Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications How many of you

Thanks Kesav, the wierd thing seems to be that if you not in the USA, these drugs are free or at the very least "cheep". Can't figure why in the USA these drugs are so expensive.
Cindy

Hi Anke and thanks for you input. It seems these drugs are perscribed more and cost less for those in other countries other than the USA.
Cindy

Hi Cindy
I'm not on biologics, just posting to shed some light on the cost issue. In Australia and the UK, we have national healthcare systems. So our governments carry most of the cost, using our tax dollars. The US system seems bizarre to me.
Good luck
Felicity

Anke, What a battle you've gone through with the Uveitis. What is holding back an official diagnosis? I've found for the most part here in the USA that Biologics are rarely perscribed without a diagnosis, but, in your case with the Uveitis, that would have to be their fist course of treatment. I consider myself fortunate to have only had minimal bouts of Uveitis early on in the course of AS.
Thanks
Cindy

Hi Cindy,

I'm 59 years old and was "officially" diagnosed in November 2005. I started Remicade in January 2006 and then, after no success with that, switched to Humira in October 2006. I have remained on Humira since that time. Along with nsaids and pain relievers, I manage fairly well. My husband's insurance plan covers most of the cost, which is $100 every 3 months. My rheumy was anxious to start me on a biologic right away. He's a fantastic doc, progressive and caring.

If you can, keep us posted on your collection of stats.

Good luck,
Jessie

Hi Cindy,
I'm on my 3rd inhibitor. Today starts my fifth week of Enbrel as soon as I take it. I'm not awake enough to give myself an injection at the moment lol.

I think the going price of Enbrel is $2,000(usd) for 4 50ml syringes (not the pen). This is a month's worth for me. I'm covered by my insurance, but my doctor had to go through a little more paperwork to make sure it stays covered. I pay $6.30 for a month's supply, which is extremely cheap. Medicare Part D is covering it.

I find Enbrel to be *very* effective for me, and I am glad I started it a month ago. I have some extra AS related pains that biologics simply can't fix though (mechanical damage), so it's impossible for Enbrel get rid of all of my pain for me. So I estimate that Enbrel is able to relieve up to 75% of my pain, which is really good considering that the 75% of my pain was due to inflammation. On a side note, because of this I feel that it important for doctors to prescribe meds like these before any serious damage occurs from AS.

I used to take Humira and Remicade but I had to stop them because of a complication of Atrial Fibrillation with Rapid Ventricular Response. On my 8th infusion of Remicade I was hospitalized because of it. I had one infusion of Humira and was also hospitalized. The infusions were covered by my Medicare at the time (not Part D) because they were a service that had to be administered at the hospital. They were also expensive, even more expensive as the Enbrel as they were infusions. Humira has (or had) both injectable and infusible forms.

Remicade also did wonders for me. I only took Humira once and never really felt it kick in, BUT I got a bunch of painful neurological symptoms from it, on top of my normal AS neurological problems, which took about 6 months to finally get back to normal. I am not having those side effects with Enbrel, so that shows me that every biologic is different.

People who need to know prices of medications can look them up on online pharmacies*. The one I go to for price reference is http://www.drugstore.com/ *Note, I have never shopped online for medication (only supplements), so I can't (and won't) recommend shopping for prescriptions online until I have done so. (no offense to anyone, I'm just paranoid)

Take care,
James

Hi Cindy,

How long have you been on it?
I've been on Remicade for 5 and 1/2 yrs now (started Nov 2004). I'm on an infusion schedule of once every 8 weeks, at a dose of 4 mg/kg of body weight. I started at 3 mg/kg, although the 'typical' dose for treating AS is 5 mg/kg. Tomorrow will be my 37th infusion.

How long did you have AS before you started it?
I had active AS for 24 yrs, which is considered 'long standing' duration in comparison to many who now have access and begin earlier in the disease course.

What has your experience been with it?
Life-changing! Prior to Remicade, my ESR was 85 and CRP was 21. I didn't experience flares but from onset had daily pain that varied from 5-8. After my 1st infusion (at 5 mg/kg) I felt awfully green and nauseous for 3 days straight and thought it was a horrid med. On day 4, that awful sensation vanished and very suddenly the pain started melting away! It was stunning and made me oddly anxious. It was the first time in 24 yrs that I wasn't in serious pain and I almost didn't know who I was. Another huge bonus, the chronic iritis I had for 10+ yrs finally disappeared!!

