RA PATIENT SCARED OF HUMIRA

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HURTINGINNJ
New Member


Date Joined Dec 2008
Total Posts : 5
   Posted 1/25/2009 12:34 PM (GMT -7)   
Hi, I have RA very severely. Ny Doc wants to put me on HUMIRA. I read all the possible side effects. They scare the heck out of me, If I could hear from RA patients who would share their experience with these TNF blockers it might take the fear out of it for me. I am truely scared.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/26/2009 3:44 AM (GMT -7)   
Hi, I was on Remicade for 5 years and now switching to Humira I also have RA, OS and Crohn's. These
TFN blockers don't bother me. I have been in remission with my CD and it also helps my arthritis's.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


koi collector
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 1/26/2009 10:49 AM (GMT -7)   

hi,

I started Enbrel on dec 27th after a few months of being worried about the side effects. i haven't had any side effects yet other than a 98% remission of my AS and a lot a pent up energy to burn. ps. i was lucky the enbrel was working at full effect in 2 days, would you believe it?


HURTINGINNJ
New Member


Date Joined Dec 2008
Total Posts : 5
   Posted 1/26/2009 12:28 PM (GMT -7)   
To teddybearweiser and koi collector: Thank you both so much! You have lightened my heart. Now I can go foward without fear but with antisapation of getting my life back.I am 52 years old and most of the time I don't leave the house for months. The pain and the extreme tiredness are crippling. Hugs to you both and prayers for your continued health improvements.

Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 226
   Posted 1/29/2009 1:53 PM (GMT -7)   
I was petrified when I first started on the Humira in August, but so far have had no problems or side effects and it's made a world of difference for me.
Before I started it the pain was unbearable on a daily basis.  Now I sometimes forget I even have arthritis.   Just have to make sure your doctor checks your blood routinely and if you have any sign of an infection or fever, stop the Humira and call the doctor.    
 
I wish I had started on it sooner.
 
Good luck.
 
Alicat :-)
psoriatic arthritis, peripheal artery disease


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 1/30/2009 1:12 AM (GMT -7)   

Humira has made a huge difference to my life. I've had no obvious side effects, been on it for roughly 6 months, but for me it took about 2 months before I felt its full affect. I feel addicted to it now because I feel so good on it, I'd hate to have to stop it. Hope that makes you feel happier.

Watch out for infections though.


HURTINGINNJ
New Member


Date Joined Dec 2008
Total Posts : 5
   Posted 1/30/2009 3:51 PM (GMT -7)   
Thank you both! Every reply makes me feel more and more confident that I will be OK and able to be the good mom mom to the eight year old grand daughter that I am raising that she deserves. It is so good to be part of a community that is willing to reach out and support and comfort its members. Thanks again and wishes of contuined improving health.

sebok57
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/1/2009 9:43 AM (GMT -7)   
I have severe psoriatic arthritis I have been taking methotxate for about 4 months. I have shown some inprovement but still suffer so. Recently switched doctors and she wants me to try humira , but I too am scared of Humira possible side effects scare the heck out of me. There is a major history of heart conditions in my family and one of the side effects can effect the heart I beleive. Has anyione heard of that side effect. By the way I am 52 and also in NJ

Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 226
   Posted 2/1/2009 9:58 AM (GMT -7)   
years ago I was put on methotrexate and diclofenac.   Had to stop it because my liver count went up.   It never helped my pain.  They tried Celebrex and I was allergic.   After that they wanted me to start on injections and I was to afraid.   Waited many years and a whole lot of pain and joint deformity later till I finally agreed to start the Humira last August.   So far I haven't had any problems and it has helped me so much.  The pain is hardly ever an issue now.
Both my Dad and brother died from heart disease and I have blockages in my legs.  I talk to my reumy about my concerns and she said Humira is not as dangerous as the over the counter Alleve I have been taking for years as far as heart problems.   I see my primary doctor every three months and he keeps on top of things.   To me it is well worth the risks to have such a better quality of life.  I'm 61 and first was diagnosed with the psoriatic arthritis in my early fifties.
 
good luck with your decision.
 
