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Update to ? Tocilizumab
I recently wrote for advice prior to starting on Tocilizumab as I was little nervous about side effects. I have now had 3 injections and my CRP is back to normal so have started to taper my prednisone down again. However I have been having sharp pains in my head, Rt temporal area, but also above and
I recently wrote for advice prior to starting on Tocilizumab as I was little nervous about side effects. I have now had 3 injections and my CRP is back to normal so have started to taper my prednisone down again. However I have been having sharp pains in my head, Rt temporal area, but also above and
Hiland
in
PMRGCAuk
3 years ago
Journey update: LVV/GCA, tocilizumab and exercise
I have been diagnosed with LVV/GCA beginning of February (though MRI/MRA and PET/CT were not fully conclusive). With the help of Tocilizumab I now arrived at 12.5 mg prednisolone per day. I know that this is a very fast taper but it worked well until now and from now on the steps will become much smaller
I have been diagnosed with LVV/GCA beginning of February (though MRI/MRA and PET/CT were not fully conclusive). With the help of Tocilizumab I now arrived at 12.5 mg prednisolone per day. I know that this is a very fast taper but it worked well until now and from now on the steps will become much smaller
DeepThought2
in
PMRGCAuk
3 years ago
Covid vaccine & PMR
Having had my vaccine today, I asked the nurse if my antibodies would produce equally as well as someone who didn’t have autoimmune issues. She said probably not but the only way to find out that would be to have an antibody test after the 2nd vaccine. I have thyroid issues, hashimotos, and PMR, has
Having had my vaccine today, I asked the nurse if my antibodies would produce equally as well as someone who didn’t have autoimmune issues. She said probably not but the only way to find out that would be to have an antibody test after the 2nd vaccine. I have thyroid issues, hashimotos, and PMR, has
Daisy1624
in
PMRGCAuk
3 years ago
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Tocilizumab extension
Hi I wrote a couple of weeks ago asking if anyone had been told that their tocilizumab was being extended. I’ve heard nothing from rheumatology or G.P but today I’ve had a txt from the company that deliver the injections to say they are delivering early March. Not sure if it’s the normal 8 weeks supply
Hi I wrote a couple of weeks ago asking if anyone had been told that their tocilizumab was being extended. I’ve heard nothing from rheumatology or G.P but today I’ve had a txt from the company that deliver the injections to say they are delivering early March. Not sure if it’s the normal 8 weeks supply
Devoid
in
PMRGCAuk
3 years ago
Nervous
Sorry I'm going a bit off piste but I feel very scared. My husband has had trouble with his mobility and memory for a couple of years and yesterday got a diagnosis of Normal postural Hydrocephalus. He has been advised to have a lumber puncture to drain some fluid to see if it temporarily improves with
Sorry I'm going a bit off piste but I feel very scared. My husband has had trouble with his mobility and memory for a couple of years and yesterday got a diagnosis of Normal postural Hydrocephalus. He has been advised to have a lumber puncture to drain some fluid to see if it temporarily improves with
Suet3942
in
PMRGCAuk
3 years ago
Tocilizumab patients and the COVID Vaccine
My Rheumatologist has let me know that it is fine for me to have the COVID Vaccine and to continue having my Tocilizumab injections. I am also on 10 mgs of Prednisalone. I have Giant Cell Arteritis/Large Vessel Vasculitis.
My Rheumatologist has let me know that it is fine for me to have the COVID Vaccine and to continue having my Tocilizumab injections. I am also on 10 mgs of Prednisalone. I have Giant Cell Arteritis/Large Vessel Vasculitis.
SheffieldJane
in
PMRGCAuk
4 years ago
Would love some advice
Hi. Firstly, I just want to say how grateful I am to have found this forum. It is invaluable and has answered some of my questions before I have even asked them - ie. blurry eyes etc. I would love some advice though if you can still put up with me. My consultant reduced my 40mg dose of prednisolone
Hi. Firstly, I just want to say how grateful I am to have found this forum. It is invaluable and has answered some of my questions before I have even asked them - ie. blurry eyes etc. I would love some advice though if you can still put up with me. My consultant reduced my 40mg dose of prednisolone
Sophiestree
in
PMRGCAuk
4 years ago
Occasional sore tongue
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
Karenjaninaz
in
PMRGCAuk
4 years ago
New Kid on the Block
Hi,everyone,just joined the group and reading the posts really feel for those suffering with fatigue, something fortunately I have never had with P.M.R..I do however get flare ups with SEVERE pain mainly in the neck and shoulders.Difficult sometimes to know whether its P.M.R. or a trapped nerve or pulled
Hi,everyone,just joined the group and reading the posts really feel for those suffering with fatigue, something fortunately I have never had with P.M.R..I do however get flare ups with SEVERE pain mainly in the neck and shoulders.Difficult sometimes to know whether its P.M.R. or a trapped nerve or pulled
BeeDee1940
in
PMRGCAuk
4 years ago
NHS rapid policy statement on Tocilizumab for GCA during the Covid-19 pandemic
Hello everyone, and I hope you are all staying safe ( and sane) in these scary times. Forgive me if someone has already brought this to people’s attention, but I only just came across this important statement put out by the NHS which most certainly affects me, and could affect other GCA sufferers who
Hello everyone, and I hope you are all staying safe ( and sane) in these scary times. Forgive me if someone has already brought this to people’s attention, but I only just came across this important statement put out by the NHS which most certainly affects me, and could affect other GCA sufferers who
Suzita76
in
PMRGCAuk
4 years ago
The Salt Room ...
