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Starting ENBREL because of more problems help.......

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Posted 3/17/2007 3:44 AM (GMT 0)
Hi there went to rhumy today and I have deeper small lesion on one foot and a rheumatois nodule. We discussed trying Orencia a new drug. I was afraid because of a couple of cases of lung cancer. I opted to try Enbrel although it has been linked to Lymphoma and carries a warning. I am very unhappy about this move but 20 mgs of MTX is not stopping the bone changes. I have normal labs and very low inflamation but it only protects joints in about 50% of the people who use it.I was so upset coming back I had a close call with a truck on my bike. The guy had no brake lights and my mind was on my appointment. I saw the Ford emblem coming closer and I slammed on my brakes, slid, swerved and stayed upright. I have done everything possible to avoid the TNF inhibitors. I am not happy about this I feel defective.
Posted 3/17/2007 4:40 AM (GMT 0)
Harley

I just started my MTX today (18 mg)and will start enbrel next week. I am also on 20 mg of Prednisone. My rhuemy has me on an aggressive, early treatment. I am also scared to try enbrel. I guess the chances are slim to get lymphomia but I don't want to take a chance on getting something worse than what I already have (cancer).

I am wondering if you have to take enbrel forever or just until you can possible achieve remission.
Posted 3/17/2007 5:33 AM (GMT 0)

I just posted about this on another thread. It's a bit long, so rather than to retype it, I'll just quote myself. LOL That sounds silly though. tongue

I said...
I was on Enbrel for 14 months. The only side effects that I noticed were local injection site reactions which slowly got smaller and smaller with each injection and some sinus infections. In all fairness, I have to say that it's likely the sinus infections were my own fault. I know I have significant sinus problems and there are things that I should be doing to ensure that they don't get infected, whether or not I am taking some form of immunosuppressant. Since I wasn't doing those things, I probably would have gotten the infections even if I wasn't taking Enbrel.

The only reason I stopped it was because I had to change Docs and the new Rheumy wasn't convinced that I needed it. We battled over my treatment for a year before I finally got a referral to a new one. By the time I left my first appt with the new guy, I had a script for Humira in my hand. We only switched me up to the Humira because I also have Crohn's Disease. At the time I started Enbrel, my Crohn's was under control. Now it is not and since Enbrel is not effective for Crohn's I needed either Humira or remicade which does treat Crohn's.

All of these meds carry risks regarding the possibility of lymphoma, activation of latent TB, opportunistic infections and medication induced Lupus, to name a few of the scariest. I delay treatment with Biologics for quite a long time and finally came to the realization that without these meds, my life was misery. I could barely move, am not able to work and end up canceling or avoiding many of the things that i used to love to do. I had to ask myself if this was the life I wanted and the answer was NO.

The decision to use these meds is never an easy one and I don't envy anyone facing the decision. I know how long and hard I agonized over it. However, I came to the realization that i had to weigh the pros and cons to come to a decision. My thinking is that I could lay here and wait as the disease slowly progressed and I got more and more debilitated because I was to afraid of the "what ifs" or I could take my chances, use the meds and make the best out of my life that I can.

Please understand that I'm not trying to tell anyone what theyshould do. This is a very personal decision and only you can make it. I am only explaining how I came to my decision.

I hope you each make the best decision for you and find a way to combat the disease with which you are comfortable.

Zeek, it's my understanding that if the Biologics get you into a remission, you would still remain on them. All too often people find that the benefits wear out just prior to the next injection or infusion anyway. The goal here is to keep the inflammation under control so that it's possible to avoid additional permanent damage.

I had my first Humira injection Tuesday evening and by the time I woke on Wed, there was a considerable improvement in the tendonitis I was suffering from. It's not gone, but I could lift my arms which had not been possible only 12 hours earlier.

There are no easy answers and I wish you both the best.