Alicat
psoriatic arthritis, peripheal artery disease


HURTINGINNJ
New Member


Date Joined Dec 2008
Total Posts : 5
   Posted 2/1/2009 1:48 PM (GMT -7)   
Dear sebok I also was on methotraxate for years until my liver numbers were unacceptable. The kind people on this site have taken away my fear. You are only 52, are you ready to suffer for another 20 or 30 years. I had so much fear because my daughter died in 2007 and I have to be here to raise her daughter for at least 10 more years. But if it were not for her I would have not been so afraid. I don't know what your responcibilities are.I don't feel the pain that you feel. I can only speak for what I am feeling. The pain, the extreme exhaustion, the isolation of not being able to participate in life. Watching the world and time go by. These things helped also in my decision to use humira. No matter what you choose I think the people on this site(and myself) will be here to support you. And pray for you. You are not alone.

sebok57
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/3/2009 6:21 AM (GMT -7)   
Thanks everyone for you responses and concern. I am seeing my primary doctor next Tuesday and I am going to discuss the side effects with her and I hope to get the nerve to try Humria. One of my other concerns is the cost my insurance doesn't cover it and it would cost me about $1780.00 for a months supply. My income isn't even that high per month. My rhumy gave me information on some assistance from the company that makes it, I am waiting for info from them also. Thanks again everyone

Emma1020
New Member


Date Joined Feb 2009
Total Posts : 2
   Posted 2/5/2009 8:47 AM (GMT -7)   
Hi there!
I have tried many drugs for my RA and none scared me quite like Humira did, I guess cause it's an injection more than anything.
I took my first dose last week, on Wednesday and felt fine afterwards. Then I woke up on Thursday feeling really sluggish and feeling exhausted. This feeling has been going on since last thursday and today is thursday and I am just now able to get out of bed for more than 30 minutes. I went to see my DR yesterday to explain what was going on and she says my bloodwork is great and that there is no link to this "exhaustion" of mine and humira.....funny how it all started though. I was just wondering if anyone else is going through or has heard of this maybe side effect of Humira?
 
Thanks!

Emma1020
New Member


Date Joined Feb 2009
Total Posts : 2
   Posted 2/5/2009 8:51 AM (GMT -7)   
As for the cost of Humira, the company that makes it has a program called "progress Program" they are AMAZING with tools and support for all your needs including financial aid. I think if you make under $75.000 per year they will cover the difference between you and your insurance and if you have no insuirance they might cover it all! They have nurses on staff 24/7 to help you it's a great program. Inquire about it some more!

Emma

psAinCanada
Regular Member


Date Joined Feb 2009
Total Posts : 34
   Posted 2/5/2009 6:02 PM (GMT -7)   
I'm a new user (2 shots so far) of Humira. I haven't had any negative reactions, and any improvements so far have been subtle. I'm very hopeful about the future with this drug, however. Like many people here, I was a MTX user until my liver enzymes got too high to continue.
 
Only you and your doctor can decide if the risks of Humira are worth the benefit. For me, it's working well. I wanted to add a thought on the risks associated with any of these drugs.
 
Personally, I ignore the laundry list of everything that could go wrong, and look at the actual events that occured during human testing. Inevitably, things go wrong. The important point, however, is to compare these events between the group that got the drug and the group that got the placebo. For example, in RA patients, 1.0% had vomitting as a side effect. That sounds bad, but then you see that 0.7% of patients receiving a placebo had vomitting. The difference is just 0.3%. In a trial that lasts many months, a lot of people will get sick to their stomach for lots of reasons. There are other examples, of course, where the difference between the drug and the placebo is much greater. The point is that you need to look at the difference between what patients taking the drug report and what patients taking the placebo report.
 
