Glad to find this forum and read other ppl's experiences.
My sister was just diagnosed with RA last week. She had a high RFactor in the 500's and a high SED (i think 100 or so). I believe her RA is in the early stages (maybe 1-2 months when her pain started by her estimation).
I have two main questions:
1) She went to see a RA doctor last week and he put her on a predinoise for a week. It has really helped her pain. The doctor originally wanted her to start taking the following drugs. Pacquenil, Celebrex, and either Humira or Enbrel (Dr. told my sister to go google and read up on which she prefers to take Humira or Enbrel).
After reading about both Humira and Enbrel, my sister read that both biotics recommened it be taken with MTX (methotrexate). So she called her Rhemy DR. and inquired as to why was she being prescribed Pacquenil instead of MTX. The doctor (actually nurse, because the Dr. was too busy to talk to my sister) said "sure, let's take a more aggressive approach" and also added MTX to the Pacquenil, Celebrix and Humira/Enbrel combo. My question is:
a) is this too much meds at once? Should she try Pacquenil first and then if it doesn't work...try MTX? Does she really need Humira/Enbrel at this time? or are DMARDS sufficient (since we don't know if Pacquenil/MTX will work?) or should she err on caution and do the whole combo?
b) Which is better? Enbrel or Humira? We are leaning towards Humira just because it is a bi-weekly shot. rather than enbrel which is weekly. any thought or opinions?
b) Is celebrex really necessary? I've heard that celebrex is dangerous and ppl have died from it.
2) My second area of concern is her Rhemy Dr. Both my sister and I do not feel that he is compassionate or spends any time with his patients. I was with my sister when she was first told by the Rhemy that she had RA. He did not give her much information about RA disease (ie. what it is, and what the prospects are). When my sister told him what pain she was feeling he almost seemed to not be listening and he was very rushed. He just said...okay I am going to prescribe these meds to you. And u can read about them online to decide if you want humira or enbrel. When he ordered blood tests, the nurse took my sister's blood while she had a phone craned in her neck (waiting on hold). The whole experience was very rushed as there were lots of ppl in the waiting room. I can understand a quick 15 minute rush job for routine checkup. But this was the first diagnosis of RA. I am extremely pissed off at the Rhemy because he doesn't seem to care and is more interested in processing as many patients as possible to collect more Drs. FEES. Both my sister and I feel the same way. Should we switch doctors? I think he probably knows what he is doing....but i just don't like his cavalir attiutde.
We have made an appointment with another Rhemy,...but it won't be till next week friday. However, her next appt with the jerk Rhemy is next week monday. I was thinking that my sister can just go ahead and take the Pacquenil till Friday's apt with a new doctor. Should she do that or stick with the jerk Rhemy that she does not like? Any opinons will be much appreciated. Thanks!
Hi there, sorry to hear your sister has RA but this is a good place to come and get some info and some answers. I would suggest your sister sees a rheumy she feels comfortable with, she needs a doctor who has a positive approach and who can make her feel that the meds he is prescribing are what he thinks are the most effective for her. He does seem a bit offhand and I think a good rheumy would take the time out to explain about the meds and not tell you to read about them online. This is a confusing and frightning disease and reading about it online can often be even more frightning.
I hope you get some more positive answers from your sister medical team, if not then get another doctor.
I was on Humira but had no luck so I am now waiting to go on enbrel. Lots of people have diffrent reactions to the drugs and it can be trial and error.
Good luck and keep us posted
Bro: It took those medical geniuses 6 years to finally diagnose me. My RF's were in the 900+ and SED in the high 500's, but no one knew why. I finally found a guy I have some faith in, Prednisone, MTX, and Hydro. My insurance carrier wouldn't approve Humera, but put me on Remacade. It costs ,000.00 every six weeks and is done with an IV drip. I must say, for the most part, my pain has greatly reduced, and I can function almost normally.
Problem: I have no immune system any longer. I've had pneumonia twice this year, lost 4 dental implants due to my body fighting a foreign material, and gained 45 pounds from the medications. Fortunately I've taken 40 off on my own. I'm still concerned with the side affects and costs.
Find an RA specialist that she likes. That's important for the confidence level and peace of mind. Now that the diagnosis is made the treatments can help considerably.
Thank God your sister has you. This is a very painful and frustrating disease...it is even more that way if you do not have support.
Like Frank says...It takes a long time to find a combo. I have been at this about nine months now, and still looking for the magic bullet. Please don't tell sis that. She does not need to lose hope.
I am impressed with the agressiveness of the Doc. The pred is to help with right now, as it takes a while for Plaq. and MTX to build in the system. Also adding a biologic is pretty standard, because not many people can get away with just one or the other. I took Humira and it is an uncomfortable shot, but some like it. I have never taken Embrel, because of the particular strain of Autoimmune I have. I am now on Remicade like Frank....and hopefully it will be the magic bullet.
Things that sis needs to do between now and her next appt. Get a diary to track pain and symptoms. She will need this to see what is working the best.
She also needs to have some short term goals for success and long term goals. They will be modified according to the "normal" people in the world, but she needs to have some inspirations.
My goal is to be pain free during Thanksgiving and Christmas, because this will be the first Christmas in about four years that I would be like that. I have not decorated in two. My kids miss the Christmases that mommy used to give them.
Just examples and suggestions.
Finding a good doctor that will spend some extra time with a new patient and taking the time to explain the whats and whys and the treatment is a great confident booster for the patient. I've been on Enbrel for 10 years now and also take relafen 500 mg 4 times daily. Before that I was wheel chair bound and in a lot of pain. Its easy to get infections and takes longer to heal. First of all find a more compassionate doctor.