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Actemra
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Alternative to prednisone
I am about to be tapered off prednisone and put on the biologic medication
Actemra
(Tocilizumab) as my rheumatologist says the long term effects of prednisone are very hard on the body. The
Actemra
will be self injected weekly.
I am about to be tapered off prednisone and put on the biologic medication
Actemra
(Tocilizumab) as my rheumatologist says the long term effects of prednisone are very hard on the body. The
Actemra
will be self injected weekly.
Strelitzia
in
PMRGCAuk
2 years ago
Headache for 2 weeks
I’m down to 4 mg prednisone and
Actemra
monthly infusions for past 4 months. My rheumatologist thinks I should be totally off of pred now but I followed his instructions til I got to 5. I went to 4 almost two weeks ago and have had a headache every day. It’s starting to worry me.
I’m down to 4 mg prednisone and
Actemra
monthly infusions for past 4 months. My rheumatologist thinks I should be totally off of pred now but I followed his instructions til I got to 5. I went to 4 almost two weeks ago and have had a headache every day. It’s starting to worry me.
nallufl24
in
PMRGCAuk
2 years ago
Advice please
For the second time my rheumatologist has weaned me off prednisone using
Actemra
. The first time I got to 1mg but stopped it because I had experienced constant cystitis for the 6 months I had been injecting it. That was in May 2021.
For the second time my rheumatologist has weaned me off prednisone using
Actemra
. The first time I got to 1mg but stopped it because I had experienced constant cystitis for the 6 months I had been injecting it. That was in May 2021.
Mahler2
in
PMRGCAuk
2 years ago
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Can't get on top of this flare
I didn't use the
Actemra
on 4th Feb as I had my 4th Covid vaccination that day (I've had experience of my neutrophils dipping dramatically after vaccinations and
Actemra
might make the recovery slower). A week later I took the
Actemra
again and reduced pred to 1.5mg, on 10th Feb.
I didn't use the
Actemra
on 4th Feb as I had my 4th Covid vaccination that day (I've had experience of my neutrophils dipping dramatically after vaccinations and
Actemra
might make the recovery slower). A week later I took the
Actemra
again and reduced pred to 1.5mg, on 10th Feb.
PastelsinArt
in
PMRGCAuk
2 years ago
Actemra and immune system
For someone on has been on weekly
Actemra
injections for 8 months & has had numerous respiratory infections, how concerned should they feel should they test positive for Covid 19?
For someone on has been on weekly
Actemra
injections for 8 months & has had numerous respiratory infections, how concerned should they feel should they test positive for Covid 19?
BossHoss
in
PMRGCAuk
2 years ago
GCA since October 2020 -from Virginia
I have tapered to 8mg prednisone, 10mg methotrexate, and started monthly infusion of
Actemra
in February. Still have symptoms, particularly in jaw….face feels active! I find the information posted here most helpful, as the disease, along with Covid has been a bit isolating.
I have tapered to 8mg prednisone, 10mg methotrexate, and started monthly infusion of
Actemra
in February. Still have symptoms, particularly in jaw….face feels active! I find the information posted here most helpful, as the disease, along with Covid has been a bit isolating.
Elephants2019
in
PMRGCAuk
2 years ago
Actemra and Blood pressure
Has any one else developed high blood pressure on
Actemra
. My rheumatologist doubled my
Actemra
dose last month and now my BP is out of control.
Has any one else developed high blood pressure on
Actemra
. My rheumatologist doubled my
Actemra
dose last month and now my BP is out of control.
phebamom
in
PMRGCAuk
2 years ago
When do I panic? Already did!
And he is starting me on
Actemra
injections once a week as well. I have my fingers - and toes - crossed that this will work. Again, so grateful for your responses and support through this journey.
And he is starting me on
Actemra
injections once a week as well. I have my fingers - and toes - crossed that this will work. Again, so grateful for your responses and support through this journey.
91066Jackson
in
PMRGCAuk
2 years ago
Shingles is urgent!
I had Shingles a couple of years ago while on Pred (no
Actemra
or anything) , luckily OH recognised it and I got referred straight away on a Sunday and emergency prescription supplied. It wasn't pleasant but not too bad, mostly on my head, though I still have a strange skin patch on my neck.
I had Shingles a couple of years ago while on Pred (no
Actemra
or anything) , luckily OH recognised it and I got referred straight away on a Sunday and emergency prescription supplied. It wasn't pleasant but not too bad, mostly on my head, though I still have a strange skin patch on my neck.
Roltuba
in
PMRGCAuk
2 years ago
My what a long journey!
After 10 years of PMR with GCA the last 4, I had done very well on
Actemra
. Was able to taper off Pred, then in Sept off
Actemra
. 4 glorious months off meds and it’s back! Classic PMR symptoms, along with niggles of GCA (hoarseness, ear aches) and elevated markers. Dang!
After 10 years of PMR with GCA the last 4, I had done very well on
Actemra
. Was able to taper off Pred, then in Sept off
Actemra
. 4 glorious months off meds and it’s back! Classic PMR symptoms, along with niggles of GCA (hoarseness, ear aches) and elevated markers. Dang!
