years ago
Continuation of Tocilizumab treatment in UK needed- Help or advice needed please.
I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me. NICE still hasn’t rethought it’s advice
I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me. NICE still hasn’t rethought it’s advice
Suzita76
in
PMRGCAuk
3 years ago
Tocilizumab
If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing
If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing
AncientMariner
in
PMRGCAuk
3 years ago
A further update on the old taper journey ...
Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious
Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious
LemonZest11
in
PMRGCAuk
3 years ago
Had anyone had the Covid antibody test?
Saw a webinar in which it was suggested that a fairly small study showed people taking tocilizumab, mycophenelate, predisilone or methatrixate might only be covered 35-55% for the Covid vaccine. I am taking three of these. It recommended an antibody test - it was the SARS COVID anti spike test I think
Saw a webinar in which it was suggested that a fairly small study showed people taking tocilizumab, mycophenelate, predisilone or methatrixate might only be covered 35-55% for the Covid vaccine. I am taking three of these. It recommended an antibody test - it was the SARS COVID anti spike test I think
christine2715
in
PMRGCAuk
3 years ago
PRD support Essex
I have radiation
enteritis
and a stricture at the terminal ileum is there any support I can get in the Essex/London area. More managing my flare ups of bloating nausea cramps constipation ?
I have radiation
enteritis
and a stricture at the terminal ileum is there any support I can get in the Essex/London area. More managing my flare ups of bloating nausea cramps constipation ?
Beau63
in
Pelvic Radiation Disease Association
3 years ago
Butterfingers! Feeling frustrated and poor.
I am dyspraxic, which means that I have always been extremely clumsy and have terrible executive functioning. With advancing age, my dyspraxia has also meant that I have also experienced increasing aphasia - I can often see/hear the word in my brain, it just doesn't make it to my mouth. Since being on
I am dyspraxic, which means that I have always been extremely clumsy and have terrible executive functioning. With advancing age, my dyspraxia has also meant that I have also experienced increasing aphasia - I can often see/hear the word in my brain, it just doesn't make it to my mouth. Since being on
Hidden
in
PMRGCAuk
3 years ago
Chronic Radiation Enteritis Sufferer
I had a MRI a stricture in the terminal ileum was found and radiation
enteritis
was diagnosed. I’m now on a low residue diet, no meat, only allowed potatoes, no fruit a very limited diet as I’m still getting symptoms . I’m on 2 bottles ensure a day.
I had a MRI a stricture in the terminal ileum was found and radiation
enteritis
was diagnosed. I’m now on a low residue diet, no meat, only allowed potatoes, no fruit a very limited diet as I’m still getting symptoms . I’m on 2 bottles ensure a day.
Beau63
in
Pelvic Radiation Disease Association
3 years ago
Information for people in the UK on Tocilizumab (Ro-Actemra) injections
Hello, and apologies for not posting for such a long time. As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news. First of all, along with my husband, I have been a participant
Hello, and apologies for not posting for such a long time. As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news. First of all, along with my husband, I have been a participant
Suzita76
in
PMRGCAuk
3 years ago
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