I need to know if anybody out there has ever been given actemera for Giant Cell arterits

[susieq051]

What can I expect from this drug. How do they reduce prednisone. I know this injected but will find out Monday all other particular.

[Hidden]

There have been a few. Until someone surfaces I thought you might want to look at previous threads. You can use the search function to see other posts bu If you can't find it here's a link to them here are posts from the search on actemra /tcm to read.

healthunlocked.com/pmrgcauk...

[susieq051 in reply to Hidden]

Thank you will give it a look see if I can be given some beneficial knowledge

[Devoid]

I started on it last week having had steroids since June and methotrexate since August, not responded well to steroids so hopefully now will able to reduce quicker even though my consultant has said there’s a possibility I may need a low dose of steroids indefinitely. GCA has gone into inflammation in all upper body large vessels so they think this is why it’s not responded well to steroids

[susieq051 in reply to Devoid]

Thank you for the info I go on this next week. Just wanted some information trying not to be to nosy.

[Devoid]

Hi are you in the uk? That’s a surprise if you have been put on actemera if you have been diagnosed quite recently

[DorsetLady PMRGCAuk volunteer in reply to Devoid]

US resident

[susieq051 in reply to Devoid]

Out on actemera because vision cannot be controlled so he is trying take the prednisone down. This all depends on my insurance I am in the US

[Devoid in reply to susieq051]

My consultant here in the uk said he felt I would benefit from it earlier but here they have to try steroids and methotrexate first, but at least it’s free through the nhs once prescribed

[susieq051]

Yeah I have to see what my insurance says first. I now have to find A new GP before anything else is done. I have a few calls out there one person responded but the GP I am trying to get away from will have my information and I not sure I want to do this option. I have another doctor calling me sometime this week. So I hold out hope.

[Bfp1]

I haven’t been given it. Instead I am on chemo and feeling rough. I would love to be given this drug but how do I get it?

[Jim-CJ]

Hi susieq051,

My wife, who has had GCA for 5 years, has been on Actemra, weekly injections, for 2 years this coming February. Nothing but success! She is currently at 4 mgs of Prednisone and doing well.

Hope This Helps,

Jim & CJ

[susieq051 in reply to Jim-CJ]

Would like to know how high of prednisone was your wife on? How hard is this to transition to actmera ? Right now I am on 80 mgs and the inflammation is still not completely on control.

[Jim-CJ in reply to susieq051]

She started at 60, but did not start Actemra until 20. Transition was no problem.

Jim & CJ

[marantha]

I have been on Actemra since June 2018 as I didn’t respond to Leflunamide or Methotrexate. No obvious adverse effects but still had a flare when reduced Prednisolone to 5mg. Disappointed I had to go back to 10mg but now reducing again. Can’t say I ever feel “well” but reading what some folks are putting up with I’m grateful to have been given it. Good luck!

[susieq051 in reply to marantha]

Thank you for getting back to me

[confused2]

I have been on Actemra for three months now as I was having difficulty reducing prednisone. So far it is working well. Have not had the same withdrawal symptoms from the prednisone as before and have been feeling more stable. Have been able to go from 40 prednisone down to 25 reducing 5 per month. Will see my rheumy at 20 when I will start reducing more slowly.

[susieq051]

Thank you I assume you were on a higher dose with GCA right now I am on 80 mgs the inflammation is not under control hence the reason for actmera.

[luv2read]

I have been on Actemra for about 6 months. I have not had any problem with it and have had success with tapering . I was diagnosed a year ago at Mayo and they are the ones that recommended it to me telling me that it made tapering down easier and the success rate to be at a lower dose was perhaps quicker. My Rheumatologist did research on it and prescribed it for me when I was at about 20 mg of prednisone. ( I started at 65 mg).

I am at 7 mg right now, and he has informed me that I will probably be on at least 5 mg for the rest of my life. (I'm 57 yrs old). Right after I was diagnosed with GSA, he happened to be at a medical convention in Cleveland Ohio where a doctor did a whole presentation on GSA and Actemra and tapering of pred. According to this doctor who had been involved in early studies, found that patients were more successful in dealing with GSA when staying on a low dose of prednisone.

There is one side effects that I experience with Actemra and that is tiredness. It may happen on the evening of the day that I inject or sometimes it's the day after. I also know that it is pricey, but by the time I was prescribed it, my deductible was met. My doctor was very adamant about me getting some tests done before I started it. I had a colonoscopy because some clinical trials reported gastro perforation and then was checked for tuberculosis. I have blood work drawn every couple of month to check my liver as there has been some concern with how Actemra effects the liver. ALT/AST.

I hope this helps and please keep us posted!

[PMRpro Ambassador in reply to luv2read]

I'm so pleased to hear a realistic doctor!

[luv2read in reply to PMRpro]

Yes, I know I am very lucky to have found a doctor that is quite passionate about his patients. At first, it drove me crazy, but reading some of the stories on this forum has made me count my lucky stars! I would not trade him for the world.

