I cannot tell you how depressed I am right now. Just got back from rheumy, he told me my ra is VERY aggressive and I should start on Remicade. I am trying to choose between Remicade, Humira, or Enbrel. If I have to give myself injections, I think Humira would be better but it has not been approved as long as the others. I am SCARED. I feel like I am one of those people that is always exposed to infections and I don't think I have that strong of an immune system in the first place. He said I am constantly inflamed, even with mtx, plaquenil, and relafen. I have pelvic damage, damage in my feet and maybe in one knee. This is overwhelming. I know it is my decision but I would greatly appreciate to hear your experiences and if you think there are pros and cons for choosing which one of these medications. Maybe some of you have tried more than one? I am so scared I will get an infection that will make matters worse or I am not ready to die. You think I am a drama queen? I don't think so after reading all of the side effects. Please help me by sharing your experiences. Gratefully, RoxanneRoxy, when I was considering Biologics I read up on all of them. I decided to try Remicade because it's an IV infusion and lasts longer than the Enbrel and Humira and I wasn't too crazy about giving myself shots. If you have aggressive RA, try the Remicade. You need to stop the jt destruction in it's tracks. When your jts are damaged you can do nothing about them! Unfortunately, my RA is kinda under control now, but I'm having inflamation in my chest and having chest pains. Saw a heart dr and he says I have mitral valve prolapse. It's scaring me to death. When I lay down to sleep my chest hurts and I keep having these pains in my chest. He saws I'm at higher risk for heart attack and stroke now. Oh brother. You HAVE to get the inflammation under control cause it affects our internal organs!!! Good luck dear!
Hi Roxanne,
I was diagnosed with RA about 2 & 1/2 years ago. I have been taking Enbrel for about two years. I realize how depressing RA can be. Enbrel has made my life better. I pray that you find the medication that will help you find the way out of depression. The pain that we suffer can be bad, but life is wonderful. Hang in there.
Bob Bernhard
You are not a Drama Queen! You are a good person with a lot to deal with! And you have come to the right place. We all understand what you are going through. I hope it will help to know that I too was scared to take the meds. Mine was aggressive too and I sat in the doctors office scared to make the decision. And he was so kind and didn't rush my decision. But, I thought which is the worse...the pain and RA's effect on my organs?... or the meds? And then I thought which is the worse...letting the disease run freely?... or the meds lowering my immune system? Now I truly am not trying to make your decision. Only you can do that. I am just sharing how I made mine. And the reasons why I decided to take the bull by the horns and take the meds. To be truthful at first I felt dizzy and sick from the meds and wanted to stop them. But now 2 months later I am doing better and the side effects are getting better too. Don't get me wrong it is not perfect. I am having breathing trouble and am seeing a pulmonologist next week. But I am walking sooo much better and my husband and I are leaving tomorrow for a 5 day trip which couldn't have happened with my feet the way they were. I may have to stick around the hotel's beach instead of massive sight seeing but we are going and that is what is important! We are both so excited we are like kids! And I have gone back to my positive way of thinking that I felt before I got diagnosed. And I keep the faith which is most important! And Roxy, after 2 months the fear has subsided and I feel more like myself again. So hang in there and don't be too hard on yourself. If you have faith in your doctor like I have in mine, think of yourself as a team fighting this together. Do your part and he will do his and hopefully you will feel better soon. As for catching something...I decided I could not live in a bubble. I just watch where I go (not in big crouds), stay away from people who I know are sick and keep my hands clean. And then as I said...have faith. Hope this helped! Keep in touch and I hope you feel better. Susan Lee
Hi Roxy,
So sorry to hear about your appointment. I
understand it is discouraging to hear things like that.
I don't have a whole lot of infomation to offer,
but I can tell you that I have been on Remicade for
about 2 months. (I also take mtx & pred). I too was
afraid to take the remicade 9even the mtx0 especially
because I'm one of those people who is sick 'all the
time' (mostly sinus/stomach/migraine/issues).
