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Lower Abdominal pain and Tocilizumab
Tocilizumab side effects: The main thing I have noticed is a proneness to infection, like UTIs, sinus, nasal and Blepharitis. This will be because my immunity is so firmly suppressed what with Prednisalone and Tocilizumab. I was able to quickly get down from 40 mgs of Pred to 10 mgs without the usual
Tocilizumab side effects: The main thing I have noticed is a proneness to infection, like UTIs, sinus, nasal and Blepharitis. This will be because my immunity is so firmly suppressed what with Prednisalone and Tocilizumab. I was able to quickly get down from 40 mgs of Pred to 10 mgs without the usual
SheffieldJane
in
PMRGCAuk
2 years ago
Liver function tests with Tocilizumab.
My Liver function tests are slightly out of range (0-35) mine were 42 last time and 46 recently. My Rheumatologist proposes that I come off Tocilizumab and start Methotrexate . It was my understanding that Metotrexate also caused raised liver enzymes. I don’t want to alienate my lovely Rheumatologist
My Liver function tests are slightly out of range (0-35) mine were 42 last time and 46 recently. My Rheumatologist proposes that I come off Tocilizumab and start Methotrexate . It was my understanding that Metotrexate also caused raised liver enzymes. I don’t want to alienate my lovely Rheumatologist
SheffieldJane
in
PMRGCAuk
2 years ago
Can I quote you?
Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among
Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among
LemonZest11
in
PMRGCAuk
2 years ago
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Is this possibly GCA again?
I am looking for some advice please. I was diagnosed with PMR 4four years ago and this was followed by Giant Cell Arteritis. I was given 60 mgs Prenisolone and gradually tapered down. Unfortunately I had a flare a few months later and I was not given appropriate advice and the sight in my left eye
I am looking for some advice please. I was diagnosed with PMR 4four years ago and this was followed by Giant Cell Arteritis. I was given 60 mgs Prenisolone and gradually tapered down. Unfortunately I had a flare a few months later and I was not given appropriate advice and the sight in my left eye
pamela4215
in
PMRGCAuk
2 years ago
Pred sick day rules.
I'm currently on 2mg of Pred and weekly Tocilizumab and doing Ok as far as PMR and GCA symptoms go. However I've caught the dratted cold that's doing the rounds and wonder whether this means I should increase the Pred in line with the Sick Day Rules leaflet. I'm only using Paracetamol for the cold so
I'm currently on 2mg of Pred and weekly Tocilizumab and doing Ok as far as PMR and GCA symptoms go. However I've caught the dratted cold that's doing the rounds and wonder whether this means I should increase the Pred in line with the Sick Day Rules leaflet. I'm only using Paracetamol for the cold so
PastelsinArt
in
PMRGCAuk
2 years ago
JCVI advice recommending a fourth Covid jab for LVV-GCA patients on Tocilizumab?
I have been on (self-injected) Ro Actemra (Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and
I have been on (self-injected) Ro Actemra (Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and
Suzita76
in
PMRGCAuk
2 years ago
Starting tocilizumab
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
Sharitone
in
PMRGCAuk
3 years ago
Join the Virus Watch project ( in the UK)
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Suzita76
in
PMRGCAuk
3 years ago
Does anyone know whether I will experience steroid withdrawal even though I’m on tocilizumab?
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
Erikaknitssocks
in
PMRGCAuk
3 years ago
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
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
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
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
Radiation Enteritis - I feel very alone
Hi, I was diagnosed with radiation
enteritis
in April and I was in hospital over the weekend with another bowel obstruction. I also have two stomas (colostomy and an urostomy). I was told in April that I would need an ileostomy, so I would have 3 stomas and this was reiterated over the weekend.
Hi, I was diagnosed with radiation
enteritis
in April and I was in hospital over the weekend with another bowel obstruction. I also have two stomas (colostomy and an urostomy). I was told in April that I would need an ileostomy, so I would have 3 stomas and this was reiterated over the weekend.
CrochetDancer
in
Pelvic Radiation Disease Association
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
IBS with Reactive Hypoglycaemia
I got it after a bad bout of gastric
enteritis
that turned septic. I was laid up for 6 months & lost so much weight that l was only 5 stone. I now get servere right side pain, very bloated, lining loss & nausea. Two years later l collapsed & was taken to hospital with Reactive Hypoglycaemia.
I got it after a bad bout of gastric
enteritis
that turned septic. I was laid up for 6 months & lost so much weight that l was only 5 stone. I now get servere right side pain, very bloated, lining loss & nausea. Two years later l collapsed & was taken to hospital with Reactive Hypoglycaemia.
bluecat65
in
IBS Network
3 years ago
Tocilizumab and coming off prednisolone
Just looking for current advice as regards the usage of tocilizumab as an aid to getting down and off prednisolone. I met a helpful person on this site and he had been on prednisolone for many years - more than my 12 years. He told me his endocrinologist had put him on tocilizumab and he had managed
Just looking for current advice as regards the usage of tocilizumab as an aid to getting down and off prednisolone. I met a helpful person on this site and he had been on prednisolone for many years - more than my 12 years. He told me his endocrinologist had put him on tocilizumab and he had managed
Stkeyna
in
PMRGCAuk
3 years ago
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