Im at the Arthritis Associates in Wheaton md for emergency appt. Been in bed for 3 days with no energy, listless.
I'll be thinking about you.
I'm so sorry Frances!! I sincerely hope they see you soon and give you something to help relieve you of these symptoms!! We'll all be thinking of you and wishing you the best at your appointment!! :-)
Frances, please post an update when you are able. I think we're all worried about it and wishing you well.
Thanks for everyone's kind concerns. I was in bed for the past three days sleeping all day everyday. Per chance, I got a call yesterday afternoon about a clinical study I inquired about in September and although I don't qualify for the study the nurse, took pity on my current situation and made an emergency appointment for me with a Rheumy today.
He was wonderful, thorough, asked a lot of questions and although I don't have swollen joints, he did connect that the steroids make me better and is treating me for PsA. He prescribed me remicade that I will start next week and ordered some MRIs. He is perplexed by my bouts of extreme fatigue, but I understand that is common with arthritis???
Also, when I have these bouts of flu-like symptoms, I barely have any pain. I just have absolutely no energy to do anything.
I have more energy today, but don't know if I'll make it to work tomorrow.
All thoughts and comments are welcome.
warmly,
Frances
Oh no! I am sorry you have had so many problems but glad you got in. Hope you continue to improve. We are thinking of you.
Thanks Sherry. I'm feeling better.
Sherry said:
I'm so sorry Frances!! I sincerely hope they see you soon and give you something to help relieve you of these symptoms!! We'll all be thinking of you and wishing you the best at your appointment!! :-)
Thanks for the good thoughts Robert.
Robert said:
I'll be thinking about you.
Thanks for the kind thoughts Piganli
Piganli said:
Oh no! I am sorry you have had so many problems but glad you got in. Hope you continue to improve. We are thinking of you.
I’m so glad to hear an update! Ive been wondering how you were. You get to start REMICADE! This is such a good thing. And your emergency visit today sounds like it turned out really well. The new doctor that I am going to see is in that office. It sounds like they took good care of you and that you are going to get some proper treatment. That is so great!
I’m sorry that you have had a rough start, but it seems to me like it’s the pattern for PsA patients. I am sincerely hoping that you are one the right track now with the new doctor.
Do you mind describing your flu-like symptoms? Is it flat out fatigue or do you get body aches too like you would with the flu?
Frances- I am glad to read you are getting some treatment now. I am sorry it took so long. I was also waiting to see if they found an infection or something. I I have bouts of days in bed too. I am poorly controlled but have recently started Remicade and saw a brief improvement. I think maybe my bed days may have to do with Feb. though I do get coughs, runny nose and chills. I hope you start feeling better soon. I am sending gentle hugs and warm prayers your way.
Michael
Sorry to hear you've had such a rough few days. But I'm so glad that you're making some progress now with the whole process. The fatigue part is rough. When you're properly medicated, this should be a smaller part of your life.
I too am glad to hear that you got into the doctor and you have an action plan. Please keep us informed on your progress.
I'm glad to hear that the fatigue will diminish!
Stoney said:
Sorry to hear you've had such a rough few days. But I'm so glad that you're making some progress now with the whole process. The fatigue part is rough. When you're properly medicated, this should be a smaller part of your life.
Sending gentle hugs back and I hope our days in bed end soon !
michael in vermont said:
Frances- I am glad to read you are getting some treatment now. I am sorry it took so long. I was also waiting to see if they found an infection or something. I I have bouts of days in bed too. I am poorly controlled but have recently started Remicade and saw a brief improvement. I think maybe my bed days may have to do with Feb. though I do get coughs, runny nose and chills. I hope you start feeling better soon. I am sending gentle hugs and warm prayers your way.
Michael
Amen sister!
This week is was mostly extreme fatigue. However, other times I've felt like I had full blown flu without a fever. Body aches and fatigue.
Hi Frances, I am so sorry you’ve had such a hard time. I too get terrible fatigue and flu-like symptoms with uncontrolled disease. Heck, I even get the low grade fever with it (can you believe in a bad flare my body can make a low-grade fever whilst on Enbrel?) It’s scared me a couple of times.
But it’s immeasurably better since I started Enbrel - once you find something that works for you the fatigue should significantly reduce with the rest of it. So very Exciting you are starting remicade - good luck!