But I have to say that so far I'm doing pretty good. I
don't think my health has decreased any and I am in
contact with a lot of sick people on public
transportation! I just try to wash my hands often and
try to just watch myself around those who are sick.
So for me the remicade is working well and I'm really
glad I started it as mine is aggressive too.
Hope this helps some. Take care and get some
rest.
Blessings,
Tara L
I am so grateful for your input. I need time. I want to find out what my insurance is paying for as they are trying to call this a pre-existing condition and will not have to pay for six months - well now three months. I wish I knew which one to choose. My rd said it is not a good idea to change my mind once I start one. I am so afraid of getting an infection. I don't have family in the area and I am pretty much on my own. I will keep thinking, and reading, and coming back here and I hope someday soon, I can make a decision that I feel like I did the right thing. I am concerned because RD was tapering the prednisone but now he wants me on it all the time. Prednisone is another scary one. UGHRoxy, you can get a video tape and booklet on each of the Biologics, Remicade, Humara and Enbrel. Maybe having more info will make the choice easier for you. Roxy,
I'm sorry this is such a hard decision. I am no help on any of
the meds personally. I've heard both good and bad about all
three. It's one of those, what works for one doesn't for
another. My opinion is give one a trial of say 6-8 months.
If it doesn't help, speak to your doc about switching.
As someone pointed out, which is worse, the things untreated or even
poorly treated RA can do or taking a med that may or may not cause you
to have side effects and being monitored closely while on those
meds?
Sometimes agressive diseases call for aggressive treatments.
Responsible docs monitor patients closely for problems. How much
do you trust your doctor? Talk this over with him if you feel you
don't want remicaide yet. He may have a reason to pick on med
over the other. Some docs pick one over the other for monetary
reasons, both the conecerns of the patient and their own gain.
Others have had better success with patients on one drug vs
another.
I do hope you can come to a decision soon for your sake. Don't
rush it but don't put it off too long either. Trust me...being
untreated or poorly treated is more damaging than good.
hugs, wayney
Thanks Karen. I have one on Remicade but it is obviously trying to convince you that Remicade's the one to use. I HATE PHARMACEUTICAL INFOMERCIALS !!!!!!!!!!!!!!
Dearest Roxy,
I'm just so sorry, I don't have any experience or knowledge when it comes to this....I just want you to know I am thinking of you with lots of love and prayers. Gather your strength, make your decision and move ahead. The road for you has been so rough. You've come to a "crossroad" so to speak.....which way to go?? Love and Prayer will guide you, go with your head held high, I still remember our dear "Roxy with a Plan".
We love you Roxy, we'll help you through!!
June, I love how prednisone makes me feel but the longer you are on it, the more long lasting are the side effects - bone loss, weight gain, thin skin and it is harder to get off of it because your adrenal gland can atrophy. That is why I think it is so hard for many to quit taking it. It also is hard on your immune system and the mood swings I am already experiencing. I am euphoric when I am first on it and then I get really grouchy. You also build a tolerance to it and I like to be able to use it when I am having a really bad flare for relief. It is the only thing that has worked so far for me. If I am wrong on any of this info - please correct me you guys. To tell you the truth - they all scare me but when you research prednisone - it consistently warns you not to take it long term unless absolutely neccessary.
Roxy and June,
I have been on Prednisone for almost 20 years now. To me, it helps relieve the flareups tremendously. I have been up as high as 25 mgs. a day to my present dosage of 5 mgs. Gained lots and lots of weight and lost it. My last bone density test was good. Would I recommend Prednisone to someone. NO WAY! my doc has told me that I'll never get off Pred due to the fact that my body has stopped making the steroids it needs on its own. I am just waiting for all the bad stuff to catch up with me. But I still take it....it works.
It's one of those;
Do as I say, not as I do!
Oh just wondering. I could not remember why you said you were scared of it. Well, I have been on 5mg for a little over 2 years now. I stopped taking it after I left my RD and was on it for over 2 years then too at 5mg. I was off it for about 1 year and then I asked my GP to put me back on 5mg until I decided on if I wanted to take MTX and now I am on it until I get insurance again and find something else other then MTX.