PMR2011
in
PMRGCAuk
2 years ago
Root canal, two surgeries and an ablation.
I am not injecting my
Actemra
two weeks before and two weeks after my procedures. That was a tough schedule to come up with. I’m trying to deal with all my pain not associated with PMR.
I am not injecting my
Actemra
two weeks before and two weeks after my procedures. That was a tough schedule to come up with. I’m trying to deal with all my pain not associated with PMR.
Blackcatlover
in
PMRGCAuk
2 years ago
Actemra - dizziness? Nausea? Or too much wine?
Does anyone have experience with
Actemra
and dizziness? Alcohol? Under normal circumstances the amount of alcohol I consumed would NOT have had the results it did the other night. Many thanks,
Does anyone have experience with
Actemra
and dizziness? Alcohol? Under normal circumstances the amount of alcohol I consumed would NOT have had the results it did the other night. Many thanks,
GCAfiveyearrelapse
in
PMRGCAuk
2 years ago
PMR/GCA and childhood emotional abuse
I am wondering if there could be a connection between so much trauma and the development of this cluster of illnesses. 12 years on pred, 2nd year on
Actemra
. Just can't seem to get it under control. Am in therapy. Have been for 10 years. Am a very strong person, a people pleaser.
I am wondering if there could be a connection between so much trauma and the development of this cluster of illnesses. 12 years on pred, 2nd year on
Actemra
. Just can't seem to get it under control. Am in therapy. Have been for 10 years. Am a very strong person, a people pleaser.
phebamom
in
PMRGCAuk
2 years ago
Update; pred taper and back injecitons
I think the last time I lost some peripheral vision I'd gotten to 17 or 15 but hadn't been back on the
Actemra
that long. This is my second day on 10 mg. and that is a first. I don't feel anything yet, 😽 After one month, I'll be cutting one milligram per month.
I think the last time I lost some peripheral vision I'd gotten to 17 or 15 but hadn't been back on the
Actemra
that long. This is my second day on 10 mg. and that is a first. I don't feel anything yet, 😽 After one month, I'll be cutting one milligram per month.
Grammy80
in
PMRGCAuk
2 years ago
Long term low dose Pred if you have Osteoporosis
Injectin Acemtra weekly and 10mg Pred daily (never managed to get lower than 10 but fingers crossed the
Actemra
will enable to do that this time).
Injectin Acemtra weekly and 10mg Pred daily (never managed to get lower than 10 but fingers crossed the
Actemra
will enable to do that this time).
HappyDiamonds
in
PMRGCAuk
2 years ago
Actemra and positive covid
Has anyone tested positive for COVID whilst on
Actemra
inj.? If so is it o.k to carry on with inj. or should you stop until all clear.
Has anyone tested positive for COVID whilst on
Actemra
inj.? If so is it o.k to carry on with inj. or should you stop until all clear.
Petcut
in
PMRGCAuk
2 years ago
JCVI advice recommending a fourth Covid jab for LVV-GCA patients on Tocilizumab?
I have been on (self-injected) Ro
Actemra
(Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and
I have been on (self-injected) Ro
Actemra
(Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and
Suzita76
in
PMRGCAuk
2 years ago
Test other than template biopsy to confirm gca
Wishing everyone happy and healthy new year 🙏🙏 My , wife could not do template biopsy but she have symptom similar to gca headache, pressure on eye and ear ,from last 6 months ,she is on prednisone .and
actemra
is stop recently , dr tried mri head,pet scan , lumbar puncture , .esr but ,all are normal
Wishing everyone happy and healthy new year 🙏🙏 My , wife could not do template biopsy but she have symptom similar to gca headache, pressure on eye and ear ,from last 6 months ,she is on prednisone .and
actemra
is stop recently , dr tried mri head,pet scan , lumbar puncture , .esr but ,all are normal
Rajuguide
in
PMRGCAuk
2 years ago
Avoid people for 14 days after booster question please
I am on 12mg Pred and
Actemra
weekly injections and my home help had her booster today after waiting 28 days to recover from Covid. She is due to come to me on Wednesday and Im not sure whether to ask her to leave it until next week. Thanks
I am on 12mg Pred and
Actemra
weekly injections and my home help had her booster today after waiting 28 days to recover from Covid. She is due to come to me on Wednesday and Im not sure whether to ask her to leave it until next week. Thanks
HappyDiamonds
in
PMRGCAuk
2 years ago
Need Help with Reducing Pred
I started November 2019 on 40 mg of prednisone with
Actemra
to follow about two months later and felt such relief from my achey body and severe headaches. About 2 months ago I was able to go down to 2 mg of pred and still felt good (able to walk 3 miles and play tennis twice a week).
I started November 2019 on 40 mg of prednisone with
Actemra
to follow about two months later and felt such relief from my achey body and severe headaches. About 2 months ago I was able to go down to 2 mg of pred and still felt good (able to walk 3 miles and play tennis twice a week).
BrianJR
in
PMRGCAuk
2 years ago
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