Starting Remicaid in three weeks...HELP

By tatagrn Wednesday, June 24, 2009

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I have had RA now for 1 year. Still not under control.. I take MTX once a week, Ultram, neurontin, folic acid, and lortab when needed... Enbrel worked at first for about two months then a few months ago my levels went back up.. So it is on to Remicaid.. Has anyone had this problem of one not working and then another will? I also have a stress fracture on my left foot... Have been dealing with that for a year now also.. It wont heal.. Has anyone had and fractures that wont heal? Or anything similar.. Just looking for some suggestions or stories of your experience// I am nervous of doing the infusions, so anyone with info on that please share...Thanks to you all... I love this site it helps so much to know I am not the only one dealing with this, since noone around understands...

RA and Stress fractures

Comments (8) | Add comment

Lene Andersen, Health Guide

6/25/09 11:30pm

Absolutely - in my experience with RA, it's quite common for a medication to work for a while and then stopped being quite as effective as it used to be. I used to hope for one medication that would work for decades, but have realized that dealing with my RA will likely mean going from one medication the next, each of them taking me further down the road. I understand your anxiety, but it is so important to get treated so you can protect your joints. There are many users on this site who are on Remicade and for whom it has been a lifesaver. Hopefully, some of them will comment on your post.

Good luck! keep us posted on your progress?

Daina

6/26/09 8:26am

I also took enbrel. Worked awesome for about 3 months then stopped. Then I was put on Remicade. The hard part with that is that it took about three months for me to feel any relief with it at all, but now I get a great deal of relief. I've had RA for 28 years (I was about 5 when diagnosed) so my damage is going to be greater than yours, maybe it will start working quicker with you.

I got three stress fractures in 2 years in my left foot. Go to a podiatrist. I ended up having the bones in my foot fused and the a nerve "killed" and no more stress fractures in that foot for nearly 4 years, it was a God send, painful to go through, but a God Send...

Please keep us updated and let me know if you have anymore questions...

Daina

Anonymous

6/26/09 12:48pm

Thanks you for the reply. In reguards to the stress fracture. I see a podiatrist and also a orthopedic surgeon. It started last June. I went to the podiatrist in July and he did a bone scan and took me off work for a month, then I went back to work with a aircast on my foot for about a month or so. Then all winter it seemed ok till this spring. Then I went back to him cause it was hurting again. he did another MRI and it showed the fracture had not healed and I now have a torn tendon. I have been off work since the middle of April with this boot on my foot and in May I got a Bone stimulator. Which they say takes alot of time to work. The Surgeon I saw gave me restrictions for work but my work cannot accomadate so I am off work still. He said he isn't sure why it isn't healing and is now sending me to a Physiatrist? Not sure how you spell that. He said she will do more testing, injections, or manupulations, or exercises I guess? Not sure what she is going to do. But I am tired of this and just wanted it fixed. I went and saw the podiatrist on Wednesday and he isn't sure why it hasn't healed either he just checked my orthodics and said maybe he would contact my surgeon to talk to him. Ok sorry but wanted to fill you in on my situation and ask a few questions.. Who did you surgery and how long did it take for them to decide to do surgery? I am also starting to have problems with my other foot?? Any infomation you may have will be helpful. I am feeling at a loss again with this foot.. And stressed about work too.. Thanks again for answering. Looking forward to hearing from you..

Tonya

Daina

6/26/09 2:16pm

Never been to a physiatrist, so I'm sorry I can't help you there. My podiatrist was also a surgeon, he did my foot surgery. From the third fracture it took about 4 months till the surgery, but that was by choice, he said he could get it done within a couple of weeks, but the timing wasn't good for me. I had to wait till my MIL could come help with my 8 month old little boy. It was an outpatient surgery, the fused all the bones in my toes (except the big one, which he would have to have removed, something about no synovial fluid left, so that will have to be taken care of later). That really helped my gait and seems to have prevented any further fractures. Before he decided on surgery, we did LOTS of PT and had a few "discussion" appointments. I had orthotics. With the fractures I was always put in one of those air boots...

Before the surgery, I also got a second opinion, I wasn't going to have anyone cut into me without that....But that podiatrist said the same thing...

Hope this helps....Let me know if I didn't answer everything....

tatagrn

6/28/09 2:52pm

My podiatrist is a surgeon also, but he sent me to the ortho doc I guess to get his opinion because it had been so long. I don't really want them to cut on me but, I have been dealing with this for over a year now and it obviously isn't gona heal. And I have been off work for three months now. Only have three lieft of full disability pay. Plus hopefully I have a job to go back to.. I guess I am just frustrated an of course as we all say (This isn't suppossed to happen to me...lol) Thanks again. I will let you know what happens...

KrazyKat

6/27/09 12:25pm

I too have had temporary results with some RA meds. I started on MTX but couldn't tolerate it so went off of that and started taking Plaquenil instead. I also have been on numerous anti-inflammatories but have had stomach problems with many of them until I found Etodolac which I only take if necessary. Am also on Gabapetin for nerve pain -- this is absolutely necessary for me since I tried going off it and had terrible joint pain so back on that. I have also tried Enbrel (soso response), Orencia (temporary soso response) and am now on Remicade. I didn't hold out much hope and was afraid of a reaction since I had one from the Orencia and had to be premedicated with Tylenol and Benadryl. But wonder of wonders! I've only had 2 doses (spaced 2 weeks apart) and I can feel a difference. I'm scheduled for my 3rd dose next week and then not again till end of August! This is the first time I have really felt better from an RA med. It might not last forever but for now it is working and that is good!

My rheumy assured me that we would find something that works and for me not to give up or give in. I trust and respect him so I just kept plowing ahead and have been totally happy with the Remicade, and no reaction. All this to say, "don't give up." The researchers are coming out with new meds every day and like my rheumy said to me, you will find the right mix. I know it is hard but it is true. I found much comfort from the RISE magazine and website (www.risesupport.com). It is a website and mag put out by the makers of Rituxin but you don't have to be on that med to sign up. They have articles about this subject and it really helped answer a lot of questions and fears that I have. They don't spam you or anything -- it is safe.

I wish you good luck with Remicade and your RA. I pray for your relief from pain, exhaustion and all your symptoms. God bless you.

tatagrn

6/28/09 2:49pm

Thank you for the reply... I appreciate any help of info I recieve from anyone on this site. I find that you guys are the only ones who truley understand what I am going through. Or what we all are going through.. Thanks agian and I will let you know. My first treatment is July 14..

KrazyKat

6/28/09 4:57pm

No problem. When I was first diagnosed I discovered this website and some other good RA forums maintained by people just like me, those living with RA. I was so scared and nervous but many others helped me ALOT so I (and I think I speak for many), are just, "paying it forward."

Please do let us know how you make out. Best wishes! Cynthia (KrazyKat)

Starting Remicaid in three weeks...HELP

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