I have weight gain, but only gained 20+ lbs in 5 years of taking it. But I did not gain any weight when I was pregnant and on pred. Thinning skin...I might have that don't really know though, and I had bone loss before I started pred. And the mood swings I am not getting as much since I am not on MTX. I have not been so touchy or grouchy. Kinda feel like I did when I was pregnant...lol...happy go lucky...except the pain and swelling makes me kinda gloom.
On the side of my pred bottle it says to stay away from people with contagious diseases or illnesses. I have yet to get sick when everyone else around here gets sick. I have yet to get any flu, virus, or anything else that my family has had. I have not been ill in years. I have had kidney infections & UTI but those were from drinking more cokes then water and just before I realized i was pregnant. Other then those I have not been sick.
Roxy~Honey...please don't think of this as the end of the world, ok? I realize how upsetting it all is for you, but what you've been doing isn't working. This is good news for you sweetheart. These medications have give so many of us our lives back.
This time last year I was right where you are now. I had the exact same decision to make. I was scared....and excited at the same time. My doctor gave me lit. on all the biologics and told me to think it over. He did not recommend one over the other and said in his opinion they were all about the same. Remicaid is of coarse the IV, Enbrel is two shots a week, and Humira starting out is two shots a month. I thought the IV theropy sounded so serious. I didn't want to admit I was that bad yet....and had in the back of my mind I'd save that for down the road. (Everything wears off for me eventually; as it does many others here) So, I choose the twice a month shot I could do from home. I thought it suited my schedule better as well considering if you do Remicade you have to go to the doctors office every 6 to 8 weeks for infusions that last several hours. (More time off work for me)
The Humira took months to work...inconjunction with 22.5 mg of MTX. After 6 months it was working but only lasting about 6 days. I changed to weekly injections. I have problems, I won't lie to you....but I'm so much better than I was a year ago. If I had it to do over again; I would have started with Remicade. I hate doing the injections, so my husband does it for me. He doesn't mind...but if I did the infusions I could go once every 8 weeks, and forget it.
As for being sick? I have always been a fairly healthy person. Besides RA and a few "female" issues I have rarely been sick in the past 20 years. Since Humira I have had several bladder infections; that's all. I do worry about illness....but mainly because I don't want to have to come off of my meds. That's my biggest fear. They work so well I dread a set back if I'm taken off of them even for a few weeks...but that hasn't happened. Even while on antibiotics for the bladder infections I continued with my RA meds at my doctors advice.
Sweetie; you have been misrable for so long now. You asked us to remind you what a great life you have, remember? Now's your chance to take it back. Don't let fear stand in your way of enjoying your life.
And one last thing Rox. You are not alone. You have Brett; and soon you will be married. That's a wonderful thing. Start controling your RA so you can consentrate on happier things in your life.
We love you!! I know this is a hard choice to make. I don't mean to seem like I have all the answers....but I have been in your shoes. You'll only regret waiting.
We're here for you. Don't forget that.
Lovie
Oh; one last thing. Double and Triple check with your insurance company. I pay a month for Humira my insurance pays the rest. If I had to flip the entire bill it would be a little over 00 a month for 4 injections. Needless to say I would not be on Humira. Their all very costly.
Roxy,
Ive read all the posts and i too had to make the decision. It took me a year, A YEAR!! Doc suggested it to me and i said emphatically NO! I am TERRIFIED of needles.... well a year later i was almost out of oral med options so we talked about all 3. Remicade, like Lovie said is several hours in the hospital. For me that also meant time off work during the school year.
Discussing humira and enbrel, we figured the ins would pay for humira since it was every other week instead of weekly. (enbrel is now weekly, more so than 2x a week) well ins paid for enbrel weekly and like lovie saied it is expensive!! I pay a month ( they come 4 per box as one "refill") and the bill shows about 00 total!!!
