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Flare on Actemra
I’ve had monthly Actemra infusions since December and added leflunomide in February for primary diagnosis of PMR, secondary RA due to positive CCP test. (I was misdiagnosed as RA only for 2 years, finally figured out a year ago, so a 3 year journey thus far. Enbrel, Humira and Orencia were all ineffective
I’ve had monthly Actemra infusions since December and added leflunomide in February for primary diagnosis of PMR, secondary RA due to positive CCP test. (I was misdiagnosed as RA only for 2 years, finally figured out a year ago, so a 3 year journey thus far. Enbrel, Humira and Orencia were all ineffective
NEPatriots12
in
PMRGCAuk
5 years ago
surgery and actemra
I had a knee replacement 6 weeks ago. I discontinued my actemra for total of 5 weeks. Three weeks prior and 2 weeks after surgery. I had been on 6mg of prednisone for 3weeks prior to surgery and 2weeks after surgery. At 2weeks after surgery, My blood work sed 17 ( within normal) and crp was 1.05 (
I had a knee replacement 6 weeks ago. I discontinued my actemra for total of 5 weeks. Three weeks prior and 2 weeks after surgery. I had been on 6mg of prednisone for 3weeks prior to surgery and 2weeks after surgery. At 2weeks after surgery, My blood work sed 17 ( within normal) and crp was 1.05 (
mngirl
in
PMRGCAuk
5 years ago
Biologics and Lung Disease
Has anyone else been diagnosed with COPD since starting Biologics? Shortly after starting Actemra (tocilizumab) I noticed shortness of breath. I was told that I had genetic COPD but I have since read articles that Biologics could be the cause
Has anyone else been diagnosed with COPD since starting Biologics? Shortly after starting Actemra (tocilizumab) I noticed shortness of breath. I was told that I had genetic COPD but I have since read articles that Biologics could be the cause
SufferingOnHumira
in
NRAS
5 years ago
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Additional autoimmune disease now.
After 30 odd years with fibromyalgia I started developing more intense symptoms and lost 1/4 of my body weight. At that time was diagnosed with GCA /PMR . That’s was given to me 4/2017. Prescribed high dose of prednisone and got started on Actemra and in less then two years was coming along ok. Had
After 30 odd years with fibromyalgia I started developing more intense symptoms and lost 1/4 of my body weight. At that time was diagnosed with GCA /PMR . That’s was given to me 4/2017. Prescribed high dose of prednisone and got started on Actemra and in less then two years was coming along ok. Had
Aleish
in
PMRGCAuk
5 years ago
Abatacept
Hi Just been prescribed abatacept and sulfasalazine after
roactemra
stopped working.Anybody taking this and is it successful? Tracy
Hi Just been prescribed abatacept and sulfasalazine after
roactemra
stopped working.Anybody taking this and is it successful? Tracy
Trace1974
in
NRAS
5 years ago
GCA and Actemra.
Hello all, I have been on Actemra (tocilizumab) for GCA for 1 yr 9 months. I was on the drug trial. For me it has been marvellous and I started at one injection per week, self injecting and am just starting one every 4 weeks. This first four week one meant that right on the last day of the four weeks
Hello all, I have been on Actemra (tocilizumab) for GCA for 1 yr 9 months. I was on the drug trial. For me it has been marvellous and I started at one injection per week, self injecting and am just starting one every 4 weeks. This first four week one meant that right on the last day of the four weeks
christine2715
in
PMRGCAuk
5 years ago
Can I cope?
