PMRGCAuk

Actemra uodate

Have had three shots of Actemra and have been denied by the insurance company who would like me to try Remicade ? I can get the infusion but not the shot . Doesn't make sense to me . I have begun to itch all over which is a side effect of the actemra. I was told to take Benadryl at night to relieve that and it does help. I suspected that the awful bout of shingles was connected with my prior infusion of Actenra but when i check the internet the studies seem to indicate otherwise. However the itching makes me fearful of the infusion . Has anyone ever tried Remicade?

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Remicade is an anti-TNF biologic. They have been found to be ineffective in PMR and one trial was stopped early because of poor results, even damage.

The most recent international guidelines for PMR:

rheumatology.org/Portals/0/...

say:

"The panel strongly recommends against the use of TNFa blocking agents for the treatment of PMR. The group agreed strongly against the use of TNFa blocking agents in PMR at this time since there is no evidence for benefit, but there is a considerable risk of potential harm and high resource use.

No recommendation can be made for other biologic agents as no prospective trials have been published so far. There is one ongoing randomized study on the use of tocilizumab (clinicaltrials.gov NCT01396317) and another three-arm trial comparing secukinumab, canakinumab and GCs (clinicaltrials.gov NCT01364389) in PMR. The results of these studies may lead to a modification of this recommendation."

Only tocilizumab has been shown to work for GCA. And even then it must be used together with pred.

So what is the insurance company on about? If it were ever used I could see their point - it isn't, never has been and is extremely unlikely to be.

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Thank you for your quick reply . I will fight them if I have to . Just needed some ammunition 😋

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I am on the Actemra injectables and have no side effects. I was however concerned about an allergic reaction Initially and did consider infusions which I heard could be given with Benadryl. I am on my 6th Actemra injection (started May 26th) and I have been able to reduce steriods very quickly by 1/2. I started at 12 mg and and will be at 6 mg on Friday.

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Thank you for keeping us posted! They say the Actemra can work best for patients that are newly diagnosed and have not been taking the prednisone for so long. So you are taking the injectibles weekly? I wonder if the injectibles are more effective than the infusion...but not sure what that means actually! Certainly love hearing a success story for anyone with PMR!😊

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I've been on steriods for a year. Highest 20Mg. I inject once a week and that same day reduce steriods by 1mg. As I get lower, I am feeling side effects of steriod taper. Advil helps.

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I'm glad to hear that things are going well for you.

I'm curious about what your steroid taper side effects are. How long do they last?

Have you run into any of the adrenal issues people sometimes report around 8mgs and below? The fatigue, etc....?

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Started really feeling icky at 7mg (this week). Fatigue, flu-y and some shoulder soreness. Advil helps. My doctor's appointment is this morning. Will be getting full blood workup today. I'm very curious to see if this is PMR or prednisone withdrawal.

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But I am also due for my shot tomorrow and I usually feel this way the day before. The only difference at 7 mg is it started a day earlier

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Sorry, I had to look up an old post of yours in order to ask a question. In 3 days I will have my 3rd infusion of Actemra...the lower dose (4?, not 8). I am a little stiff today, and have some fatigue last day or so. Have dropped from 8m to 6m in last 8 weeks. Do you know if it is expected that I might "plateau" in tapering the

Prednisone? Thank you for your input!

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From what I know even with Actemra it depends on the patient a bit. One lady has said elsewhere that she got down to 1mg but not off altogether.

It is also bound to depend on how long you have been on high dose pred and the return of your adrenal function. Actemra doesn't replace the steroid so if the adrenals are a bit slow that may slow down the reduction process too.

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I have had just five shots of Actemra this time. No change as yet in prednisone dosage . I am fighting adrenal insufficiency also . Still not sure what I will do. Sorry ... cannot be much help. I see both doctors this week.

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Thanks...it is good to hear other's experience with this new drug. Wonder what they do if the adrenals don't kick in..? Wonder if you get the prednisone down, it will stay down. Guess nobody knows.

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That's the conundrum - you have to take a corticosteroid as replacement therapy! Either hydrocortisone - or pred!!!

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But is there the possibility that, if the Actemra zaps the inflammation, and you find out your adrenals do not wake up, you won't need as much hydrocortizone because you won't be fighting inflammation..? How is hydrocortizone different from prednisone anyway?

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Yes, of course there is that possibility. Hydrocortisone has a shorter life in the body than pred so usually you take 2 or 3 small doses per day instead of one of pred and that also mimics the way your body works producing cortisol. Some doctors think that it encourages the adrenal glands to start functioning again better.

