scared to take new drug

By Sue Monday, February 09, 2009

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Hi everyone,

I know I have not been on in such a long time.. I had some problems with my health. I was taking Methotrexate and I got really sick. I thought just feeling really bad/tired, thinking it was just the way it was on that drug. Then For Christams eve I got the flu.. I had to go off the metho. Three weeks later I went back on. Well the first three pills

I was ok.. the next three I got so sick! I mean hard to breathe! Then I could not take a deep breath at all..

So I went to me MD thinking ok I have like a virus.. Well no... My heart rate was 167 a min! my lungs were clear and he said we have to take you off the metho.. So he did and a few weeks later I went to my RA doc and I felt better breathing wise. I could take a deep breath, and it did not hurt. But... My hands! my right hand is worse then my left.

So my RA doctor says to me. you do know celebrex will not slow this down.. and since I can not have any steroids because they make my heart go crazy he can not give me that. He said I can treat you, but you will be harder to treat. He really wants me to go on remecade. He said he would not strong arm me. But.. as he looked at my hand he said no matter if you go on Reacade or not I have to see you in two months..

So he put me on Leflunomide. That is NOT the brand name. If is ONLY for RA..

But. I am so scared! Anyone scard to take new drugs besides me? I know I have to I mean I can see my hands! The pain is unreal and he did give me a pain killer and I am scared to take it. I know big baby! I just want this to go away, but every time I see my RA doctor it is another smack in the face that this is not just going away. It is getting worse! So the nurse there is checking into my insurance co and remestart program to get me started. I do like my doctor. He takes so much time with me explaning things to me. he does not bully you, but he does tell you how it is. I can see it! my hands are a mess..

Help me please just take this dam drug and feel safe.. :(

thank you all so very much!

Comments (21) | Add comment

Lene Andersen, Health Guide

2/10/09 11:12am

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

2/10/09 12:14pm

Hi,

I took it last night after dinner like the doctor said. and this morning and even now I feel so druged! I feel very tired and I have tried to eat and can not. it makes me feel sick to eat. I tried tea and that was no good. maybe if I nap I will feel less druged. I will try to eat lunch, but I am to take this everyday with my big meal of the day. I know right now I could NOT drive. maybe I wll feel better if I could only eat. I could really just sit and stair into space for hours. I hope this passes. He did say if you have any problems call me right away. I just do not want to give up so fast on this as oho gee another pill I can not take and does not work! are you tired of this? I am so tired of RA I could cry..

Lene Andersen, Health Guide

2/10/09 1:50pm

Your body can need a bit of time to adjust to new medication, so they often have much stronger effect in the beginning before you get used to the new situation. What has helped me in the past is to start at a very low dose, e.g., half of the recommended dose, and then gradually increase. It gives you an opportunity to balance the benefits of the drugs with the side effects. Don't do this without speaking to your doctor first, though.

If you feel this awful, call your doctor - he's clearly indicated that he's available if you have any questions or concerns, so I'd suggest contacting him. Talking about perhaps modifying that those doesn't mean you're giving up on the drug - you'd just be approaching it in a slightly different way that may be more successful.

robin

2/10/09 12:43pm

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!

Sue

2/10/09 4:08pm

Thank you for all the information about food and what to eat.. My doctor only said about the remacade he said that is the one he likes to start with. If I do not react well to it then we will go from there. I know I need to give this drug sometime, and i will see how I feel after taking it again tonight before calling my doctor.

He also gave me a pain pill, but I am not taking it until I am sure I am ok with this. one pill at a time for me right now...

I can tell everyone here this is the ONLY place for support. it is like no one out there understand this but everyone here. We are all int he same boat and it is so nice to not be alone.

Thank you!

sue

1grnthmb

2/10/09 1:25pm

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.

lorna

2/11/09 10:29am

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!

Sue

2/11/09 10:49am

You are one of the people I want to talk to. To see just where RA has taken you without meds.. My sister has an in law that has RA. he was in a wheelchair until he started taking these drugs. Now he is out of the wheel chair! It was a long road for him, but it just goes to show what these drugs can do. When ever I feel like giving up on these drug and not take anything for this I think to myself I wonder If you really do end up in a wheel chair? Or do people with RA really get to the point of being in bed? I guess they really do.. I am only 44 years old with my first grand child on the way. I want to hold him and love him up. So I will take these drugs for all my grand children to come..

after a year of pain I now asked for pain meds. I can not take tylenol I have a bad reaction to it. This pain med I took before when I cut my finger almost off. So I know I can take it. I asked for a low mg though. I am trying to get back into walking once I feel less druged. Keep sharing your story to people with RA. It did help me take these drugs. Replacement parts are scary! So I guess if I do not want to have to have replacment parts I better try threse drugs.. take this pain pill and keep moving.

I will keep you in my prayers..

hang in there!

