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Frustrated With Medication Side Effects
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LCover posted:
Hi, I'm new to posting in a discussion forum, but the way I'm feeling today...I needed to talk to others that might be able to relate.

I was diagnosed with RA in June of 2010. My doctor started me out on Methotrexate which I took for 3 months. I experienced horrible depression and anxiety after two months. The doc lowered the dose which helped with the depression, however, my hair started falling out. The doc prescribed more medication to help with that. Then I developed a cough so they did a chest x-ray and said I had Methotrexate lung and to stop taking it.

They put me on Enbrel on Oct. 27th and I started having some side effects after two doses. I had chills, shaking, and my stomach felt empty all day. The doc had me take Zyrtec and Pepcid to help deal with that. Now I'm experiencing muscle pain in my back and I can tell I'm beginning to develop another type of infection.

I'm to the point now where I'm just frustrated, depressed and tired of dealing with the side effects. I'm not looking forward to calling the doc again and I feel like I'm being a hypochondriac. I'm just looking for any advice, experiences or moral support that I can get.

Sorry for the long post but thanks for listening.
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ptroop responded:
I so understand your frustration. I am too tired of calling the doctor to complain about side effects of the medications. I also started embrel In October. I get these huge welts from the enjection site. They hurt and itch. The doctor does not seem concerned he just told me to take Benadryl which does not do anything. I complained about not feling well he told me to go to my regular doctor because I probley have the flu. If true I have had the flu on and off since August. I wish I had answers for you. I know this disease can be dealt with easier if you try to do it one day at a time. It is easy to say some days more that others. Hang in there
 
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LCover replied to ptroop's response:
Ptroop,

Thank you so much for your reply and supportive words. It helps to talk with someone that understands. I had a rough day yesterday, but am feeling better today. Like you said...one day at a time...it's about all you can do.

I'm sorry about your situation with the doctor. I was reading a blog from someone else and they said to listen and trust your body. You know when something is wrong. I'm sure it's frustrating if the doc isn't responding to you. Keep talking to them...hopefully they will listen.

Thanks again and take care!
 
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An_215862 responded:
I would call your doctor and not worry about feeling like a hypochondriac. I think everyone responds to treatment differently and your doctor wants you to feel better. He/she needs to know whether the treatment is working for you so they can modify it if it's not.

I went through several different medications and had various side effects. My hair also began to fall out with methotrexate, but even worse was feeling exhausted and sick to my stomach. We lowered the dose and while my hair still fell out for a while that did eventually subside. I've been on MTX for about 2 years now and also want to note that I began getting sick again with the lowered dose when my pharmacy changed the manufacturer. Same dose but I was definitely very sick. Little things can make a big difference.

My doctor ultimately put me on Remicade (and still the MTX), which is more inconvenient but is working very well. I do not seem to be having all the side effects.

Talk with your doctor, you just need to find the right combination that works for you.
 
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farm6748 replied to LCover's response:
Gee, I wish a had a dollar for every time I felt like I was losing it with thtis disease. It has been the most frustrating illness I have ever dealt with. Everytime I think I have a medicine that is going to work, I have a reaction. SO don't feel alone, there are many people who are going through or have gone through what you are doing. The first year is the toughest, it will get better and level off.
 
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An_215863 responded:
Dear LC,

You are not alone. I have had RA since 2002 and was very ill in 2008 (major flare - Reactive Arthritis in response to my illness). I have been off and on all kinds of RA drugs. They all have side effects, work for awhile, then stop working. My RA Dr. and I are still looking for the "right" combination for my body. I will start infusions the end of this month - the 3rd major drug for me. My body is becoming more sensitive to meds; therefore, more extreme reactions and side effects.

You are not a hypochondriac and neither am I. I don't hesitate to call my RA Dr. and schedule appointments to discuss the side effects and continue to search for the right meds for me. Medicine is an art and a science; therefore, we keep looking because I refuse to become crippled.

Right now I am having severe side effects from a Sulfa drug and I am not taking it anymore starting today. I think Methotrexate has caused my hair to get thinner and fall out too; but my Dr. changed me to injections of this drug. When I see her again at the end of this month for the first infusion, I will tell her about my migraine headaches, dizziness, and nausea due to that sulfa drug she prescribed last month - which I stopped taking today.

So please, do not get depressed. You are not alone. I have decided to be proactive, research everything, talk with pharmacists about side effects and contraindications of the various meds I take, and honestly tell my RA when I do not want to be on the meds. Sometimes the side effects lessen with time and we have to be patient and wait.

Good luck and take care.
RA sufferer since 2002
 
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MicheleMcGlone responded:
Go to an alternative doctor. Ask about being tested for lyme disease. Not the reg. test. The one done by Igenex where you go on antibiotics for five days and take urine samples every other day. If you have lyme the dead organisms will show in your urine.

I was diagnosed with "evolving RA" in August but I didn't want to go on those drugs. My Rhuematologist would not consider any other treatment but methatrexate (doesn't work, hair falls ot or lyphoma or fungal infection!) or plaquenil (can go blind).

I found an alternative MD in my area (Which of course my ins. co. will not pay for) who is educated about lyme, nutrition etc. I am on the road to recovery and thanking God everyday.


