Actemra; The elephant in the room. Is it working or not working for you?

[Blurry62]

GCA Feb 2018 Prednisone therapy only.

Here I am 6 and half years later and still trying to find the sweet spot with prednisone--not too much/not too little---Just right. I am trying to reduce slowly using the DSNS program because it has always worked for me. I am, however, struggling now at 4.25/4.0 with symptoms of transient head and facial pains.{ ear, cheek bones}. I took a month to go from 4.5 to 4.25 and will take a month to drop to 4.0

Last time I visited with my GCA specialist (here in the United States) we talked about my difficulty with tapering ( my sensitivity to prednisone changes), and the elephant in the room had a BIG bright circus blanket on with the word "ACTERMA " emblazoned on it.

So I addressed my doctor, seriously and calmly because I really wanted to know; "Doctor, " I said, "How are your GCA patients doing on actemra? Are they doing very much better than me?"

He sat quiet for a few short moments , then replied in an equally serious and quiet manner , "No, they aren't. Let's keep you on the prednisone rather than try to add a big drug that could give you additional problems. I have patients that use only prednisone and they do fine. We just want to get as low as we can and still manage the GCA."

He's a good man; he is honest with me.

I know one person personally who has been on actemra for two years. I visited her recently and asked how she's doing. She is miserable and more crippled up than ever before--still on actemra and 5 mg. of prednisone (she's been on pred since 2008)

I know many of you benefit from actemra. I'm really tired, and admit to considering asking my rheumatologist for a trial run at it to see if it works well for me, too. But, I am haunted by the reality of my body's highly sensitive contrary nature. This is a big drug-- None the less, the elephant is still here swishing his tail, and I can smell him.

Please share your actemra experiences with me.

Was it a game changer?

Did you get prednisone way down or out of your life completely?

Have you had bad experiences with the drug?

Have you decided not to risk its effects?

Blurry62

[SheffieldJane]

I was really excited to try Actemra and achieved a rapid taper from 40 mgs Pred ( new GCA) to 10 mgs. From then on I struggled to get lower and didn’t feel that great, I seemed to get a lot of infections. I stopped after the year you get in the U.K. although I could have had more. I really think I have felt much worse than prior to taking Actemra now. Very disappointing ultimately . Although I got off the high doses. I don’t know if anyone shares my experience. I was diagnosed with PMR 8 years ago and GCA 4 years ago. I a stuck at 5 mgs - low energy, fatigue, malaise and some muscle pain plus’s Diverticular disease.

[Blurry62 in reply to SheffieldJane]

Thank you for responding.

[pmac22]

Actemra seemed to be working for me, I was down to 5 mg of prednisone. I always worried I about diverticulitis since I had an attack before I ever had GCA. He convinced me that since it was not cause by Actemra it would be ok to use it. I had two small attacks which were handled outside of hospital with meds. Then last April I had a very bad diverticulitis. Spent 5 days in the hospital. Even after that he wanted me to continue it. I went o a new clinic that works with vasculitis and certain auto immune diseases GCA being one. The rheumatologist stopped Actemra right away. She said she loves the drug and it works well for some but there is a black box warning for diverticulitis. She put me on methotrexate and upped my prednisone to 10mg. While in the ER for the attack I went into adrenal crisis and my blood pressure bottomed out, It was quite scary. anyways in two weeks I am having major surgery to remove part of my colon, they are afraid if I have another attack it will rupture and I will end up with emergency surgery and a colostomy. Not sure how this will effect GCA. I see my rheumatologist next week to talk about.

Peggy

[krillemy in reply to pmac22]

Hi Peggy - just a small remark. You can look forward to having your colon removed, after the recovery off cause I had mine removed in december 2022, and I fell so much better. I was told that the inflammation is chronic and it is there even between attacks. So no more pain, gas and bloated stomach and a general wellbeing, that I had forgotten exists.

[Blurry62 in reply to pmac22]

I wasn't aware of the black box warning. Thanks

[PMRpro Ambassador]

I have been on Actemra for about 16 months but for PMR, not GCA. Same dose though. It has got me from just under 20mg to 5mg - something I had only managed once in the previous 12 years on pred and with every flare of disease activity I was needing more pred to be able to function. Even I was getting fed up with the pred story and concerned it was becoming less effective. The current sticking point is adrenal function - hardly surprising after 14 years on pred, most of it above 10mg. I have absolutely no problems with the Actemra - but it has taken over a year for me to feel a subtle difference in how I feel. It does NOT work instantly and it isn't a cure, it is a very expensive steroid sparer. If I were at a low dose of pred without it, as you are, I wouldn't bother and in your case, I would not struggle, I'd accept 5mg and stick for a few months before trying another tiny step down. In fact, even with Actemra, my rheumy said he didn't think I would get below 5mg.

