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Are you/have you been on Actemra for GCA? Feedback required
There is a request on the VasculitisUK forum looking for patient experiences: https://healthunlocked.com/vasculitis-uk/posts/135990337/giant-cell-arteritis-and-tocilizumab-patient-experience-needed Suzy and John would be delighted if you would have a look and contribute. I have told her that many of
There is a request on the VasculitisUK forum looking for patient experiences: https://healthunlocked.com/vasculitis-uk/posts/135990337/giant-cell-arteritis-and-tocilizumab-patient-experience-needed Suzy and John would be delighted if you would have a look and contribute. I have told her that many of
PMRpro
Ambassador
in
PMRGCAuk
7 years ago
Flare up
Hi woke up this morning with red knuckles seem to be having a flare up all my joints hurt.This seems to be my worst flate up sonce starting
roactemra
in september.Feel crapy and down today with pain.Hoping will pass so i dont have to go to gp.
Hi woke up this morning with red knuckles seem to be having a flare up all my joints hurt.This seems to be my worst flate up sonce starting
roactemra
in september.Feel crapy and down today with pain.Hoping will pass so i dont have to go to gp.
Trace1974
in
NRAS
7 years ago
Back to square one with GCA
Just to refresh your recollection. I moved from Florida to New Jersey to see a special doctor in New York City because in Florida I had no guidance whatsoever. So at the end of April I met my new Doctor Who did the trials for a Actemra. I was then on 30 mg with some serious steroid myopathy. His
Just to refresh your recollection. I moved from Florida to New Jersey to see a special doctor in New York City because in Florida I had no guidance whatsoever. So at the end of April I met my new Doctor Who did the trials for a Actemra. I was then on 30 mg with some serious steroid myopathy. His
Nap1
in
PMRGCAuk
7 years ago
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Actemra and effects?
Hello I am new here and would like to know has anyone tried Actemra. I have only been taking Neproxen 500mg 2x a day until my second appointment with my Rheumatoligist. He sai d that since I have a history of non-Hodgkins Lymphoma I could not start on the normal mexotrexate and DMARDS. This is all new
Hello I am new here and would like to know has anyone tried Actemra. I have only been taking Neproxen 500mg 2x a day until my second appointment with my Rheumatoligist. He sai d that since I have a history of non-Hodgkins Lymphoma I could not start on the normal mexotrexate and DMARDS. This is all new
rbeams11
in
NRAS
7 years ago
Itching
I also have begun to itch . After five years i did not blame the ptednisone ... i blamed the actemra shot and was told to take benadryl. That did work. I have changed to the coated tablet of prednisone tho and even though i am not taking The actema right now i still itch. My glorious doctor declared
I also have begun to itch . After five years i did not blame the ptednisone ... i blamed the actemra shot and was told to take benadryl. That did work. I have changed to the coated tablet of prednisone tho and even though i am not taking The actema right now i still itch. My glorious doctor declared
30048
in
PMRGCAuk
7 years ago
Actemra FDA approved
For those of us in the US, it is great to note that the FDA has expanded the use of Actemra (tocilizumab) to treat giant cell arteritis in adults. This is the first FDA-approved therapy for GCA, granted under a breakthrough therapy designation and priority review.
For those of us in the US, it is great to note that the FDA has expanded the use of Actemra (tocilizumab) to treat giant cell arteritis in adults. This is the first FDA-approved therapy for GCA, granted under a breakthrough therapy designation and priority review.
Nruble
in
PMRGCAuk
7 years ago
Actemra being sued???
Why is actemra being sued?
Why is actemra being sued?