Due to the adverse nausea reaction, for my 2nd infusion we decided to lower the dose to 3 mg/kg and that worked wonderfully. Now my pain is usually at 1-2 tops with ESR & CRP within normal range. I am far more active and gained significant ROM back.

Since then it has continued to be an incredibly effective med for me, as long as my infusion schedule stays on 8 wks. Past that I go downhill very fast. Fatigue has improved but not as dramatically as the pain did, I've some insomnia, and feel cold all the time.

Are you able to pay for it or covered by insurance?
Since I am self-employed and therefore unable to buy group insurance to cover medications + dental (which generally fall outside of our universal healthcare system) at anything resembling an affordable price (due to pre-existing condition), under our provincially administered universal healthcare, I'm able to access a program that helps me to afford Remi. I pay roughly < $1k/yr in quarterly co-payments based on income.) Otherwise it would cost me $15-18k per year. Since the dose is based on weight, the price for Remi will vary considerably for each person.

How was the subject of starting this drug approached by your Rheumy?
My Rheumatologist just asked me one day if I was interested in trying one of the biologics. I said I couldn't afford to and he said to let him worry about that. I asked him about specific risks and he explained... and it took me all of 2 minutes to say YES! To me, the risk of AS was far far greater and my quality of life was pretty miserable. The choice was mine as to which biologic I wanted; I asked his advice and he recommended Remicade and I agreed. He felt it was showing the best results with his patients and felt more comfortable with the idea that I'd be monitored more closely in a hospital clinic. So did I. He then referred me to an AS clinic and a rheumatologist/clinician researcher specializing in AS. It is nice to have access every 8 wks to whichever rheumy is doing rounds in the clinic!

I was assessed to determine whether I'd be a suitable candidate: bloodwork; full ROM exam; bone density; TB skin test + chest x-ray; ECG; 3 axial skeleton x-rays; thyroid function (not standard).

At the follow-up, she said due to chronic active inflammation and severe disease, that she'd be able to apply to recommend this treatment for me. (In 2004, Remi was only approved for RA in Ontario and was considered off-label for AS, hence the need to apply. As our govn administered system relies on the doctor's report, the intent to treat application was easily granted. And they look after all the paperwork!) I asked her opinion also on which biologic I should try and she leaned towards Remicade also but left the choice up to me. She felt it would prove to be better for iritis but also cautioned that it could possibly make my iritis worse. At that time, there were no studies available yet on their efficacy with iritis, which scared me a little. She felt the chances were very good that it would help, but certainly couldn't guarantee anything. We both felt it was worth trialling in my case -- and wow was it ever!

Some serious questions Cindy and I hope my experience might help in some way. We are each quite unique and these meds will not suit everyone. I've been very fortunate.

Hope this wasn't too much info!
mig

Hi Cindy,

I took enbrel for 5 weeks. Since we have private insurance, the enbrel company was going to pay our co-pay for 12 months, after that it would have been a $100 co-pay every 3 months. From what I understand enbrel is about $15,000 per year without insurance. I can't remember if it had helped me yet, as I was too focused on the hives on my arms and legs. also he had given me a depo-medrol shot too that usually gives 3 weeks of relief.

I also had the side-effect listed "last." Heart failure. yikers! My heart stopped four separate times. so weird too, because i'm not allergic to anything else?? my prescribing rheumy is now very gun-shy and will not permit me to try any other biologic, the big sissy! just kidding! I'm starting to see some results with no-starch and MMS1 & 2. so i'll survive.

take care,
Donette

James,

I forgot to say, I'm glad you are feeling better!!!



-Donette

Hi there, as you know, I'm on my second biologic.

How long have you been on it? Remicade, 4.5 years; Enbrel, 2 weeks.

What has your experience been with it? Awesome. An infected cut, a chest infection, things take longer to heal, but overall Remicade gave me my life back. Even after it started losing efficacy, I was better off with it than without. Enbrel, to soon to say, but so far it seems to be as good as Remicade for me. Touch wood.

How long did you have AS before you started it? Post dx - 4.5 years. Including pre-dx years, however - +/- 25 years.

Age, if that is possible and not too personal? 46

Are you able to pay for it or covered by insurance? Benefits from work cover the cost. Thank goodness!!

How was the subject of starting this drug approached by your Rheumy? I got ulcers from NSAIDS. As soon as that was confirmed by the GI specialist, I headed to my rheumy and told him to get me off the NSAIDS (pretty much used those words, too). Four months later, I was recommended for a biologic. 2.5 months later Remicade was approved by Health Canada for use in treating AS, which meant my benefits would cover it, and the rest is history.

Warm hugs,