Hello, on Wednesday I have an appointment with my Rheumy who insists I should take Actemra.
I have been taking prednisone for 4 years, initially for PMRA and then for GCA. Prednisone has been hard on my skin, I have low muscular mass due to very low collagen that has affected my bone density, and hair loss. So far it has not affected my random glucose, my liver enzymes are normal. and eGFR is 91.
The side effects I have read about include:
Increase in blood pressure
Liver injury (this would be awful)
Tears in the stomach or intestines ( I have moderate diverticulosis)
General ill feeling, trouble breathing, feeling faint, lightheaded, usually weak or tired
Low red blood cells count
Pain, tingling, numbness in the hands or feet
Higher risk of cancer
These side effects are scary, and I am reluctant to take Actemra. It works only on 40% of the people.
I would appreciate your comments.
Vikinga
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Vikinga
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I hear you, currently on my sixth injection with Actemra, every second week, I already have number 4 and 5 on you list before taking Actemra from Pred. Thin skin and hair loss too, and I too have diverticulitis. Also extreme shaking every day! A fork and a glass are my enemy now, so is the computer keyboard.
Rheumy told me what to look and feel for with bowel or stomach tears, "a sharp stabbing pain, and proceed to the hospital and tell them everything."
Rheumy said to look up everything you can on the internet and "you" decide with Actemra. It took me 6 weeks to decide, and that was before I found this site. Also on an antibiotic twice a week, Resprim forte, while on Actemra.
It's a gamble, but I want to get better and really lower the Pred dose, and like they say, they have to kill you, for you to get better! Still waiting for improvement though.
I take it you have had all the scans to make sure there is no cancer in your system at present, one of my scans showed a polyp that is precancerous, waiting until April for another bowel colonoscopy, for another biopsy on that area! Rheumy is not concerned if it is cancerous, as that will be treated separately.
The GCA is more of a concern to me as quality of life is very low at the moment.
Good luck on your decision, this site is a wealth of information.
Thank you ngchgc for mentioning about not having cancer in my system. Last year I developed actinic keratosis which my GP was not worried about. However I found out that 40% of the scales or crusts lesions could become precancerous. I will get an appointment with a dermatologist as soon as possible. Actinic keratosis developed because of my excessive exposure to sunlight when I was young.
You are right, this site is a wealth of information!
None of the above apply to me!! I've been on it for 3 years and have got from 19mg pred to 7mg. It hasn't got ME entirely off pred but the improvement is unbelievable.
Don't get confused about what is said about Actemra. It only works 100% for about half of patients, i.e. to get them entirely OFF pred. It will reduce the PRED dose dramatically for pretty much everyone, but for half of patients the other mechanisms that create inflammation are present and they don't respond to Actemra which only works for inflammation caused by the cytokine IL-6. It isn't that it doesn't work at all - it is by far the best steroid sparer.
A study found NO increase in risk of cancer compared with some other biologics except non-melanoma skin cancers. We are at risk for actinic keratosis due to age and sun exposure and it can progress so it is up to us to keep an eye out anyway, they can be treated to reduce the long term risk.
However - having just reread your posts, I'm far from convinced your troubles are due to GCA and that would suggest that Actemra wouldn't be the answer anyway. Have you had the thyroid aspect investigated further? What is your CRP at at present?
Hi PMRpro, I had the thyroid checked 2 weeks ago, results were fine, this morning I had a complete blood test, I will get the results tonight. Two weeks ago CRP was 12 after 4 weeks at 20mg/day. Now after 2 weeks at 15mg I an curious to know if CRP remains the same or not I will let you know.
Hi PMRpro. I got the results of my blood test. Unfortunately, my CPR which was 12 after 4 weeks at 20mg/day prednisone increased to 28.9 after 2 weeks at 15mg prednisone. I do not have the GCA symptoms, only twinges on my head that last for a minute or so, This result leads me to believe I have an additional problem causing inflammation, may be heart problems? cancer? aneurisms? Unfortunately the health system in Ontario has collapsed and to get the medical help I need will be a struggle. My GP will not give me referrals to specialists, he dismisses my concerns. I will need to go to the Emergency Dept of the local hospital.