Well i had a visiting nurse come for 3 weeks to help show me and get over fear of shots. I took the first dose by myself.. shaking the whole time, but i did it myself. Feels stupid, but the nurse was so excited for me and encouraged and congratulated me when i did it. within 24 hours (and everyone is different) i felt improvement, tho now that i look back it took about 4 months before i felt almost normal again. I now give myself the shot every friday morning. Slowly and premeditatedly (is that a word?) and theres so little pain...and for me... i need gas at the dentist and it took 7 nurses to hold me down for my first cavity numbing shot!!!!!
For being sick... well i work in a public high school. the kids in high school are a bit better than elementary school kids, but not by much.. i kept kleenex and hand sanitizer in my room for them and told them to stay home when they were sick. I am not good for wshing my hands enough...I only got a cold 2 times the whole year and i have been on Pred for years and MTX about 2 years and enbrel since feb. This last episode of sickness i think is a break for my body. Stress... or lackof allowed my body to get sick. I didnot have to stop any of my meds, and after 1 day i felt 100% better!!
ok off my soapbox... again not telling you that this is best, just how it was for me.. and to give you insight for enbrel. Good luck in your decision.. i was there and it took me a year...
On top of it all - Last night I got in a huge fight with Brett. He packed up his stuff and went home. I didn't tell him what had happened at the rheumy office.
Wayney, you have never offended me and Joonie - I think my biggest concern is weight gain. When I put weight on - the only way I can lose it is exercise like crazy. Since ra, my exercise has drastically reduced. It is a lot different Joonie at 40 then your age. Your metabolism really slows down. I have to really starve to lose weight without exercise so I am trying very hard to keep the weight off. I am worried about the 5mg. a day he has me on now. He wanted to put me on 10 but I said no.
I hate the idea of sitting in doctors office for remicade. I think I would prefer humira but this bowel thing rd is predicting OMG I also didn't tell you, he got some more tests back and I also have permanent joint damage in my feet and one of my knees he said "looks suspicious". I have notice when I am rock climbing that my one knee does not have the strength it used to have to pull my weight up. This is all so depressing. NOt just one thing, ALL OF IT.
Anyway, I am just rambling. I am kinda numb today. It is going to be 100 degrees and I hate the heat so I am going to take my dogs for a walk. I will check back in with you guys later. All of you have renewed my faith in humanity. It is amazing how caring you all have been. There are some very special people on this board and I feel so blessed to have found you.
LOVE
I'm the group administrator for our office and I got a booklet yesterday and the headline of the article was "Selected Self-Injectable Drugs to be Excluded from Medical Benefit" My heart dropped to my stomach!! As I read on further it goes on to tell they are talking about no longer being covered when administered in a provider's office. Members will need to purchase their self-injectable drugs at a pharmacy.
I think that puts me in the clear....but it scared me. There's no way I could take any of these medications if the insurance didn't cover it.
I've been very lucky to have my insurace and really only have to pay co-pays and medicine co-pays over the years.
I'm sorry to hear about your fight with Brett Roxy. Maybe you should have told him the truth about what was going on with you...then again; I do understand. I went through times when I completely shut my husband (then boyfriend) out of my life. He didn't understand what was wrong with me at times....and I was almost to exhasted to explain it...or care to. At times it was easier to deal with it alone; or at least I thought that was the case. I now know that wasn't true.
Hang in there.
Roxy,You are so right Wayney. My husband is a fixer. No matter how large or small my problem is my husband always wants to fix it for me. Problem is with RA; he can't quite fix this. He's learning more and more about dealing with it and learning what makes him feel like he's helping...but men are just not good at sitting by helplessly. I guess for the most part...that's a good thing.
Yeah Gar used to try to be a fixer for my RA. Now, he just "fixes" the immediate symptoms and tries to make life easier on me in general. He'll occasionally mention some thing he's heard that helps, whether is it medicine wise or herbal or alternative. It's funny, how offensive that is when people try to insist something is a miracle but how when he does it out of love and genuine trying to help, it doesn't bother me.
We're lucky to have our White Nights; I wouldn't trade it for anything.
