Newly diagnosed and have ?'s

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alaskabound
New Member


Date Joined Jul 2010
Total Posts : 12
   Posted 7/1/2010 8:16 AM (GMT -7)   
Hello I'm Gabrielle and have been having alot of problems the last 6 months. Finally I got to a good Rheum doc and was diagnosed with RA yesterday. I'm having horrible joint pain and swelling, she started me on prednisone for 12 days. But I don't see her again for another 4 weeks. I'm worried that when I go back again I'll be back in the same place. What are some medications that would be helpful and not take 3-4 months to help.
DDD in C4,5,6
Ra just diagnosed started on 12 day cycle of prednisone
MVI
B-complex
Synthroid
Flexeril


wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 7/1/2010 10:27 AM (GMT -7)   
Hello Gabrielle - welcome

So what do you do after the twelve days????
How did she diagnose you? If she is sure you have RA I am not sure why she did not start you on a DMARD to slow or stop the progression of your disease. Unfortunately they do take a while to catch hold. I am on Methotrexate and it took a good 2 1/2 months with prednisone added to the mix. Prednisone is a good band aid when you are in a lot of pain but it doesn't do more than mask the disease. Have you seen improvement since you have been on it? While I was waiting for my dx they put me on it to see if I got relief- that was one of the indicators that they were possibly dealing with RA.
I wish you all the best in getting on a proper treatment program.

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/1/2010 11:00 AM (GMT -7)   
Hello Gabrielle and welcome to Healing Well, I am new to RA also. I am sorry for the reasons you have come here, but you will find a lot of great people here!! I have been spending my time on the chronic pain forum because I have chronic lower back problems with nerve impingement. I just got the results of my RA test last Friday, by phone, and it was not good! The doctor said it was "seriously" high that there was, most likely more then JUST RA going on. I go back tomorrow for more details and to get referred to a rheumy. I am currently on prednisone, also, and is has helped a lot! I had a severe flare....my very first one...on May 20th. I woke up and thought I had been run over....about 20 times! Well kind of...if someone could just run over EVERY joint in my body! At that time the doctor just did a SED rate because I did not have my insurance coverage. My SED rate was high...she gave me prednisone then and said we will see what happens. It worked wonders and lasted until last week when it hit again. This time, I have insurance and they did the RA test. So I guess...short story, long....the steroids should last a while after you are done taking them, but I do not understand why the rheumy did not start you on something since the RA meds do take a while to help. I have done a lot of research on the RA meds the past week and it sounds like once you get on the right mix....it is wonderful...but it could take a while! Sounds like we may be headed into the same journey working on getting this under some kind of control! I wish you well and hope the journey improves for you! Take care of you!

wearyRAsufferer, thank you for your input to Gabrielle, like I said, I have not even been referred to a rheumy yet, but it sounds like I probably and RA and other autoimmune diseases going on with it! From what I have heard about Methotrexate... it works wonders! Many have said that "it gave them their life back". Do you feel good about that medication? I am almost as scared of the meds as I am the disease....but I fell soooo terrible right now I have to do something!

Sorry, I did not mean to take over this post, I am also just full of questions about all of this craziness I am going through along with you Gabrielle!

Take care both of you,
Beckey

alaskabound
New Member


Date Joined Jul 2010
Total Posts : 12
   Posted 7/1/2010 11:42 AM (GMT -7)   
Thank you both for your input. Any help at this point I will take.
My labs were negitave she said I have serem neg RA. I have alot of problems going on and my bloodwork is perfect, which flusters me. She said she wanted to do the prednisone to see how well I responded to it and if it would help with the problems going on now. She did ask me if my hubby and I are going to try to get pregnant again ( I have had 2 m/c last one in 11/09). I said problebly not since that's a whole nother story!! So I know she's thinking of what meds to start me on I was just suprised she didn't start them now.
Is there any else I can be doing to help? Is there anything else I should ask for from the doc?
Thank you for your help
Gabby
DDD in C4,5,6
Ra just diagnosed started on 12 day cycle of prednisone
 
Numbness in arms/hands, joint pain & swelling arms/hands/ankles/knees, fatigue, dizziness, headaches, hair loss, dry mouth, rash arms.
 
