newly diagnosed with questions... please

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snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 7/2/2010 6:19 PM (GMT -7)   
Hi, I'm newly diagnosed with RA and have so many questions..
I'm from the Crohn's boards here, it's a great forum! I'm sort of lost when it comes to my RA, so any advice would be appreciated... I have been having arthritis related problems for many years now, swollen knees, swollen hands, very high sed rates, etc, but never felt anywhere near this bad. The docs always thought I had the arthritis that comes with Crohn's disease, but found out recently they were wrong. about two weeks ago I started having daily fevers, my entire body feels like it's been run over by a truck, every part of me is sore, my hands are in excruciating pain and my fatigue is through the roof, I can't go four hours without needing a nap. Currently, I'm on prednisone and trying to come up with a long term plan with my doctor, my questions are.. is this what an RA flare feels like? about how long do they last? I have never in my life felt fatigue like this, is this a normal part of the disease? Are daily fevers common? I'm sorry for all the questions, but I'm currently extremely overwhelmed...
Thanks so much for taking the time to read this.
Marla
Crohn's, Enteropathic Arthritis, Enthesitis, Daily Migraine

Prednisone, 6MP, Entocort, Pentasa, Topamax, Effexor, Vicodin,

Sed rate sits in the 70's and can't seem to get it down


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/4/2010 8:58 AM (GMT -7)   
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

stmprkb
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 7/4/2010 9:59 AM (GMT -7)   
I am on the Crohns board too--- and they just confirmed RA as well... so watching this thread...
I was just starting to figure out crohns...for my body.

Kim in FL

snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 7/4/2010 1:59 PM (GMT -7)   
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
Crohn's, Enteropathic Arthritis, Enthesitis, Daily Migraine

Prednisone, 6MP, Entocort, Pentasa, Topamax, Effexor, Vicodin,

Sed rate sits in the 70's and can't seem to get it down


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/4/2010 2:58 PM (GMT -7)   
Hello again Marla, I am really sorry that the prednisone isn't helping more. Usually it is only 2-3 days and I start feeling better....at least! This must be so awful for you! I did start out on 30 for 2 days....go to 20 for 4 days and then 10 for 5 days the first time but going for 10 days this time, because of the wait to get to the rheumy. The feverish feeling and fatigue are almost as bad as the pain and....unfortunately....there is nothing to help that except rest! That 90 SED rate is alarming...why is your doctor letting you go so long without starting to try some RA meds? I am sorry, that is really not my business....I just feel bad that you are feeling this awful for so long! I am waiting and suffering because I have not seen the rheumy yet.

Anyway, just know that I am here....if nothing else....to listen! And I really do understand how you feel! We need to keep in touch through this and keep each other updated, because you will be in my thoughts and prayers!!!

Do your best to take care of you.....and hang in there!!

Beckey

snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 7/4/2010 5:38 PM (GMT -7)   
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
Crohn's, Enteropathic Arthritis, Enthesitis, Daily Migraine

Prednisone, 6MP, Entocort, Pentasa, Topamax, Effexor, Vicodin,

Sed rate sits in the 70's and can't seem to get it down


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/5/2010 10:40 PM (GMT -7)   
Marla,

Well it looks like we are both in kind of a holding pattern....just know that you are definitely in my thoughts and prayers! And know that I DO care....many times we feel so alone and no one really understands.....except for those going through the same yucky stuff!! So keep me updated and I will do the same....also check out the chronic pain section also....a lot of good info there too!!

Take care of you!!

Beckey

Little Libby
New Member


Date Joined Feb 2010
Total Posts : 10
   Posted 7/16/2010 9:37 PM (GMT -7)   
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
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