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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 in agony. I'm running out of things to try. Perhaps Xeljanz? I'm meeting with my rheumatologist next week to discuss this latest development. I've weaned down to 5mg of prednisone and I'm going to continue to wean off despite the pain. I've been on it for far too long.

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I too feel Actemra has stopped working for me as well. I have had great success with Actemra bringing and keeping my inflammation down. Was 159 in December and within 2 months down to less than 0.2. However the pain in my feet and knees is horible. My labs make me look very healthy. However, they do not and cannot measure pain.

I have tried many pain killers with no success. Opiods give me a headache, Tylenol 3 w/codeine, does not work.

I am finding I do not sleep as i groan most of the night and wake exhausted. I need to take Zanaflex to get to sleep.

I have been looking into Zeljanz for a while now but have been told it is a cancer drug not a rheumatoid drug.

Cheers

Scott

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Hi Scott,

Your experience sounds similar to mine. No pain medication even comes close to touching the pain and I also take Zanaflex nightly which does get me to sleep but doesn't guarantee any real rest. My hands and feet are quite swollen and very painful. It's just so strange to look so good on paper and feel so wretched. It will be interesting to see what my rheumatologist thinks but I'm leaning towards quitting the Actemra and at this point I'm not so sure I want to start something new. Perhaps watch things for a few months and see what happens.

Best~

S

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I am finding that even with my crp way down, I am suffering from a lot of pain in knees feet and ankles. Also with the Actemra, I am very fatigued. This could be from the inability to get a restful nights sleep as well. Pain and sleep do not go together very well. Sort of like oil and water.

I have also noticed an increase in my eisonophils. This concerns me as it could be predisposition or early warning to a cancerous issue. I am really hoping it is not.

If you get onto the Zeljanz, please let me know it works for you. I will be very interested. I was asking for that a couple years ago when my bakers cysts turned out to show pigmented villonodular synovitis (PVNS). Zeljanz can be used to treat that issue as well.

Here is hoping that sometime in my lifetime, that the medical community can figure out what this thing is that I have.

Scott

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I will definitely let you know what my doc says about switching drugs. I'm running out of things to try and he's mentioned it as a possibility before. My labs seem to run the same way yours do. My esonophils are running low while all of my inflammation markers are low. I even have a sed rate of 1 which is something I've never had so I can see him wanting to make a case to stay on Actemra because it's fighting damage but as you said there's no lab that measures pain. I have a fairly high tolerance and even a 5 or 6 on a scale of 1 to 10 is something I'm more than happy to live with and right now the pain is so great that maneuvering to get out of bed in the morning requires some forethought and planning. I definitely join you in hoping the medical community can dx and treat all of us effectively so we can go about life in a way that doesn't involve maki f considerations for pain and joint damage.

Best~

S

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Actemra stopped working for me and I was put on Mabthera (Rituximab) which is given by infusion every 6 months. I've had 3 cycles to date and so far so good. It doesn't help with oesteo pain, but if it slows down the RA progress I'm happy. The only time I am given a cortisone is part of the protocol of this treatment, otherwise I have refused prednisone for many years because I didn't feel it helped me and the side effects were just too much.

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Be watchful with rituximab. It was very good and helped me a number of years. After 6 cycles my B cells were wiped out totally and Never regenerated. I now have to take IV IgG every four weeks for the rest of my life to keep from being constantly ill. ill. In addition had to find another RA treatment. It is not a potential side effect I was warned of, that my immune system would be forever compromised, but it is known to happen to cancer oatients on it for maintenance. Ask your doc.

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Thanks for the info, I was beginning to think it was just me! I've now had 4 cycles and know that my IgG is extremely low now and am constantly coming down with various infections. Neither my Rheumy or GP warned me of this possible effect, and neither seem too concerned with my blood results (the lab running the tests were more concerned!). My Rheumy has decided to space out the infusions to 9 months so am not due the next round until September, however I have been in so much pain over the past few months I have decided to see if I can, yet again, change treatment.

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Just make sure your B cells regenerate before your next treatment. If not regenerating Zi would definitely stop

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Thanks, my next blood test isn't due until Sept but I think I'll see my GP next week and ask for one to be done now as I've been suffering a lot of back and hip pain over the last couple of months.

