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4-1HEALTHYCYNDI's Photo 4-1HEALTHYCYNDI Posts: 11,220
4/29/14 11:03 P

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Janis & Karen, thanks for the info. Yes, I'm on the infusion. My insurance said something about self injectables not being covered or having a higher co-pay. When I go for my treatment it is covered by my Dr co-pay because I see the doc & have the treatment on the day day.

I don't think I could have taken the fertility injections. You are one brave woman. I have an entire ritual set up around going to the doc for treatments so they can find a vein for the treatments. First I make sure to do cardio exercise for a minimum of 20 minutes, have to eat breakfast and drink at least 40 oz of water, and once in the chair they need to warm my arm for about 10 minutes with a warm pack to make sure they can find the vein, especially when they are drawing blood too. Otherwise my blood decides it would rather stay in me.

I hope everyone finds something that works for them. I do agree that it often takes time for the biologics to work. It seems they need to build up in the system to be most effective.

HoH Gryffindor, Hogwarts Tri-Term 5, 6, 7
C.A.M.O.Crew, PDT

NEVER GIVE UP, NEVER SURRENDER!

Striving for VES, Vibrant, Elegant & Sexy

www.folhavitoria.com


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4/29/14 8:56 P

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Hi ladies,

Robyn, glad the Orencia is helping you. My only experience with biologics is Humira, but it did take 3 months to start working and 5 months to really work. So I hope you get continued improvement.

Karen dear, do sorry you are still having complications and side effects. I wasn't aware of all of them. Hugs.

I get the Humira in these "pens" for self-injection. You don't even see the needle, just pinch the skin and push the button (and hold it for 10 seconds.)

It is "sub cutaneous) or "under the skin" about 1/4 inch. I guess I don't mind it because when I went through fertility treatment I had to have intra-muscular injections, about 1.5 inch needle, by DH or friends (when he was at sea) and those really hurt. At the end I had to have them in my thigh and the pain was unbearable.

The Humira can be given in the abdomen or thigh. I have only done it in the abdomen and it stings a little, but not bad at all. I was also told by a nurse that you can take it out of the fridge about 30 minutes before injecting and it can be more comfortable at room temp than cold.

Best wishes to all. We do respond so differently to these medications. RA is a devil of a disease, but there are worse diagnoses, so I try to stay positive as best I can. I wish there were more and better options with fewer risks.
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SEATTLE58's Photo SEATTLE58 Posts: 4,779
4/29/14 7:54 P

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Cyndi, we're all a piece of science aren't we?? So you must be on the IV then? My Rheumy told me that I could take the Orencia or Actemra in IV, but they're not necessarily better for one. He said that the 1x/week self injections usually prove themselves to be better because they're put into the body more often. I don't like needles either, but my DH does it for me. In fact, when I first started the biologics, the nurse told us that it's best to have someone else give the shot to you because they can sting so bad and it's our instinct to pull it away then! Yah! The Enbrel and the Humira all stung so bad, that I would scream bloody murder! But with the Orencia, it's like nothing at all. Maybe a little prick with the needle, that's all. I guess I tended to get used to needles with all the blood we have to have drawn. But I know that if you have a real phobia, that's nothing to mess with and that's very legitimate in my books. I have other issues that are a bondage to me! We're just thankful for all we can do! emoticon emoticon

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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4-1HEALTHYCYNDI's Photo 4-1HEALTHYCYNDI Posts: 11,220
4/29/14 7:30 P

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Karen, I hope you find relief soon. The Orencia is working so much better for me than the Actemra. That one never really kicked in for me. I went from Remicade to Actemra to Orencia. Haven't tried Humira yet. May not as I believe that is a self injectable and I have a real fear (phobia level) of needles.

HoH Gryffindor, Hogwarts Tri-Term 5, 6, 7
C.A.M.O.Crew, PDT

NEVER GIVE UP, NEVER SURRENDER!

Striving for VES, Vibrant, Elegant & Sexy

www.folhavitoria.com


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SEATTLE58's Photo SEATTLE58 Posts: 4,779
4/29/14 6:13 P

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That's so good that it's working out for you. I hope that it continues to do so. I've been on it several more months now since starting it and it's been working pretty good, but I don't think as good as Humira was. I had to stop Humira because of an intestinal infection and then the last time because of rash that got worse and ended in just right inside my ears and on my eyelids. My Rheumy told me that he felt the Humira was the culprit that started the rashes and that Orencia is helping me to get better with that. I'm late with my weekly injection because of the insurance change with MNCare now. I'm waiting for approval. ERRR! I had to have my Leflunomide stopped (is a cousin to Methotrexate but can be more tolderable and it has been compared to Metho.) because of liver toxicity. I'm to have my blood tested in 2 weeks and if it's still high, then I'm to go to a GI Specialist. I had a lot more trouble with this when I was on Metho. I would love to do w/o it if I possibly could because I'm also on Plaquenil and Prednisone. He wants to wean me off of Prednisone too when at all possible. If the Orencia doesn't want to get any better for me, then next he wants to try me on Acemtra, I think it's spelled. My first biologic was Enbrel, which never kicked in and then the Humira and the story is already told from there! Forgive me for writing a book, but I had to tell it all! emoticon Good luck to you and I have to say to me too!

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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MYNAMEISROBYN SparkPoints: (934)
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4/29/14 4:25 P

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I am late to this discussion because I am new but I started Orencia 2 months ago after having Humira stop working and Enbrel cause an allergic reaction.