[Devoid in reply to luv2read]

Hi can I ask if you still experience exhaustion following the injections or has that settled as the steroids have reduced?

[luv2read in reply to Devoid]

Yes, but not to the extreme that I was experiencing when I first started. I was going up to bed at 9:00 pm which is so not like me, now I can manage to stay up until 11:00, so things got better as I went along. Not to say that there aren't sometimes that it hits me pretty hard and will succumb to my bed, but nothing like at first. I would not choose not to try it because of this small side effect. I have had no other symptoms other than that. I feel like it's a small price to pay and it's only one night if that. So please do your research, talk to your doctor and I hope you have success in tapering to a lower dose of prednisone! Keep me posted and if you have any questions on how to inject, or what works best for me, let me know, I'm happy to help.

[Devoid in reply to luv2read]

Thanks for the response, now on week 2 of injections,not had any problems, but still on steroids 20 daily and methotrexate 25mg per week, just feel like the day after the methotrexate all the medication takes it’s toll and I feel wiped out. As I’ve struggled so much with the steroids I’m hoping to improve as I taper

[susieq051 in reply to Devoid]

Thank you for your feedback very helpful. I really appreciate it.

[enan-illuc in reply to luv2read]

Luv2read,

My Rheumy said I would be on 2 mg for the rest of my life. Welcome to the club.

[enan-illuc]

Susieqo51,

I have GCA and PMR and I am on Actemra and Prednisone. I have been on Actemra (Tocilizumab) for over two years and it has worked well for me. I have not had any side effects, that I know of, and it helped me to lower my Prednisone to 1.5 mg. My Rhuemy said I will be on 2 mg of Prednisone for the rest of my life but I am doing good on 1.5 mg.

I was put on the Actemra injections because I could not drop below 20 mg of Pred without a terrible Flare. I give myself the injection once every two weeks. I feel good and my "numbers" are all in line. I hope this helps.

[susieq051 in reply to enan-illuc]

Yes thank it does help. Thank you for the information

[Chrisellie]

Hi

I have been on Actemra (Tocilizumab ) since mid Feb this year. I was in the trial for Scottish NHS to approve this biological.

I started Prednisolone November 2018.

The plan is ,under normal circumstances, to taper to 0 mg pred in 6 months from starting the injections.

At the end of 12 months I will come off the injections.

The 2 year results show 50 % are still in remission after 2 years. The other 50% have relapsed. I have been told they go back on injections at that point.

I am hoping I am in the first 50%

I also get tired on the injection day and the day after, also have a small cough on the same 2 days which goes after that. ( a clearing throat type of cough)

I have more info in my profile.

Read the info that comes with the injections. Some have infusions instead of injections

Hope it all goes well for you.

[Jeanfkelly]

Hello Susieq

I was diagnosed with GCA in 2011. Since then I have been on a roller coaster of flare ups & steroids.

I h.ad a second opinion in 2015 after a major recurrence, having tapered Pred. off & lasting 8 months without, before another horrendous attack.

Since then I'm considered Refractory & with very limited success in tapering Pred down again, I was granted access to Tocilizumab ¬(Actemra).

At this stage I had been on 20mg Pred, for 2 years.

Constant Flare ups meant raising dosage for 5 days then back down to previous dose or returning to dosage where symptoms had been dealt with successfully before.

Either way, I couldn't get below 20mgs without a recurrence or a flare up.

I started Tocilizumab injections at the beginning of July this year ( 2019) and have experienced no bothersome side effects.

I have a mild sore throat from time to time.

After 3/4 weeks I started to feel really well in myself - Prednisolone has never agreed with me. I've been feeling nauseous every day since October 2011 when I was prescribed the Pred, at my local hospital by a consultant rheumatologist .

Feeling well was and is a new and very welcome experience for me

The only difficulty I have encountered is Urinary Tract Infection - not cystitis but infection requiring strong anti biotics.

I was warned that I may suffer from infections whilst on Tocilzumab as my immune system would be getting weaker.

The only diffuculty is that the Tocilizumab injections have to be stopped whilst taking antibiotics...

I lost 3 weeks due to the 1st UTI and 2 whilst I had the 2nd UTI.

This put my progress in reducing my immune system back to almost the beginning I was told.

Actemra (Tocilizumab) is used for 1 year , No reducing steroids in that time.

At the end of the course, depending on blood tests & general health, Tapering of steroids can begin.

Of course I'm not there yet so I can't give you any more info on that.

This is my last option so I'm approaching it very positively. I avoid all gatherings /meetings/

waiting rooms etc.

People don't come visiting if they have sniffles/coughs/sneezes or are on antibiotics for anything.

I wear a mask when I have surgery/hospital appointments. I wash my hands a lot and so do all other people who come into contact with me.

Of course I can't avoid every possible source of infection but I do what I can & try to live as normally as possible with the above restrictions.

I hope this helps.

Feel free to contact me if you need to know anything more

All the Best

Jean

[susieq051]

Thank you. I will see what the rheumatologist is doing in Monday will keep you updated but thank you for your input.