Humira/enbrel side effects - | Arthritis Information

 

Am on 25 mg methotrextate. Not doing any good, as well as sulphasalizane. Was good with RA for many years, now that I am older it is getting much worse, as it does with increased age.  Have read

MIRACLE OF TNF BLOCKERS ARTHRITIS WITHOUT PAIN. this book from Amazon lists everything from A to Z. Wonderful for anyone considering these new biologic drugs Remicade, Humira or Enbrel. I have decided on enbrel because if I DO get something wrong from the supposedly rare side effects, it would not be in my system as long as remicade and also I may not have to take MTX with it, as you HAVE to do with remicade. Enbrel has more side effects than Humira (not much but there is a tad of difference in these drugs. However, sepsis is my main concern since we have a lowered immune system. THEN, I also read that moderate to severe RA victims (for that is what we are) we might get anyway such as lupus, lymphoma, etc. so why not try the Humira. I have heard great things, but as the book also said this is one of the most important decisions you will make. MTX initially worked but now it does ot.

Thanks

jerome
i am in the same situation as you but I have decided on biologics, though i havent started the enbrel yet. 
ive read lots about the possible side effects, and also about the possible good effects, and have come to the conclusion that the only way i can know if the anti-tnf will work for me or not is to take it.   some people do extremely well on anti-tnf, others don't do as well. 
i think its difficult to know just how it will affect you until you try it.
i've read about people being on it for a long time (many years) and doing really well, and ive read about people coming off it quickly.
i wish you luck, what ever you decide, and hopefully if you choose anti-tnf it will work for you.
anna
Jerome- I am on Humira and it has worked for me but has taken 6 months to kick in and show signs of its wonders. I have suffered repeated sinus infections and UTI's since on the Humira but after persevering with it the side effects dont matter now i have the relief from the inflamationThanks for responding. I am going in this week and will discuss my many questions with my rheumatologist who has a horrible bedside manner, but only one in area. He knows his stuff but you have to pull out his tongue to read it.  BONE UP ON ALL INFO.  If we do not have the RIGHT QUESTIONS we will not get the right answers.  I am just existing now, thank god I do not have to work and support a family, I don't know what I would do.  One shoulder has already been replaced and another is beginning to hurt?   Initially, many years ago, I basically had JUST the wrist, and it stayed that way, but as I grew older, just last few years, after all these years of being very well, my CRP and SED flew up.  I think it is very important to have a CRP test. My dr. didn't talk about it until I asked him for a marker for CRP and now he does it every blood test. Also check homocysteine to see if it is high. Seems RA does not kill you, it is all the other things created by it that does. I am also taking fish oil daily.  The plaquinil, NSAIDS did nothing to help over the years.I think my Humira took so long to kick in as due to the infections I was on large doses of antibiotics and missed  my humira for a few weeks at a time. UTI is a urinary tract infection.The drug can be expensive but check with your pharmacy coverage.  It should be covered, it may require a prior authorization, but your Rheumatologist will be used to this.  I took Enbrell for a few years.  I found it to be helpful.  I don't think I got any more illness per year than I did prior to taking it.  Its just important to stop if you are sick.  Other than than that, I had no complaints and found it helpful.I have been on humira since last August and tried enbrel for 3 months before that and have not had any serious illnesses that are not ra related, no infections or any other side effects that I can notice.

humira has taken about 4 months to kick in... but i'm still super exhausted!! I still can't walk to even the mailbox every day.

I'm lucky i have a provider, who does laundry, carries in groceries, etc and yeah i'm still achy.. i have to be really careful

i guess i'm in a flare? duh.. i don't know, i'm too Exhausted to even know!! lol

i'm not as stiff, thats one thing..  has anyone gained weight on humira?? or cravings... or is that just the pred?

frustrating, frustrating illness!! and people tell me i look "fine"..

arghh, on the outside, besides when i'm wearing my big hand braces, lol, but inside... and mentally... ack!! ack!!

 

Hi Jerome,

I've been on Enbrel injections for over 2 years now with no major side effects to date.  I was doing two injections per week while I was on a drug study and have since changed to the one 50mg injection per week.  I have noticed with the 50mg they burn like HELLoooo Mother!!  I don't feel that the enbrel has been remarkable for me but I do feel it has helped to some degree.  I would certainly rather have it than not have it.  Good luck whichever way you choose to go and let us know how your doing.

