New RA drug Simponi

So far, so good.  I'll keep my fingers crossed...I still can.  I hope that you find something that works well for you.  It is wonderful not to be in so much pain. The pain and swelling/stiffness is not all gone but I'd say 70% better.  I'll take it.  I hope that it does not ware off before the 30 days.

Be well and keep positive.  Wishing you a painfree happy day.

Julie

Thanks for the encouragement. Why are your Dr's hands tied? Is it insurance? I hope that you find something that works for you.  Life is so much better without pain.  Sending healing thoughts your way for a good day.

Julie

He wanted a drug that he could change the dosing level and the length in between doses. We went with Humira instead. And, yes, I am still waiting on the ALL POWERFUL insurance company to bless me with an okay to get it!

Hi Donna, I'm sorry for you troubles with the side effects. I've was diagnosed in 1991. I know that fatigue.  Pain is not our friend.  It takes the wind out of you.  I hope that you find something that helps you.

I've also found out that I am Gluten Intollerant and have allergies to eggs.  I've noticed that since I've elliminated them from my diet that if I ingest either that I have a flare up.  You may want to get tested for food allergies too as they create an auto immune response too.

Be well. Keep positive.

Julie

I'm sorry that you've had to go thru so much.  Some of the RA meds have a contra indication for those with lung issues so make sure that your Rheumatologist knows that you had pneumonia.

My insurance does cover Simponi. I have to pay a $40 co-pay. Their are assistance programs thru the drug companies for most of the costly meds that a lot of people don't know about. Ask at your Rheumatologists office. They can help contact the drug companies for you.

Simponi comes in a prefilled injectable syringe.  It is easy to use and a once a month injection.  I like that aspect too as I like to travel and don't want to worry about carrying it with me as it has to be refridgerated.  So far, it has worked fabulously.  I can't believe how much better I feel. No side effects, so far.

I'm sending healing thoughts your way.  I hope that you get better soon.

Julie

Thanks for the info.  My rheumatolgist is aware of my pneumonia and as soon as I am well enough she will most likely start me on one of the biologics.  Thanks for the info on Simponi - it sounds like something I would like to try.  I'll let you know.

gail

Sorry that I had not responded earlier.  I missed your questi0on.  Simponi is a 1 a month injectiion.. My insurance pays all but the $40 copay but their is an assistance plan thru the manufacture that picks up the $40 and so it is 100% covered.

Every insurance is different. You may have to have tried and failed other RA meds before they pay.  Call them and see.

I sure hope that you are all well now and no more pheumonia.  I know that some of the RA drugs are not to be taken with some lung problems.

Be well.

Julie

I have been taking SIMPONI for the last 6 months. First month was wonderfull, second - not bad, but on the 3rd month it's lasted only a 2.5 weeks. The medication cost $1,800 per month. My co-payment is $350.

Hi Stacey,

We sound like RA sisters going through the same medication rollercoaster.  I'm hopeful that Simponi will be the final one that I have to try.  I had my 2nd injection today.  I did have some awful flairs for the past week and was just waiting for today. I cheated and took it 2 days early.  I was in too much pain last night.  I sucome to taking some pain meds and 10mg of prednisone and it helped me make it through the day.  I'm hoping that this is just a bridge. Boy, the world is such a different place without pain.

Best to you too.  It is nice to talk to someone who understands.

Julie

I was told to inject every 28 days. So it is ok to inject 2 days shy of a full month. Even though all pamphlets say once a month dosing, my nurse says it lasts 28 days.

So far I do not see any side effects or improvement but I have just had one dose. I inject dose #2 around 7/21.

I am always willing to talk to anyone and be of help to anyone.

I hope you have a great weekend!

I too, have been trying RA meds for 6 years (Methotrexate, Arava, Plaquenil, Humira, Enbrel) without improvement. I took my first Simponi injections today and was really happy with how pain-free the injection was and so far no local reaction (I found the Humira to be terribly painful and had horrible rashes and itching with Enbrel). I am so hoping this will be the "miracle drug."  Good luck to you and all who read with site...I hope Simponi works for all of us!    Marge

Hi Marge,

Thanks for the encouragement.  I too was surprised how painfree the injection was and I too did not get the sight reaction as I did with others.

I've had 2 injections.  I have found some relief but still have occasional flare ups.  I had to be on antibiotics  for a UTI and had a flare the whole time and had to take 5mg of prednisone to get by.  I'm hoping that with time Simponi will work wonders for both of us.

I wonder why we are so "lucky" to have a body that does not respond to most of the RA drugs.  My miracle drug is Prednisone. It works best but I have to worry a bit about the long term effects but for now the benefits of a pain free day out weigh the longterm risks.  I'm on a very low dose when I have to take it.

Be well and let me know how you are doing.  Happy summer.

Julie

Prednisone is my wonder drug, too.  Small doses help me so much.....it's too bad the long term side effects are so bad.....I would love to live on that stuff!!!! I hope you're feeling better soon.    Marge

my e-mail address is collielady@earthlink.net if you would like to keep me updated on your progress.

I tried to e-mail you but it did not work??? We can keep in touch thru this site, I guess. 

Yea, Predinsone is one of those drugs that is cheep and works wonders.  If the doctors had not told me of the side effects, I would never know.  It is a life saver to me on many days too.

Be well and keep in touch.

Julie

Hello Julie and Marge. I am due for my 3rd Simponi injection next Tuesday.

So far still no reall side effects and no huge changes, but I think flares are not as bad. I do think I feel tired and weak for a few days after the injection, but if the Simponi helps that is a small price to pay considering the dire side effects I have had with other drugs.

I look forward to sharing my sotor with both of you and wish you the best!

Love and many blessings!

Stacey

Hi Stacey,  I'm glad that Simponi has worked somewhat for you.  I had great hopes but have had 3 injectons with little or no relief.  Without that bitter little prednisone pill I think that I would not be able to get out bed. It's funny how the cheapest drug works the best.  I return to my Dr tomorrow to see if it just is going to take a little longer for Simponi to work.  I'm trying to keep positive. I'm just worried about how the RA has damaged my elbows and limits my range of motion. I'll let you all know if things change and Simponi starts working.  I wish you only good health.