Good for you. Do you think that they will be making treatment decisions today, or is this your initial visit, and mostly diagnostics today?
I'm hoping I'll get new med because the Humira has no effect. I will fly back here if needed. I'll post an update.
Best wishes Frances on your appointment today! I hope they offer you something that will work for you! I also have my Rheumy appointment today at 1pm here in Dallas. I think he's going to start me on either Enbrel or Humira. I've been having a lot of swelling in my right knee so I really want to get to the bottom of this and get something that will help me feel better. Some physical therapy would probably help also. I'm sorry the Humira didn't work out for you. Good luck on your appointment!!
I returned discourage from my Cleveland Clinic visit. The Rhuemy ordered 2 MRIs and told me to make an app't for 2 months and oh yea, stop taking the Humira because he isn't convinced IO have PsA. He said I don't have swollen joints and I'm not responding to the Humira indications tht I don't have PsA. However, he went on to say that 30% of people don't respond to Humira and that I could be in the early stages of PsA. He said of the MRI shows something different, he call me. I'm so disappointed, I'm in pain, fatigued and I have not treatment plan other than to taper from steroids.
I wish I could get admitted to the hospital and get all the tests done and get treated. I can't cope living like this for few more weeks for tests and decisions on a treatment plan.
I really need to start Enbrel and need to figure out how to get a prescription.
Hi Sherry,
Do you mind me asking how your app't went? Are you starting Enbrel or Humira and did your rheumy have a preference?
Sherry said:
Best wishes Frances on your appointment today! I hope they offer you something that will work for you! I also have my Rheumy appointment today at 1pm here in Dallas. I think he's going to start me on either Enbrel or Humira. I've been having a lot of swelling in my right knee so I really want to get to the bottom of this and get something that will help me feel better. Some physical therapy would probably help also. I'm sorry the Humira didn't work out for you. Good luck on your appointment!!
Hi Frances,
I understand how hard that can be. I’m so sorry you’ve had such a difficult day.
But as to the alleged uncertainty of your dx; first things first; do steroids alleviate your symptoms? Unless you actually have problems with your own cortisol production, then if steroids work, there is a very high probability it’s inflammatory.
For example, they’ve done a number of studies for illnesses with a similar symptom profile - people with fibromyalgia have the same response to steroids as placebo - about 30% feel mildly to moderately better.
99% of us with an inflammatory disease, on the other hand, feel like superman with steroids. (There’s always 1% who don’t, and it’s even harder for them). So I guess what I’m saying, is that if you are convinced you have an inflammatory disease, then you can choose to just walk into whoever is allowed to Rx Enbrel, and request it.
I was desparate - my Rhuemy thinks biologics are the devils work, and the system in Aus means it doesn’t matter how good your insurance is - you are at the mercy of Medicare unless you pay full price. But after 8 months of useless MTX and plaquenil, and steroids that had already started to dissolve my spine… I was too tired to be the good listening patient any more… I just straight out, politely but firmly requested Enbrel. And was willing to pay for it.
You’d probably be surprised how hard it is for them to say no, in a circumstance like that, where there is no discussion about whether it’s the right thing, you just ask for it. It’s your body. They go home, and think about their weekend cricket team, or bike, or fishing boat. You go home, and the disease is with you and your family every minute.
It’s possible the Cleveland Rhuemy is right, but you know your body better, and if you want to try Enbrel, then you are entitled to.
Good luck, I still remember that conversation with my Rhuemy as incredibly hard, but the single thing that has made the largest change to my life!
steroids do help. I'm calling my rheumy in DC and asking him for Enbrel tomorrow. You made very good points. My blood work showed a systemic inflammatory problem. Yesterday and today I've been in what I call "sleep mode" sleeping incredibly number of hours, but i'm not in much pain.
Thanks so much for writing me such a helpful long response. Makes me feel good that someone is trying to help me.
warmly,
Frances
Frances- I am so sorry. I know you were very hopeful the Cleveland Clinic would answer your prayers. I do not understand why Rheumys seem to want proof of bone destruction before they bring out the biologics. I would think P of the skin and esp of nails with joint/tendon pain would be enough. If steroids provide incredible relief I would think a diagnosis would be a slam dunk. Do call your Rheumy. You deserve some relief after all this. I am sending you gentle hugs and prayers.
Thanks for your kind thoughts. Much appreciated.