Ohh, almost forgot!!  The price of Enbrel runs around 00 per month.  If you have health insurance it's best to call them and ask them with each drug you're considering if they cover it and what the co-pay is.  Some insurances also require a medical neccessity form from your doctor before they will approve the script.  Medical neccessity really irritates my doc and he's even stated "If it wasn't medically neccessary I wouldn't write the script". 

By the way.....He knows his stuff but you have to pull out his tongue to read it.

That cracked me up!!

Peace & Love...Neasy

Neasy39268.2782638889I have been taking Humira for just about 2 years.  I really have not experienced any bad effects of it so far.  In fact, it has improved my life.  It works subtly.  Just all of a sudden you can do something you could not do before Humira.  Also, my hand is getting much better, it was going off into that direction RA hands do and it has actully improved.  The RA dr. said it is not supposed to do that but it has!  Only time I find it is problem is traveling in the world we are in today.  Taking it on a plane across country is possible but a pain with security, etc. Then keeping it refrigerated.  Not all hotels have fridges.  Based on my experience so far, I think it is a wonder drug.   

TO NEASY:  I also mentioned elsewhere if you feel a little down DO NOT take echinacea if you feel rundown and you are taking Enbrel, Humira or Remicade.  Who knew?  Echinacea could possibly increase our t cells, which we have too many of anyway. I look at it like an overactive immune system gone awry.   I have not read about echinacea anywhere else even in the books!

I also asked rheumatologist  about knowing if my CRP blood tests were high due to inflammation from RA or if I was infected, since infections run high with these new biologics - who would know the difference - is it infection or RA inflammation.  He said that if he knew answer to that he would be on television.  He said - as I read - more side effects with Remicade and also with Humira, as I read, I could possibly stop MTX.  

  I think I had all my questions answered and yes it is very expensive. Nurse gave me a coupon, but it was for people with no prescription drug coverage, not me.  It is called the SHARE PLAN for those interested. You can get it from your doctor's office, good for a year. I remember when Humira first came out, they offered it free, to compete with enbrel,  that was before the Bush Part D, when you fall in the darn drug doughnut hole and then have to pay full price until you crawl back out of it.  Hopefully, it will go generic, but I think the drug companies like Abbott, etc. will fight it. I am segueing now, but if you recall the super drug CELEBREX, well there was really no difference between that and an ordinary NSAID like generic clinoril, I got for .00 No one knew ; it was easier on the stomach but THAT WAS IT. It was a master scam and ripoff.  When drug companies fight to stop their billion dollar drugs they invented from going generic, sometimes they can just add a leeeeetle something different and call it new and improved!  FDA passes it. Hope this does not do it with this new biologic TNF's.  Same thing happened with the little purple pill for stomach disorder. No different from cheap drug.  I have some books written by a doctor exposing this but the majority don't know about it. Makes you quite ill, doesn't it.  If that's the case, then take another expensive pill. Drug companies have a lot of money tied up in celebrex, vioxx and bextra and they do not want to go down without a hard advertising media blitz as I'm sure you've seen on TV.

Do you also know that the drug companies spend more money on mass advertising their new products than in the laboratory? Problems began with lawyers, drug companies and other meds were ALLOWED to  advertise. Prior to that they could not.  Then the US also became suit crazy, as well. Also, the wooing and courting of doctors on a massive scale has not changed one iota for decades, as far back as I can remember. Drug salesmen are right there to persuade doctors to use their products. Celebrex cost me an awful lot of money, even purchasing from Canada, which was another US political problem Bush got involved in.  And yes,  I do know that the US spends millions  on labs and research, but there has to be a break somewhere. Socialized medicine is not the answer either. Well, took my TB test, ordered my first dose, saw the movie about shot and will begin next week. Wish me luck!

Joanne

Also do not take spirulina, as it also, like echinacea promotes more TNF cell factors. Great.   So that would not be good because I read it creates more problems for RA people or people with auto immune diseases.

