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Actemra quit working - now what?
I should say that the pain and flares are back with a vengeance despite my labs looking the best they've looked in a decade. My hands and feet are incredibly painful. I have been on Actemra for nine months but the last three I've been flaring nonstop. I don't see the point in continuing if I'm waking
I should say that the pain and flares are back with a vengeance despite my labs looking the best they've looked in a decade. My hands and feet are incredibly painful. I have been on Actemra for nine months but the last three I've been flaring nonstop. I don't see the point in continuing if I'm waking
Nitrobunny
in
NRAS
7 years ago
Question ?
I have been diagnosed RD for almost two years. I have a terrible history of drug allergies and reactions. I recently saw my dentist who prescribe Clindamycin, for abscess. I am allergic so hives. He referred me to Endodontic Specialist. He insist on surgery or extraction. Problem: I currently have a
I have been diagnosed RD for almost two years. I have a terrible history of drug allergies and reactions. I recently saw my dentist who prescribe Clindamycin, for abscess. I am allergic so hives. He referred me to Endodontic Specialist. He insist on surgery or extraction. Problem: I currently have a
Damaged
in
NRAS
7 years ago
Finally made the move back to New Jersey.
If you recall I could not find a doctor to treat me for GCA in Florida. So since June 2014 I have been through 7 rheumatologist and a trip to the mayo clinic in Rochester New York and floundering. Have been on very high doses of prednisone for a long time and developed diabetes and several other
If you recall I could not find a doctor to treat me for GCA in Florida. So since June 2014 I have been through 7 rheumatologist and a trip to the mayo clinic in Rochester New York and floundering. Have been on very high doses of prednisone for a long time and developed diabetes and several other
Nap1
in
PMRGCAuk
7 years ago
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Lefluomide...reactions?
After a long road of MTX , Humira, Actemra biological, I popped a stage1 breast cancer. Switched to Lefluomide. $28 , not $500 copay. Any experiences? Indigestion mostly, but surprised it gives me good relief. Talk to me!
After a long road of MTX , Humira, Actemra biological, I popped a stage1 breast cancer. Switched to Lefluomide. $28 , not $500 copay. Any experiences? Indigestion mostly, but surprised it gives me good relief. Talk to me!
rooney2011
in
Cure Arthritis Community
7 years ago
CHA PAR are back..
I have been in remission for 15 months & now it's back.. My Husband passed away in Jan, within 2 weeks I started feeling like I had the flu & progressively felt worse but no real symptoms of anything going on. Finally I got so weak it took all I had to get from room to room, then My scalp started to
I have been in remission for 15 months & now it's back.. My Husband passed away in Jan, within 2 weeks I started feeling like I had the flu & progressively felt worse but no real symptoms of anything going on. Finally I got so weak it took all I had to get from room to room, then My scalp started to
beringer
in
PMRGCAuk
7 years ago
actemra
The FDA also granted priority review designation for Actemra/
RoActemra
for the treatment of GCA. The designation is based on the positive outcome of the Phase III GiACTA study evaluating Actemra/
RoActemra
in people with GCA.
The FDA also granted priority review designation for Actemra/
RoActemra
for the treatment of GCA. The designation is based on the positive outcome of the Phase III GiACTA study evaluating Actemra/
RoActemra
in people with GCA.
