Allergic to enbrel, Avara? | Arthritis Information

Well it seems I am allergic to the enbrel which has caused pericarditis. Saw the RD this morning and no more enbrel for me. I am to continue with 20mg of prednisone a day and once the inflammation has gone go back to methotrexate. When my Latent TB treatment is finished he mentioned Avara (sp?). RD will see me again in one week if no improvement off to the cardio I go.

Jenny

Pip

P.S. Have you considered going Gluten Free - it's a pain but some people swear by it.

Humira is made from different "stuff" than Enbrel, which is why one will work for someone when another one doesn't. Being allergic to one doesn't mean you would be allergic to all of them, but I certainly do understand your concern. There is also Rituximab, which is not a biologic, and antibiotics like Pip suggestion. I think you still have many options. I took arava for 7 years, from 2000 until 2007, and it was very effective in keeping my RA in partial remission. I swam 800metres of backstroke a day, 4-5 days a week to manage back pain. I was very fit. The only side-effects I had were controlled by reducing the dose to 4-days/week - I'm only small and it's not surprising I couldn't take a full dose.

I went off it last year for another medical treatment, and the RA steadily increased. I can't climb into the pool or swim because of swollen shoulders, or walk too much because of knees & feet. Now I'm on a half dose and it's gradually improving again. I'm not at all fit now.

My RD told me it's not for everyone. But apart from monthly blood tests to monitor my white blood cell count it has been one of the least troublesome drugs for me.

Hi, Thanks for the responses.

Pip, I do take antibiotics for Latent TB. I would never have known I had this except for the mandatory test before enbrel. One of the reasons for me switching to enbrel was because I have / am recovering from clostridium difficile. It has taken almost 6 months to get my life back on track and a tremendous amount of antibiotics. The hopefully last treatment consisted of 500mg of vanco 4 x daily for a month and a rifax chaser for 2 weeks. I am at a point where if I get really sick I will be limited with antibiotic options. Also even with the probiotics such as florastor, culturelle and primadophilus reuteri pearls I am at risk for relapse with anything that changes the balance of my gut flora. I found a great ID Dr and he has advised me to avoid as much oral meds as possible. C diff was devastating in so many ways, thankfully I have great insurance, @,000 in antibiotics and I have a co pay. Not to mention the colonoscopies etc. I never, never want to go back to that again. It's all so raw right now still. Even with no RA meds for 6 months, I'd rather suffer the pain of RA ( I do not say that lightly) than experience c diff again.

Gluten free I do not know much about with regards to RA, but have been down that road before with my sons allergies. I do need to look into the diet.

Joe, my RD thought enbrel was the best of the biologics for me at the time. Once I've jumped through these hoops I may give something else a try. Right now I'm just very apprehensive. These drugs seem like such a necessary evil. These last few days have been very scary.

Janalex, I'm glad you had such a good run with arava, and hope you get back to that again. What side effects did you experience?

I really like my RA Dr he listens so well, but I feel like alot of Dr's are really just guessing. So much of this is trial and error. I hate being a guinea pig. I just want as much information as I can get. So tired of one step forward, two steps back.

Thanks for all your advice & support.

Jenny

I am glad you found out what happened. An allergic reaction does make sense since you felt this came on so fast after taking your shots.

I do have to say I am surprised they let you start a biologic with Latent TB. I would try the Avara. Personally I think MTX is awful.

Hi MJ,

I had to start TB treatment no matter what, all I had to do was wait one more month so I could start the antibiotic treatment before the enbrel. I did not have a problem with the methotrexate as such, any immune suppresants could have contributed to c diff. But even the methotrexate in a high enough dose can cause complications with Latent TB becoming active. At least I am aware now. I need to look into alternatives. There is so much to learn it is overwhelming.

Take Care

Jenny

I am doing well with arava, i did have elevated enzymes one month only, and they lowered the dose and i was just fine.jenny,
i was on avara.... much less effects than methotrexate....
made my hair flat and fell out alot....

