gca patients that are on infusions

[Buddyk]

Is there a place where only giant cell arteritis patients post that are done with prednisone and on actemra infusions? I only know one other person in that position in 15 months...I need to talk to someone else. Buddyk

[DorsetLady PMRGCAuk volunteer]

Buddyk,

It might help if you could say where you live. This site is predominately UK based although we do have contributors from around the world.

There is also another site - patient.info.

Other than typing something like "GCA patients on Actemra" into your search engine can't help. Sorry.

[Tj2017]

Hi Buddy,

If you are in the US, Actermra has just been approved in the last 4 weeks so there are not many patients. Additionally the approval is for injections not infusions. Patients, like me, are just starting. Some started early, off label, as seen on a few posts.

From what I have seen on many post is patient expecting to continue on with Actermra as they reduce steroids and then start again if a relaspes occurs. It does appear some relaspe within the first 6 months. This is my observation only and not based on any scientific data.

Best,

Tj

[jinasc]

It has not been licensed yet for GCA in the UK. They are considering it at present.

So the only people who would be able to help are those who took part in the clinical trials and then as they did not know what combination hey were receiving as all clinical trials are 'blind'.

Unless someone who could not take prednisolone received it in an emergency situation.

However it has been licensed for the use in the UK for Rheumatoid Arthritis for quite some time.

[Jim-CJ]

Hi Buddyk,

My wife will start on Actemra in July. We live in South Carolina and she has GCA for 2 1/2 years. Our Dr recently wrote a letter to our insurance company to reduce our price. It is quite expensive. But we finally have high hopes that we can beat GCA with Actemra.

Stay In Touch,

Jim & CJ

[Buddyk in reply to Jim-CJ]

Hi Jim and CJ,

WHAT KIND OF SYMPTOMS DOES YOUR WIFE HAVE UP TO THIS POINT.? My insurance covers the actemra. ...I'm just starting my second year on it. Yes it is expensive. I have absolutely no headaches which the dr thinks the actemra is keeping away. The only thing I have is fatigue almost constantly and fuzziness in my head occasionally. Do you know others with giant cell arteritis.

Buddyk

[Jim-CJ in reply to Buddyk]

Hi Buddyk,

Right now her big problem is spontaneous fractures in her Lumbar area due to Prednisone. Can't wait to get off of that stuff! GCA is rare, but this site can keep us connected.

Thanks,

Jim & CJ

[Tj2017 in reply to Jim-CJ]

Hi Jim and CJ,

I was able to have the manufacturer of Actermra pay the difference between the insurance and the cost. You are eligible if you aren't on Medicaid. It is a program they provide and it is not based on your finances. Google Actermra and you will find the info. If not, send me a message and I'll send you the number. I don't have it with me right now. It was very easy to apply for and get approved. It took less than 15 minutes on the phone

Good luck and I hope your wife feels better soon I take my second injection tomorrow.

TJ

[Jim-CJ in reply to Tj2017]

Thanks Tj2017. Will check into that.

Jim & CJ

[PMRpro Ambassador]

The reason you haven't seen much about GCA patients on Actemra is because until very recently it has only been used in clinical trials. Until that closed the patients did not know if they were on Actemra or a placebo - as it was a double blind trial.

There are a few patients in the USA on this forum who are on it, there is one lady with PMR in Australia on the patient.info forum on it for ?PMR that did not respond to pred (it could be RA she has) and one (I think) in the US who has been on it for a while.

[Joyismami]

Hi Buddy!!

My Mother receives the Actemra infusions every four weeks. We are in Massachusetts, and she was diagnosed by biopsy (loss of vision, headaches, fatigue, jaw pain) in September 2016 with GCA. She has been taking 60 mg of Prednisone a day up until a few months ago, when she started the Actemra which was suggested to help with the Prednisone taper. Previously any attempt at getting below 30 mg of Prednisone was a fail and she was brought back up to 60 mg again. As of now she is at 10 mg of Prednisone a day. She has been living with us in our house in the in-law apartment and I left work to stay home to be with her. I will say that I have seen a difference since the infusions were started. There are no headaches at all, jaw pain is gone, vision is perfect (but was upon discharge from hospital back in Sept), and she is less fatigued than she was. She still tires very easily and gets very frustrated with that, but has learnt that giving in to the fatigue is ok, it's actually the best medicine to listen to your body. After the GCA diagnosis she had so much pain in her legs that she could hardly stand up and needed a walker. Right now she is able to move around without the walker on a regular basis. She still can not go distance without becoming fatigued but all in all she is up and about. I understand that at any time she could have a flare up and all this could change again, but we are taking every step in tapering slowly, and keeping a positive attitude..It has been very hard for me to watch this disease attack my Mom, and I have days where I think will this ever get better, but I try to keep a positive and supportive attitude with my Mom, and she knows unconditionally, I am here for her....I so hope that your wife will find great results with Actemra. I truly wish her the very best.

