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Tag Archives: orencia infusion

Orencia | August 2015

03 Thursday Sep 2015

Posted by MonicawithRA in Rheumatoid Arthritis

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Tags

Orencia, orencia infusion, rheumatoid arthritis

I sat down for my second dose of Orencia two Fridays ago. I had been off the medication for three months and it was completely out of my system so for the week prior to the infusion I felt pretty low.

I did not have any reactions to the infusion itself except for a little tenderness in the injection arm but that was relatively normal.

Unfortunately, the effects of the medication did not kick in until the end of the weekend. I was extremely lethargic and weak. I kept zoning out and I needed rest after only 20 or 30 minutes of activity. I dropped multiple items and was just “under the weather”. This was beyond annoying but still normal. I generally felt like this for a few months before I fully became used to the medication.

After the weekend I felt fantastic. I lowered the prednisone dose to 9mg (I had been on 10 for nearly a year sometimes increasing to 12mg)! I experience no swelling in my joints or excess pain, and I kept up with a full time summer schedule no problem. The prednisone was not the only medication I changed. I eliminated the extra Tylenol from my evening medications and only took the 300mg that was already part of the Ultracet tablet (37.5mg of Tramadol and 300mg of Acetominophen). I tried to stop the Tylenol in the morning but was not able to do so.

 

So far, I feel better than I have for almost eight or nine months! I exercise every day, my appetite has decreased (a welcome change because of the lower prednisone dose) I feel more alert and overall in better spirits. I am inclined to think this is due to the Prednisone changes than the Orencia because the prednisone really messes with my mood. Of course, if the Orencia was not working I would not be able to lower the Prednisone dose. I do not know how long the Orencia  will work because after a few months I always plateau but for now I will take advantage of feeling awesome!

 

Hi, my name is Monica and I have RA.

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September Infusion

08 Wednesday Oct 2014

Posted by MonicawithRA in Rheumatoid Arthritis

≈ 7 Comments

Tags

autoimmune, flare, Orencia, orencia infusion, rheumatoid arthritis, side effects

Be ready to laugh! I sat for my last IV infusion in September! If you’ve been following my blog you know why this is hilarious. With the reimbursement nightmare spanning nine months I stopped the infusion until I got my money back. Last week’s blog post was about the extreme fatigue I experienced while off the medication so my doctor was thrilled when I re-started the infusion.

Maybe…

First, I didn’t feel any better. I expected to. But, I didn’t. The first time I sat for the infusion I felt so good the next day, I went on a four hour hike. Honestly, I expected miracles. They never came. Okay, I shouldn’t be so harsh, I did feel less tired but that was it.

The worst bit was the return of two infections. One was a sinus infection I’ve battled since who knows when. I had corrective sinus surgeries, in college, because of infections and debilitating headaches. In high school, they got so bad I took too many sick days (the longest was a week). Apprently, there was no point in getting those invasive surgeries because I still battle these infections (remember when I ended up in hospital because of them?) I was fine until I started the Orencia, which unfortunately suppresses the part of the immune response that also fights sinus infections. Just my luck!

I am also dealing with a recurrent yeast infection. I started getting them in April. At the time I actually  didn’t know they were infections and thought the symptoms were side-effects of prolonged Ambien use (the only medication change in a few months). Turns out yeast infections are side effects of prednisone use and because I have to increase every so often I am more prone to them.

 

I was really bummed because during the two months I was off the Orencia I did not have any sinus headaches! I slept with all my pets through the night without any problems and I rid myself of yeast symptoms, as well! Hooray!

Until the infusion…

Like clockwork, both infections came back full force. My headaches rivaled those I had back in high school and the yeast infection? Well, those are just annoying.

Thankfully, I had my monthly rheumatologist’s appointment the following week so I sat down with my doctor and we discussed my options. I needed to stay on biologic and, unfortunately, Orencia did the best job of suppressing my RA symptoms. He agreed the side effects were too much so we compromised and decided to make the switch back to subcutaneous injections. They are weekly, self-injections so the dose is lower. Hopefully, I will maintain my condition and the other symptoms.

I never felt as great on the sub-q injections as I did on the IV infusion but honestly, I am willing to feel a little bit more ill so I can feel a little less sick.