Hi Everyone, thought I would tell you about what has happened to me over the last couple of days. I have been travelling quite well on 6 mgs of pred and tocilizumab jabs weekly and some girlfriends invited me to come along with them to “The Salt Room”. It sounded fab, described as a cure for all sorts
Hi Everyone, thought I would tell you about what has happened to me over the last couple of days. I have been travelling quite well on 6 mgs of pred and tocilizumab jabs weekly and some girlfriends invited me to come along with them to “The Salt Room”. It sounded fab, described as a cure for all sorts
LemonZest11
in
PMRGCAuk
4 years ago
An update on my tocilizumab experience.
Hello Everyone, from Downunder, I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly,
Hello Everyone, from Downunder, I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly,
LemonZest11
in
PMRGCAuk
4 years ago
Kate Gilbert’s book. Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition.
I just had to write to say how good this book is and I couldn’t recommend it more highly. I know many of you will already know it well but I’ve only just read it and apart from finding it full of useful information I was surprised at how enjoyable it was to read. I hadn’t bothered with it earlier in
I just had to write to say how good this book is and I couldn’t recommend it more highly. I know many of you will already know it well but I’ve only just read it and apart from finding it full of useful information I was surprised at how enjoyable it was to read. I hadn’t bothered with it earlier in
Seraphina56
in
PMRGCAuk
4 years ago
European Headache Federation recommendations for neurologists managing giant cell arteritis - 17 Mch 2020
I found this today which I hope is useful as it is very recent. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01093-7?fbclid=IwAR1i7sx8Kt7LSlfbwdRfOCRBz9By1CN1ypVSHXPORkD4ownoa_pTCc2xj0M
I found this today which I hope is useful as it is very recent. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01093-7?fbclid=IwAR1i7sx8Kt7LSlfbwdRfOCRBz9By1CN1ypVSHXPORkD4ownoa_pTCc2xj0M
Sefu
in
PMRGCAuk
4 years ago
Less than satisfactory telephone consultation
Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came
Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came
Devoid
in
PMRGCAuk
4 years ago
Giant Cell Arteritis
Hi, can someone help with describing what the double vision element is with GCA? Most of the time my eye sight feels ok... except at certain distances say watching a game of football I see two copies of the player.. if I close one eye it’s ok! Also when driving I don’t necessarily see two cars as I wouldn
Hi, can someone help with describing what the double vision element is with GCA? Most of the time my eye sight feels ok... except at certain distances say watching a game of football I see two copies of the player.. if I close one eye it’s ok! Also when driving I don’t necessarily see two cars as I wouldn
Hidden
in
PMRGCAuk
4 years ago
Advice?
Newly diagnosed with PMR. Had a tapering dose of Prednisone (50mg x3 days, 40mg x 1 week, 30mg x 1 week and now on 20mg until I go back to Rheumatologist for follow up on May 27th). She proposed 3 medications to use for the future: Tocilizumab, Methotrexate or Hydrochloraquoin (sp?). I am interested
Newly diagnosed with PMR. Had a tapering dose of Prednisone (50mg x3 days, 40mg x 1 week, 30mg x 1 week and now on 20mg until I go back to Rheumatologist for follow up on May 27th). She proposed 3 medications to use for the future: Tocilizumab, Methotrexate or Hydrochloraquoin (sp?). I am interested
DianneRose409
in
PMRGCAuk
4 years ago
Blurred vision - alternatives to Tocilizumab
One of our PMRGCAuk members has sent the following question: "My mother has GCA which unfortunately resulted in 50% sight loss across both eyes. She has been on Tocilizumab for about 8 months now, and her steroids have been gradually reduced to now nil. Initially, she was happy to be off the steroids
One of our PMRGCAuk members has sent the following question: "My mother has GCA which unfortunately resulted in 50% sight loss across both eyes. She has been on Tocilizumab for about 8 months now, and her steroids have been gradually reduced to now nil. Initially, she was happy to be off the steroids
Skinnyjonny
in
PMRGCAuk
4 years ago
I have to withhold my tocilizumab
I was taken into hospital again with cellulitis on my leg put on intravenous antibiotics and am now at home on antibiotic tablets. This means that I have to withhold my tocilizumab. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce
I was taken into hospital again with cellulitis on my leg put on intravenous antibiotics and am now at home on antibiotic tablets. This means that I have to withhold my tocilizumab. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce
Teekay2
in
PMRGCAuk
4 years ago
Slightly raised tummy right of belly button and pain
Then the
enteritis
stopped and got what I thought is constipation as very hard to pass and pebble like. During all this time there was a constant (and still is) pain just right side of belly button and it seems to me that it is swollen and hard at times.
Then the
enteritis
stopped and got what I thought is constipation as very hard to pass and pebble like. During all this time there was a constant (and still is) pain just right side of belly button and it seems to me that it is swollen and hard at times.
Mrsjulesflo
in
Crohn's and Colitis Support
4 years ago
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