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Do you mind if I ask, did your insurance specify whether they would pay for the infusions, or the injectibles only. Are they equally effective? Thank you!

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From previous experience - it depends on the insurance, some will cover it when administered in a hospital/clinic.

And there is some thought that injections are associated with fewer side effects but are equally as effective.

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The doctor's assistant said that they would not pay for the injectibles but they would for the infusion. As my doctor is in on the research...I just assumed that maybe she said that because he could include me in the research. I do not know that for a fact. I will find out tomorrow. In regard to insurance ..I did get a waiver for the Rayos. It dropped the price , my co- pay , to $ 3,000 for three month supply of 5 mg. Still out of reach. I will get up at 2 am for that ! The only trouble is the Rayos has helped my stomach issues and does seem to work better.

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My insurance will only pay full cost of infusions...not injectibles. I have heard that the injectibles are more effective...??

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I have only had two infusions of Actemra and am tapering the Prednisone...down from 8m of prednisone to 7m over the past 5 weeks. So far it has been good, with no side effects (but still fatigue). I am in the U.S. I am interested in the injectible Actemra because I travel. The injectible are covered by insurance, if you have pharmacy insurance, but they are more expensive than the infusions. The infusions only take one hour and are not uncomfortable at all. I don't know anything about Remicade. I would think any side effects from the Actemra would occur with the infusion and/or the injectible. Itching all over is a bad side-effect! It is my understanding that Actemra is an anti iL6 medication. Eileen will have the best advice😊

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Thanks. My insurance will not cover it. I am appealing 😊. The shot is easy to do. Good luck.

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Klah, The Actemra has been working well for my Mom. She is receiving an infusion every 4 weeks here in Massachusetts. It is covered by her insurance and she has had no side effects at all. She too, also is still fatigued very easily, but no where near what she was like before. She has been able to taper well since being on it, going from her initial 60 mg daily of Prednisone down to 9 mg as of tomorrow! I hope you continue to taper well and side effect free!!

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That is great news about your Mom! I think Eileen says the fatigue is attributable to tapering the Prednisone...seems reasonable.But I think I had fatigue just from the PMR too. In any case it will be interesting to see if the inflammation goes into remission. Keep us posted, and best wishes to your Mom😊

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Klah and 30048 and Marie 1479:

LOL: This turned into a survey. I'm trying to gather info. to present to my rheumy. If you and anyone else with experience with Actemra would be willing to share, I'd greatly appreciate it. There isn't much I can find out there on the internet.

My rheumy has told me she'd go with methotrexate should I flair again. I'm at 13.5 after 6 months, reducing by .5 a week after a suspected flair the last time I hit 14mg. of Pred. The accumulated total of Pred is clearly causing problems: lipids up despite my best efforts, A1C edging up but still ok, muscle wasting in thighs and upper arms despite staying as active as I can, either bursitis or sciatica if I'm weight bearing for long especially early evening. Had to rule out osteonecrosis via Xray yesterday because of the pain.

So here's the "survey" if you will.

How much do Actemra shots and infusions cost if it is not covered by insurance? I understand this may bary by region and pharmacy plan.

What diagnoses do you have for insurance to cover? Will insurance cover with a PMR only (still off label) diagnosis or do you have to have a GCA or RA (FDA approved) diagnosis for insurance to cover? I wonder how this works. I belong to Kaiser HMO and haven't had much experience outside the plan in almost 30 years.

How long were you on Prednisone before starting the Actemra?

How long do you expect to be on the Pred and or Actemra?

Have you had any flairs while on the combination?

Thanks in advance.

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I can not give a cost. I will let you know if i find out one. I was on the infusion two years ago but think i was included in the testing. I never was billed. I withdrew due to a reaction. I have GCA and had a biopisy. I have been on prednisone for five

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Thank you so much for your reply. I hope you are doing well.

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The cost that I see on my Moms health insurance monthly statement is around $15,000.00 each infusion and it is covered by her plan. (her Doctor did say it may come back denied, as many do) In my opinion an extremely high cost for a bag the size of a juice box!

My Moms diagnosis is GCA. Confirmed by biopsy of both temporal arteries and blood work. (She had headaches and temporarily lost complete vision in both eyes)

My Mom started Prednisone in September 2016 at 60 mg. a day. She was unable to taper below 40 mg. a day without feeling very ill, and her Doctor would at that point increase the Prednisone back up to 60 mg. a day.

She started the Actemra infusions I believe in March 2017 and gets one every four weeks. These are to be continued without a cut off date as of yet.