Didn't know that.  I was looking for things in vitamin sections  to promote my immune system, not realizing I have basically an overactive system gone awry, so I would be counteracting my very expensive HUMIRA injections.  Not a lot of rheumatologists or doctors ever tell you these things. You have to be up on everything and ALSO KNOW the right questions to ask..always 

Joanne

Jerome, Welcome to the forum.  I was on Enbrel for a year without any infection incidents.  Six months of that year I spent in the jungles of Mexico, so If I were going to get an infection that would have been the place.  I did develop a bacterial intestional infection but I probably would have acquired that Enbrel or no Enbrel. It stopped working for me and I moved on to Remicade along with MXT and they've worked wonders.  I thought that MXT was usually given along with Enbrel.  Maybe I'm wrong but I thought I read some research studies last year that said that better results were achieved with using both drugs.  There are so many combinations and it seems like each RD has their own way of prescribing.  I guess it comes down to whatever works for you.  Good luck.  Keep us posted.  Lindy

Thanks Lindy for your welcome

The reason I chose Humira that IF this drug works, I can go off MTX. But with Enbrel and especially Enbrel, MTX is often required. Humira is the newer of these three drugs, so perhaps Abbott researchers were looking for something a little different to distinquish themselves from the other two TNF drugs.   By choosing Remicade, the requirement is to stay ON MTX. As I said the book I ordered Arthritis without pain..miracle of TNF blockers was great and helped me with my decision, for I initially wanted to do Remicade so I would not have to have injections as often, but I see also that if you get an infection while on these TNF drugs, Remicade is in your system a lot longer (8 weeks?)than the other two drugs, and it could have effects if you get an infection; whereas with Humira or Enbrel, you stop injections faster.

And yes, it is whatever works for you; each RA case is different. I have no nodules. My fingers are normal, but wrist is long gone.  Doctor keeps on checking and feeling around my arms, etc. and I keep on telling him I am find UNTIL I move.  When I am touched it does not cause pain. He does the same thing every visit, but he has so many patients, I think it is just routine. Had a shoulder cortisone injection a few days ago  and it did nothing. I was depressed, because I already had a left shoulder replacement and that is why I am anxious to get on Humira to halt anything ELSE coming down the pike.

Take care,

Joanne

 ' Only the mediocre are always at their best'

Hi Jerome and welcome.

I've been on Enbrel for about two years and was able to go off MTX which had been making me really sick. I have had some infections including shingles and diverticulitis but I'm 60 and more suseptible to these infections anyway. I have to be careful of any cuts because they do tend to become infected, but if I'm careful they don't happen. I get site reactions almost every time, but they go away and benedryl cream helps hurry the process. Like you, I was scared to start Enbrel, but I'm glad I did. I'm in my 3rd year of RA and the inflamation is less than it was. I have more energy although I still need more rest and work half time instead of full time.In general, I'm doing better than I was 3 years ago. This is an unpredictable disease and who knows how I'll feel next year. For now, I'll keep taking Enbrel.

Thanks Linda.  Well I will know this week. I am also taking some MSM and the plant sterols as I said they are SUPPOSED to reduce the TNF factors. I read a few years ago that the actor James Coburn supported MSM and he was crippled and confined with RA for years. He swore by MSM. I tried it taking many tablets a day a couple of years ago and it did not do anything, but am willing to try it again.  The article I just read also said that SAMe could reduce TNF, but then I read another article and it said not to take it with MTX.  So will ask my rheumatologist about that one, as well. 

Take care,

Joanne

   'Some days you are the bug; other days you are the windshield'

 I am to stay on MTX and sulphasalizane for about 2-3 more injections of Humira to see where I am.  Look up MSM on line for more info.  The article I posted elsewhere did discuss TNF levels with MSM AND SAMe, I printed it out. But just to be sure, I am seeing doctor again next week and going to bring article with me to show him about taking it.   I will not take MSM or SAMe until I see him.  If I find that article I posted here, I'll post it again. It said exactly what to take, i.e vitamins,MSM, etc. If you want it , let me know.

 I leave absolutely nothing to chance and also I ask the doctor every question I write down while at home and bring it with me.  They can easily miss something and you are the loser if it is not asked.   Got my latest blood work back (before Humira) I did another baseline last week and always have copy sent to me  and my SED and CRP and white cells normal; last month they were all ABNORMAL due to inflammation.  I can now basically feel when they are up.

  Joanne

 "The mediocre are always at their best"

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