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Femoral hernia
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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
Sigmoiditis
I had a colonoscopy years ago - as I had a positive screening for blood (because I had a haemorrhoid). Years later these sent me another bowel screening kit - and I thought that it would be another false-negative, so I did not bother sampling or sending. Years after that (two years ago) I had lower abdominal
I had a colonoscopy years ago - as I had a positive screening for blood (because I had a haemorrhoid). Years later these sent me another bowel screening kit - and I thought that it would be another false-negative, so I did not bother sampling or sending. Years after that (two years ago) I had lower abdominal
S11m
in
Colon Cancer Connected
3 years ago
What is the maximum time you can be on prostap 3 injections?
I have been on prostap 3 since October 2020, with add-back HRT, Tibolone, since January 2021, almost 8 months. I'm due to have the next prostap 3 injection next month. I'm on the waiting list for an "urgent" (been waiting almost 9 months); hysterectomy, cyst and ovary removal, with bowel involvement
I have been on prostap 3 since October 2020, with add-back HRT, Tibolone, since January 2021, almost 8 months. I'm due to have the next prostap 3 injection next month. I'm on the waiting list for an "urgent" (been waiting almost 9 months); hysterectomy, cyst and ovary removal, with bowel involvement
77yellow
in
Endometriosis UK
3 years ago
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Could this be Lupus? A very long journey...
Hello all! I've been suffering for 30 or so years with many symptoms. Since puberty I have suffered with absent seizures, hand shakes, joint pain so bad I can't walk, stiff hands in the mornings (my little fingers get locked and need to be manipulated), stuttering (when I'm not feeling good), rashes
Hello all! I've been suffering for 30 or so years with many symptoms. Since puberty I have suffered with absent seizures, hand shakes, joint pain so bad I can't walk, stiff hands in the mornings (my little fingers get locked and need to be manipulated), stuttering (when I'm not feeling good), rashes
London1979
in
LUPUS UK
3 years ago
Letrazole side effects and the brand Femara
Hi I have been a member of HU previously for my thyroid, but since then I have had cancer 3 times. My question is specifically about Letrazole. I have been taking it since Feb 2019, initially I was ok, but as time passed I developed terrible joint and bone pains, at time I couldn't put my left foot
Hi I have been a member of HU previously for my thyroid, but since then I have had cancer 3 times. My question is specifically about Letrazole. I have been taking it since Feb 2019, initially I was ok, but as time passed I developed terrible joint and bone pains, at time I couldn't put my left foot
Pawsnjaws
in
SHARE Metastatic Breast Cancer
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
Recent and upcoming surgery
I had surgery last Thursday, March 25, for a hernia repair. While repairing the hernia, the surgeon observed a small bowel blockage and had to open the abdomen and repair that by removing a section of small intestines, the same surgery I had a year ago Jan. While coughing post-op I felt a pop. The
I had surgery last Thursday, March 25, for a hernia repair. While repairing the hernia, the surgeon observed a small bowel blockage and had to open the abdomen and repair that by removing a section of small intestines, the same surgery I had a year ago Jan. While coughing post-op I felt a pop. The
AnnaP668
in
SHARE Metastatic Breast Cancer
3 years ago
TSH rising despite being on 150mcg of thyroxine?
I had Graves years ago and eventually have become hypothyroid in later years since it was treated. I have been been stable for a while but over the years lots of ups and downs with vitamin D, calcium levels and rising parathyroid hormone levels and severe anemia. I have suffered with a flare up of GERD
I had Graves years ago and eventually have become hypothyroid in later years since it was treated. I have been been stable for a while but over the years lots of ups and downs with vitamin D, calcium levels and rising parathyroid hormone levels and severe anemia. I have suffered with a flare up of GERD
rillo1472
in
Thyroid UK
3 years ago
New Mitochondrial enzyme target, and a chance for Oligometastatic patients to step up--MetaCure trial-some information
Salutations FPC members, First, a look at a new mitochondrial enzyme target for those failing treatment. The process of ferroptosis can lead to cancer cell death and inhibit tumor growth, but a mitochondrial enzyme (DHODH) can block that process. Researchers have found that using brequinar, a drug being
Salutations FPC members, First, a look at a new mitochondrial enzyme target for those failing treatment. The process of ferroptosis can lead to cancer cell death and inhibit tumor growth, but a mitochondrial enzyme (DHODH) can block that process. Researchers have found that using brequinar, a drug being
NPfisherman
in
Fight Prostate Cancer
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
Fighting the fatigue
Hi there, I have stage 4 endo, a tumour on my left ovary and I’m currently on the list to have an oophorectomy. In the meantime I have been having decapeptyl injections with addback hrt. Im guessing the backlog for ops due to covid is going to be at least a year. I have other conditions too, ibs, anxiety
Hi there, I have stage 4 endo, a tumour on my left ovary and I’m currently on the list to have an oophorectomy. In the meantime I have been having decapeptyl injections with addback hrt. Im guessing the backlog for ops due to covid is going to be at least a year. I have other conditions too, ibs, anxiety
karenjack1000
in
Endometriosis UK
3 years ago
Hysterectomy & ovary removal - what do you wish you'd known first?