Medications:
MVI
B-complex
Synthroid
Glucophage (pcos)
Flexeril


wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 7/1/2010 12:59 PM (GMT -7)   
Hey Ladies,

Ant- MTX has kept me right for 2 1/2 years. I can't say that I feel great-100% but it took me from having to be fed, carried and being in so much pain that I wanted to die to being fully functional. I have not missed 1 day of work due to my RA since I got right.
I was TERRIFIED to take MTX. When the doctor gave me that fact shjeet with the side effects I did not fill the prescription. My husband was the one that talked me into it- he was like- do you really think that you can live like this? I really didn't have a choice in the matter and I filled it.
The fact is that MTX has been around for 25 years or more-the risks are rare. Most people who have RA take it. Most people get good results. They monitor your blood every two weeks and you should see your RD the same- anything serious can be caught very early. Some people get less serious side effects such as canker sores in their mouth, (folic acid helps, swish with salt water if they occur), tummy troubles (make sure you take it on a very full stomach and stay very hydrated- especially the day of) The worst part for me is that they frown on alcohol and I am a very social drinker. Anyhoo- since MTX I have only had one flare that was bad enough that I had to wrap my hands and wrists for the pain. It was because I had a dental infection and had to go off the MTX for 3 weeks.

Gabby-

MTX is not for people wanting to get pregnant or who may get pregnant. I'm not sure but I think maybe they would give you Plaquenil. that is a question you can ask your doctor. Anytime you have a question in your head write it down and give the list to your doctor when you visit. Also chronicle how you are feeling each day for him/her. That's what I do. I know not everyone has such a receptive doctor but mine is and it doesn't hurt to try. It is easy to forget once you get there or have them talk you into saying you are feeling better then you really are. That's what seems to happen to me without a list. My doctor loves to tell me- well you are certainly a heck of a lot better then that first day I saw you! (They like to feel like they help you and get frustrated when they can't I think.)
I am sero negative for RF as well. However my sed rate and ccp were off the charts at onset. Also a lot of swelling, red, hot joints, symmetrical pain. I lost 23 lbs. in 2 weeks. That's how I got my DX of RA.
Now that my RA is controlled my blood numbers are in range or just slightly elevated.

I had to take a megadose of prednisone (40 mgs. a day) with the MTX for a few months before my body triggered out of the onset flare. It took me a long time but I weaned off of it completely.

Okay I am feeling a bit like a blabbermouth right now so I will stop.

Feel free to ask me anything- I won't try and give you medical advice to follow but I can tell you what worked for me.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/1/2010 7:17 PM (GMT -7)   
I would say plaquenil gave me my life back by taking away the fatigue, random fevers, stiffness and systemic been hit by a bus feeling.
Methotrexate let me live my life again by getting rid of the joint inflamation.

I can't believe a rhuematologist pulled that carp with the 4 weeks between appointments and 12 days worth of prednisone. Call the rhuemy and ask for enough medication to last until the next appointment.
The two best things about my rhuematologist. She ALWAYS returns phone calls (the same day-herself-not just someone in the office) and prednisone scripts come with refills.

alaskabound
New Member


Date Joined Jul 2010
Total Posts : 12
   Posted 7/2/2010 8:04 AM (GMT -7)   
All very good points by everyone. Today is my second day of the prednisone and I feel llike crap :( Achey, stiff, like I could sleep for hours. Hopefully tomorrow will be a better day. I will call the rheum on tuesday to see if she will order something else for me.
Thank you all for you advice, it's nice to know I'm not alone!!
Gabby
DDD in C4,5,6
Ra just diagnosed started on 12 day cycle of prednisone
 
Numbness in arms/hands, joint pain & swelling arms/hands/ankles/knees, fatigue, dizziness, headaches, hair loss, dry mouth, rash arms.
 