mamacline
in
PMRGCAuk
7 years ago
Actemra Effective at Maintaining Steroid-Free Remission In GCA
https://globalgenes.org/raredaily/genentech-phase-iii-study-shows-actemra-effective-at-maintaining-steroid-free-remission-in-patients-with-giant-cell-arteritis/
https://globalgenes.org/raredaily/genentech-phase-iii-study-shows-actemra-effective-at-maintaining-steroid-free-remission-in-patients-with-giant-cell-arteritis/
Marie1479
in
PMRGCAuk
7 years ago
Tocilizumab
Has anyone experienced infusions of this drug ( Actemra ) ? I don't believe I've seen it mentioned here. Have a wonderful Easter weekend everyone! Chris
Has anyone experienced infusions of this drug ( Actemra ) ? I don't believe I've seen it mentioned here. Have a wonderful Easter weekend everyone! Chris
8080
in
NRAS
7 years ago
Actemra issues
Anyone else having issues with the Actemra (Tocilizumab) wearing off before the next infusion? I am finding that my infusions hold for around 3 weeks. Then the pain, stiffness and fatigue set in hard! My bloodwork shows absolutely nothing for inflammation which i am thankful for as my c reactive protein
Anyone else having issues with the Actemra (Tocilizumab) wearing off before the next infusion? I am finding that my infusions hold for around 3 weeks. Then the pain, stiffness and fatigue set in hard! My bloodwork shows absolutely nothing for inflammation which i am thankful for as my c reactive protein
dwsurquhart
in
NRAS
7 years ago
GCA FLARE WITH PLUS NEW AUTOIMMUNE DISORDER
As i have shared in recent posts, my GCA flared up several months ago. I was put back on Prednisone 40mg, and have restarted the Actemra monthly infusions. I am now on Prednisone 30mg and tapering. I have also been recently diagnosed with ocular myasthenia travis. This autoimmune disorder is causing
As i have shared in recent posts, my GCA flared up several months ago. I was put back on Prednisone 40mg, and have restarted the Actemra monthly infusions. I am now on Prednisone 30mg and tapering. I have also been recently diagnosed with ocular myasthenia travis. This autoimmune disorder is causing
Joyful13
in
PMRGCAuk
7 years ago
GCA FLAREUP
I recently started a flare up with GCA. I have been off the Actemra of which I had monthly IV infusions for 10 months. I stopped the Actemra in October. During those 10 months, I slowly reduced the Prednisone to 4 mg. Several weeks ago, I began having severe frontal and temporal headaches, along with
I recently started a flare up with GCA. I have been off the Actemra of which I had monthly IV infusions for 10 months. I stopped the Actemra in October. During those 10 months, I slowly reduced the Prednisone to 4 mg. Several weeks ago, I began having severe frontal and temporal headaches, along with
Joyful13
in
PMRGCAuk
7 years ago
Actemra
Haven't posted in a while, been sick, but try to read post almost every day. Ask this question months ago if anyone is on at Actemra now wondering how they are doing. See rheumatologist tomorrow and I Dr are all pushing it. Just can't seem to get off of 40 mg. Seem to spike when I get down to 33 or
Haven't posted in a while, been sick, but try to read post almost every day. Ask this question months ago if anyone is on at Actemra now wondering how they are doing. See rheumatologist tomorrow and I Dr are all pushing it. Just can't seem to get off of 40 mg. Seem to spike when I get down to 33 or
casse
in
PMRGCAuk
7 years ago
Will GCA return?
I had GCA PMR for 3 years. Was on a monthly infusion of Actemra, I've been drug free for 8 months now & doing fine. My Husband of 59 years passed away 1 week ago & I've been a total depressed crying lump since. Do You think this could cause everything to return? I did get a 5.0 aorta ascending aneurysm
I had GCA PMR for 3 years. Was on a monthly infusion of Actemra, I've been drug free for 8 months now & doing fine. My Husband of 59 years passed away 1 week ago & I've been a total depressed crying lump since. Do You think this could cause everything to return? I did get a 5.0 aorta ascending aneurysm
beringer
in
PMRGCAuk
7 years ago
Increased shoulder, buttocks and thigh pain- PMR relapse?
I am having increasing pain in my right shoulder, buttocks, thighs. I was taken off Actemra for the GCA in November due to severe GI problems, although we are not sure if they are related. What I have been thinking is Restless Leg Syndrome, could the severe pain with the restless legs be PMR relapse.
I am having increasing pain in my right shoulder, buttocks, thighs. I was taken off Actemra for the GCA in November due to severe GI problems, although we are not sure if they are related. What I have been thinking is Restless Leg Syndrome, could the severe pain with the restless legs be PMR relapse.