[Jim-CJ in reply to Joyismami]

Hi Joyismomi,

Thanks so much for this information. It keeps us optimistic of my wife's future.

Jim & CJ

[Nitrobunny]

Hi! I have been taking Actemra by infusion every four weeks since last September for my GCA and PMR (I also have RA) with some pretty remarkable results. My GCA landed me in the hospital twice in early 2016 and I was on an extremely high dose of prednisone (80) but rapidly got down to 10 in a matter of months with the Actemra. It actually works better for me for the GCA and PMR than it does for the RA but at the moment my rheumatologist was more concerned about staving off the GCA. My lab results are the best they've been in over a decade. The only thing that's out of normal range at the moment is one of my liver functions and even it isn't horrible. In the beginning my labs were all over the place but after about six months things settled down. I'm very tired for the first couple days after the infusion but it's not a sick kind of tired if that makes sense. Usually mid cycle, about two weeks, I'm doing well and in the days just prior to the infusion I can feel the PMR trying to sneak back in. Sometimes the tell tale jaw pain from the GCA will barely return but no where near the intensity. I've had that happen twice early in the process. We raised the prednisone until the infusion and then backed it off again with no issues. In the last three months there's been no sign of the GCA and PMR at all. Prior to the Actemra, I could barely walk for the first hour or two in the morning. Presently the first few steps are bad but nothing like it used to be. My RA still occasionally flares but the GCA is definitely under control. Hopefully it stays that way. There are many people at my infusion center who have taken Actemra for years with little or no issues. So that's my experience with Actemra. I know a hundred people will have 100 different outcomes but so far I'm grateful it's worked as it has.

Best~

S

[Buddyk in reply to Nitrobunny]

Your experience is closest to mine that I've come across. Only thing is I can't tell any difference before I get an infusion or right after. I have fatigue daily ..at different levels. I have started to take walks but am moving very slowly by the time I get back home. I am thankful to nit have headaches and other painful symptoms. Hoping fatigue will improve.

[Nitrobunny in reply to Buddyk]

The relief from the GCA was amazing and being able to back off the prednisone quickly was amazing. Unfortunately not long after I wrote that I had a very bad reaction and had to stop and discovered some other issues I had including a bout of vasculitis were related to the Actemra. About 6-7 months in the fatigue got worse, I had foot, ankle and leg pain that I attributed to flares, and I had an issue with cognition in general that I again attributed to the Actemra. I just wasn't on my A game and I was struggling with words at times. Something I never do. All went away after the Actemra was out of my system for a while. Many are experiencing side effects that are not listed in the patient information. If you go look at some of my other posts, there are some lengthy discussions about it. It's definitely a duel edged sword.

All that being said it definitely benefited me in helping reduce the prednisone which I have been on for a long time. I'm continuing to wean with no issues. My labs are still very, very good. The best they've been in a decade. I started Xeljanz 5 days ago. No issues so far and I'm hoping for the best because at present it's the only thing left.

Best of luck, I hope your fatigue improves and you continue to keep the vicious GCA monster away.

Best ~

S

[Klah in reply to Nitrobunny]

Hi...so it is my understanding that you had the Actemra infusions for about 9 months before having a reaction...but it did allow you to taper the prednisone 1m each month, or more! So have you continued the taper with no repercussions? The Xeljanz no doubt has an effect also.

I have had 3 infusions of Actemra....the PMR pain is gone, has been gone since shortly after the first infusion...however I did have some breast pain (one side) shortly after the last infusion...it last about 24 hours. The pain was in a breast duct that used to "back up" when I breastfed my 3 kids 30-some years ago!...a connection..? No lumps, bumps, redness, etc.

Have reduced the prednisone from 8m to 5m this week.

I think it feels good to lessen the prednisone, but worry about the long-term effects of the infusions...especially since it is not clear how long I may have to continue the infusions after I am done with the prednisone....and don't know about the possibility of recurrence. I don't think anyone knows at this point. The fatigue is greatly lessened as I reduce the prednisone.