If you don't have lyme get the books "conquering arthritis" and 'how to eat away arthritis'. Changing your diet is really hard but it will help.

Those drugs don't work and will do more harm than good.
Good luck.
 
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smaxgraham replied to MicheleMcGlone's response:
MicheleMcGlone,
I would love to exchange more with you. I am on the same road as you. I've eliminated gluten, dairy, eggs and sugar and feel much better (tough though). I haven't tried MX due to the blog reports. I have also tried BVT (bee venom therapy) that helps. I still see some disease progression though which is thoroughly depressing. I'll try the books you suggest. Other suggestions welcome. Do try BVT - the book is "Health and the Honeybee" by Charles Mraz.
 
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LCover responded:
Thanks to all of you who responded. It helps tremendously to hear what others are experiencing.

I was supposed to give myself another shot of Enbrel on Wednesday and I just couldn't do it. I saw the Physician Assistant and she was adamant that what I was experiencing was not related to the medication. She did talk to the doctor though and gave me a DMARD and TNF blocker recommendation (Plaquenil and Simponi). I'm nervous about both, but I will keep trying. This might all be in my head, but I seem to be feeling a little better after not taking the Enbrel.

I'm also making an appointment with an MD who specializes in holistic medicine. I'm willing to do anything at this point.

Thanks again and I wish you all the best.
 
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JustJilli replied to LCover's response:
Pfizer's new drug tasocitinib looks like it might be promising. The side effects look much less threatening than MTX and the existing biologics. Here's a quick article on it: http://www.npr.org/blogs/health/2010/11/08/131158846/pfizer-rheumatoid-arthritis-pill-shows-promise-in-big-study

I agree these drugs are frustrating. I went from taking an occasional multivitamin to taking up to 20 pills a day. My doctor also said there were a number of new meds coming down the pike. Let's hope....
 
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dgewhitney replied to LCover's response:
Hi
Don't give up on the medication, but also don't stop trying new ones...It took me 4 different meds until I got something that actually helped my RA--I went Enbrel, Orencia, Remicade, then finally Rituxan which is what I take now. There was often a second med with it like MTX. If you have a rheumatologist who isn't taking you seriously CHANGE!!

The other side effect of Enbrel is nuerological issues such as MS! 2 years after being diagnosed with RA I was dx with MS. Was the Enbrel a factor?? I will never know, but I also would not give up on finding a med that gives you relief. They are out there, it just takes determination and trial & error!!

Best of luck I am thinking about you!
 
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Watashimo replied to dgewhitney's response:
Hi, I just diagnosed with RA last month so this is all disturbing. My doctor prescribed 2 mg daily of folic acid to prevent hair loss - anyone else taking that? Did it work? I am old enough I cannot afford to lose too much more!! I am just starting on methotrexate and hydoroxylchoroquine
 
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Pudgiebaba replied to MicheleMcGlone's response:
Wow, I am so glad I found this sight. I can relate to all of you. I was diagnosed with RA in 2005. I was put n remicaid and methotrexate and prednizone. Was on remicaid for almost 2 years when I started getting open sores on my legs they wouldn't heal. I was switched to orencia and seemed to do o.k. but then my liver enzymes went way up and I had to be taken off all drugs. While on the medication I always felt like I had the flu and many times needed large dozes of steroids to offset what the doctor called flares. Now since I can't take any of those drugs I am on steroids and a narcotic. Each day I feel more and more exhausted and now am having troble breathing. The paid is bearable most of the time and I decided that between all of the complications of the infusions etc. I won't go back on them. -I will check out the book mentioned above as that is probably the safest way to go.

God bless all of you!
 
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Regina5573 responded:
Dear LCover,
Don't ever feel bad about calling your doctor about what's going on with your side affects. Matter of fact, keep a log of what's going on with you and your meds! I have been on enough meds and have had enough side affects to know. Matter of fact, my rheumy actually told me one day, "I don't know what to do with you aymore".

I too, was on MTX and had terrible side affects and had to be taken off it. Not only was my hair falling out, but I was getting mouth sores. The folic acide didn't prevent that either!

In regards to your muscle pain, did your doctor mention anything baout taking Magnesium slo-mag? I take that as well because I was having terrible legs cramps that would leave like an indentation in my calves; worse than a "charlie horse". It has helped. Did your doctor do a back x-ray at all? The only reason I'm asking is because degenerative disk disease and Ankylosing Spondylitis (which I have all the way to my tail bone) is common with RA.

Depression comes hand in hand with RA, so don't feel bad about that. There are some meds that your rheumy can prescribe for you for this. There are some great support groups for RA on Face Book too. If you're interested in the support groups, plesae feel free to ask and i'll get you the names of the groups.

Hang in there. It will get better!
Regina~
 
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Maaroom replied to Watashimo's response:
Hi! I am an old hand at this game, having lived with R. A. for close to 30 years and have had a run of 15 major drugs over that time. I have developed lactose and wheet intolerance during that period. I currently take Arava, Plaquenil, Prendisone, and Folic Acid. I have taken Folic Acid from very early in my days with R.A. I have never experienced hair loss. A word of advice learn all you can about your friend, yes, make a friend of this disease as you are stuck with it for the rest of your life, much easier living with a friend. I may sound mad I may even be mad but it works for me. Best of luck


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