If you're switching from another drug like MTX, you can also look at the difference between negative events on MTX and Humira. For me, the risks of Humira look much lower than MTX.
 
That's probably a more complicated answer than you were looking for, but I find it helpful to try to understand what they learned in testing these drugs.
 
 
 
 
 

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 2/6/2009 12:37 PM (GMT -7)   
I have Crohn's with arthritis and have tried Remicade, Cimzia (when it was in the phase III clinical trial stage) and am now on Humira.  All have kept my Crohn's in remission but not done enough for the arthritis.  Compared to Remicade, I would do Cimzia or Humira in a heartbeat.  I have had no reaction to either Cimzia or Humira, other than an injection site reaction.  Remicade caused me to have allergic reactions, so I was very worried about having them after a Cimzia injection (that you can't turn off, like you can the IV), but everything has always gone fine.  I'm absolutely convinced that I would rather take something that has possible side effects but live a better life now, than not take the risk and maybe live longer, but have a miserable life.  But, it's all a matter of what you are comfortable with.  My GI mentioned trying Tysabri, but I am too scared to try that one, due to the PML risk.  So, it's something you have to decide for yourself...what's worse, the risk of the drug or the pain you will be in without it.     
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


HURTINGINNJ
New Member


Date Joined Dec 2008
Total Posts : 5
   Posted 2/6/2009 5:22 PM (GMT -7)   
Well guess what. I flunked two TB tests. They call it Latent TB.So, now that I was so jazzed about getting my life back,I have to be on antibiotics for three months and get a clean test first. I am glad that my Doc is so careful though. 

yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 2/7/2009 12:40 PM (GMT -7)   
Just a quick note. I was scared of starting Remicade for the same reasons. My doctor said " Tony, read the warnings on Tylenol, they will scare you to death but millions of people take it with great results. I immediatly started the Remicade and it has changed my life. My arthritis went from crippling to now I go to the gym everyday and work out with weights again and I am up to 30 minutes on the eliptical machine. That would have been unheard of before Remicade. Best wishes
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 6 months ago. Now on Remicade and iron. Feeling like a champ!
God Bless. Tony


NinaKy
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/26/2009 9:20 PM (GMT -7)   

I am new and just signed up to ask this question.

 

I just started Humira and have taken 2 shots and it is almost time to take my 3rd shot. My problem is that since I started Humira I have been feeling worse. I expected that it would take a couple of months to feel the full effects of the medicine, but I did not expect to feel worse.

 

Since I started, my joints have become more swollen and hurt quite a bit more than before and my range of motion has drastically decreased. I am also on Cytoxan and prednisone as I have systemic vasculitis (Churg-Strauss Syndrome), but I have been on this for more than a year with no worsening of the symptoms.

Has anyone out there experienced a worsening of their symptoms after they started taking Humira.

 

I do have a follow up appointment next week with my Rhuemy, but I am interested in hearing from others who might have had similar reactions to Hurmira. ThanksJ


dede1
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/10/2009 6:54 PM (GMT -7)   

NinaKy,

I have been diagnosed with RA for over a year.  It took a few months on the Humira to not be in constant pain.  I now feel pretty good most of the time.  I am 47 and work at a physical job, part time.  I take 1/2 a prescription pain killer as needed.  I also take 1/4 of a provigil 200mg when I need to have normal energy.  I was encouraged to take Methotrexate also.  It made me sick.  I was nauseated and my hair fell out.  I ended up losing enough weight that my doctor finally agreed I could go off.  I take Cyanocobalamin(b vitamin) shots about once a week.  That helps with the energy.  I take many vitamins prescribed by a doctor.  He  did blood tests to see what I needed.  I see two rheumatologists.  One is well respected in the area for RA.  The other is a more experimental/let's try this doctor.  Deep tissue massage seems to help.  I have also cut out MSG.  This is a very difficult diet.  I have found it to make a positive difference in my RA symptoms.  The main thing that helps is the Humira.  I did get an odd infection below the skin.  Antibiotics cleared it right up.  That has been the only side effect.  Also, you may want to apply cold to the area you are going to inject for about 20 minutes prior to the injection.  It really helps with the injection sting.  Good luck!  It feels so good to not hurt all the time.  :-)