I have tried the enbrel... I had an allergic reaction. I can not take any of those medicines. I wanted to do the AP...
I went to dr. in CA and I am still nervous about AP.... but I am doing all these amazine nutritional supplements.... it has given me energy and I feel so much better. The probiotic he gave is wonderful.

I may start with the gluten, soy free diet and keep these supplements going. It sounds to me
as if you need to invest in a jack la lanne veggie juicer and strengthen the heck out of your immune system. analyze all your stress and tackle it... see how the stress in your life makes you feel and feel those emotions.. good or bad... I bought this book on my trip that made me cry. Sometimes this process of guinea pigism is for the birds.. let it out and cry.. you will be amazed at how better you feel.
My heart goes out to you and I really hope you get some R and R.

I cant tell you what to do... but I would strengthen that immune system every way you can....

try the no grain diet for two weeks.... I call it the cave man diet:)
it may help.
Maybe look into yoga, or a therapist... take dance lessons...
go swimming and rest when you need to. Don't take on to much that you get overloaded.

Hang in there. If you have any more questions, let me know...
Above all, try to think you can lift yourself away from this... to life again.. the way you want it to be with out this pain..
stretch through the waters... I know it seems like we send out our sos- to-life here.... there searching for answers...
I have been searching for two years... I believe that something inside of me.... needs healing... something that triggered this....
maybe start by letting it out...
You can do it... you can .... strength yourself:)
Hugs,
I also ned to change my signature...
flare over, feeling pretty good on supplements...
and trying diet.
supplements: bone support, joint support, D3 5000, memory support, cognitex, coQ10, probiotic saccromcyes, inflavaoid IC herabal anti inflammatory, omega supreme 780, soon to aslo include a meagenics multivitamin without iron, and energy boost

Jenny, the only uwanted effects I had from Arava were lowered white blood cell count (which corrected when the dose was reduced) and one year I had some hair breakage - although that could have been from menopause - which has grown back.

How patient is Donna! There's no way I would keep up a regimen like that.
Yes, but I am NOT taking any harmful medications and I am extremely HAPPY and feeling good.
Some things are worth the risk and patience!

Donna! You're back! I've missed you.

OK, now I know 2 people doing diet etc to control this!

Hugs,

Pip

Jen,

I use Rituxan and have been able to stop using both methotrexate and prednisone. My bloodwork is very close to normal(first time in 9 years) and Rd believes I'm nearing a remisssion. You might want to ask your RD about it.

Lynn

Lynn492008-07-22 16:35:16Hang in there.. and just don't give up Jen ... explore ALL options....
I hope all works well for you.
I have just been where you are and I know you probably think I am nuts... but it is a freedom kind of nut thing now... I just hate these medicines as much as everyone else and the disease that took so much....
I don't want it to happen to you.

Pip, Jan 13th at 10 oclock is my next appointment ...missing CA already...
These supplements are so amazing.... I have cleaned my house, cooked a super duper meal , drove my son to soccer camp and did shopping today. So much energy.....and NO brain fog.... It is like I am super woman!LOL
I have tried to find my own supplements for years but I honestly now feel like a new woman. I havent even started the energy boost or multivitamin as of yet. I can't imagine what kinds of things I will find myself doing then. I am super happy... ME, depressed saga queen of the east....
is now rolling in feel good soup:)
Not starting antibiotic unless I feel it is absolutely necessary. With these supplements the diet is
going to be the minor thing. I feel so elated. I haven't really done the complete diet.... so I know I can add that and even stay away from the antibiotic for as long as possible. I know I will need probably at some point. But I think if I feel this good. The diet will keep it even better. I worry about my gut flora with the antibiotics... but will just take it one day at a time... I may change my mind...

Im so grateful I went out across the country to be looked at so thoroughly! It has lifted me higher than I could had imagined!

Donna!