Posted 3/17/2007 4:09 PM (GMT 0)

Hey Diva and Zeek... You know, when I was first diagnosed and they prescribed Enbrel I was SO excited ('cause I finally had a diagnosis and there was a med out there that could help me).. then I came home, googled it, and read the list of side effects, and I thought, HOLY CRAP!  Seriously?  So I went BACK to my rheumy and said, "Uhm, I don't think I can do this.. this drug causes Lymphoma.. that's not good.." He said, "Rory," (my real name) "have you ever taken birth control pills?  Have you ever smoked a cigarette?  Have you ever been around 2nd hand smoke?  Have you ever had unprotected sex?"  And I said, "Yes, but what does that have to do with me taking Enbrel?"  And his reply, "Breast cancer is a side effect of taking BC pills, lung cancer is a side effect of smoking and being around 2nd hand smoke, HPV causes cervical cancer, and you get HPV by having unprotected sex with an affected member..."  And I just kind of looked at him and thought, "Well, yeah, but..." Then I had nothing, 'cause he was right... There are side effects of everything we take.  Too much tylenol causes liver problems... too much of any NSAID causes stomach problems... there are risks with everything, but sometimes the benefits out-weigh the risks... Companies have to list all the side effects, regardless of how often the problem happens... So if just ONE person takes Enbrel, and it turns their big toenail green with purple spots, they have to say, "May cause nail discoloration".... The chance is there, with everything we do and everything we take... but you have to take in your quality of life.. When I left the doctor's office that day, my choices were, take a TNF Inhibitor and improve my quality of life for myself, my husband, my kids, my job, my LIFE... or DON'T take the TNF Inhibitor, and be in a wheelchair in 6 months.. therefore effecting me, my my husband, my kids, LOSE my job.. and turn my life completely upside down.. Keah is right, in no way are we trying to pressure you guys into taking this, it is a personal choice.. and it is one that I would gladly make again.. I have been on Enbrel since March 2005, 2 years later, and I am walking without a limp.. I can jump on the trampoline with my kids.. I don't have to hear them say, "Mommy can't play with us, 'cause her feet hurt too much"... I can go out and do those things.. sometimes I over-do it, but at least I have that option now.. I wouldn't have if I didn't start taking Enbrel.. I am starting to now feel as though it is not as effective as it was before, and when I go to the rheumy, I'm going to ask him what I can do.. I may need to add MTX, I don't know.. but what I do know, is that these past 2 years, have been AWESOME for me.. I still flare, but it's no where near as bad as it was before the med.. and it normally lasts a couple days, as long as I stay off my feet... I wish you guys the best of luck.. you'll get through this.. RA and TNF Inhibitors are not a death sentence.. it seems like it at first, but you'll be fine.. I know you will..

Diva - Are you ok after your close call?  Your bike?  Girl, PLEASE be careful... we need you on here!

Zeek - How are you doing?  Sorry I haven't posted much, has been a hectic week with work.. I'll get caught up on your other threads...

Bottom line guys, whatever you decide, we'll be here for you and will walk you through it step by step.  You are not alone, in any of it.. We have all been there, sometimes a couple times.. :-)

Best wishes to the both of you, take good care..

Duck

Posted 3/19/2007 2:38 PM (GMT 0)
Thank you all so much for your help. It feels good to get some positive thoughts. I will try the Enbrel and see what happens. I need to find out if there are any warning signs of Lymphoma? Such as variations in lab work etc. my physician stated he had only one patient that did get lymphoma but she was very disabled and bedbound. He said that the lymphoma risk is associated with long term inflamation and that RA patients have a higher risk due to the nature of the disease and there are now questions if the TNF inhibitors due increase the risk or if it is just the RA. he also said that none of that metters if you get lymphoma. All I know is that it is more treatable than the lung cancer risk that may be associated with Orencia. It is a very new drug and the percent of people who got lung cancer is the same as in the general population. I will watch it for the next year and then may go with my doctors first choice. I am the one who is really in control of my health care. I would like to feel better though. Thank you all again this fourm has been my best support. I am going to write up some tips for working with SSA and will post that separately.

Posted 3/19/2007 2:39 PM (GMT 0)
Oh........ I did fine in the close call with my bike I kept the rubber side down and the shiny side up!
Posted 3/22/2007 8:25 PM (GMT 0)
hi
I'm a new member just reading your post's about Enbrel which I'm starting in about three months have to wait as in 4-6 weeks having left hip replacement, will start when wound has healed .
still worryed about enbrel
Posted 3/23/2007 11:44 AM (GMT 0)
I am starting Enbrel today. I am very worried. I have a phobia about medications. I have little trust in the medical system and less trust in the pharmicutical companies. I feel they only care about the money. This has been a struggle for me and it may continue to be a problem. Thanks again for the support.
Posted 3/23/2007 2:34 PM (GMT 0)
Good luck Diva and let us know how it works , I should be starting the Enbeal in a couple days after the authoriaztions(sp?) clear. I have been on Methx plaqenel(sp?) and a few other things and nothing has helped, I am currently taking 10mg of prednisone a day and thats the only thing that gets me moving the little bit that I can. I am worried about starting a new drug, but mainly cuz I am afraid its going to be another failed attempt and I will have to start all over yet again. But after reading everyones post here I have some hope and cant wait. And I also feel like I am not alone suffering in this world with this. SO I will be checking to se how the enbreal is working for you and will post how it is working for me as well!