I appreciate you sharing your experience and wish you the best....keep us posted!

[Nitrobunny in reply to Klah]

Yes the Actemra was amazing especially for the first six of the nine months. I developed vasculitis in my left foot and ankle which went away when I stopped the Actemra. We didn't realize it was a side effect until after the fact. But just to be able to reduce the prednisone as quickly as I did was amazing. My doctor is now leaning towards using Actemra either short term or intermittently with other patients as many recently had the same issues I did. That makes a lot of sense to me. I don't believe he's going to leave anyone on it long term anymore but when it worked, it worked well.

Between the Actemra and Xeljanz I continued to taper with no issues. Today is 15 days on Xeljanz and I'm still tapering and doing pretty well. I'm wary as always about the telltale jaw pain and headache. I still have the PMR pain in my hips that came back when I stopped the Actemra but the Xeljanz is doing well for my hands, fingers and other RA affected joints. I have standing orders to increase the prednisone if the jaw pain and or GCA headache returns. His words were "immediately take the prednisone and then call or get to his office". I'm hoping it doesn't come to that but it's only been 20 months since the GCA first showed up. I have no illusions about being in the clear but one can hope.

Best ~

S

[PMRpro Ambassador in reply to Nitrobunny]

I trust the vasculitis has been reported? Because you would imagine that if patients develop vasculitis when it is being used for a vasculitis it might be of concern...

[Nitrobunny in reply to PMRpro]

Oh heavens yes, I reported it and other reactions that were not on the PPI. My rheumatologist said there was 16 of us who turned up with vasculitis across the five doctor practice. He is extremely concerned. The FDA contacted me directly to go over my report and gather more information. Apparently there is some debate about the pharmaceutical company knowing of this and somehow making a case for not including it on the PPI. I don't know all of the details but it's definitely concerning and it concerned the doctors in the practice enough to call in all of their Actemra patients to re-evaluate them.

[Nitrobunny in reply to Nitrobunny]

I wrote a new post showing a photo of a television ad now airing for a class action suit. Actemra is now making the local and national news in the US for all the wrong reasons. I truly wish this were not the case.

[Klah in reply to Nitrobunny]

I also am keeping an eye on the Actemra lawsuits...however, America is an extremely litigeous society...anything goes awry and there is a lawyer calling you to join a lawsuit. I do not mean to imply that there are not justifications for lawsuits and medical malpractice or negligence, but just because it makes the news does not mean there was negligence...especially with a new drug for a new protocol.

That is why we would all prefer no drugs at all😊

[Nitrobunny in reply to Klah]

I'm not really paying attention to the lawsuits themselves nor would I even consider joining one. You're right this country is full of lawyers who spend the better part of their days chasing one thing or another. For the most part I despise them. My issue with Actemra is not the side effects but the fact that known side effects were not disclosed to patients and doctors and once the FDA was made aware of these side effects they failed to report the information in a timely manner and failed to fulfill FOIA requests. It was a shocking sight to see my doctor's office full on a weekend because they called every Actemra patient in to re-evaluate them. Most of us were sent for imaging and other testing. I had the site of my vasculitis biopsied immediately there after. It has not been a good experience, one I hope to never repeat.

No drugs at all would be heaven! When I was fighting ALL I was taking 32 drugs a day, recently I've gone from 13 to 6 to 4. I'd like to take prednisone off that list too 😊

[Klah in reply to Nitrobunny]

I agree!....having all the patients called in would be very disconcerting!! I believe I would immediately stop the drug, reaction or not. I love my rheumy and he feels confident about the Actemra for me. I need to ask about the other patients. You seem to be doing well considering all you have had to deal with...hope that continues😊💕

[Nitrobunny in reply to Klah]

Having a rheumatologist you love is everything isn't it? I trust mine implicitly and I was thrilled will how well Actemra did for me for the period of time it did work. I know they discontinued the drug for all patients with cardiovascular issues within the practice as well as a few other conditions, out of an abundance of caution.

I am doing really well thankfully. The best I've been in years despite the occasional bumps in the road. I'm on bonus time as it is (in 1997 they didn't think I would make it 3 months, I had other plans) so every day above ground is a good one. 😊

[Klah in reply to Nitrobunny]

Do you mind if I ask where you live? Ok if you don't want to say...

