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Rheumatoid Arthritis
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Posted 8/16/2011 8:39 PM (GMT 0)
Saw rheumy today. She said if not better by next visit, it is time to start a biologic.  Geez!  Can anyone share his/her story with a biologic with me.  Any tips...any preferences?  My doc says Humira or Simponi would be best for me because I tend to get sinus infections.  She said that her patients who tend toward sinus infections don't do as well on Embrel...tend to get too many infections, I guess.   Thanks for any information or opinions you can provide.  Blessings, V
Posted 8/16/2011 10:47 PM (GMT 0)
I'm not on biologics, but I hope you find some answers.
Posted 8/16/2011 11:37 PM (GMT 0)
Thanks, Joy. Hope you are doing okay. V
Posted 8/17/2011 7:05 AM (GMT 0)
biologics aren't something to be afraid of. I'm on humira. It's decent. I don't feel its worth the trouble sometimes because it only last about a week for me when i get a new dose every two weeks. But during that first week of receiving my dose I feel amazing, the pain disappears. But like i said, it only last me a week.

I've seen other people on the forum have had good responses to the meds. It really depends on the person i guess. I haven't gotten any infections off of it and haven't really gotten too many side effects from the meds.(although my old rheumy used to fight with me about removing a piercing to reduce my chances of getting infections)

As for you taking biologics, I think you'll do fine. You just need to find the right one. Also, if you really want to I think you and your rheumy could try and exhaust different methods of treatment(different meds, vitamins, exercise habits, diets, etc) before making the change to biologics if that's what you really want.

I hope everything works out for you.
Posted 8/17/2011 12:00 PM (GMT 0)
Thank you SeroNeg! It helps to hear from those already on a biologic. My RA is really progressing, so I do think it is time to get on a new med along w/the MTX and Celeberex. I am seronegative, too. I remember reading when I was first diagnosed that seronegative RA is usually milder than seropostive RA. You couldn't prove it by me, or many others I know who are seronegative. I have read that some doctors think SeroNeg is a different disease entitiy althogether. Who knows?!? I do know one thing for sure. It takes us a lot longer to get a Dx and the help we need. Thanks so much for the information you provided.

Blessings,
V
Posted 8/17/2011 12:23 PM (GMT 0)
Funny you should say Humira use makes it less likely for you to get a sinus infection than other biologics because when I was on it I got one and I never get sick. Also had trouble with yeast infections. That's not to say the same will happen to you.

Everyone is different and you have to try things out for yourself. One person's bomb is another persons miracle.

For me it did not bring enough relief to warrant the risks involved with use. My hands felt a little better but nothing else. It did nothing for my fatigue.

I can say this. I was petrified of injecting myself. I am a needle phobe. I did use the pen but even that scared the crap out of me and I drug my feet for a good year or more before I would try it. I read all kinds of posts in many forums saying it stung really bad.

Guess what? It was a big nothing! I inject into my tummy because my legs are muscular and tummy flabby. Only one time did it sting- I think I hit a nerve ending and even that was not what people described. It was brief and not terrible.

I guess people have different ideas about what pain is or have different tolerance levels.

I wish you all the best with your decision and success with whatever you choose.

 

Posted 8/17/2011 1:42 PM (GMT 0)
The biologics generally work by suppressing your immune system. I do find that I get sick more often than I used to, but that could be attributable to a lot of factors. I've been on most of the biologics over the past 6-7 years: Remicade, Humira, Embrel and now I'm on Cymzia. Personally the Remicade and Cymzia seemed to work the best. I'm sure that's different depending on the person.

As for the experience of being on them, some complain about having to inject yourself. I think it's no big deal, not very painful when compared to the pain I'm already in. The Humira pen was not too bad, and I find the Cymzia needle very small and easy to use. They are all subcutaneous type injections, meaning you just have to get them under the skin. There's no need to hit a vein or a muscle. I generally prefer giving it to myself in the leg. A key for me was too let the needle warm up for a bit before injecting, it burns a bit if it's too cold. As the other poster mentioned, they mostly work on an every two week self-injection and the effects also wore off for me some time in the second week. The Remicade is a bit of a different deal as that requires going to a hospital/clinic to have a nurse administer it through an I/V. I actually enjoyed that, gave me a chance to relax for a few hours, albeit with a needle sticking in my arm.