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I'm happy to hear the Rituximab is working to fight your RA and the damage it causes. Actemra was amazing for a very short time and quit all together for me. It was really strange and terrible at the same time. The benefits stopped and side effects started ramping up. I cannot take MTX due to a severe allergy I developed so I wonder if I can take Rituximab without it. I've met other people who have had the same results you did with it after having Actemra fail or being unable to tolerate it. and they are all still doing well with the Rituximab. It really is an ever changing treatment and I'm grateful for every hour or even minute that I feel well. I'd like to get there again as just typing this is so very painful.

Best~

S

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I have had a number of biologics including Rituximab without MTX or other DMARD as my body does not like them very much although currently taken 200mg hydroxychloroquine with Abatacept which is working well for me. Some of the time it depends on your hospitals criteria. Rituximab did nothing for me but I am sero-negative and does seem to work best on sero positive but drug options were running out at the time a few years ago when my hospital was in the process of getting approval to give the newer biologics Tociluzimab and Abatacept. Farm

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I'm happy to hear you have a treatment that works for you. Its always good to know other people can be successful. It's very encourging. Like you, I'm seronegative. I'm fortunate enough to have access to any combination of drugs available out there but unfortunately after 13 years of going through autoimmune treatments , I've exhausted 95% of treatments and combinations available Many I developed serious allergies too including MTX and hydroxychloroquine. I don't know if being seronegative makes us more difficult to treat but I do know the Actemra's failing had been devistating. It worked so well and now it seems the swelling is absolutely out of control. This is the very worst flare I've ever had. Between the RA, PMR and GCA, it's difficult if not impossible to determine which is the primary culprit. All I know is I want off the off the prednisone.

Best~

S

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Hi there nitrobunny. I am in a similar situation to you. I started tocilizumab in January this year. My bloods look as if I'm in remission but I've had 2 major flares since starting in February an May. Also tremendous muscle aches in arms and legs. Neck ache and headaches are another problem and sore feet and knees. Although the range nurse wasnt in favour of me stopping the TOC, my range doc agreed a 2 week break to see if these symptoms reduced. 2 weeks have almost passed and all these aches and headaches and sore knees have gone away! I was sure it was the tocilizumab causing these problems and now I am even more convinced. I am due to see ra doc in July and has agreed to let me stay off the tocilizumab until then. Of course, i am only giving you the benefit of my experience as I know this drug suits a lot of people.

Best wishes in your quest for a rest from pain.

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I saw my rheumatologist yesterday for half an hour who was concerned as he's never seen me in this much pain but he made the case to continue the Actemra primarily because of my GCA that I have in addition to the RA and PMR. As I said my numbers are the best they've been in more than a decade and I had two GCA attacks early 2016 that landed me in the hospital. He places a huge value in that change because TOC is proven to fight GCA and PMR. So he gave me a depo medro injection and I am actually feeling much better. It was enough to stop the flare. However last month when I was feeling badly and had to wait an extra week because I had the flu, I was actually feeling better and when I had the infusion of TOC again I felt horribly the next day until receiving the injection yesterday. He also thinks I was weaning off the prednisone too quickly and put me back up to 10 for a week and had me start weaning in two weeks again which I absolutely hate to do. The next TOC infusion is in two weeks and if it knocks me on my tail again I am done because I, like you, really suspect it's the culprit.

Thanks so much for sharing your experience with me.

Best~

S

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Hi Nitrobunny, I am sorry I lost the thread that was more timely, but I have been following your posts here and on the GCA/PMR forum. I am on Actemra and have tapered down to 2m, but continue to flare...mainly severe pain in the feet. May I ask what your activity level is? Is it related to the amount of pain?

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Wow so much has happened since I wrote this post 10 months ago but to answer your question, I am fairly active. At present I am no longer on biologics. I’m doing the best I’ve done in decades with only prednisone which I’m down to 7 at the moment. I am still stiff and sore for the first hour or two in the morning. I was in the hospital for six days over Christmas with the flu and was very sick for two months afterward but I’ve managed to bounce back pretty well.