So far so good and no real side effects. I do get a headache the day after my injection and feel a little yucky, but that is about it. I also have to take Methotrexate as well.

I do not see a huge improvement but what I do see is little improvements over time. Some days I am able to do things that I couldn't do before.



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SEATTLE58's Photo SEATTLE58 Posts: 4,779
2/1/14 10:39 A

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Thanks Joanna!!

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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BKWERM's Photo BKWERM SparkPoints: (91,741)
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2/1/14 8:44 A

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emoticon on feeling better! I'm so glad it appears to be working for you.

Joanna from Dundas, Ontario
BLC20-25 - Amber Amazon Warriors
Eastern Daylight Time (EDT)

Co-Leader of Living With Rheumatoid Autoimmune Disease (RAD)


Happy and healthy people have a better chance to live with confidence and contribute value to the world than anyone else. Don't take that for granted. ~ James Clear ~


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SEATTLE58's Photo SEATTLE58 Posts: 4,779
1/31/14 10:11 A

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Wow, thanks for letting me know your experience so far with Orencia. I've been on it a little over a month now and I feel like it's kicked in. My hands and wrists are starting to feel like they used to years ago! My feet and ankles are starting to feel better too. emoticon My Rheumy put me on a tapering Prednisone because I was hurting so bad with being in-between Humira and Orencia and I know that that must of helped me, but wow, was I ever hurting still! Thank goodness for better, stronger RA meds.!! emoticon Now I'll just cross my fingers too and hope there aren't any side effects! Good luck to you too.

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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JOYISDESTINY's Photo JOYISDESTINY SparkPoints: (1,843)
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1/29/14 3:04 P

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I started Orencia 3 months ago and currently in my 4th month of self-injections. For 3 months I experienced definite decreases in exhaustion, stiffness, and pain.Then, I got a tooth pulled and the very next day I experienced a pretty serious flare that still has not let up yet. I experienced no side effects at all. Good luck! I hope this medication works for you. I think all rheumy's need to have a detective class, because it seems like it takes real detective work to see what combo of medication will work with each body. emoticon emoticon DJ

We do not know how strong we can be until being strong is the only choice we have!


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SEATTLE58's Photo SEATTLE58 Posts: 4,779
1/5/14 11:52 P

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Well, I had my first weekly injection of Orencia Friday night and so far so good and we'll just cross our fingers that everything will go A-ok, and that I can keep getting more and more better with less pain. emoticon

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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JANNY316's Photo JANNY316 Posts: 278
12/15/13 11:19 A

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I am currently on Orencia and have been for over 4 months. I am or seem to be responding pretty well to it so far. Had been on Cimzia and was not getting any relief at all. I don't find it to have any additional side effects than Humira or Enbrel did. I am praying that this medication works as well for me a Humira did for the first two years.

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SEATTLE58's Photo SEATTLE58 Posts: 4,779
12/14/13 11:31 A

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Thanks everyone for your kind and quick responses. I'm hoping that the Orencia will work good too. Our Rheumy's say that we'll be going around and around with different treatments, don't they, with side effects or finding out that one doesn't work as well, etc? Our bodies are truly a piece of science to find the right potion! emoticon emoticon emoticon

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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JANISMKW's Photo JANISMKW SparkPoints: (48,317)
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12/10/13 10:12 P

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Karen, so sorry to hear of your trouble with the Humira. Best wishes for another treatment that works for you.
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BKWERM's Photo BKWERM SparkPoints: (91,741)
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12/10/13 5:24 P

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I was on Orencia for awhile and I had the monthly infusion as well. But my rheumy took me off it when it didn't seem to be helping me. I had no side effects that I know of.

Joanna from Dundas, Ontario
BLC20-25 - Amber Amazon Warriors
Eastern Daylight Time (EDT)

Co-Leader of Living With Rheumatoid Autoimmune Disease (RAD)


Happy and healthy people have a better chance to live with confidence and contribute value to the world than anyone else. Don't take that for granted. ~ James Clear ~


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4-1HEALTHYCYNDI's Photo 4-1HEALTHYCYNDI Posts: 11,220
12/10/13 12:56 P

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I am on Orencia right now. However, I'm on the monthly infusion rather than the injections (I just can't bring myself to do the injections... needle phobia). I am having great relief with it. I have not noticed any psoriasis complications. I haven't had any side effects.

HoH Gryffindor, Hogwarts Tri-Term 5, 6, 7
C.A.M.O.Crew, PDT

NEVER GIVE UP, NEVER SURRENDER!

Striving for VES, Vibrant, Elegant & Sexy

www.folhavitoria.com


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SEATTLE58's Photo SEATTLE58 Posts: 4,779
12/10/13 12:10 P

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I will be starting Orencia after two weeks from my last injection of Humira, which was on Dec. 6th, so my first injection of Orencia will be on Dec. 20th. I'm just wondering if anyone has had any experience with it. I have felt so much better on the Humira but am going to have to stop it because of severe psoriasis developing! Even in my ears and eyelids! It's really bad on my feet and elbows. You know how they say that any existing psoriasis can be worsened. Well, they're not kidding because I had some my whole life but with Prednisone, I believe, it pretty well all disappeared and then now with Humira, it's really appeared again plus! So now my Rheumatologist wants me to try Orencia. So, I'm calling out to all my RA buddies, to see if they know anything about this biologic??!! Hugs to you all, Karen emoticon

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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