It always makes me feel better (mentally at least) when they come to the recue. I haven't always had that...and I never realized how much I needed it.
I have been on Remicade for 2 years and before I started my infusions I could barely walk and had zero energy. After I had my first treatment my energy level was great and I was able to walk so much better. My Rheumy told me that with Remicade he can increase the dosage more as it is needed but with Humira and Enbrel he can't. In the 2 years, he has had to increase the dosage and next week will do it again. I wouldn't give it up for anything especially after they took Bextra off the market. My daughter is also on it and is doing great. We both have had no infections. It sounds like you truly need to be on something and no matter which one you choose I am sure you will feel so much better - it will amaze you.
Staylor, I appreciate your input. I am leaning toward Remicade. Three hours every 8 weeks? I called insurance today and I am more hopeful that eventually they will pay for all this stuff. This board has been a lifesaver for me.I understand about the weight gain, but I do not really have a good metabolism. At least I never thought I did. I do not exercise, I eat sweets and fast foods all the time (I crave sugar every hour), I was sleeping atleast 12 hrs a day, and I do nothing to loose weight. BUT I have lost 6 pounds! I think it had to do with being on MTX. I did take 10mg of pred for a whole month (30 pills) and did not gain any weight, I actually lost 2 lbs.
I will stop about pred now...lol....can't make everyone a pred junkie then there will not be enough left me....
Hi there,
Thought I'd chime in on the pred use. It's kind of
strange becaue when i first started taking it I lost
weight. I think it was because I was feeling
better and less depressed. And since I usually eat
to take my mind off pain and depression, I
wasn't eating as much.
But when I started tapering down, I started gaining
weight! (I've gained about 10 lbs.) Don't really know
what the correlation is, but a couple of days ago I
increaed the pred a little due to a flare, and I feel so
much better mentally & physically. I have more
energy and am not eating as much. Hope that
lasts!
We'll see. So I guess at this point I would say that I
do like pred. but time will tell.
Roxy-so sorry to hear about your fight with brett-can
be so tramatic. Hope all will get back to normal
soon .
Tara L
((((((((((Roxy)))))))))))
I am sorry i haven't been around the last couple days, but i want you to know that I feel for you!!!! Do take some time to look over your options and in making your decision. There are excellent books at the library and at some book stores for you to read and research with. My ra and pa are both agrresive and getting them under control is a job all in itself. Give your sweetie a little breathing room. This sounds silly,but one day after I got my news as to what going on with me, I wrote a letter to my husband telling him, my fears, about my pain, and about the damn fustration, anger, etc. and I told him that there were going to be alot of days that I may lash out at him because I was so frighten and angry as to what was going on with me. I also wrote how much I love him and how I want him to know that he is so important to me and that I plan on being with him for the rest of our lives. I asked him to please forgive me for all the times I will be angryand use him as my whipping post. I asked him to let me know when I am being too hard or difficult to him. He is to let me know when I need to back off and cool down. Vic has been my rock and my anchor through all of this, and I don't know what I would do without him Yes we have our arguments, but they never ever last for more than a couple hours. Roxy don't be hard on yourself things will work out between you and Brett. Right now you need to concetrate on you and your decision. Again I am so sorry for your news, but i wante to let you know that you are not alone. xoxoxoxoxoxo meme
ps you can always just go to the justice of the peace get married and then have a party later down the road once you have started your meds and are feeling better. That way you don't have as much pressure on you. Just take the immediate family and the judge will marry you anywhere you want, usually, in a park, on a beach, at your home, etc. You don't have to get married at city hall. I understand about the big wedding thing too Roxy. This was my second marriage and my first one wasn't exactly a big affair. I did want a huge fancy wedding; but as time went on and I started plannng it I became exhasted just from thinking about all there was to do. My husband finally helped me decide that it would be much easier if we just called it a "Wedding Moon" and we got married at our Honeymoon resort in the Bahamas!! It was fabulous and so easy and relaxed. I don't regret a thing.
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