scared to take new drug

I'm terrified when I have to start a new drug, especially if the previous drugs haven't worked out well (or have worked well and then all of a sudden not). You know you have to take the medication to save your body from damage, but you're afraid of side effects, you're afraid of it not working and it's all really scary. For me, the scariest thing of all is to hope again. Once you've gone through a number of drugs, each time hoping that this one will be the one to work and then it doesn't, it's devastating. Mustering up the emotional strength to take that leap again can be very, very hard.

Having had those scary side effects from other drugs, you have even more reason to be frightened, but as you know, there's nothing for it. You have to allow your doctor to help you. He sounds like a wonderful doctor and I'm sure he will help you feel safe when you try Remicade. I hear good things about it and I hope that if there are side effects, they will be the kind that's easily managed.

Please let us know how it goes.

Sue,

I am also scared of RA meds. I had horrible side effects while I was on them, so I understand what you are going through. After the Orencia infusions I would feel poisoned and sleep for the rest of the day. Did your doctor ever try you on Enbrel? The only thing that I can suggest to help with the fatigue is eating raw vegetables and sprouts everyday and juicing vegetables if you have a juicer. Take digestive enzymes also-digestion takes a lot of energy and the enzymes really help you feel alive after about a week of taking them. Drink a lot of herbal tea, like peppermint and licorice tea (herbal tea only...no green or black tea). The enzymes and herbs will help your body digest and glean as much energy and nutrients as possible from your food. Don't sleep too much, especially after eating...it may make you more tired. Try stretching and taking hots baths after eating. My body always feels more awake after doing this. But, if it is all you can do to stretch and then you are fatigued, it is better to have stretched and then take a nap than to have not moved your body at all.

I hope you start feeling better soon!

Hi Sue, It is common for a person to be scared of taking a new drug. I have multiple health problems that require me to take a lot of medications. My doctors have been worked really well together. Because I have severe asthma my RA doctor did not want to put me on some of the newer drugs or on methetrixate. He choose sulfasalazine for me because it works well with people with breathing problems.

The scaryist part of taking a new medication is when you read the side effects. Some of them can be really bad. My pulmonary doctor actually recomended that I try Remicade and talked to my RA doctor about it. I took it for one year until my insurance decided they would not cover it. But it really helped my RA and other arthritis as well as actually helping with the breathing problems. I did not have any side effects from it. Even though I was on Remicaid for only one year I have felt better eversince I was on it and it has almost been three years since I stopped it. The first couple of times I took it I had to stay in the doctors office for about three hours so they could make sure I did not have any imediate side effects, after that I only had to wait thirty minutes after the tratment.

I totally understand how you feel. I have had severe ra for almost 30 years. There have been many meds I have been afraid to take. I have never taken pain meds other than tylenol arthritis because I am so afraid of the side affects and afraid of becoming addicted. I am now in a wheelchhair,unable to walk and facing many joint replacement surgeries. If I would have taken the pain meds that were prescribed to me I may have been able to keep moving and may not be in a wheelchair right now. I now tell everyone to learn from my experience and take the pain meds so you dont end up like me!

I have used remecade in the past and it does help. It just got too expensive for me. But I am now on medicare and they will hopefully pay for most of the cost. I have both RA and Osteoarthritis in my hands and knees. You won't believe the difference it makes. I am going to go back on it soon. I really know the pain you are going thru. Good Luck   Debbie

Sue, Don't feel alone, most of us are scared to take a new drug. They tell us the awful side effects and one is death. Who wouldn't be scared? I remember years ago starting Methotrexate. I sat at the table a half hour trying to get the courage to take that first pill. Then I told myself that little kids with JRA take this same med. I took it and lived. I took it for 3 years but like you, it made me sicker and sicker till one day I quit. It was like having the flu everyday and  daily headaches which I still have. My doctor put me on Minocycline and Relafen along with 5 mg of Prednisone which I have taken for 23 years in different amounts. These drugs worked great and didn't make me sick. Of course they ran their course and I went to Arava which was good for another 4 years and the last one was Rituxan.  I wish you well with your new treatments. If one makes you feel ill ask the doctor for something else. There are so many out there.