The first Rhuemy I went to told me this was all in my head and I was crazy is actuall words were "u have demons you need to deal with" I seriously wanted to choke him! Well if hes right then this site proves theres alot of us with demons LOL Anyways Good luck to the people starting the new meds and continued success to the otheres!
KEllY
Posted 3/23/2007 3:17 PM (GMT 0)

Going on enbrel made a huge difference for me.  I was actually more scared to try the mtx than anything else.  I needn't have worried.  True, I am currently off the enbrel as I may be one of the reactivated tb cases, but other than that, nothing.  For me, enbrel did wear off towards the end of each week.  My rheumy offered to up my prescription to 50 mg 2X/week, but that does increase the risks of the drug so I chose not to.  As I said in an earlier post, I believe all of these drugs (the biologics as well as other DMARDs) are just bandaids.  You stop taking them, the benefits stop coming (at least for some of us).  That's not to say some people won't go into remission.  I'm simply skeptical that any remission is a direct effect from these particular drugs.  Do I want to stay on DMARDs for the rest of my life--no way.  But at this point, I'm not sure what other options there are--this is a discussion for a rheumatologist.

In any case, I wouldn't be scared to try the biologics.  Whether you continue with them or not is completely in your control.  If you don't like them, simply stop taking them.

Best of luck to all who are starting them!

El

Posted 3/24/2007 12:05 AM (GMT 0)
Hey Diva, did you do it? Let us know..
Posted 3/26/2007 5:56 AM (GMT 0)
Hi there All.......Well I tried the Enbrel on Friday. I have not had any side effects. I never have side effects anyway. I had none on 20 mg. MTX and none from the prednisone. I don't allow side effects. I hope positive thinking works! I got the sureclick and you can't even feel it. Your right Ducky I am in control and I can stop at any time, That was a good reminder. I hope everyone else is doing well. It seems like quite a few people are starting this drug.

Posted 3/26/2007 4:31 PM (GMT 0)
So how do you feel diva ? Have you noticed a change? I should be starting today or tommorow, I am nerv maily about the injection, my insuracne wont cover the sure click darn it! Hope you are feeling good . i wll post how I am doing in a few days1
Posted 3/27/2007 5:27 AM (GMT 0)
         Kellyconcord......... it is normal to be nervous when you do something new. Have your doctor show you on the first one. You can also call enliven services. Its on the Enbrel web site. The nurse will walk you through it over the phone while you are doing the injection. It is not like the shots you would get at the doctor as a kid. It is subcutaneous, just under the skin into that fatty layer below it. I think I may feel a little better. It has only been a few days so I will give it longer. I do think I have a little improvement in my hands. I have had a loss of appetite. If I don't think about it I could go all day without eating. I wonder if that will wear off.
Posted 3/29/2007 3:23 PM (GMT 0)
well i havent been able to start the enbrel becasue I devloped a cold so i have to hold off a few days. I have a close friend whom is a RN she is going to come and tech me how to shoot myself heehee I am looking forward to the loss of appetite it would be a nice change to the sweet tooth I have had ever since starting the prednisone.
Thanks for all the great advice !
Posted 3/30/2007 1:29 AM (GMT 0)
HI all,
Harley I understand where you are coming from with the meds. I am on remicade and was scared a lot when I first started. I did my homework and knew exactly what I was getting into. Things are better for me right now. I still get a little scared when I go in for it but I figured I had to do something. Tke care and let us know.
KodakPuppy
Posted 3/30/2007 5:47 AM (GMT 0)
Hi all. Well I'm OK except I am now fighting off a cold. It started 6 days after the first injection. Do I need to miss the next one? I didn't call the doc. I thought I would wait and see if it gets better. I think my daughter gave me a cold also some people at work are sick. I am very disappointed. I am going to do the second injection in the morning anyway. I don't feel any better yet I also have a cough. I used zicam today it usually helps. This is the first cold I've had in a couple of years. I'm disapointed.......Can people on Enbrel shake a cold?
Posted 3/30/2007 4:42 PM (GMT 0)
I started my enbrel last night, and it was alot better then I thought it would be thanks gods!

