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GCA Flare-again
Hi everyone. I won't repeat what you can read in my profile as my GCA symptoms are more unusual, but not out of the ordinary. Most recently I had reduced my pred. dose to 2mg along with weekly Actemra shots in preparation for surgery last Dec. 2nd. I'd been sailing along just fine until last Thursday
Hi everyone. I won't repeat what you can read in my profile as my GCA symptoms are more unusual, but not out of the ordinary. Most recently I had reduced my pred. dose to 2mg along with weekly Actemra shots in preparation for surgery last Dec. 2nd. I'd been sailing along just fine until last Thursday
Preacherball
in
PMRGCAuk
1 year ago
Many Thanks
The support from so many of you has meant the world to me. My husband and I have a very tough week ahead but we can do it. I’ve increased my prednisone from 4 mg to 9mg and gave myself an Actemra injection. Pain is greatly reduced! Thrush is still a problem but I’m working on it. Your support has had
The support from so many of you has meant the world to me. My husband and I have a very tough week ahead but we can do it. I’ve increased my prednisone from 4 mg to 9mg and gave myself an Actemra injection. Pain is greatly reduced! Thrush is still a problem but I’m working on it. Your support has had
Blackcatlover
in
PMRGCAuk
1 year ago
New affliction with PMR/GCA
So after 8 or so months on prednisone (started at 60 mg) for PMR and GCA, along with 10weeks of Actemra, I am down to 25 mg pred. Noticed a new problem for the last couple weeks....pain and cramping in the hands with fingers locking up. Has anyone else experienced this? And how can it be treated? It
So after 8 or so months on prednisone (started at 60 mg) for PMR and GCA, along with 10weeks of Actemra, I am down to 25 mg pred. Noticed a new problem for the last couple weeks....pain and cramping in the hands with fingers locking up. Has anyone else experienced this? And how can it be treated? It
Joseph14612
in
PMRGCAuk
1 year ago
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OUT OF BREATH
I am on Actemra which has helped me to get down to 5mg of pred a day!! But I have a problem with losing my breath, do other people have this problem?
I am on Actemra which has helped me to get down to 5mg of pred a day!! But I have a problem with losing my breath, do other people have this problem?
calicojoy41
in
PMRGCAuk
1 year ago
Stress, thrush, flare
Dear people I really need your help. My husband of 55 years has just been diagnosed with stage three cancer. I’ve been a mess. We are going to Mass General Cancer Center and after many tests we have two appointments next week to make final decisions. My blood pressure is up. I have thrush and I’m in
Dear people I really need your help. My husband of 55 years has just been diagnosed with stage three cancer. I’ve been a mess. We are going to Mass General Cancer Center and after many tests we have two appointments next week to make final decisions. My blood pressure is up. I have thrush and I’m in
Blackcatlover
in
PMRGCAuk
1 year ago
GCA starting dose relapse?
Hi Seems I might have a relapse, not that much symptoms but elevated inflammation markers so I think the reumy might want to be preemptive and ”nip it in the bud”. Have not had the meeting yet, but was more curious, what have your starting doses been at a relapse of GCA? 10/20/30/40? Depending on symptoms
Hi Seems I might have a relapse, not that much symptoms but elevated inflammation markers so I think the reumy might want to be preemptive and ”nip it in the bud”. Have not had the meeting yet, but was more curious, what have your starting doses been at a relapse of GCA? 10/20/30/40? Depending on symptoms
Gilmor
in
PMRGCAuk
1 year ago
Brief update on my lower Intestinal Tract Capsule Endoscopy.
Just to let you know that the procedure went fine. Although the camera was a little larger than an Omega 3 high strength capsule, I found that with the right mindset I swallowed it easily. The staff were a little disconcerted about my long term steroid use and the possibility of an adrenal crisis and
Just to let you know that the procedure went fine. Although the camera was a little larger than an Omega 3 high strength capsule, I found that with the right mindset I swallowed it easily. The staff were a little disconcerted about my long term steroid use and the possibility of an adrenal crisis and
SheffieldJane
in
PMRGCAuk
1 year ago
Actemra and low WBC(1.9) and low Immunoglobulin levels. Asking for your thoughts.
I had blood test recently showing low levels of WBC, ALP, and all the globulins low. Called rheumatologist to see if I should cease taking Actemra as I had read Actemtra can cause neutropenia. Her nurse called yesterday to say doctor did not think low levels from Actemra/ prednisone, and follow up with
I had blood test recently showing low levels of WBC, ALP, and all the globulins low. Called rheumatologist to see if I should cease taking Actemra as I had read Actemtra can cause neutropenia. Her nurse called yesterday to say doctor did not think low levels from Actemra/ prednisone, and follow up with
Elephants2019
in
PMRGCAuk
1 year ago
possible GCA flare post covid
I tested positive for covid on 1/10 and was coughing nonstop, fever, headache….they gave me 3 infusions of remdesivir, they said the paxlovid oral med was not a good fit with my meds. I stopped weekly Actemra inj for 2 weeks and Per my endocrinologist instructions I doubled my prednisone from 6mg to
I tested positive for covid on 1/10 and was coughing nonstop, fever, headache….they gave me 3 infusions of remdesivir, they said the paxlovid oral med was not a good fit with my meds. I stopped weekly Actemra inj for 2 weeks and Per my endocrinologist instructions I doubled my prednisone from 6mg to
pmac22
in
PMRGCAuk
1 year ago
Advice on a lower GI investigation with a swallowed camera as a hospital in-patient.
