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Posted 9/29/2015 9:20 AM (GMT 0)
Hi all,

I am to have my first injection of Humira on Thursday and I am absolutely worried sick. I am currently on mtx, prednisone, plaquenil and celebrex but I'm afraid I have had an increase in my pain with it now moving into my feet and ankles whereas it was previously only in my hands. At times the pain is absolutely unbearable which is why the doctor has now had me approved to begin Humira. I think the reason I am so worried is that I have read the side effects and it has me worried.

I am a married mother of two grown children and I am 61 and have had RA for 10 years. As I said previously, it has progressed since last Christmas to the point now where I will just about swallow anything if I was told it would get rid of the pain.

I think I am asking for some reassurance from those of you that are on it. I am worried that this won't be the one to work for me and the doctor has told me that there are others I can try. I want this to be the one that will work.

Any advice would be so very gratefully appreciated.

Kind regards


Harrington 49
Posted 9/29/2015 6:57 PM (GMT 0)
Hi Harrington49,

I am sorry to hear you are not doing well, I hope that things get better for you soon. I completely understand your statement regarding taking anything to feel better. It was exactly this that led to me taking Enbrel in 99. I was so horribly sick and was at wits end wanting to feel better.

I was terrified of the potential side effects. On the other hand I was in so much pain day in and day out that I felt that I wanted to die. :(

Biologics were relatively new back then and I had to sign a multi page form stating that I would not hold the Doctor or company liable. I was so sick I did it and I took Enbrel for 12 years and it honestly changed my life drastically.

The side effects listed for these drugs are certainly something to be concerned about but they also are all things that we as people with RA are already at a heightened risk for due to our disease. Don't take my word for it. Look it up. In fact, I think that much of the time that the listing of these is purely a way for the companies manufacturing them to cover themselves for liability due to this. They may increase the risk but the risk is already there and at a heightened level.

I have taken biologics since. I went from Enbrel to Humira and back to Enbrel then finally Orencia which I am on now with Methotrexate. The biggest thing to be concerned about with these drugs is infection according to my Doctor so I stay vigilant about this and make sure to get in to the clinic if I get even a serious cold. They treat me with some anti biotics, may have me stop my weekly injection for a week or so and I am usually better in that time.

When I started taking Enbrel I was using a walker at 26 years old and was in total agony. I could barely make it to the rest room on my own. I could not work or function at all. I had thoughts of suicide regularly. I took my first injection and in one week I was feeling so much better it was a total shock. Not all people react this way but for me it was very dramatic. Since then though no other biologic has had this dramatic affect. I am working and participating actively in life very well for the most part, though I still have pain and fatigue daily it is much much better than the alternative.

Ultimately nobody can make the decision for you. That is something that you must do for yourself and be comfortable with. For me I prayed about it and left it in his hands. Life as I was living it was simply no fun for myself or for my family who were heavy hearted seeing me in constant pain. Ultimately I decided that it would be better for me to have quality of life and potentially stem the crippling affects of RA than it would be not to.

I hope whatever decision you decide on that you find some relief regardless. We all know what it is like and it is something I would not wish on anyone. I pray that you are able to find some comfort and relief.

-Don
Posted 9/30/2015 1:43 AM (GMT 0)
Hi Don

What a lovely, lovely man you are. You wrote such a comforting reply to my plea for reassurance and you have lifted my spirits substantially. I will begin the injections and like you, I too have prayed to God that he will look after me and keep the terrible side affects away and I have also left it in his hands.

I just want to have quality of life also, so that my husband and I can do a little more travelling and just be normal again and not like an 80 year old woman dragging one foot in front of the other, no energy, no will or motivation to do anything but forcing myself to do what has to be done around the house and in my garden, but it takes me so long to do anything.

Like I said Don, you have lifted my spirits so much today after reading your lovely reply, all I can say is THANK YOU SO VERY MUCH. It has given me great comfort. I hope I also have the great result you did.