 

Seriously, this situation is funny given how much hassle I went through just to stop the medication. Again. How many times have I switched medication in the last three years? I’ve lost track.

However, sub-q injections have their perks. I no longer have to schedule off from work, I do not have to have to drive to my doctor’s office and sit with an IV in my arm, I do not have to sleep all day.

 

I’ll take it.

 

Hi, my names Monica and I have RA. H

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The End of a Saga – Reimbursement of Out-of-Pocket Expenses

18 Thursday Sep 2014

Posted by MonicawithRA in Rheumatoid Arthritis

≈ 2 Comments

Tags

Accredo, copayment assistance, Orencia, orencia infusion, rheumatoid arthritis, specialty pharmacy

“Persistance pays off. Sometimes it’s even okay to be annoying because you will get what you want” – my dad

 

After 9 months…I will get my money back! If you are new to my blog, I will give a little review (you can read my experience in more detail here). I started sitting for the monthly Orencia IV infusion in September 2013. Since I already paid the deductible on my insurance, all my medications were covered. At the end of March 2014, I received a surprise 2-month delinquent bill for an invoice from January. It totalled more than 800 dollars and attached with a lovely note telling me they would stop my medication shipments. There are so many more issues with this but the one that really bugged me was my credit score. They were sending me the invoices, albeit to an address I have not lived at for TWO years, but because they thought I was ignoring them my credit score plummeted. I had fabulous credit before this. And, as you probably know, it takes patience and time to build good credit but only one missed payment to shatter it.

 

ANYWAYS…

I re-applied for co-payment assistance immediately. I contacted Accredo, gave them the new membership ID and asked them to backdate the invoices.

After more months of clerical mistakes, I still paid out of pocket so in July I started over.

I re-re-applied with Orencia IV Infusion co-payment assistance online, got a new membership card and after weeks, yes, weeks, found a manager at Accredo. There was a note on my account “if client calls again, tell them to call insurance provider”. I was so angry, I yelled at the supervisor. “This is not their issue, it’s Accredo’s for not applying the right information and sending the invoices to the WRONG co-payment assistance!” The manager “sat” with someone in the Billing department as they re-entered my new membership information and promised to re-send the invoices “to the right place”. Up until this point, they were sending them to Remicade co-payment assistance. (I HAVE NEVER BEEN ON REMICADE, if that gives you a sense of how INCOMPETENT this pharmacy is)

PS. I still do not know where they are sending those invoices but it is certainly not to Orencia.

 

I called Orencia to find out if they had received the invoices and they said no. However, Accredo had filed my benefits through the card on file and the May invoice was rejected. Why?

 

Because Orencia has a 45-day back-date policy.

 

I almost started crying on the phone to the Orencia rep. I was devastated and very annoyed. I wanted to file a complaint with the Maryland Insurance Administration. I was obviously not getting anywhere on my own and I needed legal help.

 

But something came to me, I asked her “I signed up for the new Assistance program in March through my doctor’s office. Where is that information?”

“It’s not showing that you were a member before July.”

“I was, I never received a card but I did recieve a membership number. Where is that information?”

Now, it’s important to know I talked with this specific representative at least three times since this ordeal began. She remembered talking to me in April “Wait a minute, let me go through your account…I would not have even talked to you in April if you were not a member”.

She went through my history with a fine-tooth comb and noticed a mistake in the notes. I had signed up with the IV copayment assistance program in March, with validation from my doctor’s office. For whatever reason, that membership information had not transferred to my account.

The representative contacted management and placed a request for exemption. It turned out it was a mistake on Orencia’s end so they accepted the exemption and agreed to reimburse me every single invoice from the beginning of the year, even though the January one was a little out of the 45-day bracket.

 

I kept repeating “thank you so much, if you hadn’t remembered talking to me before the May invoice, if you had not gone through my history the way you did, I would not be getting my money back.”

It’s amazing how just a little customer service goes a long way.

 

…But, there was a snag. (of course, right? It just cannot be that easy…)

Accredo did not send them any of the invoices, they could not do anything without those invoices.

I fished around through my bills from the last year and found every one of them.

…But, there was an even bigger snag.

 

They were not in my name. I am still under my father’s insurance so the invoices were sent in his. Also, the medication name was not even on them! They just showed the coverage adjustments.

