Actemra
Posted , 12 users are following.
My rheumatologist is ruling out a few other things with imaging, but if she decides that I do indeed have PMR, she wants to put me on Actemra (tocilizumab). Any experience to share? She likes it because it's not a steroid, and they'll be able to get me off the prednisone. Sounds good, but the side effects!!!! "Actemra changes the way your immune system works...more likely to get infections....some...have died." Stomach tears. Increased risk of cancer, serious allergic reactions, "nervous system problems" (multiple sclerosis!). And those are just the major ones. All of a sudden, prednisone doesn't seem so bad.
0 likes, 12 replies
nick67069 susan29426
Posted
Here is a quote about one study...
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Case ReportsEffective Control of Polymyalgia Rheumatica With Tocilizumab
Al Rashidi, Abdulrahman FRCPC; Hegazi, Mohamed Osama MRCP; Mohammad, Shaimaa A. MRCP; Varghese, Alex MD
Abstract
Abstract: Despite their disadvantages, glucocorticoids (GCs) remain a mainstay of therapy for polymyalgia rheumatica (PMR). Second-line antirheumatic and immune-modulatory drugs are not infrequently required because of disease relapses during GC tapering and GC adverse effects. Therapy with methotrexate or with an anti–tumor necrosis factor drug showed modest efficacy in this situation. Tocilizumab (TCZ) is an anti–interleukin 6 receptor antibody that is being recently studied in the treatment of PMR patients who are intolerant or refractory to GCs, especially after failure of a second-line agent. We report a case of PMR in which GCs were stopped because of adverse effects despite good response. The condition responded to neither methotrexate nor etanercept. Treatment with TCZ has led to significant improvement of the patient’s clinical and biochemical PMR activity parameters, and she was kept in a solid remission for 1 year without any TCZ-related adverse effects. Tocilizumab is a promising drug in the management of PMR. Further studies are required to clearly define the indications and duration of TCZ therapy in the management of PMR.
susan29426 nick67069
Posted
Thank you, Nick, for your response and for the information. I've been on prednisone for 18 months, and am still in significant pain. If I stay on prednisone, I'll need to up the dose and then try to taper. Have never been able to get below 17.5 mg without pain. Have been motivated to taper more quickly in preparation for surgery (now at 15). But, the TCZ side effects seem even more scary than the prednisone, so may just stay on the latter and put off the surgery - fortunately that's an option. And, yes, I've been using the dead slow method that I found here, but only to go from 16 to 15 so far, and I was in pain at 16.
constance.de susan29426
Posted
I do wish doctors and rheumatologists would get off the idea of trying to force patients off Pred and then try to force them onto something even more dangerous!😡. They all seem to be paranoid about Pred.
anapp susan29426
Posted
I've never heard to reduce before surgery (on Prednisone). Usually they tell you to increase your dosage somewhat to get through the stress of the surgery. Certainly Prednisone side effects aren't good and everyone seems to tolerate them differently. But almost certainly tapering too fast is self-destructive because you will usually have to go back up and work your way down again. 17 should be too difficult to get off if you do it slowly like reduce by only l mg. a month. I think the single numbers are more difficult. I used the dead slow method to get off completely and got off, but am having problems that I think are withdrawal but am waiting for result of my cortisol level test. I didn't find the dead slow method all that slow, Wish you good luck. None of these drugs are great.
susan29426 anapp
Posted
My surgeon and my nutrition doctor (I have a whole team!) are particularly reluctant to go ahead until I get the dose down. Prednisone can interfere with healing, although I don't think that's always the case, based on what I've read here. I need to remind my surgeon that I was on 40 mg when he did the original (emergency) surgery.
anapp susan29426
Posted
That sounds about right. Really Drs. don't like to do much of any kind of procedure until you get your Prednisone levels down, unless an emergency of course. I thought the reasoning was because your body was so unstable on highe doses and risk of infection is greater.
lodgerUK_NE susan29426
Posted
The trial of TCZ is nearly completed - end date is January 2017.
TCZ is already used in RA.
Two of our members took part in the trial.
We do not know whether they were given TCZ or not, as the trials are all blind and the security is unbelievable, right down to the Consultants taking part in the trial and dealing with the actual patients do not know who is being given what.
What I do know, is that both of them had GCA and it went into remission just over 1 year down the line and now it is coming up to 3 years and still remission.
She might like it because it is not a steroid, but she should know that
until the results of the trial are out and accepted we do not know whether it is a replacement for pred or an effective steroid sparing agent.
Has she been one of the Consultants taking part in the trials?
Susan, I am not, repeat not and have never been a member of the medical profession or had any training. What I am is a patient who had GCA for 5 years and have been in remission coming up to 6th year. I did turn down all other steroid sparing agents, but if this one turns out to cut down the length of time then I would be having a rethink.
However TCZ is very, very expensive and if it does meet all the critieria, I should imagine it will be used for those people who really, really need it. Unfortunately the NHS does not have a bottomless pit - I wish I had a wand - just for a couple of hours.
Daniel1143 susan29426
Posted
I see red flags all over the place. It's no free lunch with any of these drugs. Every rheumatologist I've ever known has prescribed prednisone. Yes it has a lot of side effects, but all things considered it's still relatively safe.
tina-uk_cwall susan29426
Posted
tina-uk_cwall
Posted
alley2 susan29426
Posted
Hi Susan I have tried Actemra 600mg infusions twice once a month 7 days after the second infusion I got a really really bad infection in my bottom rear tooth left side and the infection got into my Jaw which I ended up having the 2 rear teeth removed in surgery and in ICU then in hospital for 8 days and on very strong antibiotics took days for my infectious desease Doc to work what bug I had don't think he came up with one the antibotics he used worked for 3 weeks then I got this huge rash angood teeth only recently had a full dental checkup we changed antibtics and I stayed on these for 6 weeks I had. They believe the infection came from the Actemra so we stopped treatment we were going to have infusions monthly for 6 months and the drug was not cheap. Hope this helps But I will not be going near this drug again yep I know we are all different it is a personal choice.
FlipDover_Aust susan29426
Posted
I'm due to start on tocilizumab next week, after two years of yo-yoing on pred. I've been on methotrexate for nearly a year and managed to get down to 7.5mg from 20mg a year ago (which wasn't working and making me sick).
Here in Australia it's only available if you have RA - so my rhuemy has 'reclassified' me so I'm eligible for the subsidy. A woman I work with, who has RA, has had two infusions and her CRP after only one dose was signficantly, and I mean, significantly, lower. She's really happy and has recommended I give it a try despite the dire warnings (we wouldn't take any drug if they gave us all the listed side effects).