Joyful13
in
PMRGCAuk
7 years ago
Roactemra
Hi I am taking actemra injections number 10 tomorrow.just wondering if any else is taking these and how are they getting on.started on enbrel in february had side effects then onto simponi now actemra.
Hi I am taking actemra injections number 10 tomorrow.just wondering if any else is taking these and how are they getting on.started on enbrel in february had side effects then onto simponi now actemra.
Trace1974
in
NRAS
8 years ago
Frightening news - White CBC of 22,000 and liver panels elevated - RA, PMR and GCA with an ALL leukemia history
The title pretty much sums it up and I'd be lying if I said I wasn't scared. I'm a pretty cool customer and when I hear hoofbeats I look for horses not zebras. I went for my Actemra infusion yesterday and had the normal blood draw which is full metabolic, CBC and ESR with liver panels. My liver numbers
The title pretty much sums it up and I'd be lying if I said I wasn't scared. I'm a pretty cool customer and when I hear hoofbeats I look for horses not zebras. I went for my Actemra infusion yesterday and had the normal blood draw which is full metabolic, CBC and ESR with liver panels. My liver numbers
Nitrobunny
in
NRAS
7 years ago
Worst Pleurisy of my lifetime - Does anyone have any wisdom for getting through this?
I woke with the worst pleurisy of my lifetime yesterday morning. Unlike prior bouts with it, this is strictly my RA acting up. No fever, pneumonia or obvious infection. Yesterday was very uncomfortable but by evening I was having some moderate relief from increased prednisone. This morning the pain
I woke with the worst pleurisy of my lifetime yesterday morning. Unlike prior bouts with it, this is strictly my RA acting up. No fever, pneumonia or obvious infection. Yesterday was very uncomfortable but by evening I was having some moderate relief from increased prednisone. This morning the pain
Nitrobunny
in
NRAS
7 years ago
Rituxan
Wow, this process is so exhausting. I have been trying to write a letter , describing my situation, for weeks. I keep getting off track. I start on Rituxan next week. It took time to get funding approved. It costs 12,000 for initial doses. Ridiculous, if you ask me. But now that it is approved, it took
Wow, this process is so exhausting. I have been trying to write a letter , describing my situation, for weeks. I keep getting off track. I start on Rituxan next week. It took time to get funding approved. It costs 12,000 for initial doses. Ridiculous, if you ask me. But now that it is approved, it took
Damaged
in
Arthritis Action
8 years ago
3rd infusion of Actemra next week (first at full dosage) hoping to hear from anyone with success when increasing dosage. Thank you!
Pain, pain, pain, pain!!!! Did I mention I'm in pain????? Ugh!!!!!!! Flaring badly from the inconsistent weather, and just short of a week out from my Actemra infusion. This will be my third infusion and first at full strength. My hands, feet, fingers and toes are swollen. My joints feel like someone
Pain, pain, pain, pain!!!! Did I mention I'm in pain????? Ugh!!!!!!! Flaring badly from the inconsistent weather, and just short of a week out from my Actemra infusion. This will be my third infusion and first at full strength. My hands, feet, fingers and toes are swollen. My joints feel like someone
Nitrobunny
in
NRAS
8 years ago
A baffling virus
Wow! What an unbelievable month of pain. I have PMR/GCA. I am in Actemra monthly infusions for the GCA, and have slowly reduced the prednisone to 4mg. However, I have developed sciatica this past month. My symptoms are severe pain in the coccyx area, lower back , right hip, and right gluteal muscles
Wow! What an unbelievable month of pain. I have PMR/GCA. I am in Actemra monthly infusions for the GCA, and have slowly reduced the prednisone to 4mg. However, I have developed sciatica this past month. My symptoms are severe pain in the coccyx area, lower back , right hip, and right gluteal muscles
Joyful13
in
PMRGCAuk
8 years ago
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