I have GCA and PMR and the GCA is much better thanks to Actemra (tocilizumab) injections. I have recently reduced to one every four weeks. On the last day before the injection the right side of my scalp and temple was really sore to the touch.Luckily was gone by morning and I am fine now. I do still
I have GCA and PMR and the GCA is much better thanks to Actemra (tocilizumab) injections. I have recently reduced to one every four weeks. On the last day before the injection the right side of my scalp and temple was really sore to the touch.Luckily was gone by morning and I am fine now. I do still
christine2715
in
PMRGCAuk
5 years ago
Reduce 5 or less
So just took ESR and CRP. CRP normal waiting on ESR Had to go up to 40 because of eye infection. Blood markets went up and I got scared. I have been up-and-down since 2015. Recently had Eye surgery then got ear infection. Then pulmonary embolism. So I am on blood thinners and 20 mg of prednisone and
So just took ESR and CRP. CRP normal waiting on ESR Had to go up to 40 because of eye infection. Blood markets went up and I got scared. I have been up-and-down since 2015. Recently had Eye surgery then got ear infection. Then pulmonary embolism. So I am on blood thinners and 20 mg of prednisone and
Nap1
in
PMRGCAuk
5 years ago
Actemra biological injection for Rhuematoid Arthritis
Could anyone help me please. You have been injecting myself now for about 6 months. I hate doing it. Sometimes the needle goes in the skin easier than other times. I pinch the skin and wait fir the needle to get room temperature. This morning when I done it it took ages to try and get it in. Am I
Could anyone help me please. You have been injecting myself now for about 6 months. I hate doing it. Sometimes the needle goes in the skin easier than other times. I pinch the skin and wait fir the needle to get room temperature. This morning when I done it it took ages to try and get it in. Am I
Ruffles13
in
NRAS
5 years ago
GCA is vision damage permanent?
Hi. 75 yr old male from WI USA. Early last fall I had a sudden attack of GCA which resulted in 75% loss of vision in one eye followed by the second eye a bout 10 days later. GCA was diagnosed one day after my second eye went bad. I was put on Pred for a few months and then phased off and now receive
Hi. 75 yr old male from WI USA. Early last fall I had a sudden attack of GCA which resulted in 75% loss of vision in one eye followed by the second eye a bout 10 days later. GCA was diagnosed one day after my second eye went bad. I was put on Pred for a few months and then phased off and now receive
Dknutson1944
in
PMRGCAuk
5 years ago
Anyone had low blood platelets?
Been on the Biologic
Roactemra
since September I am in the so called Medical Remission. Its been incredible to feel 'normal' what ever that is!!
Been on the Biologic
Roactemra
since September I am in the so called Medical Remission. Its been incredible to feel 'normal' what ever that is!!
Mouseling
in
NRAS
5 years ago
Roactemra not working
Hi I have been in
roactemra
injections 2.5 years and now has stopped working.Has this happened anyone else?
Hi I have been in
roactemra
injections 2.5 years and now has stopped working.Has this happened anyone else?
Trace1974
in
NRAS
5 years ago
Cannabidiol (CBD) and GCA treatment - all narratives welcome
If anyone has any commentary about using Cannabidiol ( CBD) for use in treating GCA or PMR or any form of Arteritis, it will be helpful to know of your experience, dosage, duration, method of usage. I have started on Actemra weekly SC at 162 mg since last week as treatment for my GCA with 45 mg pred
If anyone has any commentary about using Cannabidiol ( CBD) for use in treating GCA or PMR or any form of Arteritis, it will be helpful to know of your experience, dosage, duration, method of usage. I have started on Actemra weekly SC at 162 mg since last week as treatment for my GCA with 45 mg pred
Iwillwin123
in
PMRGCAuk
5 years ago
For our GCAPro. Surgery/relapse
In February I had minor eye surgery. At 10 mg plus Actemra.I stopped Actemra two weeks prior and developed an ear infection at the third week. It was quite horrible antibiotics and pain meds. ESR jumped to 30 and CRP to14. Went back up to 40 mg numbers came down. Reducing 5 mg a week. In the interim