Medications:
MVI
B-complex
Synthroid
Glucophage (pcos)
Flexeril


wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 7/2/2010 10:18 AM (GMT -7)   
Gabby- how many mgs of prednisone are you on a day? I did not get any reilef until I was on 20 and it took 40 to really knock it back.

alaskabound
New Member


Date Joined Jul 2010
Total Posts : 12
   Posted 7/2/2010 2:43 PM (GMT -7)   
It's 20mg for 3 days, 15mg for 3 days, 10mg for 3 days, then 5mg for 3 days. I'm hoping tomorrow I may have more relief I feel like a bus has ran me over. I have hope this will help :)
Gabby
DDD in C4,5,6
Ra just diagnosed started on 12 day cycle of prednisone
 
Numbness in arms/hands, joint pain & swelling arms/hands/ankles/knees, fatigue, dizziness, headaches, hair loss, dry mouth, rash arms.
 
Medications:
MVI
B-complex
Synthroid
Glucophage (pcos)
Flexeril


wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 7/2/2010 7:31 PM (GMT -7)   
Aha! The dose pack did not work for me either. I had to be on a steady high dose for weeks.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/3/2010 6:41 AM (GMT -7)   
The tapered approach-when it is that quick-feels like a form of psychological torture to me. I just start feeling better and have to drop the dose and then the symptoms come back.
Dose packs work fine for me now that I am controlled and on other drugs but it was torture when I was a mess.

alaskabound
New Member


Date Joined Jul 2010
Total Posts : 12
   Posted 7/3/2010 7:17 AM (GMT -7)   
I was kind of thinking it wouldn't be that helpful. I am optimistic today I do feel a bit better not as swollen or sore. But today is my last day of the 20mg dose. We shall see ;)
DDD in C4,5,6
Ra just diagnosed started on 12 day cycle of prednisone
 
Numbness in arms/hands, joint pain & swelling arms/hands/ankles/knees, fatigue, dizziness, headaches, hair loss, dry mouth, rash arms.
 
Medications:
MVI
B-complex
Synthroid
Glucophage (pcos)
Flexeril


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/4/2010 3:05 PM (GMT -7)   
Hi Gabby, on my first flare....which was awful....once I began feeling better, I continued to, even as I lowered the dose. I am sure it does not work for some, but luckily it did for me! I am hoping that you are lucky too!! I was also in a panic when I was getting ready to take my very last pill. It was Friday before the Memorial day weekend! I was so scared that as soon as I quit taking them....all heck would break loose again....for the long weekend! I posted my concerns and everyone told me to relax, that it did not really work that way. Thankfully it didn't and I actually mad it a month before it came back! Now I have another month before I can see a rheumy and hopefully start taking the meds that may help these flares from coming once a month!! Hang in there and know that you are in our thoughts and I am sending well wishes your way and keeping my fingers crossed!

Take care of you!
Beckey

alaskabound
New Member


Date Joined Jul 2010
Total Posts : 12
   Posted 7/4/2010 3:24 PM (GMT -7)   
Thank you so much Becky, it does make me feel better ready everyone's post's and getting a better idea of this disease. I know there will be good and bad days. Is there anything you guy's do other than meds that seem to help? I bought a paraffin wax for my hands and oh how did it feel like heaven!!!!
Thank you again for all your help
Gabby
DDD in C4,5,6
Ra just diagnosed started on 12 day cycle of prednisone
 
Numbness in arms/hands, joint pain & swelling arms/hands/ankles/knees, fatigue, dizziness, headaches, hair loss, dry mouth, rash arms.
 
Medications:
MVI
B-complex
Synthroid
Glucophage (pcos)
Flexeril


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/6/2010 9:28 AM (GMT -7)   
Hi Gabby,

Sorry I have been struggling to post the past few days...just feeling cruddy again! Just wanted you to know I am still here and reading, just not posting much!

My sister and I take walks in the mornings....most mornings. It seems to help with the back and leg pain. These are nice slow walks and not a long way. Just enough to stretch things out! It helps...the paraffin wax sounds wonderful!