Sue

debora51

2/12/09 11:15am

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

2/12/09 2:54pm

do you know about Remestart? It is a program that helps pay for the drug. My RA doctor had me fill out the app and today by fedx I got the welcome letter from them. so I will be able to have 8 treatments. I am trying to get use to what he jsut gave me and I know I will have to take this along with that. I know this is now my life and it is NO fun!

It is so nice to have so many people understand.

Thank you for your support :)

Sue

debora51

2/12/09 3:42pm

I was just told that I got accepted in a program called QMB they will pay the premiums for part a and b with medicare, they will also pay my medicare co-insurance and deductible cost. Thank God I can't wait to get the treatments started. Good Kuck with your treatments. Debbie

bon410

2/12/09 1:04pm

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

amy's compassion

2/12/09 2:53pm

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.

Galen Gilchrist

2/12/09 3:05pm

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

melanie

2/13/09 2:11am

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!!

Sue

2/13/09 10:55am

Hi,

I have a question for you. What should your heart rate be? It seems that meds go right to my heart and it flyes in my cheast. Yes my MD is on top of this. Right away he gave me an EKG. Then he has me at home taking my heart rate and blood pressure. He said he can not treat me for high blood pressure if I do not have it. So I have a wrist cuff and I have been taking it. It has been like 120 over 82. or like 120 over 81. but my heart rate has been like 88 or like 90. Now when I had to talk on the phone with a person who got me upset it went up to 150 over 99 and rate 119! but right after the call it went right back down. So I still take it a few times a day. then I have to go back to him with this so he can get a clear picture of this. I am a little over weight too. Could I be so out of shape as well? Ever since I was a child I had bad reaction to meds and it was always my heart rate that went up. There are so many drugs I can not take. Once off the methotrexate the cough went away and my breathing is fine. This was another thing the doctor wanted to see. He had to see if the breathing was from somthing wrong with my heart or this methotrexate. So now he feels it was the methotrexate since this problem went away. I still have to go back to him again with all this information. For sure if there is a hint of a problem he will send me. He is our family doctor and has been for years.

yes it does help to talk here :) just knowing we are not alone is wonderful.

Thanks

Sue

melanie

2/13/09 1:23pm

hi sue, that bp sounds ok. 120/80 is what most doctor's consider normal/average. and a pulse of 60 to 100 is ok. so, your running in the 80's is good. a pulse over 120 is not normal, except if you are actively exercising. even getting upset or mad shouldn't send your pulse above 120. be very sure you are following the instructions to that wrist cuff. when those first came out, i played with several - comparing them to manual cuff readings. the wrist cuffs were habitually low. that was several years ago. doctors and pharmacists were telling people not to buy them. but i've heard and read about them recently and you need to make sure you place your arm where the directions say, probably at heart level. just wanted to point that out. i don't imagine you are anymore over weight than any of us. with RA it forces you to not want to do anything. but just the fact of being over weight shouldn't be what is causing your heart rate to race. if you can choose, please ask for a referral to a cardiologist. if you were my daughter, i'd be on your butt about it!! how are your hands? any better? e-mail me so we can talk more. melanie meiel@aol.com

Sue

2/14/09 12:41pm

Thank you for all that information.. This litle heart of mine has always been this way. My mom said that when I was little my heart would pound everytime I had to go to the doctors, or if I was upset. Or some meds made that happen to me too. So this doctor knows about all of this. When I was 17 and I have to have teeth taken out and they put me under they had one hell of a time waking me up! My mom said they were going to call 911. I just have such a hard time with meds.once I had to go on steroids, and that not only made my heart rase but skip beats! My doctor was not happy with that. He said to me never again! and he called my RA doctor and told him no steroids of any kind not even a low mg NONE!

But with all of that my doctor said he still wants to make sure my heart is ok. I am scard to go back to him! I do know he will be happy to see it all come down. He wanted me to take my heart rate and count within 15 sec my beats. he said as long as it is 22 beats per min and no more then that it is ok.But I also know he does not fool around and will send me to the heart doctor. Just he did with my father in law and my mother in law. He was so good with me when I went to see what was wrong with me in the first place. I said to him I am so scared to know what is going on! He stopped, looked at me and said. It is your body, and we can see what is going on or not. I want you to know though what ever this is I will help you through it. WE can get through this.. So I said ok do the test.. When I went back to him and it was RA he took my hands and explaned it all to me. He pulls out books and shows you pictures of what is going on in your body. He takes his time and really explans everything. He knows my RA doctor very well and they work together with me. I feel I have a great team :) and when I am scard of the drugs they both talk to me. Yes it is nice they do that. It still is not like talkig to everyone here who lives it first hand.

WEll I have to get ready to go to a family party.

Thanks again for all your support :)

Sue

3/10/09 7:09pm

Hi,

I eamailed you I hope you got it, if ow please let me now..

Jan

2/13/09 1:52pm

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!

Linda Nesbitt

2/14/09 1:09pm

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

scared to take new drug

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