Hi Kit, Thanks for the information. I'm glad Enbrel is working for you now. It's interesting to hear that it took 3 months. I only had 3 doses and it was the worst feeling I've ever had. I felt like it was making me sick and I felt horrible physically and emotionally. I'm considering the Simponi and what I do like is that it's only once a month. I know Enbrel and Methotrexate are used the most but I'm thinking that there has to be something else out there for me! Thanks again for your response. )View Thread
Dgewhitney, I appreciate the support! I know it's going to take awhile to try and find the right med and I just need to be patient. The day I started this discussion I was having a really rough day. I'm better now (especially after getting off Enbrel) and I have to say these discussion forums help a lot. Apparently we don't have a support group here but I thought about starting one.
In regards to changing docs, we only have two where I am. I would have to go out of state (which I am not opposed to doing). Mine does listen though...even if the PA didn't agree that what I was feeling was from Enbrel. Everybody kept telling me to listen to my body and I did.
Thanks Regina, I appreciate your feedback. My back started hurting really bad during the 3 doses of Enbrel that I had. I was feeling so sick while on it, I swear I have been feeling better every day without it. My back feels good in the morning and starts hurting later. I'm going to do accupuncture (already had 2 massages) but getting an x-ray is a good suggestion and so is the magnesium.
I would be interested in the facebook groups if you have the time.
I was talking up to 3 mg of folic acid and it helped with the hair loss. I dropped down to 2 mg and it still seemed to help. I've been off of mtx for 3 weeks now and I'm still pulling out a lot of hair.
Hi Ari, I'm newly diagnosed and I've already had some bad experiences with the first two meds they put me on. They started me on Methotrexate and I had horrible depression. They lowered the dose and gave me folic acid and Leucavorin for side effects. I also had hair loss (folic acid helped) and then eventually got a lung infection so I had to stop.
Recently they put me on Enbrel and for the last three weeks I have felt horrible. I was supposed to take an injection on Wednesday and couldn't do it. The Physician's Assistant said that what I was experiencing was not related to the meds (but I feel differently). They are now suggesting Plaquenil or Simponi. I'm leaning towards Simponi and have been looking for others who have experience with it.
Hopefully you are doing well with the treatment you are on now. Feel free to give an update.
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.
I would like to know about people's experiences in taking Symponi vs. Enbrel.
I can't take Methotrexate so they put me on Enbrel and I have been miserable for the last 3 weeks. I asked for alternatives and my Rhuematologist suggested Plaquenil if I want to try another DMARD or Simponi as a TNF blocker instead of Enbrel.
Please feel free to let me know your experiences. Thanks!View Thread