Anyway....going to lay back down....hang in there!

Take care of you!
Beckey

alaskabound
New Member


Date Joined Jul 2010
Total Posts : 12
   Posted 7/6/2010 4:16 PM (GMT -7)   
Well I thought the prednisone would be my best friends.....well it's not. I felt good for 2 days then yesterday I felt horrible joints hurting so bad and could hardly stay awake today is the same. Hands hurt so bad my ankles hurt too. What does this mean that the prednisone isn't really helping? I feel so hopeless now because I was expecting to feel so much better than I am right now :(
Gabby
DDD & Bulging disc in C4,5,6
Ra just diagnosed started on 12 day cycle of prednisone
 
Numbness in arms/hands, joint pain & swelling arms/hands/ankles/knees, fatigue, dizziness, headaches, hair loss, dry mouth, rash arms.
 
Medications:
MVI
B-complex
Synthroid
Glucophage (pcos)
Flexeril


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/6/2010 7:59 PM (GMT -7)   
You aren't on enough to make that big of a difference. I really hate it when doctors undermedicate.
I would call your rhuematologist and tell her you did start to feel better then it got worse again.
Even a medrol dose pack starts at 30 mgs.

Nikiangel
Regular Member


Date Joined Nov 2009
Total Posts : 29
   Posted 7/8/2010 7:52 AM (GMT -7)   
Hi Gabby - I have had Arthritis for 35 years.  I'm 37 and was diagnosed at 2.  I have been on and off prednisone for years and my personal experience:  Putting you on a high dose than tapering you off is not gonna do much. Why isnt she putting you on an NSAID or DMARD?  Also, why is she waiting so long to see you and not enough meds?  The two main blood test that I always go by is my sed rate (shows how active the arthritis is) and my CRP ( shows how much inflammation in the body).  Has she done these, and if so what were results?  As far as Methotrexate, I have been on it for 2 years and its helping control the problem.  However, when I was trying to have a child, they would not start me on it.  There is a slight percentage that it can make getting pregnant harder, but even that slight chance, they were not willing to take with me.  When you think of questions, write them down and bring them with you when you go see her.  As far as things to do when i hurt:  I take hot hot baths.  That seems to help reduce swelling and calms the pain when its unbearable.  I wish you all the best, and hopefully all these great suggestions people have posted will help.  Dont get too frustrated, once your doc finds the right meds to put you on, life will be a little better each day.   All the best and GB.  Jenn 
Juvenille Rheumatoid Arthritis - diagnosed at age 2 am now 37
Currently on - Remicade, Methotrexate, Prednisone
 
"God gave you this because He knows you can handle it, dont stop fighting!" - Grammy
"God brought you to it, He will see you through it"
 


alaskabound
New Member


Date Joined Jul 2010
Total Posts : 12
   Posted 7/8/2010 11:44 AM (GMT -7)   
Thank you everyone for all your input I am eating it all up :)
 
I don't know what my labs are I was so overwhelmed when I was in the office that I wasn't even thinking. DH and I decided not to attempt to get pregnant again, were going to adopt in a couple of years so I answered my own question with that one.
I think I will talk with her about a longer prednisone dose one that will really get the inflammation under control. I'm worried because my app with her is 8/3....she's out of town for 2 weeks :( DH is coming home on leave from Iraq and I want to make sure I don't start any meds that could make me real sick and I really want to enjoy this time with him. Good god so many questions.
 
I am going to ask for more prednisone and discus the other meds with her since fertility isn't a problem any more.
 
Thank you all for your input and your care. It's so nice to have people to get advice from and to bounce things off of.
Gabby
DDD & Bulging disc in C4,5,6
Ra just diagnosed started on 12 day cycle of prednisone
 
Numbness in arms/hands, joint pain & swelling arms/hands/ankles/knees, fatigue, dizziness, headaches, hair loss, dry mouth, rash arms.
 
Medications:
MVI
B-complex
Synthroid
Glucophage (pcos)
Flexeril

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