In general, I don't think it's anything to be afraid of. You really do get used to injecting yourself fairly quickly. I haven't experienced much in the way of side-effects. I've had a much worse time dealing with the myriad of NSAID pills that I've been on. The side effects to those seem much worse and nearly all of them have been tough on my stomach.
Posted 8/17/2011 2:14 PM (GMT 0)
I have been on both remicade and currently on humira and methotrexate injections and it has helped me alot, I do still have some joint issues but no where near as bad as it used to be. One thing with most drugs including the biologics they can sometimes take a couple of months before you notice any change so hang in there and I say its definately worth a try for you. As for infections etc we are definately more suseptable to picking up infections as it does supress your immune system
Take care
Doreen
Posted 8/18/2011 12:48 PM (GMT 0)
Hey, Vannie...I was started on biologics in 2007; the first being Enbrel which is a self-injectable. Enbrel worked like a charm with one exception; it gave me drug-induced lupus...obvi, I was taken off it it, sadly. The next biologic was Orencia, which is given intravenously. It took about six months to kick in and then worked fairly well until a few months ago. I was then switched to Cimzia, which is a self-injectable; one syringe into each thigh once a month. I am coming up on my third injection on Saturday. Is it working? Well, hmmm....the first month was hell with the inflammation and pain and my ankles and feet swelled so bad my toes looked like little sausages. I also had a "mystery rash" return with a vengeance on my biceps, which demands a course of Prednisone to resolve. I am feeling better but not as good as I was when I was on the Orencia. My ankles and feet still swell on a daily basis but, thankfully, I have ridiculously small ankles to begin with so a little swelling isn't grotesque..LOL! My rheumy wants to give it a couple of more injections and then, if I still am in pain, look at other options.

Do the biologics have potentially nasty side-effects? Absolutely. I had a pre-cancerous growth found (by accident), and removed, last year. My GI doc does not think the Orencia caused it but when my rheumy found out, she raised an eyebrow. I have not had issues with infections such as other people have but I am extremely health conscious, watching what I eat, cardio/strength training at least four days per week, vitamin supplements, etc. and my rheumatologist completely believes that that has a great deal to do with how mobile I am (I am also stubborn as hell). According to my rheumatologist, my R.A. is at Level 10 and, on paper, I should not be as active as I am. I say all of this to say that it is completely possible to lead a fairly fulfilling life with this monster. Is it a *****? Absolutely. But, it can be done.

Also, one must remember that R.A. is a progressive disease, meaning that you will become worse over time. HOWEVER, one of the main objectives of the biologics is to slow the progression and the joint deformities. That is what a lot of people forget when they decide to forego the medications. Without them, most people's joints will become deformed at a much faster pace.

Good luck with your decision, hon, and let us know what you decide.
Posted 8/18/2011 2:57 PM (GMT 0)
I don't think anyone knows how "their" RA will progress but RAfitchick seems to have one of the severe stubborn cases.
That said- before you move on to stronger drugs I think it is important to guage what level of disease you are in. Is your blood work good or bad? Have you compared your base line x rays to current to see if there is progression? Is the pain you are experiencing severe -keeping you from function or just annoying?

What does your doctor mean "if you're not better?" My doctor pushed and pushed for me to go on a biologic because that's what the standard protocol was at the time. If you did not go into remission by x amount of time- you only had a window of time to start using the biologic as preventation.

What is remission? Everyone has a different perception. I am currently in remission per my doctor because my blood work is good, I don't swell and when he moves my joints they move to his satisfaction.


However- I have pain & stiffness every day. Certainly not awful, it's all bearable without meds but it's alway there. I try to keep physically fit and do an exercise program but there are things I cannot do because of mobility & pain. Like my wrists- they bend fine and dandy to the doctor but I can't do any kind of an exercise like a push up that requires your hand to be flat with wrist bent- OUCH! I am also tired all the time.