[Nitrobunny in reply to Klah]

I split my most of my time between California and Michigan, the majority of my doctors being in Michigan. I'm moving back to the west full time in 2019 but will still travel to see my specialists

[Klah in reply to Nitrobunny]

You must hate it when you are away from your favorites. I really appreciate all of the information...I am one of those people you want to know what to expect (the worst!), but hope for the best...thanks!

[Nitrobunny in reply to Klah]

You're welcome! 😎

[Klah in reply to Nitrobunny]

How did the vasculitis manifest?...I want to watch for it!

[Nitrobunny in reply to Klah]

If you google vasculitis, ankle and rash you will get a million pictures of what it looks like. It starts out as a small rash and grows larger. I also just felt badly over all, like the flu. My ankle ached but I just thought it was the RA. It wasn't. All the while my labs looked great. It wasn't until I saw a dermatologist and had a biopsy that we knew what we were dealing with.

[PMRpro Ambassador in reply to Nitrobunny]

I am VERY intrigued. The doctor with whom I am a patient research partner had heard nothing of it.

Class acts worry me far less than your doctors' concern. But obviously the FDA is also taking it seriously.

There is another biologic being used in Dublin - wonder what its side effects are.

[Nitrobunny in reply to PMRpro]

Yes, the suits are generated by so many things and that's one thing but seeing fear in my doctor's eyes is quite another. They literally called all of the Actemra patients in over a weekend and sent many for follow up testing. I'm having some imaging done and I've never had heart or brain issues yet he ordered some pretty extensive tests. There are two recent deaths that they are presently arguing the circumstances but both were under 60, both in fairly good shape aside from the RA and both taking Actemra without MTX. This is going to take a while to render out.

[Nitrobunny in reply to Nitrobunny]

Another interesting thing was the fact the FDA representative told me to personally note the lot, expiration and any other identifying information any time a biologic is infused. In other words despite the infusion center logging everything, keep a personal record. It makes sense. We are dealing with drugs that are fairly new with the potential for harmful side effects.

[PMRpro Ambassador in reply to Nitrobunny]

I'm looking forward to the continuation of this - and yes, seeing fear in a doctor's eyes is scary...

The concept of using it for really resistant GCA cases I still find acceptable, But far from sure about using it for PMR. Even after 13 unrelenting years I'm tending to the "pred is fine" view at present - though I doubt I'll ever get the chance.

[Nitrobunny in reply to PMRpro]

He is such a great doctor, literally the best I've ever had treat me since 2004 when I first was Dx with PMR. He really cares for his patients and literally returns every phone call the same day.

I am so sad to have to go off of it because it was absolutely amazing when it worked well. Just incredible. It stopped GCA symptoms and turned around my labs. I hope they can get to the bottom of this because I'd love to see GCA done away with forever.

I'm with you on the pred. It works and we know how it affects us. If the Xeljanz starts to look bad for my RA I will quit it too and be thankful that I can at least take the pred. Time will tell.

[PMRpro Ambassador in reply to Nitrobunny]

Did I tell you about the biologic they are trialling in Dublin?

Ustekinumab is being looked at in Dublin

Anakinra is being looked at in France

Wonder if your doctor would be interested in following them up.

[Nitrobunny in reply to PMRpro]

You mentioned the one in Dublin, I did not know the name. Thank you very much for that. I will definitely ask him. He has worked on other trials in the past and I know he's always looking for ways to help his patients. He tells me all the time that I'm a difficult case but we will figure it out.

Thanks again!

[PMRpro Ambassador in reply to Nitrobunny]

He sounds a treasure - don't let him go!

[Klah in reply to PMRpro]

I think both of those drugs have been tried in the U.S....not sure they were clinical trials for GCA or PMR. Gets tricky when you are treating a patient with a drug for one condition but other conditions are present...plus other medications, plus age, etc.

[PMRpro Ambassador in reply to Klah]

They are RA drugs - but these two I've mentioned are specifically clinical trials for use in GCA. Several RA drugs have been tried in the past - some trials were stopped early because it was obvious that they didn't help and in some cases were actually dangerous. The Recommendations specifically warn against the use of anti-TNF drugs in GCA for that reason - but I have heard of rheumatologists announcing they are going to try them.

[Klah in reply to PMRpro]

I imagine that is why my rheumy does various blood panels every month to watch for the effects of the Actemra...triglycerides, cholesterol, netriphils (sp?) to try to catch something early.

My rheumy always sits down with me and discusses the results, and also emails them to me.