The Covid 19 I got in September 2024, made a mess of my CRP results. Before Covid 19 my CRP was below 5.
No - why should you assume it is another problem? There are many potential causes of raised CRP but they come with symptoms that are appropriate. I'm not in the least surprised that a 5mg drop from 20 to 15 has resulted in the CRP rising, even the 2.5mg drop we'd say was better can be too much for many people. It can take a while for the increasing inflammation to reach a level where you can feel the symptoms, a rising CRP is a warning that all is not well.
You are looking for zebras in response to the sound of horses hooves. Cardiac problems won't raise CRP like that, Advanced cancer could - but you would have other symptoms. An aneurysm doesn't happen suddenly, it develops over a long time. But Long Covid is always a possibility since you mention that. But the CRP obviously fell after that,
You made good points PMRpro. Will be discussing those with the rheumy this afternoon. As the majority of them, he thinks I should reduce pred. as soon as possible without even considering a reasonable tapering.
I have o admit that this variable CRP has stressed me a lot. Also my energy level is low, not fatigue yet, but close to it.
The autoimmune disorder saps your energy and the pred doesn't do anything there. But tapering can only run in parallel with there being enough pred to manage the current level of inflammation being created on a daily basis. They can't rush it, they have to get that right, Some people can reduce the dose faster than others - but ALL the guidelines include the caveat that the dose and taper may have to be adjusted for the individual patient - remind him of that.
Hi PMRpro, do you have a link to the prednisone tapering's from 80mg, 60mg etc published by the British Society of Rheumatology that also includes the tapering's proposed by DL?
Unfortunately some of the guidelines are now restricted access, but this is ongoing suggested regime-
Once in clinical remission [ie.all symptoms under control] -
Aim to reach 20 mg prednisolone once the patient has been in remission for 4–8 weeks From starting dose to 20mg -Reduce by 10mg every 2 weeks
From 20mg to 10mg -Reduce dose by 2.5mg every 2-4 weeks
From 10mg to zero - Reduce daily dose by 1 mg every 1–2 months
This link says same… but note the following comments -
No absolute guidelines exist as to the length of treatment with corticosteroids for GCA. It may be reasonable to maintain the patient on treatment for 2 years to lessen the chances for relapses. Even then, relapses have been reported. Some patients may need treatment for as long as 5 years. Because the incidence of new visual damage appears to decrease with disease duration, consider a repeat temporal artery biopsy before restarting corticosteroids in patients who relapse after 18-24 months.
I am 61 years old. Was diagnosed with GCA last July 2024. Had a eye stroke ..so now I have about half of my vision gone in my left eye ..I took prednisone for about 3 months then they put me on acterma I take one shot a week. Not sure why. My hair is thinning so fast …wondering if it is the shot actrema
GCA since March 2024. Treated first with just pred. then pred plus Actemra. I had the rapidly thinning hair starting 5 or so months after diagnosis. Dermatologist said hair issue was body's response to shock of the illness, which can happen with major illness, surgery, childbirth, and many people had it after covid. It's called telogen effluvium and eventually resolves. There's no specific treatment. Once the hair shedding stops new baby hairs appear. I'm at the baby hairs stage, and it's a relief not to be seeing all that falling hair!
You will find that pretty well every drug has side effects, it does not mean you will get any. No one will have all of them and a lot of people will have none of them. I took one drug after I had an operation and the first side effect listed was death!!
I've had a good experience with Actemra. I've been taking weekly injections for almost 7 months, and the only side effect I've had is possibly higher cholesterol. I'm also taking prednisone, so the cholesterol increase could be due to that. The Actemra has allowed me to taper the prednisone from 60 mg a day down to 8 in 8 months, so I'm pleased with that. I haven't had any pain from the GCA or PMR in all that time.
