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sits_inthe_corner
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/28/2008 4:41 PM (GMT -7)   
Hello
 
A little about me :)
 
I'm a 48 yr old female in Nova Scotia. I've shown symptoms for lupus since I was 18. My mother had it and my sister was diagnosed 17 yrs ago. I have the butterfly rash amongst other rashes. Arthritis has taken over most of my joints. I break out in sunblisters...achy sore tired swollen...a mess :)
 
I'm in the middle of the mess of getting diagnosed. I've had a positive ANA test, followed by a boarder line ANA test, followed by a negative test.
 
I'm not getting on well with my current rhuemy. I have one more appointment with her, it has to get me through to my next appointment with my new rhuemy which isn't untill november. I almost cried when I heard that!
 
I'm on plaquenil since December. It's not doing anything for me. I'm also taking arthrotec 75, and that had worked well for the past year, but it has suddenly stopped helping me. The pain and the swelling is back big time.
 
Well I'll stop there...I have a habit of rambling. Looking forward to reading the posts here :)

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/28/2008 5:05 PM (GMT -7)   
You can build a tolerance to medications, especially NSAIDS and pain meds (antibiotics too). My advice would be to find a good internal medicine doctor who is willing to adjust your anti-inflammatories. Plaquenil can take 6mo to a year to work, often we don't even realize how much it has helped until we stop it- this is especially true if our disease goes into a more active phase while we are in the beginning of treatment.

I would also ask about a dose pack or a steroid course to see if it will help any. Call and ask to be put on a waiting list for the new rheumy for cancelation appointments. Also check back every 2 weeks to see if new openings have occurred. This does happen. I would also look for another rheumy who might be able to get you in faster.

Look into getting a dermetologist and see if perhaps you might be able to see your sister's rheumy because it might help. An allergist can help you get any allergies under control- I suggest this because allergies make the immune system more active and can make your symptoms worse.

Stay out of the sun, get tons of rest, eat well and take a vitamin and calcium, there are 2 pain rubs I suggest trying but can't recall the name brand 1 has a name similar to asprin and the other is capsayasim (sounds like or sounds similar). The first is based on asprin but does not interfere with NSAIDs. The second is based on a chemical found in hot peppers- you need to use sparringly and if you accidentally use too much white vinager will neutralize it.

Others will come on with other suggestions to help. I spent many years untreated and used whatever I could to get by.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


sits_inthe_corner
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/28/2008 6:08 PM (GMT -7)   
Thanks redrose,
 
I like the idea of calling the rhuemy office for cancelations, never thought of that. My sister is just coming out of remission. I had to talk her into going back to our family doctor. I think she wants to pretend it will just go away.
 
I feel badly for her. She's been pain free for many years now, and it's tough for her to accept that it's over. She needs to find a rhuemy.
 
I have an appointment tomorrow with my family doctor. She's the one who put me on the arthrotec so I'll let her know it's not doing it's "thing" anymore. See what she says.
 
I have an appointment with a dermatologist in June about (ewww) toe nail infection, brought on by medication. Is it okay to spring all my other rashes on him?
 
The pain and anti swelling rubs do not work well for me. They eat my skin off with out getting rid of the pain and the swelling.
 
I wear compression socks but I'm concerned about what that's doing to my skin and my veins.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/28/2008 6:10 PM (GMT -7)   
welcome and good luck
Forum Co-moderator
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....
All suggestions/options/opinions are caveated with please consult with your local health care provider...


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/28/2008 6:21 PM (GMT -7)   
Hi Corner . . . welcome to the forum.

I hope you'll keep us posted on your progress. Sorry you have such a wait for new rheumy . . . good rheumyies usually do have a long wait . . . but Nov really is long.

There are some great tips from members in the "lupus resources" thread. Link is at the bottom of my signature.

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, Crohns, Diverticulosis, Sjogrens

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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 4/28/2008 6:34 PM (GMT -7)   
Hi Corner!
 
I'm in Alberta! Welcome to the forum. Yes, you should definitely "spring" all of your rashes on the derm when you see him.  Get the most out of every visit with all your specialists!  One trick for the rashes is to take pictures of them.  If they disappear before you see your derm, at least you have some evidence that they really exist.
 
I don't take plaquenil, but I think it can take a few months to really kick in.  Can anyone concur with me on that, or am I out to lunch??? confused
 
I also agree that calling to find out if you can be on a cancellation list is excellent. I've done that in the past and it has really benefitted me! 
 
