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KAYACKATHY
11-01-2008, 04:58 PM
I have had a dx for about 3 months, mild by labs, on Plaquenil and Diclofenac.I had a short course of predinsone which was great, but of course lasted about 1 week.I have alot of arthritis pain in knees and feet.I am very acitive and try to exercise when I am not working my 12 hr shift.I still have pain and weakness in my legs, and sometines exercise makes worse, how do you find a balance/?I am out in the sun alot, my baby sunscreen and blocks now leave my face feeling like it burns for 1-2 days after, what is a sun sensitve block I can use? Does the joint pain improve in time...do any supplements help?Do other people go thru depression with this..thanks for your help kathy

KathyW1958
11-01-2008, 05:24 PM
Hi Kathy,
Welcome to the forum. I have had Lupus for most of my life and I still have problems with joint pain and weakness in my legs. I see from your post that you have been on the Plaquenil for only about 3 months. It takes about 5 months for you to get the full benefit of the Plaquenil. You should start feeling better in a couple of months. I try to use the sunblock that is 50 SPF or higher. You have to try if at all possible to stay out of the sun. Lupus is a cyclic disease with remissions and relapses and they do not have a cure for it yet. Hopefully someday they will find a cure and then none of us will have to be sick from it. I think it is common to suffer from depression from this rotten disease. I know I sure do at times, but I try to get out of it as fast as possible. There are a lot of good folks that come in here and they have a vast amount of knowlege. I hope that you keep posting. God Bless.

Hugs,
Kathy

buddhabelly
11-01-2008, 07:07 PM
Welcome KAYACKATHY!

Ive been diagnosed with SLE lupus since 2/06. I still consider myself a newbie. I still come to the forum to learn more about lupus. So glad I joined...

I, too, work 12 hr shifts, which totally knocks me out. I'm too exhausted to even exercise, so I try to do a lot of walking. Ever since my diagnosis, I've noticed my knees ache more often, and on my bad days my aches spread to my neck, back, and I get those dreaded headache/migraines that drag on for days. The aches and pains come and go. :( I've been on plaquenil since the beginning and it has helped my symptoms a lot. But, it does take a while for it to kick in.

And yes, I do feel down and depressed on certain days. But it doesnt last too long. I have my ups and downs. I wake up every morning hoping for a good day, but with lupus, you never know what's in store for that day.

8) Try to stay out of the sun as much as possible. But if you need to be out there, wear a sunblock with a high spf. I wear one that's 55 spf, but I know there's higher spf's out there.

Keep on posting :wink:

Saysusie
11-02-2008, 10:43 AM
Hi Kayackathy;
I just wanted to welcome you to our family also :lol: You've already been advised about avoiding the sun. Sun exposure can cause all kinds of problems for Lupus sufferers. It is very possible that your painful joints and excessive fatigue are due to the effects of the sun. For us, sun exposure can aggravate our symptoms, cause new symptoms to appear, and can even bring on a flare-up! So, it is very important that you avoid sun exposure by wearing clothing that covers your skin and using a sunscreen with MINIMUM SPF OF 35! Also, continue to exercise, but make sure that it is a non-jarring exercise (no jogging, no high-impact aerobics) and make sure that you do not over-do. Low-impact exercise (like swimming, walking, yoga, Pilates, etc.) are best!
I'm glad that you decided to join us and I know that you will find valuable information provided by caring and supportive people.

Peace and Blessings
Saysusie

sits_inthe_corner
11-02-2008, 11:02 AM
Hi Kathy and welcome :)

I've been on plaquenil for almost a year now and it's helping me alot. It's important to have your eyes check every six months when you are on this drug. They need to dialate your eyes to make sure there's no build up of chemical in your eye. I'm coming up to my second eye exam. The first one went quiet well.

I take omega 3 fish oil twice a day and glucosamine twice a day and vietamin D twice a day. Yes I do find they help.

At first I didn't want to take them and would really not bother to. Then my dog who is 12 yrs old came down with arthritis so I started giving it to him (with the vet's blessing of course) Well, he's been pretty much pain free, so I started taking it too. It does help alot.

The Glucosamine helps to restore the protective layers in the joints and the vietamin D helps to get rid of cells that have died off so they can be replaced with healthy new cells.

The omega 3 gives you a shiney healthy coat....oops I mean...

Not really sure what the omega 3's do, just figured the doctor was right about the other two so I'd go along with this as well.

Welcome to the board, it's a friendly supportive group of folks. Look foreward to reading your posts.

buddhabelly
11-02-2008, 12:47 PM
According to studies, Omega-3 fish oil seems to help with a number of lupus symptoms:

Omega-3 fish oil are believed to benefit people with lupus, arthritis, and raynaud's by reducing inflammation and pain.

Omega-3 fish oil help to stimulate your blood circulation and avoid problems like varicose veins and Raynauds disease.

Scientists believe that their anti-inflammatory effects may help protect against heart disease as well.

Omega-3 fish oil also benefit you greatly if you suffer from depression. A lack of omega 3 has been linked to depression.

I take 1 pill twice a day with food. Hope you can swallow pills because they're pretty big. :shock:

sits_inthe_corner
11-02-2008, 04:28 PM
Thanks for that, buddhabelly

The pill I have troubles choking down is the calcium :P

I can't take that with food because I take my other pills with food and the calcium can block the absorbtion of those meds.

So it's the forgoten pill :lol:

KAYACKATHY
11-02-2008, 06:54 PM
thank you for the great replies, it is true, hearing from someone else that knows...did make me feel less alone.I will try the fish oil, I am a kayack, hiker, walker, swimmer and I am out alot but I am wearing a hat and covering my hands and arms.being inside is depressing for me.My skin seems ver sensitive to sun so I need to find a friendler block for my face.Thanks again for the replies, it made me feel better .Night

buddhabelly
11-03-2008, 07:38 PM
I was also wondering what I can use as a sunblock. My face is very sensitive too. I'm very picky with my moisturizer and cleanser. I've been using CeraVe ever since my dermatologist suggested it. Its very gentle on my skin and is non-comedogenic (won't clog pores) so less irritation and breakouts. I've learned that the sunblock to use if you have sensitive skin is Neutrogena Ultra-sheer dry-touch sunblock. Its not greasy and its lightweight. I'm using SPF 70. Give that a try. Its also waterproof and sweatproof, so its perfect for you being that you're very active with outdoor sports. 8)

KAYACKATHY
11-06-2008, 08:20 AM
thank you, I have started on the omega fish oil which was in my cuboard and I will look for the suncreen, I am out every day, wear a hat.Had a great day in my kayack yesterday, just a little stiff today,,will swim later,wishing you all a GOOD day today