In February I had minor eye surgery. At 10 mg plus Actemra.I stopped Actemra two weeks prior and developed an ear infection at the third week. It was quite horrible antibiotics and pain meds. ESR jumped to 30 and CRP to14. Went back up to 40 mg numbers came down. Reducing 5 mg a week. In the interim
Nap1
in
PMRGCAuk
5 years ago
Bit of a GCA dilemma
Hello, as ever so grateful for this forum! Not sure anyone has been in a similar situation but here goes.... Diagnosed in 2011 with PMR, then GCA in 2017 (hoarseness was a symptom). Have been on weekly Actemra for a year and off Pred since January, feeling good. Almost 4 weeks ago got a cold. Lasted
Hello, as ever so grateful for this forum! Not sure anyone has been in a similar situation but here goes.... Diagnosed in 2011 with PMR, then GCA in 2017 (hoarseness was a symptom). Have been on weekly Actemra for a year and off Pred since January, feeling good. Almost 4 weeks ago got a cold. Lasted
PMR2011
in
PMRGCAuk
5 years ago
Suffering on Humira
New to the group and hoping for insight. I have had four Humira infusions. The first three really did not help with my pain level but I wasn’t having any side effects. After my last injection (#5), I’ve had extreme shoulder pain, stiff painful neck and daily extreme headache. Are these typical symptoms
New to the group and hoping for insight. I have had four Humira infusions. The first three really did not help with my pain level but I wasn’t having any side effects. After my last injection (#5), I’ve had extreme shoulder pain, stiff painful neck and daily extreme headache. Are these typical symptoms
SufferingOnHumira
in
NRAS
5 years ago
Actemra - What is the subcutaneous injection duration for GCA - urgent Info request
I have GCA confirmed. I must start on Actemra subcutaneous injection of 162 mg . I very urgently need the following information 1. What should be the duration of the injection ? 2. What was the experience short term or long term ? 3. How many injections were given to you and continued injection at
I have GCA confirmed. I must start on Actemra subcutaneous injection of 162 mg . I very urgently need the following information 1. What should be the duration of the injection ? 2. What was the experience short term or long term ? 3. How many injections were given to you and continued injection at
Iwillwin123
in
PMRGCAuk
5 years ago
Pain and methotrexate.
How long does it usually take for methotrexate to bring pain down? I’m just struggling all the time without the Actemra, that I was on for over a year. I refuse to go back to double digits prednisone. As long as I’m just in pain without any life threatening stuff, I will not go above the 7ngs that
How long does it usually take for methotrexate to bring pain down? I’m just struggling all the time without the Actemra, that I was on for over a year. I refuse to go back to double digits prednisone. As long as I’m just in pain without any life threatening stuff, I will not go above the 7ngs that
Aleish
in
PMRGCAuk
5 years ago
Me and biologics
Morning all. Am starting my 3rd biologic soon. I had Benepali, taken off after 5 injections. Then I had Actemra, taken off after 5 injections. Fingers crossed, Orancia next. My white cells kept dropping. 0.5. The last one seemed to be working too. What a shame. My white cells, neutrophils, are very sensitive
Morning all. Am starting my 3rd biologic soon. I had Benepali, taken off after 5 injections. Then I had Actemra, taken off after 5 injections. Fingers crossed, Orancia next. My white cells kept dropping. 0.5. The last one seemed to be working too. What a shame. My white cells, neutrophils, are very sensitive
crazylady57
in
NRAS
5 years ago
Tocilizumab and demyelination
I finally had the muscle biopsy yesterday. It was a much bigger deal than I expected, the Neurologist himself performed the procedure with at least 5 other people helping in the OR, like major surgery. A few days before, I had lunch with a Neurologist, a friend who was in the same med school class as
I finally had the muscle biopsy yesterday. It was a much bigger deal than I expected, the Neurologist himself performed the procedure with at least 5 other people helping in the OR, like major surgery. A few days before, I had lunch with a Neurologist, a friend who was in the same med school class as
Gaijin
in
PMRGCAuk
5 years ago
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