I know my pain level will increase if I push it but for the most part it’s fairly consistent and mostly in the morning and at the end of the day I know how much I can do in a day without “paying for it” and I try to stick to that because overdoing it will lead to pain and getting run down which makes me susceptible to infection.

I don’t know if I was much help to you but I’d there’s anything else you’d like to know from me I’m happy to try and answer you.

Best-

S

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Thank you...that information is helpful. I am very active also, but now I feel I am too active for one injection a month of Actemra and just 2m if prednisone! I was managing great, then overdid it one week and had a full flare...still recovering, but mostly just the feet. Guess the PMR will leave when it is ready and not before😊

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That’s definitely the nature of the beast isn’t it? I learned the hard way that the damage I could do by overdoing it could set me back significantly with flares that didn’t want to subside easily. Thankfully prednisone always works and can get things back to “normal”. With prednisone it seems the lowest dose that you can be comfortable and function, is the right dose. I was at 15 for quite some time and then 10 for quite a while too which is a long way from the 80 - 100 I was taking early 2016 because GCA reared it’s ugly head and landed me in the hospital.

I’m grateful to be where I am now. Still tapering slowly and effectively while maintaining a reasonable activity level. I know mornings are going to be a slow start and I know I have to shut it down at the end of the day (at a reasonable hour). I’ve gone from 13 medications to 3. I don’t know that I’ll ever get to that elusive zero on the prednisone but for now I’m happy to deal with it one day at a time. My feet and ankles get hit particularly hard as well. Walking on an uneven surface for almost any period of time can prove to be painful and even dangerous.

I truly wish you the best! Let us know how you’re doing and if you make any changes 😊

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You sure have made a lot of progress...and, if I had GCA, I would not be interested in getting off of the prednisone too soon! I still carry extra prednisone around with me! The feet and ankle pain is somewhat of a mystery because my rheumy and my podiatrist do not connect it to the PMR..? I do play tennis, golf, Pickleball and walk a lot...but even after 4-1/2 years of this I still do not manage my days very well. I think I forget to add any stress....and I am talking about everyday stress, not a major crisis. I look like there is nothing wrong with me, so people around me must think I am wacko sometimes!

This is a great forum, and, from time to time we hear from folks who are in Club Zero...but not very often. I would love to know the “average” realistic length of this disease. My rheumy said he would be happy if I were at 1-2m for the rest of my life (I am 71).

Wish you the best...

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Sorry I meant Ra nurse and Ra doc, not range. Didn't notice predictive text.

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Hi N. I have read quite a few posts from other Toc users whose bloods look fine but they feel terrible. Surely there must be something else to this phenomenon. My RA nurse told me she thought I had possibly developed fibromyalgia when I described the muscle aches and neck ache to her but I told her I thought it strange that the symptoms only started 2 weeks after starting the toc injections. I have been on the weekly injections of toc and always felt worse the day after the injection and a bit better in the 2 days before the next injection. It might be worthwhile keeping a daily log of how you feel and what symptoms you are having between now and next time you are reviewed to see if there's a pattern. I don't know a lot about GCA and PMR so I wouldn't like to comment on that but I do think that we sufferers with RA really want our meds to work and so endure a lot of pain in the hope that it will eventually help us. If you do as your rheumatologist advises with the prednisone and the toc but you still feel no better by your next appointment, maybe stopping the toc as an experiment to see how you go on would not be too much to ask.

I really sympathise with your dilemma and hope you start feeling better soon. Please let us know how you go on xx

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That's very interesting. My doc also thought it was fibro acting up as well and I'd agree it's being a little worse than normal but it's not the same pain as the RA. The GCA can be deadly in a short, sometimes very short period of time, it can also cause blindness and stroke so that's why he's making it the priority. Generally speaking if it's been a year since a GCA attack, it's considered to be in remission. It's been a little over a year and I suspect my doc isn't feeling too confident that it will stay away but if the pain continues I will ask for a short trial away from it. I can always go right back to it if need be. On the flip side I woke feeling much better from the injection so that's an improvement 😊

Thanks for your time and consideration!

Best~

S

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What does your VectraDa score indicate? It is much more reliable than the tests which show minimal inflammation etc.

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