Bon

Hi Sue, glad you're back on here - your posts were the first that I read after I was diagnosed with RA. It IS scary to start on something and have no idea how it will affect you OR if it will help you at all. But you're a lot more knowledgeable than you give yourself credit for - look what all you've been through with your hands and all the meds up til now - you'll do better than you think. Take a deep breath and give it a go. My Dad always says, "you're doing better than you think!" You really are, Sue. Best to you with the med change.

  I cannot tell you how much time I spent arguing with my doctors about meds. First it was methotrexate. I took it for several years until the cough you get from it arrived. I then went on Remicade. It is a three to four hour commitment when you take it. I was lucky my insurance covered it, but it helped me so much. I was up, walking a mile or two a day and felt good with no other side effects than feeling fatigued right after the infusion. I would recommend it. I am now on Humaria and it is working well, too. My suggestion would be to do all the research you can before you start any new medication. I was on crutches and a wheel chair years ago and if it were not for the new meds coming along I would still be there. Regarding joint replacements, they will give you a new lease on life. I had my knees done 24 and 20 years ago and have had no problems with them and absolutely NO PAIN.

   I know you have and will have many decisions to make with this disease and I wish you all of the luck in the world.

   Galen

hi sue, bless your heart.  you are so young to have to be making such big decisions.  you are very much not alone.  i don't know why it helps to see all these other people that have the same problems, but it does.  get on here and talk.  it's better than doing nothing.  i wish i could help, i can pray for you!  that i know will help.  i hope you are seeing a cardiologist since you've had all the problems with your heart racing.  i'm an RN so i'm nosey about stuff like that.  i'd be afraid you have a problem that needs other treatment or medication to regulate your heart rate.  please see a cardiologist if you haven't already.  i've had RA for years, it was diagnosed about 6 yrs ago, but i think i've had it since high school, which was about 31 yrs ago.  i just started humira about a year ago and it's helped some.  but i just recently gave my m.d. the ok to start methotrexate.  i use to give that stuff in high doses to people with cancer, so i was terrified to take it.  well, after 2 months now, i over all feel better.  still have bad days, but over all better.  anyway, i hope you are feeling some better.  i always tell people about my cheap hot packs.  take old tube socks and fill them with regular cheap rice, not minute rice.  tie a knot in the top of the sock and put it in the microwave about 2&1/2 minutes, play with the time.  those socks make the best moist heat - i don't know how dry rice makes moisture, but it does.  anyway, they stay hot for a long time and you can take them to bed and keep them on your hands or feet and it's safer than a heating pad.  try it.  well, let us all know how you are.  GOOD LUCK TO YOU!! 

I too have had trouble with different arthritis meds but am now on Remicade.  I have been on the med for 2 years and what a difference it makes for me and my family!  My Grandkids call it Ama's Go-Go Juice .

I do have to take the infusion a little different as recommended - the normal flow is too fast for my system to assimilate so my infusion day means a long day at the local hospital's infusion center.  BUT the benefits that I feel for the next 5-6 weeks are well worth the one day I spend getting my treatment.

I encourage you to be brave and to try to stay active........don't get me wrong, there are still days that I am in a wheelchair, but my Grandkids love to push me around! 

The the overall benefit of this drug for me has been tremendous and has kept me doing the knitting and crocheting that I love for family and friends.  It is scary at first but be brave, and look to your friends here and at home to get you through until you are comfortable with it!

Hi I've had RA for 8 yrs now and have been on enbrel for 7 of those yrs.  Yes I hate being on such a powerful drug that can stop the progression of this horrible disease.  We are so lucky to have Ra in this decade.  My grandmother and mother weren't so lucky.  I remember how horrible my grandmother suffered w/pain and than my mother.  I try to take care of myself, meaning I excercise as much as I can and eat good and more important I drink lots of water.  For some reason the water makes me feel like I"m helping my body.  I know it may sound silly..  Sounds like you do have a good dr. that is caring.  I have a new dr. and I'm sure I drive him crazy b/c I am always screaming about side-affects.  I"ve just been added mtx as I did start to flare after a bad accident I was in and I do hate the mtx. but I take it and drink alot of water.  I have looked all these biologics and it seems that both drs I"ve had favor Enbrel.  Hopefully maybe in our life-time they may come up w/something that may cure.  I'll keep you in my thoughts and please take the meds so you don't experience the alternative.  Linda