I gave up Tocilizumab /Actemra early because of lower abdominal pain and diahorrea about a year ago. My Colonoscopy showed diverticulosis and polyps which were removed. The pain etc has continued. I have been phoned by our local hospital to come in to hospital to prepare for the procedure that involves
I gave up Tocilizumab /Actemra early because of lower abdominal pain and diahorrea about a year ago. My Colonoscopy showed diverticulosis and polyps which were removed. The pain etc has continued. I have been phoned by our local hospital to come in to hospital to prepare for the procedure that involves
SheffieldJane
in
PMRGCAuk
1 year ago
ACTEMRA
Can someone tell me please who can prescribe ACTEMRA. Can a GP or has it got to be a Rheumatologist? Many thanks.
Can someone tell me please who can prescribe ACTEMRA. Can a GP or has it got to be a Rheumatologist? Many thanks.
Heather270240
in
PMRGCAuk
1 year ago
Rebound headaches?
I wrote over the weekend about the constant dull headaches I’ve been getting for 2 weeks. Tylenol worked for only a couple of hours and it would come right back. I had blood work done yesterday and everything was normal. Doctor thinks I might be having rebound headaches from the Tylenol I’ve been taking
I wrote over the weekend about the constant dull headaches I’ve been getting for 2 weeks. Tylenol worked for only a couple of hours and it would come right back. I had blood work done yesterday and everything was normal. Doctor thinks I might be having rebound headaches from the Tylenol I’ve been taking
nallufl24
in
PMRGCAuk
1 year ago
When do you stop Actemra
I have had four infusions of Actemra. I am down to 4 mg of prednisone with no real pain. I really would like to stop the Actmera due to the side affects. At what point is it okay to stop it?
I have had four infusions of Actemra. I am down to 4 mg of prednisone with no real pain. I really would like to stop the Actmera due to the side affects. At what point is it okay to stop it?
Plains
in
PMRGCAuk
1 year ago
Numbness hands, face and feet
I have had numbness in my hands, face and feet since being diagnosed with GCA in April 2022. Took my last dosage of prednisone on January 8, 2023. Weekly self injections of Actemra since August 2022. My rheumatologist has sent a referral to a neurologist to find out why the numbess is still persisting
I have had numbness in my hands, face and feet since being diagnosed with GCA in April 2022. Took my last dosage of prednisone on January 8, 2023. Weekly self injections of Actemra since August 2022. My rheumatologist has sent a referral to a neurologist to find out why the numbess is still persisting
JuneWalker
in
PMRGCAuk
1 year ago
Am I panicking?
I have been on monthly Actemra infusions for a little over a year. I got completely off of prednisone 6 months ago. Actemra helped me almost immediately. Since I started taking it I have had not one symptom of GCA until maybe now? 2 weeks ago I had a mild pain in my jaw. I thought it was odd because
I have been on monthly Actemra infusions for a little over a year. I got completely off of prednisone 6 months ago. Actemra helped me almost immediately. Since I started taking it I have had not one symptom of GCA until maybe now? 2 weeks ago I had a mild pain in my jaw. I thought it was odd because
nallufl24
in
PMRGCAuk
1 year ago
High BP, meds don't work
I am 67, female, moderately overweight, 5,8, 165# . Moderate hypertension for many years, well controlled with Losartan. Losartan stopped working, placed on Valsartan, which is basically Losartan with a water pill. Several months ago developed high BP, averaging 180/105 upon awakening, dropping
I am 67, female, moderately overweight, 5,8, 165# . Moderate hypertension for many years, well controlled with Losartan. Losartan stopped working, placed on Valsartan, which is basically Losartan with a water pill. Several months ago developed high BP, averaging 180/105 upon awakening, dropping
phebamom
in
High Blood Pressure Support
1 year ago
Weaning problem
So I started on 60 mg pred back in August 22 for PMR and GCA in the US. Been up and down for months ....I am taking the 6th Actemra inj on Monday.... My bloodwork showed inflammation numbers normal...I know about Actemra masking these numbers....I was down to 30 mg for the second time with good results
So I started on 60 mg pred back in August 22 for PMR and GCA in the US. Been up and down for months ....I am taking the 6th Actemra inj on Monday.... My bloodwork showed inflammation numbers normal...I know about Actemra masking these numbers....I was down to 30 mg for the second time with good results
Joseph14612
in
PMRGCAuk
1 year ago
Figured out what back/side issues are BUT nothing works...
Hi all....hope 2023 is starting out with less pain. So I have struggled to find a dose of pred that works for me. While I have several autoimmune conditions the PMR symptoms are different enough and are in different "locations" for the most part. But the one very debilitating issue is my back/sides
Hi all....hope 2023 is starting out with less pain. So I have struggled to find a dose of pred that works for me. While I have several autoimmune conditions the PMR symptoms are different enough and are in different "locations" for the most part. But the one very debilitating issue is my back/sides
Wallysma
in
PMRGCAuk
1 year ago
To taper Actemra or not?
Just wondering whether to take the Rheumy’s orders or follow my own instincts. I am still on 3-weekly injections of tocilizumab and have managed to taper the pred to 0.25mg. My doctor scoffed at that, she doesn’t believe that such a small amount could make a difference, and perhaps she’s right, but
Just wondering whether to take the Rheumy’s orders or follow my own instincts. I am still on 3-weekly injections of tocilizumab and have managed to taper the pred to 0.25mg. My doctor scoffed at that, she doesn’t believe that such a small amount could make a difference, and perhaps she’s right, but
LemonZest11
in
PMRGCAuk
1 year ago
Actemra injection
Hi yet another question re actemra. Can I change time of day or day I do the weekly injection? I have tried to speak to nurse but not available ....your help appreciated
Hi yet another question re actemra. Can I change time of day or day I do the weekly injection? I have tried to speak to nurse but not available ....your help appreciated
WaltzG
in
PMRGCAuk
1 year ago
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