I know I have absolutely nothing to complain about- I really feel for those of you who really suffer like I did with my severe onset. I don't know how you endure it- I wanted to die I hurt so bad in every single joint at once. My lost independance was totally depressing. I applaud you all for keep on keeping on.

I'm completely off track with what I was trying to say.

What I wanted to convey is I think we also have to keep in mind that since we don't know what path our RA will take (which can change at any time) it's OK to keep the "Big Guns" at bay until we need them. When I finally agreed to the Humira it was because I was tired of this way I feel. I wanted to feel normal. It did not get me there. So I stopped and became accepting of my new life. If I take a turn for the worse I am keeping Orencia in my back pocket.

One thing I can say for RA- it always keeps you thinking, guessing, doubting yourself....The emotional aspect of it is as debilitating as the physical.

I wish us all the best.
Posted 8/18/2011 6:43 PM (GMT 0)
Many rheumatologists put you on one of the biologics as soon as you are diagnosed. Usually one of the tumor necrosis factor inhibitors, such as remicade or enbrel. Their reasoning is that it stops the progression of the disease and prevents joint damage. I was on Remicade, Enbrel, Humira and now finally Cimzia. (methotrexate, too)

I think the Cimzia is working better than any. I'm not real crazy about the two injections at once, though. LOL! When the first one hurts, who wants to do it again!
Posted 8/19/2011 4:46 AM (GMT 0)
Hi, I've been on 3 biologics.

Remicade, orencia and humira.

For me the humira works best but each biologic works on a different part of our immune system. So I guess thats why we all respond to them differently, it'll depend which part of your immune system has gone into overdrive.

Sorry I'm not big on the chemistry but it was all explained to me at some stage.. The T cells, our white blood cells and our TNF inhibitors.

I think momto3 explained it really well. You have to weigh up your quality of life vs. the toxicity of the meds to decide whether to take them.

I personally was on a downhill slide, not capable of working a full day or dealing with my job/kids/life, I was in so much pain, I tried meditation, relaxation therapies, even psychologists to help me deal with it all but when they put me back on humira it was like giving me my life back.

Now I am not pain free, but I can with the help of hydrotherapy, now work a full day. I can run around with my kids to various sporting activities. I can ride a bike on the flat and walk not too fast but 2-3 kilometres. I have energy to burn compared to a year ago. I have no tiredness unless I overdo it but none of that waking tiredness.

So for me the risk is worth it. To be able to enjoy life again is a wonderful gift and I'm enjoying every single drop.

I am no longer overwhelmed with the pain, I think thats the difference. It did take probably 3 months before it started working, so not a quick fix.

I prefer the injection as it gives me more control with the speed of it, the pen used to deliver it in with such a fast action I'd bruise, plus I found the plastic caps impossible to pull off with the pen.

Good luck with your descision, golitho

Posted 8/19/2011 9:15 PM (GMT 0)
I was on Humira for about 3 years.   After a few months it was like a miracle and worked well every two weeks for about 2 years then had to go on to every week and then it just stopped working.  I think after awhile our bodies build up a resistance to these drugs and we have to move on to another one.  Thank God they're coming up with new ones all the time.   Tried Remicade but had a reaction so I've been on prednisone for a few weeks.  Just got insurance approval to try Cimzia and will have my first injection on Monday.  Fingers crossed that it helps w/o any side effects as I'm running out of things to try.

Good luck and I would definately try the Humira if I were you

Alicat :-)

Posted 8/20/2011 12:08 AM (GMT 0)
nk you all for sharing your experiences!  I took the plunge and called my rheumatologist late this afternoon. I had to leave a message for her NP that I was ready to try Humira.  I know I will need blood work and a TB test and it will take a couple of weeks to be approved, I imagine.  I took a good look at how my days go, and I decided to try the Humira.