In the clinical trials it worked to get half of patients off pred altogether. Half don't and seem to get stuck around the 8-10mg pred level. This is due to GCA having at least 3 underlying causes for the inflammation - and biologic drugs are extremely specific, Actemra only deals with one of them, IL-6, and if your GCA involves the other two, you will require pred to manage them. Although the clinical trials demonstrated a very speedy reduction of pred dose for most patients, that was in newly diagnosed patients, not well established patients.

I was very nervous about starting Actemra but I was prepared to have a go given the amount of pred I needed. I haven't regretted it - but as I say, I was stuck at nearly 20mg with really severe myofascial pain syndrome problems that we were struggling to manage. They haven't dramatically improved but in the last month or so, something has changed, the low back pain I have struggled with is nearly gone and I am needing less in the way of painkillers. But if I had been well under 10mg pred - no, I wouldn't have wanted to try it and I don't think my rheumy would have either. He has worked on clinical trials in both GCA and PMR using Actemra and is very realistic about it - like your rheumy. Too many, in the US especially, don't appear to know how it works and haven't done the background reading if their instructions to patients are anything to go by. It doesn't work overnight and you can't look at the ESR/CRP and say that shows it is working on the disease process. It stops the inflammation - but that is because it has diverted the drip from the tap into the drain, away from the bucket.

[Blurry62 in reply to PMRpro]

Thank you so very much for all this good information and advice. It doesn't seem reasonable to start actemra if I'm at 5 mg. Three of my doctors seem to be hell-bent on getting me off prednisone. They believe it's doing a horrible amount of damage, but my goodness....if you need disease management--you NEED disease management.

[PMRpro Ambassador in reply to Blurry62]

And there is no likelihood of Actemra doing damage? If they think that, they are in cloud cuckoo land. At 5mg and below the damage being done by pred is small. As I say, after 14 years of pred at above 5mg, lots of it well above 10mg, I have no discernible problems - no diabetes, cataracts only just starting at over 70, cholesterol was high - it is far higher with Actemra! Your body needs the equivalent of about 5-7mg pred in naturally produced cortisol to function at all, reduce the pred, the cortisol will rise, so it isn't a simple equation.

[Blurry62 in reply to PMRpro]

It's been awhile, I know. Here's my update though. I have been on 3.5 prednisone for two weeks. I feel good. Just had my bloodwork done and TSH is far too low, so we have to get that straightened out. Waiting for endocrinologist to call back. Lymphocytes were low--15 on the scale diagram-- the doctor sent me. He said to drink more water. I am wearing a mask again because Covid and Flu are going around here. The Rhemy said not to go below 3 mg of prednisone. He is happy to leave me at 3.5 it seems. He mentioned Actemra again. Why? Why does he always ask about it? I basically told him everything you said up above. No sense in it since I'm at 3.5 etc.....Maybe he is afraid I'll relapse. I dunno

[PMRpro Ambassador in reply to Blurry62]

At this stage the adrenal function is as much limiting as PMR and Actemra won't stimulate that. Why are they so fixated on zero pred? And desperate to use biologics? Nuts ...

[Blurry62 in reply to PMRpro]

I think they keep asking about Actemra because they need an official record stating it was offered to me.They are covering their tails legally. Really do believe it. As you've said, especially at this point when I've made it to 3.5 --why go there? I am dropping to 3 in another week.....

[nallufl24]

My experience with Actemra has been nothing but positive. I felt a lot better after the first infusion and it just got better. I was able to get from 40 mg of prednisone to 0 in7 months. Other than some steroid withdrawal I felt like my old self. Of course I still have the same old issues. Arthritis and a slipped vertebrae but I had that before GCA.

I’ve been on Actemra for 20 months. I now do infusions at 1/2 the dose every 8 weeks instead of every 4 and I’m still doing great. The only noticeable effect has been high cholesterol. I also used to get very tired after an infusion the first couple of months but that went away.

Like all medications we all have different side effects but Actemra has been a game changer for me.