Hi, Thinking about surgery, the consultant explained to me that my options might range from removing the endo lesions and restoring of anatomy position, to total hysterectomy with bilateral salpingo-oophorectomy (removal of the uterus, cervix, fallopian tubes and ovaries). I still need an MRI scan to
Hi, Thinking about surgery, the consultant explained to me that my options might range from removing the endo lesions and restoring of anatomy position, to total hysterectomy with bilateral salpingo-oophorectomy (removal of the uterus, cervix, fallopian tubes and ovaries). I still need an MRI scan to
Hidden
in
Endometriosis UK
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
Full Hysterectomy with Ovary Removal and Stoma
Hi everyone, I was diagnosed with Endo after failed fertility treatment three years ago at the age of 39. After numerous scans, laparoscopy, MRI and sigmoidoscopy, the option suggested is a full hysterectomy with ovary removal and sigmoid colon resection due to scar tissue thickening a portion of it.
Hi everyone, I was diagnosed with Endo after failed fertility treatment three years ago at the age of 39. After numerous scans, laparoscopy, MRI and sigmoidoscopy, the option suggested is a full hysterectomy with ovary removal and sigmoid colon resection due to scar tissue thickening a portion of it.
Eddax19
in
Endometriosis UK
3 years ago
Pet Scan
Got results of my scan yesterday and I am NED!!!I do have a cracked rib on my left side and was told that was probably from radiation! Have been taking Femara ( letrazole) since last March and Ibrance since last May. Now if I can get over this upper respiratory infection I will be great!
Got results of my scan yesterday and I am NED!!!I do have a cracked rib on my left side and was told that was probably from radiation! Have been taking Femara ( letrazole) since last March and Ibrance since last May. Now if I can get over this upper respiratory infection I will be great!
JEY1
in
SHARE Metastatic Breast Cancer
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
Professor Furniss discusses surgery to prevent lymphoedema at the time of lymph node removal.
In the next of our questions to the expert series Professor Furniss and Anita discuss the use of surgery to prevent lymphoedema at the time of lymph node removal. https://youtu.be/4aSbVPe_wg4
In the next of our questions to the expert series Professor Furniss and Anita discuss the use of surgery to prevent lymphoedema at the time of lymph node removal. https://youtu.be/4aSbVPe_wg4
LymphSuppNetwork
LSN
in
LSN
3 years ago
Newbie
Hello all, I’m new here and just after some advice because this world of endo feels a little overwhelming atm. A little about me - I’m 27yo and have always suffered with v heavy painful periods and accepted it as ‘normal’. Was on mefenamic acid in my early teens, then got by on OTC painkillers. Tricycled
Hello all, I’m new here and just after some advice because this world of endo feels a little overwhelming atm. A little about me - I’m 27yo and have always suffered with v heavy painful periods and accepted it as ‘normal’. Was on mefenamic acid in my early teens, then got by on OTC painkillers. Tricycled
SamQuinn
in
Endometriosis UK
3 years ago
Still waiting for gallbladder removal
Hi there, i was diagnosed with gallstones in may 2020. At the time i couldnt have anything done as i was pregnant and in my third trimester. Since then i have made frequent visits to a&e for pain relief. They hve sent me home with co amoxiclav 4 times as always showing infection. I have also had ERCP
Hi there, i was diagnosed with gallstones in may 2020. At the time i couldnt have anything done as i was pregnant and in my third trimester. Since then i have made frequent visits to a&e for pain relief. They hve sent me home with co amoxiclav 4 times as always showing infection. I have also had ERCP
Bbbhddd
in
British Liver Trust
3 years ago
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