When you see your rheumy, you might want to discuss alternative drugs, especially if the plaq really isn't working.  Other options for you might be Cellcept, Imuran, prednisone.  the more you can learn about lupus, the better off you'll be!
 
Take care fellow Canuck!!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/28/2008 7:04 PM (GMT -7)   

Hi Corner,

    The others had some great advice for you. I just wanted to welcome you to the forum and wish you well.

    Hopefully, your doctor will find the right mix of meds to help you feel better soon. Hang in there and take care. You will be in my thoughts and prayers.

                                                       Babs


 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/29/2008 9:28 AM (GMT -7)   
Hi - I also wanted to welcome you. I don't have a lot to add to the great information that everyone else has given you. I think a lot of us have had to go to several rheumies before finding a good one. I really hope your new rheumy can help - it sounds like you need something in addition to the meds you are already on. Maybe in the meantime your family doc can help until you see the new rheumy. I'm a big advocate for docs helping patients be as comfortable as possible.

I'm glad you joined us and I think you'll find a lot of supportive people here.
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



sits_inthe_corner
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/30/2008 5:25 PM (GMT -7)   
Thanks all for the welcom. Certain is a friendly and a supportive site :-)
 
I had a visit with my family doctor yesterday. The swelling and the pain has been getting worse so I thought I should go see her.
 
Sigh...as usually things didn't go the way I thought they would.
 
 
I've been working out yeah trying to get some of the strength back. she said my swelling is from the work out, but to keep it up.
 
I'm not doing high impact stuff so I'll guess I'll tough it out. I do not over do.
 
She was angry when she heard who my new rhuemy was going to be....sigh...she advised me not to see her and to stick with my current rhuemy who doesn't believe that lupus is real, period. eyes
 
She said she would keep an eye on my ANA, but my results are coming back in the clear.
 
I'm frustrated, not sure what my next step is going to be.
 
I'll show off my rashes to the skin guy. Gawd what a job.
 
Hey doc, what do ya think of this....
 
Wonder how many times they want to say EeeeEEeew ick gross hahahaha.

sits_inthe_corner
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 5/1/2008 2:03 PM (GMT -7)   
Hi ginny,
 
That's right, plaquenil can take several months to build up in the system. I've been on it since December first so that makes if five months.
 
I've been feeling worse instead of better. I see my regular rhuemy later this month. I'm goin to ask her to take me off it. I have to be careful how I phrase it, she has a tendency to tell patients not to bother coming back if they dont like her treatment plan.
 
And I just found out yesterday that my family doctor does not recommend I go to the new rhuemy as they have an even worse track record that the one I'm seeing.
 
I think I need to regroup abit. I found my appointment yesterday to be very disheartening.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/1/2008 4:06 PM (GMT -7)   
I am sorry your appt didn't go well. It is so frustrating to go to doctor after doctor that doesn't listen to you. Are you going to see the other rheumy? If your current rheumy doesn't believe lupus is real I would RUN to the new doctor whether your family doctor likes it or not. I am sorry for being so blunt but it's your health not theirs and you have the right to get a second opinion!

((((( hugs )))))) I pray you get some answers soon and begin to feel better! Keep us updated on how you are doing!
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)


sits_inthe_corner
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 5/1/2008 4:39 PM (GMT -7)   
Thanks jhmom,
 
My family doctor is going to continue to monitor my blood work. I'm thinking about asking her to refer me to a natural medicine clinic. She said that a friend of hers (who is a doctor) was going that route.
 
I want some time to check into it. Perhaps this is the route for me to take. Quite frankly the medications used scare the beeJeebers out of me. I'm afraid of making the wrong decission. So I think I'll do some more reading and mow it over.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/3/2008 9:22 AM (GMT -7)   
Hi corner,

What dose of plaquenil are you taking? I had to ramp up to 600mg to get the most effective dose. This is way safer than taking some of the other meds that would be the next step. I also need to take around the clock anti-inflammatories (there are many choices for this one). I thought the plaquenil wasn't working and after being off of it for a while, my issues came roaring back. Many of the other members have had the same experience.

I hope your next rheumy appointment goes better.

Some hot tea for you!!

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


sits_inthe_corner
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 5/4/2008 9:47 AM (GMT -7)   
Sorry AlwaysRosie

I've been off the computer for the past day...house work and laundry...woohoo.

