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Tocilizumab cessation.
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
AncientMariner
in
PMRGCAuk
3 years ago
Anybody had a double surgery? Keyhole gallbladder removal and umbilical hernia repair??
Hi my name is Emma i am 33 years old and in april 2017 i was diagnosed with a umbilical hernia and gallstones. Tjey have got bad now so waiting for my date for surgery. I am a little concerned as to what to expect. I have 2 kids and it worries me the time it will take to be back on my feet. Anybody been
Hi my name is Emma i am 33 years old and in april 2017 i was diagnosed with a umbilical hernia and gallstones. Tjey have got bad now so waiting for my date for surgery. I am a little concerned as to what to expect. I have 2 kids and it worries me the time it will take to be back on my feet. Anybody been
Emjamel
in
British Liver Trust
3 years ago
Stopping Tocilizumab
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
AncientMariner
in
PMRGCAuk
3 years ago
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Steroid sparers
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
marantha
in
PMRGCAuk
3 years ago
New here and a less common type of OC
Hi everyone. I'm New here. I was diagnosed last November as having Stage 1c2 Grade 1 ovarian cancer but a less common type which was an endometriod adenocarcinoma of the ovary. I had two operations as nobody suspected cancer until the biposy came back of the cyst and ovary they removed. Then 6 weeks
Hi everyone. I'm New here. I was diagnosed last November as having Stage 1c2 Grade 1 ovarian cancer but a less common type which was an endometriod adenocarcinoma of the ovary. I had two operations as nobody suspected cancer until the biposy came back of the cyst and ovary they removed. Then 6 weeks
Nara42
in
My Ovacome
3 years ago
NHS app health record says my GCA is minor!
I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this: 29 October 2021 Giant cell arteritis without polymyalgia rheumatica Significance: Minor Status: Active I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after
I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this: 29 October 2021 Giant cell arteritis without polymyalgia rheumatica Significance: Minor Status: Active I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after
Broseley
in
PMRGCAuk
3 years ago
Pfizer Pill
I received this news via the New York Times which, if true, will be helpful as we learn to live with this wretched disease. A Covid pill developed by Pfizer cuts the risk of hospitalisation or death in vulnerable adults by 89 per cent, according to a clinical trial carried out by the US company. Incidentally
I received this news via the New York Times which, if true, will be helpful as we learn to live with this wretched disease. A Covid pill developed by Pfizer cuts the risk of hospitalisation or death in vulnerable adults by 89 per cent, according to a clinical trial carried out by the US company. Incidentally
Thelmarina
in
PMRGCAuk
3 years ago
IBS and other gastro problems
Hi, I’m new here! I have had IBS all my life (I’m 46 just now). Also have reflux. But last September my IBS has randomly got worse and I’ve developed more upper GI problems and Burning Mouth Syndrome. I had (yet another) endoscopy in April and the only thing that’s there is very mild, chronic oesophagitis
Hi, I’m new here! I have had IBS all my life (I’m 46 just now). Also have reflux. But last September my IBS has randomly got worse and I’ve developed more upper GI problems and Burning Mouth Syndrome. I had (yet another) endoscopy in April and the only thing that’s there is very mild, chronic oesophagitis
weegmack
in
Menopause and Perimenopause Support
3 years ago
Gallbladder removal
Hi folks. Just wondering if anyone on here has had their gallbladder removed? I have had IBS for years and years and flit between IBS-D and IBS-C. I’ve had several colonoscopy tests and always get the “all clear” for anything sinister. This year I’ve had upper GI issues, which I haven’t really had before
Hi folks. Just wondering if anyone on here has had their gallbladder removed? I have had IBS for years and years and flit between IBS-D and IBS-C. I’ve had several colonoscopy tests and always get the “all clear” for anything sinister. This year I’ve had upper GI issues, which I haven’t really had before
weegmack
in
IBS Network
3 years ago
Ovary removal
Hello, So after stage 4 endo diagnosis via a lap, Covid hit and my surgery and consultant appointments went on hold. 2 years later I’m finally having left ovary removal plus endo surrounding that ovary removed this week. What should I expect post op, any advise from any one that has had similar surgery
Hello, So after stage 4 endo diagnosis via a lap, Covid hit and my surgery and consultant appointments went on hold. 2 years later I’m finally having left ovary removal plus endo surrounding that ovary removed this week. What should I expect post op, any advise from any one that has had similar surgery
Mysterywomen
in
Endometriosis UK
3 years ago
10 years of MBC- tumor markers creeping up.