Diva I also have a little congestion I think its more do to the weather changeing and possiable allergies but then again it maybe a cold, so I am jus tloading up on the vitamon C intake so hopefully it will help. I would think we can fight a cold on the enbrel, but if it doesn go away or gets worse over the next week I would call the Dr thats wha tmy plan is too.
Have you noticed any change in the pain swelling and all the stuff yet? They say it takes a few weeks sometimes. It may be just in my head but I think i already feel a little tiny better today then I normally do. SoI am excitted to see what will happen over then next few weeks.
Posted 3/31/2007 5:59 AM (GMT 0)
Well I did go to the doctor today as I was having a runny nose with some soughing. I needed to go for a BP med refil anyway. He said it can be a side effect, some people get rhinitis when they start Enbrel. He checked my lungs and said it could also be poor timing for a cold. I did my second injection today. We will see whats going to happen. I thought I felt better at first too. By the end of the week I had some problems. You are suppose to get relief in two to four weeks. I'm glad you did well with the injection. This forum is great. You can always find someone going through the same things as you are. Keep posted on how you are doing.......
Posted 4/3/2007 7:48 PM (GMT 0)
Hey there.. how are you feeling Diva? how's the runny nose?
Posted 4/4/2007 5:16 AM (GMT 0)
Hi All....Well I am still having the rhinitis and sneezing. Soooooo anoying. I think I feel a little better from the Enbrel. It may be in my head but it seems the swelling is down in my kunckles. I am knitting a sweater for my dog. Thats an improvement......
Posted 4/5/2007 12:37 AM (GMT 0)
Do you have allergies? I know I have "seasonal" allergies.. maybe that's it? I'm sure you are feeling some relief from the Enbrel.. it was gradual for me, but it was WONDERFUL! :) How big is the sweater you are knitting for your dog?
Posted 4/5/2007 4:36 AM (GMT 0)
Well Ducky she is a big girl 72 lbs. Shes a boxer all love and kisses. I also have a doberman he is getting the next sweater. I am still sick sneezing coughing but I don't have a fever. The Ebbrel folks called today and asked some questions. It could be a cold be the symptoms are listed as a side effect. I think it is a cold from work. I had a complete allergy work up and I am allergic to nothing they tested for. I am very anxious because I have a motorcycle trip planned for the end of the month. I am riding my bike from California to Nevada and Arizona. It is a week long trip and I need to be in good shape. Do you ever get regular colds on the Enbrel? Do they get better on their own? This is bad timing because it makes me want to stop the drug. I currently feel worse not better. I think there is some change in my joints but I am so stuffed up and miserable I can't enjoy it. Got any cheese to go with my whine?
Posted 4/5/2007 6:39 PM (GMT 0)
I do have cheese as a matter of fact! And summer sausage! LOL LOL..... Honestly, I really haven't gotten any colds since I've been on Enbrel.. now I did get a lot of UTIs though... holey moley those were wicked.. but am good now.. Maybe it's a change of weather thing? Has the weather been screwy lately? I know when the seasons change I always get a little cold.. like my body is trying to adjust.. hang in there Diva, I know you'll be able to make your ride..
Posted 4/7/2007 3:35 AM (GMT 0)
I am on humira and it has been a life saver for me.i have crohns and three different types of arthritis and I was put on remicade,methotrexate to name a few and in this peroid of time I was in a wheel chair because i was so swollen and my arhtritis was so bad that i know longer could walk and the pain was so bad there was peroids that I would pray to god to let me die because I did not want to live that way.I to was scared of these meds but in the end I knew this was my last chance.I had my first Humira shot at my Rheumatolagist office and I did fine.it did sting a little and it was a little red around the enjection site.But with in four months i was out of the wheel chair and i was starting to get some relife from the pain.I did have to have physical theraphy because my muscels (sp)had to be streanthend again so I could walk.I how ever do have to use a cane but thats alot better than being in that chair.SoHumira has done what the others could not do.Please let us know what you discide(sp).
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