Buddyk
in
PMRGCAuk
7 years ago
Tocilizumab/Actemra - and biosimilars
I thought with all the discussion about using Actemra in GCA people might find this article interesting: https://scrip.pharmamedtechbi.com/-/media/Supporting-Documents/Scrip-Issue-PDFs/2017/scrip_3852.pdf?la=en Actemra's patent is due to expire in the next few years and at least 3 companies are testing
I thought with all the discussion about using Actemra in GCA people might find this article interesting: https://scrip.pharmamedtechbi.com/-/media/Supporting-Documents/Scrip-Issue-PDFs/2017/scrip_3852.pdf?la=en Actemra's patent is due to expire in the next few years and at least 3 companies are testing
PMRpro
Ambassador
in
PMRGCAuk
7 years ago
Diet instead of meds
Hi I'm 55 and have had RA for 9+ years. I take several meds including an infusion of actemra on a monthly basis. I would like to buy the Clint paddison book and try the program but I'm not sure if the book has the whole diet program. If there is anyone who has bought the book please let me know. Thanks
Hi I'm 55 and have had RA for 9+ years. I take several meds including an infusion of actemra on a monthly basis. I would like to buy the Clint paddison book and try the program but I'm not sure if the book has the whole diet program. If there is anyone who has bought the book please let me know. Thanks
Mbestaunt
in
NRAS
7 years ago
RA and teeth
Hi my husband has had RA for years now. He got an ear infection that is affecting his head,jaw. It also affected his ability to drink soda drinks because he would get an extreme pain in the jaw right under the ear. He has been on 3different antibiotics and it still is there. The first antibiotics that
Hi my husband has had RA for years now. He got an ear infection that is affecting his head,jaw. It also affected his ability to drink soda drinks because he would get an extreme pain in the jaw right under the ear. He has been on 3different antibiotics and it still is there. The first antibiotics that
bobbnlady
in
NRAS
7 years ago
Actemra uodate
Have had three shots of Actemra and have been denied by the insurance company who would like me to try Remicade ? I can get the infusion but not the shot . Doesn't make sense to me . I have begun to itch all over which is a side effect of the actemra. I was told to take Benadryl at night to relieve
Have had three shots of Actemra and have been denied by the insurance company who would like me to try Remicade ? I can get the infusion but not the shot . Doesn't make sense to me . I have begun to itch all over which is a side effect of the actemra. I was told to take Benadryl at night to relieve
30048
in
PMRGCAuk
7 years ago
Sho sho
I am a whole different stage with gca than you as I am off prednisone for a year. But am on actemra infusions and am wondering how others on the infusions feel. It is wonderful to find others who have gca....in 15 months I only know one other person.
I am a whole different stage with gca than you as I am off prednisone for a year. But am on actemra infusions and am wondering how others on the infusions feel. It is wonderful to find others who have gca....in 15 months I only know one other person.
Buddyk
in
PMRGCAuk
7 years ago
Pray and ra
What are your concerns about actemra infusions?
What are your concerns about actemra infusions?
Buddyk
in
PMRGCAuk
7 years ago
gca patients that are on infusions
Is there a place where only giant cell arteritis patients post that are done with prednisone and on actemra infusions? I only know one other person in that position in 15 months...I need to talk to someone else. Buddyk
Is there a place where only giant cell arteritis patients post that are done with prednisone and on actemra infusions? I only know one other person in that position in 15 months...I need to talk to someone else. Buddyk
Buddyk
in
PMRGCAuk
7 years ago
MRSA & RA??
I am new today. I am 41 single and have RA for 3 years. I had to stop biologic's due to getting MRSA. I was in the hospital 11 days. Had to learn to walk again. Wheel chair, walker to cane. Lost 30 days on a NEW JOB. They paid my insurance and kept my job, love them.. I had not been back to my
I am new today. I am 41 single and have RA for 3 years. I had to stop biologic's due to getting MRSA. I was in the hospital 11 days. Had to learn to walk again. Wheel chair, walker to cane. Lost 30 days on a NEW JOB. They paid my insurance and kept my job, love them.. I had not been back to my
AnnaRay
in
NRAS
7 years ago
Tapering with ACTEMRA (TCZ)
We are looking to start using TCZ as a method to taper & putting GCA into remission. My wife is at 35mg of Pred. Does anyone have experience on how fast we can taper using TCZ?
We are looking to start using TCZ as a method to taper & putting GCA into remission. My wife is at 35mg of Pred. Does anyone have experience on how fast we can taper using TCZ?
Jim-CJ
in
PMRGCAuk
7 years ago
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
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
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