I'm so happy for you! Again - you have to keep an eye on the body - it it starts to 'squeak' then you know what you have to do. If not - keep on doing what you're doing!

Hugs,

Pip

Donna, I'm curious if you're in remission? What are your lab numbers now that you're feeling so super? How do they compare to your previous numbers when you weren't feeling so super? Did your xrays show any damage? I also feel diet has a place on the road to remission. I'm in clinical remission with normal labs and a normal MRI that looked for fluid in my joint areas. My diet and eating habits have really helped with stopping the inflammation and pain of the damage that occurred with an uncontrolled 10 year flare. I didn't achieve clinical remission until I started Humira. LindyLinB

My labs are all normal...
in fact they are better than normal ..before I did the diet... inflammation markers like Cr protein was elevated... however I am sero negative... all my rates negative and normal.
I have few joints in my hands that swell a bit when I stray from the diet.. and damp weather makes it worse..

Hydrogen peroxide baths help the hands get moving on slow days...

I do 1/4 hydrogen perxoide// to 10 parts warm water with about a cup of epsom salts in there.

It helps

I also have reynauds in winter

I am well aware of the explosiveness that can come with stress.... this is what I need to safe guard most of all.

I still have it... I am still having some minor joints in my hands that are sore.. but I have full function and I have no stiffness..

I am convinced that diet is key..

nuts seeds.salmon, fish omlets, and certain fruits and veggies

this is most of my diet.. I can still do potatoes... rice not as much...
bread bothers me
BIG TIME

I do no dairy at all
No soy at all.

It is tough

but I have three boys that need there mother... and I need my hands for home, school and work.

I am not giving up my life to take suppression of my immune system.

If after I really really don't cheat on the diet and I have inflammation continue in my hands.. I am doing the antibiotic therapy asap.

My thyroid was lazy and I know I have less brain fog MUCH LESS and I am feeling like I stepped back into the land of the healthy.. even with a few sore joints that I can manage.

I know it is a monster of a disease. but the attitude is number one with me.

I am functioning again and I was so depressed before and I am not taking an antidepressant. Maybe
by keeping this regimen and diet going .. my body will be stronger and heal itself.

My grandmother was so healthy... till the day she died.. she never complained.... she did have this though and she suffered.. but looking back, she was very good at her eating and she exercised and she knew how to deal with it. She was amazing... I am going toget the help I need.. I am going for a new career and I have my kids to think of .. I will do what I need to to beat my arthritis. I hate the mouth sores, and lack of pep I get from the lifestyle of those other meds.
If I someday need them I may... but now I cant
My xrays showed no damage.. mild inflammation in my two joints in my hands.
completely fine, elsewhere. I dance and I swim, etc..
so I will try to see if I can handle it , the diet
but if I cant seem to nail it with that... I will progress to the AP
sunny CA twice a year will also add to my spiritual health...

Life is good now.. and I just appreciate every day I have with my children.
Before I went out to CA.. I was hopeful but without energy and had a hard time with a clear head... now
that alone has made me super energetic and I am loving my life again...
maybe it was the thyroid...?
who knows.. but I am finding joy again... that is the sparkle I am trying to really share here.
I have to be disciplined to kick the pain out of my hands... but labs are good, head is good, hands are managable at this point.

Wow, I love you guys.

All these posts, information. It's great. It wonderful to see how you are all doing with what works best for you. I have been trying to rest quite a bit. It's hard for me to do nothing when my joints are not swollen. I want to get cracking on things that have been needing doing for sometime. I can tell the enbrel is starting to wear off now, getting stiffer so hopefully the pericarditis will subside soon too with the help of the pred. I am going to try and get some research done before I see the RD on Monday. Not sure that I want to go back on mtx and pred full time. I want to have some options to discuss with him. I will try and absorb as much info from this site as I can before then. There is so much research to do. Thank you all for your help. I'm gonna go through everyones posts one more time and start checking out your treatments.

Thanks Again

Take Care

Jenny