This is my morning routine, every morning:  Get up at 5:30 or six a.m., take two Tramadol.  Lay down for an hour.  Get up and take 200 mg of Celebrex and 5 mg of prednisone and lay down for an hour. Get up and take BP med and  get ready for work.  I have to go thru this routine, and take these meds or I cannot function.  I have gone from 200 mg of Tramadol a day to 300mg of Tramadol a day and from 200 mg of Celebrex a day to 400 mg of Celebrex a day.  And...I am getting worse, not better.  The swelling has not gone down in my wrists...my ankles and knees swell from time to time, and I am not able to walk very far.  My rheumy thinks I need to go to the "big guns" and so do I.  I don't want to be in a wheelchair if I can help it. 

Question:  After reading my post, do you all think it is time for a biologic, too?

Blessings, V

Posted 8/20/2011 12:20 AM (GMT 0)
I think I would in your case.
Posted 8/20/2011 10:41 AM (GMT 0)
Dear Vannie

I'm so glad that you decided to try the Humira and I hope it works as well for you as it did for me for the 3 years I was on it.  None of us like taking these drugs with their scary side effects but it becomes a quality of life issue.  I was quickly becoming crippled before the Humira and after about a month on it there were days I actually forgot I had arthritis.    Now I'm praying that the Cimzia will do the same.  Having my first injection on Monday.  Whatever happens I will never regret taking the Humira and having a reprieve for 3 years.    So even if this one doesn't work for you, keep on trying.   Let us know how you're doing and give it a few weeks to kick in.

Best wishes

Alicat yeah

Posted 8/20/2011 1:14 PM (GMT 0)
Thanks so much, Alicat! I was up all night with pain in my shoulder and wrist...very ouchy! I started thinking about how it is hard for me to walk more than a couple of blocks, and that is when I decided. I'm honestly afraid that if I don't do something, I will end up in a wheelchair. My Ra has become very aggressive, and it is attacking my knees and ankles, shoulders, wrists, and hands. I am optomistic. Thank you all for your support.
Posted 8/20/2011 1:21 PM (GMT 0)
I could hardly walk before the Humira.  I have psoriatic arthritis  and it's in my hands, feet, spine and knees the worst.    Will keep you in my prayers that it works well for you too.

Alicat :-)

Posted 8/20/2011 2:35 PM (GMT 0)
Thank you, Alicat. I used to have to crawl up the stairs, before the MTX. Now I am having trouble standing and walking becasue of my knees, ankles and feet. I am optomistic. Thank you for the info. I really appreciate it.
Posted 8/21/2011 1:52 PM (GMT 0)
Vannie-

From how you describe your day- I think you are making a wise choice to try a biologic. I wish you much success with it.
Posted 8/21/2011 3:49 PM (GMT 0)
Thank you all for your support. Yesterday was a bad one! I had to put my arm in a sling and wear a brace on my wrist. My arm is swollen and it was so painful. The sling helped a lot. I seem to be getting worse instead of better. I think I have made the right decision. Hope you all have a blessed day.

V
Posted 8/21/2011 6:54 PM (GMT 0)
Hang in there.  We've all had those days when we wonder if it's ever going to get better.   It gets cary at times and also very depressing.   We've all been there an we're all here routing for you.    Hope they get you on the Humira soon.

Alicat

Posted 8/24/2011 10:20 PM (GMT 0)
hi vannie, i hope you do well. i am rooting for you. sometimes it takes a while to find the right combination to feel better. bless you, vannie!
Posted 8/25/2011 1:10 AM (GMT 0)
Hi, Joan!

I have missed talking to you. Thanks so much for your well wishes. I was kind of scared at the idea of taking a biologic, but when I think of how I feel every morning, and how I sleep the entire weekend just so I can go to work on Monday...well, I am ready to get my life back, if that is possible. How is your foot doing? Allowed to walk yet?

Vannie
Posted 8/27/2011 12:29 AM (GMT 0)
yes, now i can walk...first week 5 to 7 minutes each day, next week 7 to 10 minutes, up to 20 minutes plus necessary walking. physical therapy is finally helping me.

i feel scared about seeing pain management doctor but maybe he can help. it's all so worrisome. i will not allow any more surgery.

am still swimming (toe that was debrided is doing ok)

did you ever find a place to swim? am very happy with that part of my life and highly recommend it. hope to do some more walking as time goes by.

take good care of yourself and hope it all improves for you.
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