Actemra?

[Greytree]

I have been started on Actemra but don’t know if I need it. I question if I have GCA. The Dr who should be retired made a snap judgement. Even if I had GCA, can you wean from Actemra? I have had infusions (2), one in July. One in August and another is scheduled for Friday. I don’t want it if I don’t have GCA.

[PMRpro Ambassador]

Actemra can just be stopped. No weaning off required. Weekly injections are more usually used in GCA.

So the doctor should be retired - is that on grounds of age or ability? What were the symptoms that led to the diagnosis of GCA?

[Greytree in reply to PMRpro]

thanks PMRPro. he should be retired on both grounds , I believe. He has given contradictory info and , though he was an excellent doctor back in the day, at 80plus , he seems a bit not up to speed . Either way, He is part time now and has little time. Thanks for that info on Actemra! Because I don’t have Rx insurance. I have to do monthly infusions at the hospital. How does one know when you can stop Actemra? And is the Actemra or prednisone (11.5mg) harder on the body/mind? He diagnosed me on the basis of moving headaches (slight ones) at times. Some prickly scalp, Those are long gone. Chewing making my jaw tired (still have that) at times.

[PMRpro Ambassador in reply to Greytree]

Hmm - slight headaches is hardly GCA's style!! Did he put you on pred as well? Actemra is usually used alongside pred to get you of pred - and then they look at the Actemra. Since it is usually injections they usually increase the time between injections before stopping them. But I think I'd want another opinion.

[Greytree in reply to PMRpro]

I was already on prednisone prescribed for PMR by another Rheumatologist. I saw him for a second opinion and then my first rheumatologist wouldn’t discuss it with me. She would only say she disagreed and I felt shut out from her.

[PMRpro Ambassador in reply to Greytree]

Lord protect us for over-inflated egos ... She wants to get a life and remember what she said when she qualified. Some think it was a hypocritic oath ...

[Grammy80 in reply to PMRpro]

I'm lovin' it.....I'll show you ego~!!!🤯🤯 💕

[Greytree]

I am going to see the rheumatologist man this afternoon. I am going to ask him what his plan is going forward. I have only seen him once before and he had a bunch of medical students interview me about what was wrong. Today I have a 15 minute slot. I had to push to get any time with him and it’s taken six weeks to wait for the appointment. I intend to tell him, if I get the nerve, that I need someone for the long haul and assume he will be retiring. And ask him for a recommendation of someone he has trained. He might be glad to be rid of me. He took me on as a favor. Which I appreciate.

[Greytree]

So interesting. I greatly appreciate learning about your lengthy experiences. I don’t think anyone is monitoring “my labs.” They are not doing any. Will ask the rheumatologist about that today. Thanks.

[Greytree]

I am envious that your doctors talk to each other!

[Grammy80]

There IS a difference in the way that Humira works vs Actemra~~definitely a medical decision. Your doctors may all be 'cozy' but honestly....it sounds like there is so much discussion they are just going to give you what you want. From what you said...'things were at a standstill'? Sounds like they stopped your treatment until... you made up their mind??

You really have to watch that internet... answers that are quoted as medical fact-- when they are not.

[Miacaro45]

First of all, get a new doctor. Then, if the new doc believes you have GCA get a temporal artery biopsy. There is no reason to be on a medication without proof that you need it. Why did you not start on Prednisone?

[PMRpro Ambassador in reply to Miacaro45]

The TAB isn't definitive either - it is positive in as few as half of cases. And once the patient is on pred - and I suspect Actemra, its value falls even further.

[Greytree in reply to Miacaro45]

I am on prednisone. 11.5 mg. Started on 15 about a year and a half ago. Thanks

[PMR2011]

if I read your post correctly, you had PMR then got the symptoms of GCA? You were on Pred for PMR and with the GCA they added Actemra? My situation is similar in that I had PMR (for 7 years!) then developed GCA (of the LVV type). Had trouble weaning from Pred so started Actemra, it’s worked wonderful for me. Have been off Pred now for 2+ years, feel good, back to most activities. Am currently on every other week injections. Had stopped last winter but symptoms and high markers returned. Hope they sort it out for you. Unfortunately because you have PMR the likelihood of it being GCA increases.