The representative told me to fax them anyways. If they could not use them they would let me know.

Just in case, I called Express Scripts and asked them to re-send an itemized invoice in MY name.

 

I called a couple of times last week because Orencia was still processing the invoices and they had neither been rejected or accepted yet.

On Monday, I ended up speaking with this amazing representative again and she told me the checks had been sent out. I asked her the value of each check and I was so pleased to find out I am getting everything back. Well, everything minus $20, which is what I was only supposed to spend over the last 9 months. How much did I spend? Over $1,000.

 

I am not going to lie to you guys. I am exhausted. I was on the phone with Orencia, Accredo every week sometimes twice a week. The strain and stress of the situation put me right to sleep and I napped most of the day. I was close to my breaking point and I was ready to file a complaint.

But now, this is behind me. I re-start the Orencia IV again next week. These past two months have been pretty bad without it (which I will talk about in another post).

 

Persistance, my friends, does pay off. I’ve always been one to beat anything into the ground. My father usually says I am less persistent, more pig-headed than anything else…hey, if it works, right?

 

Hi, my name is Monica and I have RA.

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Off the Orencia

27 Wednesday Aug 2014

Posted by MonicawithRA in Rheumatoid Arthritis

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Tags

Accredo, flare, off the meds, Orencia, orencia infusion, specialty pharmacy

Long story short, Accredo Speciality Pharmacy continually messed up and I was out quite a bit of money. Until I received my refund I stopped the Orencia…whether this was a good idea or not. Spoiler alert: a very terrible, horrible, no good, very bad idea.

 

I was in so much pain the week after the “missed” dose. Marmalade sat on my lap and tried to console me, she tweaked my hip and I burst into a fresh wave of tears. She then started crying, too. Best cat ever. I do not know if I would be able to get through these flares without her.

 

I hobbled around enough to eat and sleep but I lay in bed for days. My immobility and pain were so bad I considered going to emergency for a shot or IV or something. I never spiked a fever so I held off (I hate hospitals, can you tell?) I increased the prednisone dose to 12 mg. It did not help a whole lot the first few days but it was enough to get me to work.

A half-day camp put me in bed the rest of the day; a two or three hour shift exhausted me. I could not increase my prednisone dose because I started to get anxious and depressed, the two emotions I needed to check when working with kids!

I spent the last two weeks in bed. I barely did anything of value, I could not walk, drive, paint my nails, and sitting up was a chore.

That was last week.

…What about this week?

 

 

I feel more stable but I have off from work this week. I am still on 12 mg of prednisone but I am sleeping alright as long as I take pain medication right before bed (otherwise, I am too painful to sleep). I care for my pets, I rock-climb a little, I am no longer unbearably nauseous and able to eat more than a yogurt.

 

I hope I feel better as my body adjusts to the Orencia’s absence. I hope I can stay off it because I refuse to use Accredo.

 

I hope I get my money back.

 

Hi, my name is Monica and I have RA.

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Stopping the Orencia

07 Thursday Aug 2014

Posted by MonicawithRA in Rheumatoid Arthritis

≈ 3 Comments

Tags

Accredo, bad customer service, copayment assistance, orencia infusion, rheumatoid arthritis, specialty pharmacy

I decided to stop the Orencia this month. I can no longer afford Accredo’s STUPIDITY.

Now, do not get me wrong, if the medication worked wonders and I felt able-bodied and “normal” I would gladly pay for it. However, I cannot justify  ~ USD $450/month for a medication that only works maybe 60%.

Yes, I am a part of the Orencia IV Infusion Co-Payment Assistance Plan. Yes, Accredo confirms my out of pocket expense is $5 so why do I receive a surprise $900 bill every two months?

I paid out of pocket long enough (since January)!

Why are the back-dated invoices not accepted by Orencia? Because Accredo send the invoices to Remicade (a Centicor company)….last time I checked, I was not on or never have been on Remicade.

 

I started over again. From scratch. I requested a new member ID from Orencia. I received the card attached to that membership. Accredo updated the information…properly! They sent the invoices to the right place…finally! A supervisor confirmed the changes.

I should receive a refund on my out-of-pocket costs.

 

….Maybe…Until I do, I stop the Orencia.