200 MG ... two little pills taken before bed with a small tub of yogart. Man those little things are GROSS. My doc suggested I take them like that to avoid some of the side effect; I already have vertig, so I don't need anything aggrivating it.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 5/4/2008 12:41 PM (GMT -7)   
Hi SITC and welcome to our forum. I've been on 400mg plaquenil daily for over two years, and yes, it took 4-5 months before I started feeling somewhat better. It is the safest drug in our arsenal and although I've had to resort to more heavy duty drugs, I still take my plaqenil If I run out a few days-I feel much worse. I also take Arthritis Tylenol daily and get some noticable relief.  If you read my signature you will see I'm a walking pharmacy, but I started on plaquenil.  I really hope you get some help soon!  Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol actonel ambien multi vitamin C flaxseed oil  PRN: gabapentin promethazine xanax
             Better living through chemistry    Donna
 


sits_inthe_corner
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 5/4/2008 1:14 PM (GMT -7)   
Hey butterflake,

Soooooo...given all the meds you are taking...are you pain and swelling free? The reason I'm asking is because the arthrotec 75 I've been taking for over a year now, was supposed to help with the pain...and it has, BuT....one of it's side effects is that it causes fluid retension in the lower legs and feet which causes joint pain. (Just picture the look on my face) If it wasn't so pathetic it would be funny.

I just feel like dog chasing it's tail....lots going on...just not getting anywhere.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/4/2008 2:29 PM (GMT -7)   
SITC . . . usually plaquenil comes in 200 mg tablets. Are you taking 2 a day? = 400 mg??? or two 100 mg tablets??

The average dosing for plaquenil is 400 mg. But some of us take 600 mg. 200 isn't much if you are still having so much pain. If your arthrotec is causing swelling, there are SO many other anti-inflammitories to choose from. Your doctor can help you pick another one. You may have to try 5 or 6 before you find "the one" that helps yo most. I've tried several and it turned out that ibuprofen worked better for me than some prescription meds. We are all very different.

Hang in there and keep the doctor updated on your progress or lack of progress. A good doctor will help you tweak things till you've got a good outcome. But you really need to speak up.

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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 5/4/2008 2:53 PM (GMT -7)   
Plaquenil has a coating - I've never tasted anything when taking mine.

Could you possibly mean prednisone? It's got a nasty taste and no coating ?

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


sits_inthe_corner
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 5/4/2008 3:36 PM (GMT -7)   
It's two 200gm pills so 400gm daily. There's no coating. Hahahaha I learned after the first pill to down it as fast as possible. I't plaquenil.

As far as the anti inflammitories...I've tried quite a few. Most of them would work for a day maybe two then right back to the swelling. One just made the fluid slump down around my ankle. Looked like each ankle was going swimming with it's own little inner tube.

I elivate my legs at a 90 degree angle for 10 minutes several times a day...I wear compression socks, Ice/heat freaquently.

The arthrotec worked pretty well for the past year, but the parties over now. I see my rhuemy in a week or so. I give up trying to figure her out.

I've decided to tell her I'm coming off the plaquenil. I'm not interested in taking anything else.

I just found out two weeks ago that my mother knew she had lupus. I had always assumed that she didn't know and wasn't being treated. But my sister dropped the bomb that mom did know. And she was being treated with prednisone. She died suddenly.

We asked for an autopys. I thought we had it done cause no one knew what was wrong with her. Turns out I was the only one who didn't know. After we got the report, my sister took it to her family doctor, who had her tested for lupus.

And now I'm being investigated...I was fine up till two years ago. I went through a very stessfull period and after that I just started falling apart. It's been a long painful two years of tests and trying medications...and nothing works and then my stupid rhuemy (who put me on the plaquenil) says she's not treating me for lupus. I asked if she thought I had rhuematoid arthritis or malaria...she just sat there looking at me. Finally she said " I just thought it would help" Grrrrrrrrrr

I've been on it since Dec 1rst. I'm worse not better.

Sorry ... didn't mean to ramble...sigh.

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/4/2008 6:45 PM (GMT -7)   
I know generic plaquenil has no coating depending on the brand. Name brand has a coating. I do not suggest stopping it, you don't realize how much it does until you stop. For the swelling have they looked into RA? I ask because since they realized I have RA and started treating it the swelling has been ever so much better. I know it is frustrating, I loved vioxx and miss it dearly. I will never be totally pain free but we found ways to make it easier. Ask about tramadol- pain med that is non-narcotic but strong.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

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