[Greytree in reply to PMR2011]

Thanks. That makes me hopeful.

[phebamom]

Hi Greytree. (Dad2, good to hear from you.) I am on Actemra. 13 years on prednisone, with doses going as high as 60mg. Had to stay at around 20 to prevent major flares. On Actemra two years, prednisone dose is 5mg. Rheumy refuses to even discuss taking me completely off prednisone right now. Sed rate was 11 to 15 after last two infusions. Now is 40 I am guessing from an adenoid infection. But, is much better than the 80s to 100s I lived with for many years. Actemra has made a huge difference in my life. Energy improved, mental health improved, pain level greatly improved. My jaws still hurt when I chew, perhaps they always will. Jaw pain when chewing is a defining sign of GCA . So is the tingly scalp, which is usually my first symptom of a flare, and when I know I need to chill out. My advice to poster is to get a 2nd opinion, but don't give up on Actemra yet. I took it for 6 months before it began to work, really work for me.

[Greytree in reply to phebamom]

Thanks so much. All helpful.

[Greytree]

I asked my rheumatologist about closely monitoring me. He said he didn’t know what was meant by closely monitoring except for having to look out for infections of any kind. I said I thought labs were needed to see how my liver was doing and he said that was not the case. Does that make sense?

[PMRpro Ambassador]

actemrahcp.com/content/dam/...

[Greytree]

This is a most helpful link. I have sent it to a friend who is a doctor and is friends with my rheumatologist - to get his take.

[GCAfiveyearrelapse]

honestly, in my experience GCA diagnoses can be very difficult for the best doctors. Sometimes they’re easy - positive biopsy plus off-the-charts blood markers. Other times it’s minimal symptoms, normal blood markers and regular PET CT scans for traces of inflammation in the larger and medium - size arteries. I have tapered down to 2 mg pred from 80 over 12 months and have had weekly Actemra since last March. My rheumatologist still can’t look me in the eye and say my latest GCA episode (temporary loss of vision was my ONLY symptom) is actually a GCA episode! I am comfortable with my treatment plan even though there is no way to 100 percent confirm. Hoping my next scan (scheduled after I get down to zero pred) shows a decrease in “hot spots”

[Greytree in reply to GCAfiveyearrelapse]

Thanks. All good to know. Many folks seem to have fairly different experiences. I’ve never had a PET CT Scan but would like to - even if it showed nothing. No temporary blindness. Hope you are at zero Pred soon sans hot spots.

[Linda20]

Hi, I've been having weekly injections of Actemra for about 18 months for PMR on the advice of my rheumatologist. It enabled me to taper off of Prednisolone completely about 8 months ago. I feel so much better now but still have an occasional mild flare up. My rheumy has said if I can achieve 6 months flare free I can trial stopping Actemra, no staged reduction required. My bloods are a little out sometimes, eg slightly lower white cell count, but that is the Actemra and is being closely monitored. When Actemra was in short supply (due to being used as a late stage Covid treatment) I went to 2 weekly injections and found that to be less effective.

I'm very relieved to be off the Prednisolone and grateful for the health system in Australia that has enabled me to have access to Actemra weekly. It's not readily available, requiring a government health department approval for each prescription, but once you meet the criteria it is straightforward and less cost to acquire. Wishing you well with your situation.

[Greytree in reply to Linda20]

Thanks. Please Tell me what you mean by closely monitored. My rheumatologist tells me there is no reason for blood tests or any other kind of monitoring!

[Linda20 in reply to Greytree]

I have a full range of blood tests, including liver and kidney function . It was monthly when I was taking Prednisolone, Methotrexate and Actema at the same time, but now I'm only on Actemra the tests are 3 monthly. Results go to my GP and Rheumatologist. The leaflet (huge) which comes with the Actemra Pre-filled Pen gives information in at least two places regarding blood tests by a doctor. One section states; "Your doctor will perform blood tests at regular intervals during your treatment to determine if you have low white blood cell or platelet counts, or high liver enzymes or cholesterol."

Of course, monitoring may be quite different if you are having 6 monthly infusions for example. I hope this helps.

[Greytree in reply to Linda20]

it does help. Thank you! Have to find way to make this happen. The monthly Actemra infusions could last 18 months or longer.