 

Regardless of the trouble with Accredo I struggle with stopping this medication. Orencia works best out of all the medications I’ve taken. But every latent infection comes back like clockwork: my on-going sinus infections, yeast infections, stomach pain and nausea.

 

Well, let’s hope in the next couple of months I will be re-united with my long lost money!

 

Hi, my name is Monica and I have RA.

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The Chronicles of the Orencia Infusion: May

28 Wednesday May 2014

Posted by MonicawithRA in Rheumatoid Arthritis

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Tags

Orencia, orencia infusion, rheumatoid arthritis

The morning of my IV infusion was a breeze. I requested the day off from work. My appointment was at 10:30 so I ate my breakfast peacefully and took my meds. I cared for my pets. Stress-free morning!

Question: Has anyone else noticed if you eat breakfast quickly it sometimes feels like you never ate breakfast? For me, if I don’t eat breakfast over at least an hour it feels like it does not metabolize correctly. Am I weird?

 

Every month, the technician monitors my blood pressure because Orencia is a biological medication. This month, my BP was low! This was not an issue but it was surprising! I had three glasses of water to stay hydrated. I took my time eating my breakfast and it should have metabolized by then. My BP should not have been 100/60. That is not to say this is a problem. I mean, better low than high but still…strange. I generally range between 110-120/80-90.

It just goes to show how interesting the body is. Things happen for no rhyme or reason but the body always manages to stay even-keeled.

 

The IV went through my right arm this month. No pain, no itching, no rash, no redness. The whole ordeal took about 45 minutes with no interesting updates. I brought my Instyle magazine and read it, patiently.

My infusion happened during the peak of my non-sleep cycle. I spent 5-10 minutes reading the same three paragraphs and retained nothing!

 

Huh…

Maybe that is why my blood pressure was so low? Lack of sleep? 

When I returned home I took a nap. As per usual, I felt groggy after the IV but thankfully, I did not need as long a nap as last month’s.

 

All in all, everything went smoothly. I had no trouble shipping my medications. I did not have any reactions. The infusion time was a little longer than usual but I think the technician made the drip slower because I did not have the usual IV reactions. This is a good sign! Hopefully, from now I will not have any bumps in the road!

 

Hi, my name is Monica and I have RA.

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The Chronicles of the Orencia Infusion: April

24 Thursday Apr 2014

Posted by MonicawithRA in Rheumatoid Arthritis

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Tags

flare, Orencia, orencia infusion, pain, rheumatoid arthritis

I may be taking a few days from my nail painting. My fingers and wrists are acting up. Just as well, I can catch up on my non-nail art related posts!

So, let us continue on my Orencia adventure…

 

April marks eight months on my IV infusion. This is the longest I have been on any biological medication since diagnosis. My symptoms are more even as the medication builds up in my system, I do not feel as awful towards the end of the month, and my flares are less severe.

However, and this makes me nervous…this past month, the immunosuppressant wore off two weeks early! I will not know for sure if this was the medication until next month’s infusion but I think it is since I should not have experienced such bad symptoms.

My knees were gone, my shoulders ached, I could not climb the stairs let alone get out bed. I increased the prednisone and still took double the amount of pain medications just to make it through work. My hand tremor returned. I was completely out of sorts.

Then I sat for my IV last Friday. Saturday, I felt wonderful! Like, I wanted to rock-climb and take a hike kind of wonderful! So…I guess I will see. There were other factors like working at the animal clinic more often and staying on my feet for more than eight hours a day, every day. Hopefully it was not all about the medication.

This month I received the IV in my left arm. Oh, the infamous left arm. Surprisingly, it was not painful and I barely felt the fluid entering my vein. My skin did not bruise or redden during or after and I had pretty good use of my left arm hours after the sit-down.

The only difference from last month was I zonked out afterwards. Last month, rested but did not take a nap. This month, I was out 30 minutes after I returned home and did not wake up for 3 hours.

I forgot to ask off from the gym so I had work in the evening. My pain levels were high, but my energy levels were pretty good.

 

All in all, I think this month was a success.

I am crossing my fingers that this medication will continue to work for me. I do not want to switch medicines AGAIN and have to feel awful for months. AGAIN.

 

Hi, my name is Monica and I have RA.

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