[Blurry62 in reply to nallufl24]

Thanks

[Preacherball]

I have been on Actemra for just over two years. It has generally gone well, with the exception of four respiratory infections which caused severe coughing. During these times, I ended up needing to go back up to a high dose of pred., 40 mg, to get this under control. There was debate as to whether or not this was a GCA flare or infections, but it seems most likely now it was infections. There is a black warning for this as a potential side effect. The good news is I have been off pred. since early June and I am only on Actemra now. I hope to be completely off Actemra by this time next year.

[DeepThought2]

I have been on Actemra for approx 2.5 years and now increasing the time between injections. I was diagnosed with GCA /LVV and was able to taper pred from 40mg to 0 within 5 months. No particular side effects of Actemra and I am feeling well with the same physical fitness as before disease. Working full time as University faculty member without any issues and back to 6000 km cycling per year. So only positive things to report from my side - cholesterol is a bit above the normal value but nothing to worry about.

[Blurry62 in reply to DeepThought2]

I'm glad you're doing well!

[Sharitone]

I have been on Actemra for 20 months. The only problem I 've had is 2 bouts of neutropenia, which indirectly resulted in other infections. It has enabled me to reduce below 15mg, which I could not before. I did come off pred entirely, but have had to start taking it again. However. if I had been at 4.5mg, I'm not sure that it would have been offered at all.

[Blurry62 in reply to Sharitone]

Are you in the UK?

[Sharitone in reply to Blurry62]

Yup.

[Maxslady]

I was diagnosed with GCA with a positive biopsy in May 2021, and put on 60mg prednisone. I consulted with the Mayo Clinic in late June (as soon as I could get an appt.) because I had heard about Actemra and wanted to know if they recommended it. I saw the head of their rheumatology dept., who told me that Actemra would soon become the “standard of treatment” for GCA instead of a last resort and he prescribed it for me. I began my first treatment (by infusion) in July 2021 and have been on it ever since. I was able to get completely off prednisone in one year with hardly any setbacks. I can’t say that I have noticed any side effects that I can directly attribute to Actemra. I do have some “dizziness” or unsteadiness that I have had ever since contracting the disease, so I really don’t know where it comes from. It doesn’t impact my life, however. I also experience some fatigue, but could be age - lol. I was able to go back to gym exercise classes that are pretty strenuous and I am working on getting off the pred weight. I feel very blessed to have been able to get this far with conquering GCA. Now, I am in a quandary about when to get off it. I am going to consult with my rheumatologist in September and try to develop a plan for that.

[PMRpro Ambassador in reply to Maxslady]

GCA can affect the ears too - and result in dizziness and poor balance. It doesn't always resolve with treatment, depends on how much damage was done before treatment.

[Maxslady in reply to PMRpro]

Thanks, PRMpro, for taking the time to reply. GCA damage is certainly a strong possibility that I hadn’t considered. I only had symptoms for about 3 weeks before being diagnosed, although, they were very strong and definite. How long does the disease exist before the symptoms begin?

[PMRpro Ambassador in reply to Maxslady]

Who knows - a lot of the damage must be going on before the inflammation is enough to cause symptoms. DorsetLady had had PMR symptoms for 18 months before she lost sight in one eye, by which time they couldn't deny something was wrong.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Trouble is pains weren’t typically PMR -shoulders only plus fatigue and then head issues last 3months pre diagnosis.

[PMRpro Ambassador in reply to DorsetLady]

But it was all part of GCA one assumes so had been going on for a long time pre the definite symptoms.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

For sure..,

[Blurry62 in reply to Maxslady]

What a fabulous story! You did well, didn't you. Thank you

[LemonZest11]

Hi Blurry, I have been on Actemra for around 3 years now. Initially I experienced quite severe neutropenia, but spacing the injections out to fortnightly, and then three weekly, resolved this, and the Actemra continued to work for me. I have PMR and GCA/LVV and I am now off pred altogether. It has been nearly 6 months now and I have just started injecting 4 weekly. I have to say, Actemra was a game changer for me. With you now down to 4.25mgs, you probably don’t need it. If you are managing to continue your reductions at .25mg drops, and holding there for a few weeks until you know you are feeling OK, you just might be OK without it. If not, give it a go, you can always just stop Actemra, no need to taper it. All the best.

[Blurry62 in reply to LemonZest11]

Thanks

[PMR2011]

Hi Blurry, I’ve been on Actemra for 4 years now. Am currently every 3 weeks self injection. Ut was definitely a game changer for me. It took a year ti get off Pred (was stuck at 20mg at the time). Took a year to taper off Pred (didn’t taper until 2-3 months into Actemra). Once off it took a few months (probably adrenals) until I felt really well. Now active, good energy, and no side effects. I did try stopping it almost 2 years ago, but symptoms of GCA and PMR came back. So with very short bridge of Pred I went back on Actemra. Am considering stopping it again (or may go to monthly first). The good news is, Actemra can readily just be stopped if there are issues. I do take extra care in avoiding infections.

