More meds...sigh

Well, my doc says that the plaquinnel is working 100% yet, even though the rashes have calmed down a bit and so has the itching. My biggest complaint is extreme fatigue which he says is the #1 complaint and it tells him that my Lupus is still flaring and now he wants to add Prednisone to the list of medicine. He is trying to boost my system so that I am not so darn exhausted...I'm SO sick and tired of waking up exhausted and Thanksgiving about did me in....For two days after Thanksgiving I did NOTHING...I couldn't I was TOOOOOO TIRED...waaaaa...ANyone else like this? ANd I am worried about taking the low dose prednisone because I don't want to gain weight...Your thoughts?

Me I would take the prednisone even with side effects- you will feel better and minimze your chances for a critical illness episode. You can minimize the weight gain with diligence on your part and so what if you gain 10 pounds if it gets you out of the bed

Hello Mia,

I'm pleased the plaquenil is helping to a certain extent so fare but regarding tiedness and fatigue with Lupus it is one major issue and it's mainly terrible when your minds more with it and you feel you can achieve something and your body is saying totally opposite.

Regarding prednisone it does help the i've heard s many say, i was offered it plus a tablets for my bones as it can cause osteoporosis but i refused it being a steriod...there's side affects to all drugs but it's how each and everyone of us can master them plus weight gain this this steriod....other members will answer in due course, as there's quite a few on it but on different levels.

These links are about prednisone.

Love Terri xxx

Hi mia. I am taking steroids and Plaquenil too for a month now. My struggle right now is weight gain. My appetite has gone off the roof. I eat mostly veggies, but although i eat brown rice, i feel like i couldn’t stop. I’ll eat a full meal then 2 hours after i’m hungry again.

Just take the meds because it will help you with the flare. Then try to control your food intake. I am, though struggling. Your main concern right now is not weight gain, but to control the flare and get you back on track.

I hope you feel better soon.

Hi Mia,

Do let we know if you go on the prednisone as it's nice to be kept updated how members are going regarding meds besides.

Terri :) xxx

Hi Mia,

I took the prednisone for only 5 days when I first saw my GP about feet swelling. It didn't help any and I gained 10 lbs and my weight goes up and down now. When I saw my rheumie we decided against it.

I can't take my Meloxicam starting today : ) I'm supposed to stop taking it 14 days before the surgery. We'll see how the Tylenol does : / Trisha

I am right there with you. Thanksgiving just about did me in!! The thought f Christmas is so overwhelming I can’t even wrap my brain around it!! As for the prednisone it freaks me out to but you do have to weigh all the pros and cons. Do the benefits outweigh the risks and side effects. I do this with all my meds and there have been some I took and some I didn’t. It’s really sort of a person person choice. I have gained weight since this whole thing began and the thought of gaining more kills me, so I do get it!! It’s a toughy!! Talk to doc about alternatives to steroids. Good luck!!!

Hi Mia
I am on 5mg of prednisone along with plaquenil and other drugs and I have put on weight since my first flare. But I believe it’s helped give me a bit more energy so for me it’s worth it.
But I also agree that everyone is different and you just have to see if it works for you. Take care! Jen

Hi Mia,

I took Steroids....and packed on the weight, I will never take them again, However I was on a large dose of steroids. The way the Dr. explained it to does not matter what you eat or even if you dont eat will gain weight....water weight, but it does come off. I gained 75 lbs. and 3 months of being off the steriods I lost it all. I have never went on them again.....they are so bad for you...but it can also save your life as it did mine. Low doses do not have it so bad...its when you get up to 160mg a day that you feel the effects big time.....

You have to decide ....its your choice...maybe take them for awhile and see how you feel.

Honey you take care......Bernice

Lovely to see so many member's Mia commenting on prednisone and i hope your get some good benefit from it.

Thank you everyone :) xxx

I ate as often as I wanted and lost 20 pounds of the initial weight gain by eating half the portion I would normally serve myself feeling that hungry (voracious appetite).

It took 5 years to stabilize my weight and still needed to lose 50 pounds. It took ten years to get down to a normal weight for my height. Eating quality food like organic helps a lot.

Bon appetite.

"Congratulations" USAGURL,

It may have took you a while to sort you weight issue but you got there through total determination and this is always lovely to hear after the affects of what meds can do regarding weight.

Love Terri :)

I also gained a lot from the prednisone but I was also on meds to help me sleep which didn't help with the weight gain either so now that my Lupus is more under control & I weaned myself down to 12.5 mg of prednisone i've been also eating rt also so now my weight has been dropping and it took time but the Lupus is somewhat under control & now i'm getting the weight under contrl everything takes times never happens overnight so good luck & I hope it works out for you & you feel your best sooner than later. gentle {{hugs}} Jennifer

Hello Mia,

It's just so lovely to see how many members are on prednisone but still got their weight to how they want it.

Thank you all for your helpful comments plus this helps a large amount of new members besides. :)

((((Mia)))) Sorry to hear that you are still struggling with fatigue. Sometimes that can be worse than the pain dynamic. Has your doc offered any other options besides Prednisone? I am assuming he would want to try a taper, but there are other options as well. I sometimes get an injection of a steroid combo, and sometimes that helps with my residual fatigue. My docs try to keep me clear of using steroids unless absolutely NOTHING else works. I know exercise sounds really silly, but I do find that sometimes just a nice slow walk around outside (shielded from the sun). I requested my physician write an order for aquatic/physical therapy. I have the option to use this when I don't feel well enough or strong enough to walk, stretch, etc. Also, is the fatigue you are experiencing mental, physical, or both? There are different things we can do to improve both, but we need to differentiate between them first. Lupus fatigue is different for everyone - what causes it, when it hits, what helps, when it goes. Be kind to yourself, work with your doctor, and you will find the path that's best for you. Just don't give up. Keeping a healthy diet also may help reduce fatigue. Many lupus patients have low levels of vitamin D, which contributes to increased pain and fatigue. Have you had your level checked recently?

Also, try these tips if you haven't already:

  • Alternate activities with periods of rest throughout the day.
  • Establish good sleep patterns.
  • Plan ahead; for example, shop for gifts throughout the year.
  • Prepare meals in advance.
  • Eat a healthy diet and exercise regularly.
  • Stop smoking if you smoke.

I truly wish you the best, and please keep us updated!

I have been tired and draggy these last few days too. The changes in the weather get me....and then being basically still for 8 hours sleeping makes me wake up stiff....sometimes I can shake it and other days I cannot. I couldn't shake it today so I am sort of working from home taking care of work emails.

Your post caught my attention....I use plaquenel and I thought it was working, but I get an itchy rash on my arms every now and then....dr says I also have secondary Sjogrens....figured the rash was Sjogrens...anyway...sorry you are not feeling well. It is so hard around holidays when you want to have fun and enjoy the company of others but all you want to do is stay in bed and try not to ache. It is certainly easy to get TIRED of being TIRED....I hear ya. Hang in there....

HI Mia,

I recently wondered if pred. was a benefit or not regarding fatigue. Well, I have decided to taper myself off of the pred and have been off for a few days. I have found that I am fighting the fatigue again where I was not when I was on 10 mg. of pred. After working I find myself struggling to stay awake. While driving home yesterday, I actually fell asleep at a signal light. So, it might be worth considering if it can increase your quality of life even a little. I hope you are feeling beeter soon. Stay Strong!

Hello Mia,

How are you feeling my friend and please keep we updated when possible.

Love Terri :) xxx