newly diagnosed and scared

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jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 110
   Posted 11/23/2011 12:41 AM (GMT -6)   
After 10 years of playing the is it lupus game, I finally got the dx today. I already found out earlier this year that I have celiac disease (lucky me, racking up the autoimmune disorders-sheesh)

I have a couple of questions for you guys...

The prednisone I've been taking on and off for the last ten years is killing me. Would it be better for me to take the antimalarial, and just prednisone for flares?

How does the plaquenil make you feel? Does it help reduce flares?

Also, is 31 young for a diagnosis? Is that any indication of the progression? ie, the younger you are when you're diagnosed, the worse it will be when you are old?

I already feel like I'm 80...celiac is hard enough, but according to medscape, I'm in for, on average, five more AI's in my lifetime. (the average celiac will be diagnosed with app 7 AI's in their lifetime)

At least celiac can be controlled with diet...

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/23/2011 6:01 AM (GMT -6)   
Plaquenil (anti-malarial)  helps keep Lupus "quiet", while Prednisone  reduces inflammation. Generally a Lupus patient will remain on Plaquenil indefinitely (ie forever), and use Prednisone as needed to get the inflammation under control. (Flares == Inflammation.)

For most patients, long -term use of Prednisone is needed for the first few months or years until the flaring reduces or stops. In my case, I took 15-20 mg for about 6 years before I was able to taper down for a while at 5-10 mg. Then within another year or so my lupus quieted and I'm not prednisone-free.

I don't think there is a particular average age - we have patients here anywhere from 14 - 86 for their first episode. Age of diagnosis has nothing to do with progression. Lupus is not necessarily a progressive disease, it can go "quiet" for long periods, or it can get quite serious very fast. It's known as the disease of 10,000 faces, because given 10,000 people the disease will act very differently between them all. In my case, I feel better now than I did the two years *before* my diagnosis in 2002.

Hope you feel better soon,

Post Edited By Moderator (aimsgirl16) : 11/26/2011 9:25:01 AM (GMT-7)


ohmylife
New Member


Date Joined Nov 2011
Total Posts : 4
   Posted 11/25/2011 8:12 PM (GMT -6)   
Hi Jesimae. Sorry about your official diagnosis, I know how you feel. I was officially diagnosed 2 1/2 years ago and I am now 40 years old, I believe I have had it for about 11 years or so waiting for it to get bad enough for the official dx. I have been taking plaquenil since 2009, and I have not had a major flare since, it has dramatically reduced my flares. I have had a little inflammation and a rash with some small flares, but I will take a prednisone taper for 2-3 weeks which usually makes it shut up rather quickly. THe plaquenil also protects my blood, I also have antiphospholipid antibodies which are quite common in patients with SLE. I take plaquenil 400 mg daily and the only side effect I have had is some stomach cramping and diarrhea. But it seems to be keeping things from getting out of control like they were before I started on it. Keep in mind it can take up to 6 months for the full effect on plaquenil, so be patient. I felt some relief within the first month, but noticed a big difference after 3 months. Please keep in mind that plaquenil can be toxic to the retina so get a baseline check from a good eye doctor who has experience with the drug and checking your eyes for it. Most recommendations are 6 months to a year after a baseline check. Very important to do this if you take plaquenil. The chance of eye damage is rare, but it still is there so don't chance it. But, plauqenil does work for most SLE patients and it doesn't have nearly the side effects of prednisone. That is my experience. You are not alone and good luck to you. Keep your chin up :)

Ginalee
New Member


Date Joined Nov 2011
Total Posts : 1
   Posted 11/25/2011 10:57 PM (GMT -6)   
I was recently diagnosed with HE I am awaiting an appt for Stanford university, my drs here think they have a Ginny pig..... I actually had to dig for my own diagnosis and make them run the test I needed, so far I have got 40mg of prednisone a day and actually feel worse, to many symptoms to list, but I am scared waiting, I do not think this mg is enough nor the only meds I should be taking, help please, if anyone has any advise I would appreciate it.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 11/26/2011 10:23 AM (GMT -6)   
Hey, I was diagnosed at 19. I don't think age has a big differance on how it effects you. The most important thing you can do is take your medicine your doctor prescribes and take it on a regular basis to help prevent things from getting worse. Don't miss any doctor apts or apts for blood work. If your doctor doesnt think a certain medication is working, listen to them. They are doing the best they can to keep your lupus from the evilness it has the ability to do.

Of course if your side effects are too much to deal with, be open with your doctor. DOn't keep anything from them that might be related to your diagnosis...
Amy
Lupus Moderater
Prednisone, carvedilol, heparin, Eliphos, toresmide, Vit D 50000 IU weekly
PRN: Ativan, zofran, hydrocodone, Ambien or Ambien CR, Flexeril, Ultram,

If God brings you to it, he will get you through it!!
peritoneal dialysis from lupus nephritis

ebet24
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 11/27/2011 8:47 AM (GMT -6)   
I was 23 when I was diagnosed. I take Plaquenil every day and Prednisone for flares, which luckily are usually only in the winter. I have never noticed any side effects from Plaquenil (good or bad). For me, lupus seems to affect my head-I have difficult concentrating, I'm extremely forgetful, and have been suffering from severe anxiety and depression since being diagnosed. I can just tell I think more slowly, which is hard since I'm in graduate school. I wonder the same things as you though, will my disease be worse since I was diagnosed so young? My rheumy seems to think Plaquenil will stop the progression of the disease, so I may be ok since I was so lucky to be diagnosed early.

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 11/28/2011 4:54 AM (GMT -6)   
I have been on Plaquenil for a month right now and I did a round of Prednisone that was a taper down and I have been off the Prednisone for a week now and my symptoms that had decreased in severity are back with a blaring vengance! I am going to call the Dr today and see what to do. I was in such a bad way when I started it all i seem to remember him saying 3 weeks on the Prednisone might not work at first and I would have to do it longer. I am so forgetful now I am not really sure. I am so glad that I just didn't suddenly turn stupid and everyone has this problem of being forgetful and foggy. I feel so confused much of the time. People say to me, "don't you remember we talked about this?" and honestly....NO I don't ! I can't even think ab out it for a minute and say OH yeah I remember, I freaking don't remember at all. I can't find words. I feel so ..... well I don't know tired foggy something. I am on Vyvanse (because Savannah ran out of Adderall) and it helps I couldn't imagine what it would be without it. But geesh! What a symptom of a disease.....I have basically had this for years I was told but when I had this surgery that because of the complications I almost died it threw me over the edge and made it go full blown, it is still really up in the air if I have autoimmune hepatitis, last monday my doctors nurse passed me in the hall and said she thought my skin looked yellow and they ran blood work so I get the results today! My new doctor said there is no way to say for sure without liver biopsy!


Peggy

Synthroid 250mcg Topomax 100mg Lamictal 300mg Plaquenil 200mg 1 one day 2 the other B12 1ml inj one weekly Vit D 50,000 Mon and Thurs Imitrex Inj/Nasal PRN Percocet 10/325 PRN Lasix 40mg 2x daily Potassium
Peggy

Synthroid 250mcg, Topomax 100mg, Lamectal 300mg, Vit D 50,000 mon/thurs, B12 inj once a week, Plaquenil, Valium PRN, Lasix 40mg 2x daily, Percocet PRN, Imitrex inj or nasal PRN, Phenergan, Vyvanse 40mg, Multi Vitamin
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