Good luck!

[winfong]

Actemra gave me a perforated colon. So, there's that ...

[Blurry62 in reply to winfong]

That's bad.

[aladymo in reply to winfong]

Me yoo😪

[HeronNS]

I know how you feel about it being tiresome even on a low dose of pred, but I think you have a very wise doctor in your corner. As others say, if you were stuck at a higher dose then the risk/benefit balance might well be different, but low dose pred is, in the big picture, probably better than the risks of the "elephant"!

[Blurry62 in reply to HeronNS]

Thank you very much. I feel that way most of time, but start second guessing myself when the doctors try to get me off completely. My understanding is that it's not uncommon for GCA patients to be on some amount of low dose prednisone for their whole lifetime. Is that your understanding?

[DorsetLady PMRGCAuk volunteer in reply to Blurry62]

Not me … nor a few others still on here -not to mention those that were on here but now left because their GCA is in remission…

Although when diagnosed I was told I would be on Pred for at least 2years, more likely 4 years, possibly for life. Actually was 4 & half. ..no added extras.

[Blurry62 in reply to DorsetLady]

That's exciting! How did you know it was time (safe) to stop completely? Were you afraid to stop? Its been five and a half years for me. Do you ever take prednisone any? My rheumatologist said CGA is not curable and will always simmer in the background. Have you gone plant based with your diet? Taken supplements? Like turmeric & ginger? I have because I want my health back and it is something I CAN DO.

[DorsetLady PMRGCAuk volunteer in reply to Blurry62]

I just kept tapering [slowly] - and when I was down to about 2mg I woke up one day and felt different, cannot explain it exactly but as if a weight had been lifted from my shoulders [metaphorically and literally]. Not sure if it meant GCA had finally gone into remission, or adrenals suddenly sparking, but it was certainly something.

So I just continued my slow taper to zero…. and that was it.

GCA is not curable as such, but it is described as self limiting, which usually means it runs it’s own course, and although it doesn’t reoccur for most, for others it does, so I think most of us think of it as being in remission…. and are aware it could reappear, but hope it doesn’t.

I haven’t taken Pred since, apart from a very short course when my ESR went quite high following 2 replacement surgeries within a 6 month period, and GPs went into a bit of a panic thinking it could be GCA - it wasn’t.

I do have osteoarthritis, so take glucosamine for that, and as I’m still taking Calcium/VitD supplement [as recommended from last DEXA scan] also take VitK2, but no specific supplements re GCA. No special diet.

[Blurry62 in reply to DorsetLady]

I have settled comfortably at 4 mg. I am very pleased about it. I had some ear pain and my doctor thinks it's a touch of TMJ rather than GCA and has me on a trial of Flexeril --muscle relaxer- and had me get an over the counter gel for arthritic pain to rub on my cheek bones if needed. It is all helping. I will start dropping prednisone again by alternating 4.0 and 3.25 mg in another week. I am looking forward to day I wake up and feel DIFFERENT- better--as you did.

Thank you

[Blurry62 in reply to DorsetLady]

I put my response in the wrong place. It's right below. Sorry about that.

[PMRpro Ambassador in reply to Blurry62]

You write it next to the thing you are replying to - HU places it next in line in an ongoing conversation according to their ideas - they aren't always logical!

[Blurry62 in reply to DorsetLady]

well, I guess I did alright. Now I'll just was alot of space on this page instead to publicly

work it out with myself. hahah

[HeronNS in reply to Blurry62]

Some people with PMR certainly are on pred for a very long time, whether because of ongoing symptoms control or adrenal issues, I don't know. Could be either, depending on the person. I don't know what percentage of us end up on low dose pred forever, but suspect it's more likely to be uncommon. I've been on pred since mid-2015 and although PMR symptoms remain at bay even at .5 mg, I have been feeling the "deathly fatigue" more and for longer than I would like. So going very slowly with the taper, basing it more on how I feel than on any schedule. I know for all intents and purposes half a mg is hardly anything, no ill side effects for example. But I intend to keep on and at some point in the next few weeks, all remaining well, I'll start having the occasional day with zero as my "new dose" fingers crossed.