Hi everyone. I was diagnosed Sept 22, 2011. Bones only. My first 4-5 years were pretty harsh. Avastin, Femara, Pamamidrate. After nearly dying, my oncologist just left me on Femara. Now my markers have been slowly increasing, the biggest this last test, every 4 months. They jumped 20 points. Now
Hi everyone. I was diagnosed Sept 22, 2011. Bones only. My first 4-5 years were pretty harsh. Avastin, Femara, Pamamidrate. After nearly dying, my oncologist just left me on Femara. Now my markers have been slowly increasing, the biggest this last test, every 4 months. They jumped 20 points. Now
Dawn53094
in
SHARE Metastatic Breast Cancer
3 years ago
Making sense of IVF in your 40s…
Hi, first time on here and hoping to connect with some of you and your stories. I’m 41, just completed a second round of ICSI which has failed. OTD tomorrow morning but BFNs up until this point. Should say I’ve had a left blocked tube and hydrosalpinx, as well as a polyp removal. My AMH is 6.19 1st
Hi, first time on here and hoping to connect with some of you and your stories. I’m 41, just completed a second round of ICSI which has failed. OTD tomorrow morning but BFNs up until this point. Should say I’ve had a left blocked tube and hydrosalpinx, as well as a polyp removal. My AMH is 6.19 1st
Sabretooth
in
Fertility Network UK
3 years ago
Thought it was under control after years of multiple serious surgeries and diet changes but now facing new battles - any advice welcome
Hello all, I was diagnosed with endometriosis aged 21 after 8 years of awful problems and symptoms. After my first laparoscopy I was initially told it was “just a few spots of endometriosis” and my options were chemically induced menopause (gnrh and add back HRT) or to get pregnant and they fitted
Hello all, I was diagnosed with endometriosis aged 21 after 8 years of awful problems and symptoms. After my first laparoscopy I was initially told it was “just a few spots of endometriosis” and my options were chemically induced menopause (gnrh and add back HRT) or to get pregnant and they fitted
Greys90
in
Endometriosis UK
3 years ago
Life Post Hysterectomy
So I had an abdominal hysterectomy with oophorectomy on the 1st of July. I am 6 weeks post-op. Pain on or around the wound is much better though its still a bit sore and hurts if Im sitting too long. Endopain is gone so far 🤞🤞 Struggling big time with energy levels. Have started transitioning back
So I had an abdominal hysterectomy with oophorectomy on the 1st of July. I am 6 weeks post-op. Pain on or around the wound is much better though its still a bit sore and hurts if Im sitting too long. Endopain is gone so far 🤞🤞 Struggling big time with energy levels. Have started transitioning back
Endo_Phoenix
in
Endometriosis UK
3 years ago
Has anyone achieved a reduction in fatigue from PMR through the introduction of tocilizumab (Actemra) into their treatment regimen?
Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is
Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is
Ozark
in
PMRGCAuk
3 years ago
Tocilizumab
I am seeing a new rheumatologist following an urgent referral from the hospital tomorrow, Thursday 16th, afternoon. It has been suggested by the hospital registrar, he rang before 9.00am on Monday to see how I was after my emergency visit last Thursday and increased to 60mgs from 5mgs dose of pred.,
I am seeing a new rheumatologist following an urgent referral from the hospital tomorrow, Thursday 16th, afternoon. It has been suggested by the hospital registrar, he rang before 9.00am on Monday to see how I was after my emergency visit last Thursday and increased to 60mgs from 5mgs dose of pred.,
MavisEllen
in
PMRGCAuk
3 years ago
Tocilizumab & Covid vaccine
I seem to remember that I delayed my Toc jab when I had my Phizer jab. Is that correct? If so, by a day or a week? Getting booster today when I’d normally inject Toc.
I seem to remember that I delayed my Toc jab when I had my Phizer jab. Is that correct? If so, by a day or a week? Getting booster today when I’d normally inject Toc.
Bachblues
in
PMRGCAuk
3 years ago
Should I have my ovaries removed?
Hi, anyone out there had subtotal hysterectomy and then had ovaries removed at a later date? Are you pain free now? How has having a surgical menopause effected you? I am on a waiting list to have ovaries removed but I’m really unsure if it’s what I want. Thank you Bunnyrunning xxx
Hi, anyone out there had subtotal hysterectomy and then had ovaries removed at a later date? Are you pain free now? How has having a surgical menopause effected you? I am on a waiting list to have ovaries removed but I’m really unsure if it’s what I want. Thank you Bunnyrunning xxx
Bunnyrunning
in
Endometriosis UK
3 years ago
I had a laparoscopic cholecystectomy 8 days ago and still have severe wind pain. Is this normal?
I can potter around the house but if i go for a walk (even down the street) i get a severe 'stitch' like stabbing pain under left rib and intense shpulder tip pain. Also if i bend over or forward (to try and pick up kids toys) get intense pain in bottom right side of stomach and again shoulder pain.
I can potter around the house but if i go for a walk (even down the street) i get a severe 'stitch' like stabbing pain under left rib and intense shpulder tip pain. Also if i bend over or forward (to try and pick up kids toys) get intense pain in bottom right side of stomach and again shoulder pain.
Monkeymini
in
Endometriosis UK
3 years ago
Femostonnand hair
Hi there, i was on Femoston 2/10 few months after an ovary removal because I had a lot of endometriomas inside my ovary ( had two scepsi because of them few years ago) I have the left one but ovarian reserve is low. I stopped Femoston after 2 months because As soon as I started HRt my hair was shedding
Hi there, i was on Femoston 2/10 few months after an ovary removal because I had a lot of endometriomas inside my ovary ( had two scepsi because of them few years ago) I have the left one but ovarian reserve is low. I stopped Femoston after 2 months because As soon as I started HRt my hair was shedding
Lalillala
in
Menopause and Perimenopause Support
3 years ago
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