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bigsanfer
Regular Member


Date Joined May 2008
Total Posts : 57
   Posted 5/23/2008 7:48 PM (GMT -7)   
So I am new to this site but firstly here is my story...
 
I am a young and active girl that is in the process of being diagnosed with Lupus. I had mono to start with, which I found no fun at all and now my doctors are trying to tell me I have Lupus and Hashimoto's. I have now been on Prednisone for 2 months. Through out my experience with Prednisone I have been on 20 mg. but have been up to 60 mg. Now trying to wean off of it which I found a very long and depressing process. I am also on Plaquenel 200 mg. It is very hard for me to cope with this disease. I play basketball and am in high school. The moon face, depression, acne, and my doctor telling me No basketball is a problem. Any advice on problems above? Latley I have been walking every night and trying to keep in shape. I have been very shakey though and have lots of pain in my shoulders, hips and neck. Its so stressful! I usually would be excited for summer.. but I cant go in the sun.. another problem. Advice would be appreciated. Oh and is remmision possible? Thanks!

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/24/2008 8:39 AM (GMT -7)   
Hi bigsanfer and welcome. I'm so sorry to hear that you have been so sick and that your doctors are telling you that you have lupus. All of that can be a lot to take in and try to deal with. I have to say that I think mono was the beginning of most of my health problems too.

First of all, I give you so much credit for trying to walk and stay in shape through all of this - it's really hard to exersize when you are in a lot of pain and have fatigue. Just a word of caution though - listen to your body and don't push too hard. I had to learn this the hard way. If you are having a pretty good day and you want to walk at a brisk pace, then go ahead, but if you are not feeling well and want to walk, take it at a more gentle pace, otherwise you risk going into a flare where you can't exersize at all. I used to be a runner and ran a lot of races just for fun, but I loved it. After getting lupus symptoms I was able to jog some, but eventually had to give it up. Now that I'm finally on a good combination of meds and am feeling a little better I'm trying to exersize again by just doing some light walking, but if I push too hard I will have a major setback.

Having this disease at any age is hard, but I'm really sorry that you are having to deal with it at such a young age when all you should be doing is enjoying your life and doing the normal teenage things. A lot of us here have talked about how we go through a lot of grieving when we get sick because so many things in our lives change and a lot of us have had to give up some things we enjoy, so I think some sadness and some anger are pretty normal. There is hope though - hope to feel better, hope for remission, and hope that you will find new things you enjoy.

One question I have about your meds is your plaquenil dose. Most of us are on 400mg of plaquenil and wouldn't do well at less. Sometimes people who are very small and don't weigh much have to be on lower doses, so that might be why you are only on 200mg. Your doctor probably has a reason to have you at 200mg, but it might be worth asking him/her about it. Also, were you told thatn it can take a while for the plaquenil to build up in your system. Sometimes it can take six months or more before you start to notice it working. Has your doc ever talked to you about any anti inflammatories or any other meds for the pain you are having?

Hang in there - all of this can be overwhelming at first. This forum is a great place full of wonderful and supportive people. Please ask any questions you have and know that we are here for you whenever you are going through a rough time.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



bigsanfer
Regular Member


Date Joined May 2008
Total Posts : 57
   Posted 5/24/2008 9:23 AM (GMT -7)   
Thank you so much for your advice! I forgot to add that I am currently on Naproxen for pain. Though I do not like to take it that much unless the pain is servere. Then for the Plaquenil, I am pretty sure it's not my size.. I am a very tall girl about 6'0. I do have a appointment with my rheumatologist this comming Friday so me and my family will ask about that. Thank you so much for your help! It's highly appreciated.

Medications: Prednisone 20mg. Plaquenil 200mg.
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/24/2008 2:15 PM (GMT -7)   
Hi bigsanfer . . . welcome to the forum!

There is a great saying about pain caused by inflammation . . . . Attack it! Don't chase it.

In other words . . . if you wait till its bad, the naproxin/advil/ibuprofen . . . whatever . . . will not work as well. Sometimes you need to take anti-inflammatories 3-4 times a day to stay "ahead" of the pain. When you control the inflammation, you have a way better chance of controlling the pain.

But . . . as always . . . make sure you have your Dr. 's permission.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/24/2008 5:57 PM (GMT -7)   
Hi bigsanfer, welcome. I too have lupus and Hashi's (among other things). Plaquenil is a very good med to treat lupus. For me, it helps with joint pain and my fatigue levels but I am on 400mg. How long have you been on 200mg?

My rheumy told me remission is very rare, remission meaning no meds and no symptoms. However, you can bring your symptoms under control with the right cocktail of meds. This takes time and may still have flares here and there. Hang in there and be sure to mention how you are feeling to the doctor and let him/her know you are still in pain as your meds may need to be adjusted. Take care
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 5/27/2008 10:57 AM (GMT -7)   
Hi,

It's especially difficult at the beginning of treatment because the docs are trying to find the right "cocktail" of meds. A lot of trial and error and lots of aches and pains in between. I'm so sorry you are going thru this at such a young age.. but on the flip side, getting a handle on it now may
prevent more problems down the line.

Sounds like you are doing all the right things.. keep moving as much as you can without tiring yourself out. Do remember sun protection since we are heading into Summer now. Sun exposure can cause flares as well. Be sure to mention ANY new symptoms as they can relate to your meds, or not having a handle on disease.

Take care..

Ti

DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 88
   Posted 6/5/2008 3:13 PM (GMT -7)   
Welcome bigsanfer! I was also diagnosed with lupus my senior year of high school. Then about a month after starting my first "real" job, I had a bad flare and ended up in the hospital and on 60 mg pred. also on plaq. The moonface and all those other side effects, along with the insane amount of time it takes to taper down, is very hard, but hang in there! It is very discouraging, not to mention depressing! But that is what we are here for! So don't be bashful!
Lots of Love!
DQueen
 
 
 
Lupus, Rheumatoid Arthritis, High Blood Pressure, Anemia, Congestive Heart Failure, Kidney Failure

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