Age 73, on pred for 2 years now. I suddenly have serious new diverticulitis, and cannot even get a colonoscopy to see if it's cancer. 30% chance one CR surgeon said. She said it was riskiest for me to NOT have a colon resection.
Now suffering from tendinitis from 3 weeks on Cipro! Highest risk of that is over 70 on prednisone.
After looking at Actemra and Kevzara I know I wouldn't take it even if I had a doctor to prescribe it. US Medicare won't pay for it unless given injections in a dr office.
Anyone would think cipro was the only available antibiotic! I developed tendinits after about 3 days of cipro in combo with methylpred and my husband after only one dose (but he was special!!) and NO pred.
The funny thing is that for 60 years I thought I was allergic to penicillin. Reading up on it, I did a test trial and I am not at all. 90% of people who were told they were allergic are not. Most stunning is that people who have had severe reactions in the past outgrow it in 10 years. So now I can use whatever needed as I age, except Cipro.
Yes, a very common misbelief. I was given it for a simple UTI - it is specifically warned against using cipro for that! I hopped into the GP practice and suggested the diagnosis to her - "Oh, I've heard of it but never seen it before!". Me: "you have now!". Took me a year to get the achilles right.
Just out of curiosity I checked online for the price of Kevzara without insurance in the US. It's hard to find the cost, but it appears to be more than one hundred thousand a year. Actemra is around $65,000, and I know that there are cheaper forms of Tocilizumab.
Hi! I'm also in the US and just started Kevzara a little over a week ago. When I checked the prices quoted were high but not that high as high as you found. When I first call my insurance to see if it was covered under my plan she said it wasn't covered and it would be $5524/month out of pocket. I then called Kevzara and didn't qualify for co-pay since I'm on Medicare. I then called CVS Specialty pharmacy because I had received preapproval on the hope I might be able to get Kevzara and they said it had been preapproved (don't ask me by whom), and the cost was $4535 less $2695 (which insurance would pay) leaving my out of pocket cost $1834.48. Luckily, Medicare Pharmacy starting in 2025 has a yearly cap on covered prescriptions of $2,000 and Kevzara was covered. They also came out with a yearly payment plan if you are on an expensive drug. Still very expensive but fingers crossed it will be worth it if I get off/or reduce prednisone, prednisone flares, and side effects.
I have been using Actemra since 3 years . It has given me NIL side effects and has been priceless in reducing the dose of Pred
from 60 mg to 2.5 mg over 3 years .
3 years because I am using the tapering method advised on this group of wise erudite people . I started taking Actemra every week then spaced it out to every two weeks and then every three weeks and now every 1 month. In fact am wondering if once a month is now a mere placebo effect - the answer to which no doctor seems to have .
In any case I am still on it for once a month while hoping to get to zero pred whenever that happens .
I had gone to 1 mg ored but had to rebound to 2.5 mg after joint pain re-emerged .
I am getting replies with good news about the use of Actemra. Need to find out about additional problems I might have that are causing high inflammation and variable CRP .
I’ve been on Actemra for 3 months and have no side effects apart from a small amount of constipation ( so will monitor for signs of diverticulitis as my dad had it).
It’s really kicked in this last month and I’m waking with energy for the first time in 3+ years ( can open tight jars again!) and have tapered successfully from 5 to 3mg with no aches.
So if you can tolerate it I highly recommend to try. If you are the right type of PMR it seems v effective.
I understand your reluctance however I had so many horrible side effects from the Prednisone that I was willing to try it. Prednisone gave me fatty liver, kidney stones , high glucose , increased eye pressure and weight gain. All this has resolved since going off Prednisone. Best to you whatever your decision
I took the Actemra infusions. I had an immediate spike in blood pressure and a headache. Flu symptoms lasted a few days with a rash. The second infusion I needed my inhaler and also the rash was acute and I was sent to a dermatologist. My red blood count also dropped. While I felt better as far as the GCA symptoms. We have stopped the Actemra infusions. It was discussed giving Benadryl and or prednisone prior to the infusions. I am not doing it. I’m afraid of a severe reaction.