Thank you again


Regards


Jocelyn
Posted 10/1/2015 5:11 PM (GMT 0)
Thank you Jocelyn, you made MY day! :)

I hope that you feel better soon and get back to enjoying life. It can be so hard day after day feeling poorly. I struggle just finding the motivation to do the things I have always loved when I am sick and it really takes the joy out of life. It is important to remember not to lose heart when we are not doing well but it is certainly easier said than done. This forum has been a great help to me when I am feeling that way.

I hope that your results are even better than mine!
Posted 10/3/2015 5:17 AM (GMT 0)
Jocelyn,
My experience has been almost exactly the same as Don' s. Only difference is that I started on Humira then switched to Enbril. I have had RA for more than 10 yrs. I am almost 54. On Labor Day I ran a mile in a "fun run" and I do zumba regularly. I have grandkids I chase after too. Before biologics I could barely walk and horrific pain in knees and ankles. I even had to have some surgery to get rid of damage done prior to humira. The only negative is that there are so many people like us that can't get these meds, for one reason or another. confused
Btw, I still don't like giving myself shots, and humira is twice a month instead of weekly, so that is a plus. You get used to it, but you don't have to like it! smilewinkgrin
Posted 10/6/2015 5:03 AM (GMT 0)
Hi Don & Celebrate Life (cool name),

I just wanted to give you an update on my first injection of Humira. After I got myself so panicked last Wednesday, I had the injection on Thursday and it was kind of a non event really. The doctor eased my worries a little regarding the side effects.

So today is Tuesday and it has been almost a week and I don't feel any different. I know everyone is different and you have to wait and see. But as each day goes by, I am losing hope that Humira is the one for me. I know there are a few others I can try but in Australia, you have to try each one for 4 months. So I have a while to go yet on Humira, so may be it will come good. One can only hope.

Thank you so much for your support.

Kind regards


Jocelyn
Posted 10/7/2015 4:09 AM (GMT 0)
Hang in there, Orencia and Methotrexate took about 4 months before I started to notice a real difference. I hope it doesn't take that long for you but that you find some relief.
Posted 10/7/2015 11:22 AM (GMT 0)
So Dont take Humira but;

"I strongly believe that during the two years I was treated with pain medications only, the rheumatoid arthritis destroyed my body. "

and

"If I had been on RA medications to treat my disease, I believe I would not have all this calcium in my chest:

RA has "ruined" your life, not Humira.
Posted 10/9/2015 12:04 PM (GMT 0)
Hi Harrington 49
I don't want to scare you as it is Good to go into these drugs with a positive mind set BUT I Also had Bad reactions to Humira and I think had I not stopped it myself when I did I would have been in a serious state

it began with the initial injection -I expected some stinging and used the ice pack But Nothing prepared me for the intense sting/burn so much so I was crying (and im no sook)
- my Doctor later told me that this could possibly have been my body rejecting it

anyway then I went on to incredible Fatigue now we all know RA fatigue well x10
and EVERY Joint Ached

then Dizziness and Shaking my hands Still shake I can't put money in my purse without tossing it everywhere.

next came the Bleeding Bad Nose Bleeds I had about 15 then the Big one that hospitalised me and had my nose packed

also the blood tests I was having came back telling I had Leukaemia so I underwent exploratory tests it never got to full leukaemia, I then Stopped taking it

but my blood results were a mess for a year and a half After I stoped taking Humira they still showed LGL's

I am now worse than when I started on it and deathly afraid to try other biologics so am on Methotrexate , Arava , Prednisone mix

I have had reactions to other drugs and I know a lot of us RA people have allergies so I can't say if it was the drug or if it was me reacting to it .

I know you Have to Try All you can and there will be both Good and Bad stories All I can say is Keep a Diary on how you Feel Write down Every change you notice Also Get your Blood Work Done Regularly and Check it with your local Doctor.
I wish you well
Posted 10/9/2015 12:20 PM (GMT 0)
Hello danswife
I am So Sorry to hear of your heartache please don't give up hope,
knowledge is power it is good you are checking into the drugs
are you in a position to get some home assistance to help you ?
I know everyone here will be wishing you well
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