newly diagnosed with questions... please

Hi Marla, and welcome to the forum. I am really sorry for you pain right now and I can so relate. I am newly diagnosed and waiting a month to see a Rheumy. I am currently only on prednisone also. Well that and pain meds for my chronic back pain. However, I take Morphine 60mg sustained release 3 times a day with 15 mg instant release as needed and that does not touch the joint pain. This however is my second flare and I can tell you, they are BAD! How long have you been on the prednisone? It works miracles for me, as far as the pain, but takes a few days. Now the fatigue and just general yucky feeling hangs on. I was just talking about that on the chronic pain section how I feel like I need an hours nap for every hour I am awake! Just to let you know what my first flare was like....before I knew what was going on....I woke up at 2:00 am and thought I had the highest fever I have ever had. I had a terrible earache and was trembling all over. I bundled up and forced myself back to sleep, thinking that I was going to wake up so very sick! When I woke up 3 hours later it still felt like I had a slight fever, which I thought was because I had in ear infection! My ear hurt soooo bad. But no sore throat, no cough.....hmmmm....then I tried to move and it felt like EVERY joint in my body was on fire or being pierced with a sword! I do not know exactly how to describe it....it was so bad and it was everywhere. I just laid there and started to cry. I have always had a pretty high pain tolerance. I have had chronic back pain at L5-S1 for 3 years with severe nerve impingement, and that did not prepare me for this. I went to the doctor and told her that I had a terrible ear infection and she looked in my ear and said that it was not even red....turns out that pain was TMJ. My SED rate was 53, but that was the only test she did that day because I did not have insurance at that time. She gave me steroids and it got better.....I went about a month and now I am back in a flare...had the RA test and it came back extremely high so my PCP said well now you MUST see a rheumy! I am waiting to see him on August 3rd....but with the steroids again, the pain is a little better, at least I am not just laying around crying... but the fatigue is ridiculous! I feel just yucky ....all the time and all over! I feel feverish on and off and ....yes....in general, I feel like I have been run over... several times!

Please know that I am also extremely overwhelmed by all of this! It is pretty nasty, but I have talked to a lot of people and learned that when you finally do get on the right combo of RA meds......it literally gives you your life back!

Sorry it took me so long to respond...I have been sleeping so much lately have not been on here much! Please know there are a lot of great, caring people in this group and we understand how you feel!

Hang in there!

Take care of you!

Hugs,
Beckey

Hi Beckey,

Thanks so much for your caring response, I am sorry you feel so lousy as well. I guess by listening to what you are feeling like, this is, unfortunately, normal... that really sucks, lol. I can't say the prednisone is doing much to help me at this point, which is weird because when I have a Crohn's flare it works wonders and fast.. Can I ask what dose you start at? I started at twenty and it's been three days and I still am overwhelmed by pain and fatigue and fever, I feel like I need more, I usually only take twenty for Crohn's but this is obviously different. My sed rate has been all over the place, from 90 to 65 in the past month, so I guess that's pretty bad. I can only hope and pray that we will also be able to find the right combination of drugs to help us. It is so difficult as I am already on so many for the other disease as well... Please let me know how you do, good luck.

Marla

Beckey,

Thanks so much for letting me know about what prednisone you were on, I'm really hoping that bump up to 30 is going to bring relief. I don't mind at all talking to you about why I'm waiting, it is great to have someone to talk to about this... what happened is I failed Humira and Orencia therapy for my Crohn's so we went straight to Actemra last week. This therapy can take months to work, so in the meantime, my doctor is just using prednisone. He is alarmed by my sed rate, and my CRP is very high as well.
Thanks for listening, and caring, it means a whole lot to me, this is probably the hardest thing I have ever been through, as I"m sure you understand totally. I also will keep you in my thoughts and prayers and wishing nothing but the best for you as well, you'll have to let me know how your appointment goes!

Marla

Hi Marla~
I sure do feel for you. Ouch! I don't have Crohn's but do have RA so I know all about the flare-ups, swelling and pain. We're all in the same boat it seems ~ good days & rotten days. I don't have an answer for you but just wanted to let you know you're not alone. Hope you're able to navigate your way thru the initial stages of learning about all this. New info is always popping up and one day something wonderful will be available that will take away our pain and get us off these awful (but helpful) meds. That's my prayer anyway. I hope this prayer is answered.
All the best~
Little Libby