I started Actemra while tapering down from 60mg prednisone for GCA. After 7 months I was completely off pred and did weekly injections of Actemra. After 1 1/2 years of weekly injections, I am in remission from GCA. My side effects were injection site reaction for the first month or two. I took an allergy pill to remedy that. Also raised my cholesterol and triglycerides. I had a total knee replacement mid January and doc took me off Actemra to prevent infection. Since I have had no flare ups at all, my rheumatologist is keeping me off. So far Ive been fine but I know the symptoms if it should start up again... hopefully not! Good luck to you.
I've had a good experience with Actemra. I've been taking weekly injections for about 5 months now. I do not have any of the symptoms you listed.
I saw you said you did blood tests and your CRP went up when you tapered , my experience was that 15 mg Prednisone is not enough to take care of the GCA. I was started on 15mg thinking i had PMR and when my headaches did not go away they treated me for GCA and upped the dose to 60mg (which took care of the CRP) for a month and started tapering down and added the Actemra. Now I am going down 1mg every 10 days and just started on 4mg yesterday and do not feel any worst.
I was reluctant to follow the Rheumy's instructions as I thought it was too fast compared to what I read here people staying months before going down 0.5mg. he told me that is why he put me on Actemra ( even though my concern was the adrenal not producing enough cortisol). So far I do not feel worst than before. I did feel tired when I went down from 7 to 6mg, may be I am used to being tired ( yesterday I spent 4 hours cleaning and shoveling snow at my office and home after getting 12 inches of snow, and did well and totaled over 8000 steps for the first time in months ) each person reacts differently but a high dose of PRED will be tough on anyone and now I understand why my GP did not want to give it to me.
I saw that you did blood tests before you start on Actemra make sure Hepatitis was included .
Good luck to you. I hope you do not have any of the side effects.
In following this forum, one can quickly see that these conditions can effect us in different ways and there is no absolute direction to totally heal us.I was on prednisone for just over a year and then began monthly infusions of Actemra (I'm in the U.S.). I have been off prednisone for over a year and just on Actemra. I still have bruising, skin tears, and fatigue, but seem to be doing better otherwise - other organs , like liver, are being monitored and are o.k. So overall, in my case, Actemra has worked out well. It seems like all the newer drugs have very lengthy lists of side effects, enough to scare any of us away!
Hello, I took Actemra for about a year. It was good at the beginning and I was able to reduce Pred. But after about 4 months, I got EXTREME headaches. My doctor insisted it was not from the Actemra. I had to go way up on the Pred to 35mg to dim the headaches. My doctor finally realized that severe headaches are a possible side effect of Actemra, although she had never seen it before. After learning that, I weaned myself off it carefully and have been doing the slow taper of Pred ever since. No more EXTREME headaches, only regular annoying headaches, particularly after a glass or 2 of Chardonnay.
I'm almost 3 years into this journey and I'm currently on 6.5mg. Best of health to you all
Your headaches, do they wake you early morning, and resolve themselves upon standing or sitting? Stabbing pain left temple and going behind the eyes. Mine take anywhere from 20 minutes to 1 hour to resolve, then feels like a migraine for the rest of the day. If I go back to bed after 1 hour, it returns! At the moment mainly noticed 2 to 3 days after tapering pred, 5mg drop in 2 weeks, then can have for the next 3 days upon waking. then OK until the next drop. Actemra does not cause a problem there for me. Have bought 1mg pred pills for the next taper as a test, trying to get down to 15mg. GCA
Mine could come on anytime of the day or night. Just horrendous. As far as tapering headaches, those happen too but nothing like the other ones. My hips hurt as I taper down. And yes, temples, stabbing behind eyes, shooting pain inside my head, up the side, on the back, I was miserable. Good luck and good health to you!!
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