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 3/18/2009 4:57 PM (GMT -7)   
I feel so much better. I saw my rhuemy today and she did not like the fact that my hands and feet are still swollen so she started preparing me for the idea we will need to add humira.
I had never read anything about it and its scary. I knew I could come here and find some real answers.

Look, about a year ago someone started a thread just like this one about starting methotrexate-and we kept it going for a long time adding our experiences through the early weeks on the drug.
Can we do that here?

Will some of you newbies to humira help me out by telling me how you are doing every few weeks-or months-it might make me less terrified.

Also do you use the pens-are they easier to use?

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 3/23/2009 4:33 PM (GMT -7)   
Hi Sjkly, I have used both pens and needles. The pens hurt me a bit more and tend to leave me a little bruised. The injections didn't hurt a bit but were very scary to use the first couple of times, I had a nurse give me a practise syringe so I could practise getting the air bubble out before I used the real syringe. The needle tends to be much sharper and just slips in really easily. My main problem with both is getting the covers off, I find it really nerve racking far worse than the injecting! Anyone else have trouble removing the caps? My thumbs are stiff and sore although there is no swelling or only minimal, it makes it hard to grip. Hope everyone is doing ok on humira, regards Jacqui

Painful Paws
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/23/2009 8:43 PM (GMT -7)   
Hi. I was on Humira for awhile in the past. unfortunantly it did not work for me so I had to move on. The injection can sting but RA hurts FAR worse and I know a lot of people who swear bt it! My family Dr. has been taking it for a couple of months and he can really tell the difference. I truely hope you get the desired results. good Luck!

Mida
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/2/2009 8:39 AM (GMT -7)   
I have AS and have been on Humira (& methotrexate) since my diagnosis last June. It has really made a difference- and fast. Those side effects though.. they freak me out too. I can't say much because I haven't got that far yet, but all I can say is to trust your doctor.

and not to scare you more.. but Humira is extremely painful (to me anyway- im kinda sensitive though). If your doc offers you the pen injection, please do yourself a huge favor and ask to get the injectable syringe instead!
15 year old girl with Ankylosing Spondylitis..
yeah I just had to get something that no one has ever heard of. :P
 
 


Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 226
   Posted 4/2/2009 4:31 PM (GMT -7)   
I've been using the Humira Pen for almost a year now and the little sting it causes is nothing compared to the pain I was suffering from my arthritis.   It only lasts a few seconds and I don't find it that bad at all.   And I only have to do it every two weeks.  It has made my quality of life 100 percent better.
 
Alicat
psoriatic arthritis, peripheal artery disease


Kpintar7
New Member


Date Joined Feb 2008
Total Posts : 1
   Posted 4/3/2009 8:32 PM (GMT -7)   
Hi! I've been using the Humira auto-injector (pen) for two months now, I have to say I have been feeling a bunch better than before. I have JRA and was diagnosed when I was 8 years old. I'm 34 now. It was a chore to walk my daughter the 2 1/2 blocks to school and even go grocery shopping. I did try Enbrel but I didn't notice a significant difference. I also take MTX 5mg a week, my liver functions rise if we go above that and also Folic Acid and Diclofenac for pain. My quality of life is 100% better than before. My activity levels are up so much I can stand and walk for an hour and I couldn't do that for more than 10 minutes two months ago.

I used to read the warnings on the labels and they scared the snot out of me. So next thing was to check the studies like another poster did and weighed the pro's and con's then decided to try it. I am loving it!

Just wanted to add my two cents in this discussion. I hope it helps.

Good Luck!
Kim
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