Since being on the Actemra she been able to taper down to 9 mg. Prednisone a day. At this time all blood work is coming back normal, although her blood sugar level remains a tad high. The taper plan that her Doctor is suggesting is to go down 1 mg every 4 weeks and continue the every two week blood work, and every 4 week Actemra infusion.

She has had no flares or side effects while being on both Prednisone and Actemra.

Symptoms remaining are fatigue although not as bad as prior to the infusions and slight weakness in both legs, something that was very prominent at the beginning.

Wishing you the best in getting your approval in hopes that this will work for you as well!!

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Thank you so much for these details. Right now I'm tolerating the .5 drop from 14 to 13.5 pretty well. This is to be a .5 weekly drop until 10 mags. We'll see how things progress. If I get another flair???

Cross that bridge when I and if I come to it I guess.

But this is a big help.

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Hi Hindags,

I was diagnosed with GCA and PMR in April. I am bouncing between 60 to 80 mg. Trying to taper. I am on my second injection of Actermra. My insurance denied coverage and we are appealing. Fortunately the mfg has a financial assistance program. It was very easy. The number is 855-722-6729.

Good luck.

TJ

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Thank for that info. I'll call them to see if they extend discounts to PMR only patients. Any side effects of the treatment with Actemra for you?

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Hi,

No side effects other than slight itching at injection site. I have chronic fatigue. It seems worse after the injection yet hard to tell if related.

Good luck.

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I have fatigue but that's from the tapering of steroids

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The survey:

I believe the infusions are around $2000 each. I temporarily have lost my pharmacy plan, but would like to get the injectibles (for travel purposes). However, the injectibles, with insurance are much more expensive and you have to first pay your deductible and then a percentage of the cost of the syringes...very cost prohibitive, depending on what country you live in.

My rheumatologist prescribed the Actemra. We have discussed temporal arteritis as a complication of my PMR...? Have not looked at my chart. I am not being successful tapering below 7-1/2m, even using the DSNS method.

3-1/2 years on prednisone (10m, tapered down to 8...going up and down with flares, managed some on 7-1/2m but no lower)

No idea how long I will be on Prednisone or Actemra.

No flares while on Actemra...have felt great...reduced the prednisone from 8m to 6m in 8 weeks...some fatigue as I approach my third infusion this week.

Keep us posted on the survey...will be I teresting😊

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"very cost prohibitive, depending on what country you live in."

Only a problem in the USA, the rest of us have socialised medicine which is why it is more difficult (for that read unlikely at present) that we would be offered it for PMR. It is being used in the UK for GCA but has to be approved.

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Sorry i am having a hard time with my iphone . That was five years. Actemra has not been available that long. I am now on the shots but have had only samples . So far the insursnce company will not cover it.

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My doctor believes it will reduce the prednisone needed. I am honestly more concerned about the actemra side effects than the prednisone. In the five months i was on the infusions i did not have a flair and i reduced my prednisone by 5 mg

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Thank you for your answer. Have you had any troubling side effects from the infusions? What side effects of Actemra concern you? I don't know much about them.

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My dr said the side effects of Prednisone are far worse than Actemra. Mainly because you are on steroids a lot longer.

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Thanks for the reply. Hope your insurance starts covering it. How many shots have you had? Have they helped with the taper.

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I am not sure if this will help you but my Moms experience with Actemra infusions every four weeks for GCA have been exceptionally well tolerated. She has had no side affects at all from it and it has helped get her down from 60 mg. a day of Prednisone to 9 mg as of tomorrow. They do give her 1 Benadryl and 1 Aspirin prior to each infusion, but she has not had any allergic reactions. As with any taper, it has been slow but for the first time I feel like she is on her way to being Prednisone free..

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Great news. Hope it continues to go well. I hope to follow in her footsteps 😉

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My experience is much like joyismami's mom. I have GCA I started on 60 mg. Prednisone and went down 10 mg. Every 2 weeks. When at 10 I went a little slower but went off completely . I started actemra infusions when I was on 20 mg prednisone. I have been on actemra for 13 months now and the only symptoms I have is pretty bad fatigue ....cannot walk too much without forcing myself. Before every infusion they give me a Benadryl tablet. I have had no side effects from actemra. Do not know what the fatigue is from but according to the posts on here it is from the GCA. OH AND MY INSUANCE COVERS MY INFUSIONS WHICH ARE AROUND $2000".

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Wow, you have been on the Actemra for a while! I hope they will keep my Mom on it as we continue the taper to ZERO mg Prednisone. I will be so happy when she is off that one!!

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