Rheumatologist wants me to take Actemra because pred is causing too many adverse side effects. No sure how it is in other countries but extremely expensive here. My insurance will pay half but I still have to pay over $1600 a month. I cannot afford it. I have contacted different agencies to help with copay costs but we don’t qualify for anything because we are not low income. God knows we are not well off either and cannot afford this. I’m not sure what to do. I’m thinking I just have to deal with the pred effects if they don’t kill me. Haha! Once again, any thoughts?
Every time I write I have tons of questions. Please bear with me
Written by
nallufl24
To view profiles and participate in discussions please or .
What are the pred side effects which are most troublesome to you, and what is your current dose? We may be able to come up with suggestions for dealing with the side effects.
I’m on 40 mg but may have to go up because of headaches. Most troubling to me is I constantly shake and have depression. I take an antidepressant which works at lower does of pred but when I go up the pred overtakes the antidepressant
Sounds like life isn't much fun for you these days. How long have you been taking pred and did your depression begin then? I think just being ill, as well as the restrictions caused by the pandemic, don't help at all.
My depression actually started before I was diagnosed. That was actually one of my symptoms of GCA. Once I started pred it became worse. I’ve been on pred since July 2021. I agree my life changing as much as it did could have also contributed to my issues and your right, COVID hasn’t helped
Also, I know it's a ridiculously expensive med but I thought it was less than the $38,000 per year your figures add up to.😨 The following site says something about a co-pay sometimes more expensive than other ways to pay.
I went with you saying your insurance covered half, but you still had to pay $1600. So the total for both you and the insurance would be 38,000, but I am numerically challenged!
Actemra is not widely used in UK for GCA - mainly due expense (funded by government /taxpayer) - and it’s normally only authorised on a yearly basis. As HeronNS says if you specify particular side effects we may be able to help. ..
and rest assured , although it may feel like it, they won’t kill you 😉
I just realized that you've asked about this issue already and people have felt your taper has been too fast. How much of your distress is actually caused by pred, how much by too rapid withdrawal of the medication which is controlling your GCA? Sometimes going slower ends up being faster because you don't relapse and have to increase the medication. Sorry, only your fellow American has come up with actual answer to the question you posed here!
I’m on Actemra also. I get a 3 month supply (12 syringes) from CVS Specialty Pharmacy. I have no problem getting it. (Knock on wood)! You may want to try googling the CVS Specialty pharmacy. I believe all you need to do is have your doctor call in a prescription for you. I think it’s worth a try. This will only work if you are in the US.
I was just approved for “replacement program” by Genentech. IV only, but they will replace at no charge to the pharmacy at my hospital. I start in 2 weeks for off-label treatment for ICI induced neuropathy.
My rheumatologist tried everything to keep me on Actemra including trying to arrange infusions at hospital after auto injection and prefilled syringes were no longer available. My rheumatologist called last week and said he's unable to get it for me and to "thank unvaccinated covid patients for that." ( I'm only quoting my Dr here) He said hopefully my gca remission will continue and if not we'll try Orencia.I've been off Actemra for over a month and actually feel better than I have for 3 years. Hoping that continues. Physical therapy and pain met for back & knee issues is working and recently had heart loop monitor implanted to evaluate some potential heavy issues.
My cardiologist suggested an Apple fitness watch if I can afford it so I can monitor my activity with symptoms. She also said to have blood pressure thingy, good thermometer, oxometer. She said in light of increasing covid cases and medical care being challenged being prepared nd able to do some self monitoring is a good idea. Its a wild crazy world we're living in.
Genentech generously provided Actemra to me. It's a very generous threshold they use. We are not low income but not rich either. But again, it's because of covid tocilizumab/Actemra is not available right now.
Spanky, if you're in the US and over 65, Medicare and/or your Medicare Advantage or supplemental insurance would cover the costs of a Apple or Apple style watch, BP monitor, etc.
Tell your doc you cannot afford it and ask if there is something else you can try that you can afford. It’s my understanding that not much else works for pmr other than prednisone but doctors love to suggest other things so they may have something. However those things come with side effects too. I am sorry you are struggling!
According to the age you listed for yourself on your profile, you should be on Medicare also. I am on Medicare with a Medigap policy to supplement and take Actemra infusions, not the SC version that you administer yourself. If you do it this way it comes under Medicare Part B. The SC Actemra version probably comes under Medicare Part D (drug plan) and that makes it way more expensive to you. I do not pay anything for my Actemra taken at a local hospital by doing it this way. The same thing applies to Prolia which I take for my osteoporosis. Talk to your rheumatologist about what version of Actemra he is proposing - both work!!
I too am on Medicare and a Medigap policy. I mentioned this to the nurse who was trying to help me with get financial help but he seemed not to be able to do that. I’m still working on it.
I would note that, if you are on Medicare and possibly even if your not, your Insurance company may have a way to increase the amount they will pay if you ask them. I'm on Medicare Advantage, and they policy details explain this. Crossing fingers that yours does too!
You said the same thing I was going to say. I am 66, on Actemra. My infusion prior to this months was delayed 3 weeks because of Covid. I can't take the shots because I am on Medicare and Medicare only covers the infusion. My hubby and I pay over 900.00 a month for health insurance. on top of the payments for Medicare. My insurance pays 100% on my Actemra. We are very fortunate that we have excellent health insurance. I could not imagine trying to navigate through an illness like this without good insurance. The system is just not fair.
You just need to get your doctor/nurse to fax an order for Actemra to the hospital that will administer it. The hospital will get the approval and set up the appointment for you - at least that’s the way it works for me. The approval is for 6 months and then has to be renewed. You shouldn’t need financial assistance because the two insurances take care of the bill. The hospital can’t charge you more than Medicare allows. You must get the IV Actemra for this to be paid under Medicare Part B. If they order the SC which you give to yourself it comes under your drug plan and will be very expensive with a large copay to you.
Yes, this is exactly how it works. My hospital does all the paperwork - only needs a Dr’s order for the medicine and the approval is for 6 months at the time.
I’m getting frustrated with office staff. I don’t think they are doing a good job of helping me. I’m so tired of fighting for everything. It’s bad enough when you are ill but then you have to fight for everything you need
Doesn't your insurance have a limit to out of pocket costs? I was on Actemra and that limit (can't recall amount but $3-4,000) applied annually to my out of pocket expenses. When they added it up, it included other prior expenses such as medications, etc. also so it didn't take long to reach the amount. The drug itself was $56,000 each time and it was covered!!!
I have to do more sleuthing to figure this all out. My doctor is trying to get me infusions since Medicare will pay for it but he said it might not be approved because the FDA has not approved the infusions for GCA but many of you here in the states claim that’s what you have.
I don't think the approval was for the monthly infusions but for the sc jabs - which were used in the clinical trials so there is no documentation for the infusions.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Anyone only taking Actemra
Having vaccine on a Actemra day?
Has anyone achieved a reduction in fatigue from PMR through the introduction of tocilizumab (Actemra) into their treatment regimen? 
Depression has set in big time
Has anyone heard of this
