Plaquenil And Energy/Fatigue

General
1

I've had PsA for over twenty years now. Apart from the obvious joint pain, the fatigue that accompanied the arthritis has been debilitating and frustrating beyond words. I went from working 60 +/- hrs a week to barely being able to work 40hrs/week. I can only work approx. 25-30 hrs/wk now, then I'm exhausted.

I've read a number of posts here and have done some online research: most things that I've read are leading me to beleive this drug might help combat fatigue.

I am currently taking Methotrexate, Celebrex, Misoprostol and Folic Acid. I've also taken Sulfasalazine, Naproxen, Ibuprofen, Arthrotec and Simponi. None of these medications (past or present) have helped my energy level. Grrrrr!!

I'd appreciate any feedback, be it positive or negative. Thanks..

2

I'm having the same extreme fatigue problem and also looking for a solution. Will post any info I can find.

Frances

3

I'm taking plaquenil. It's another DMARD so you'll have to talk to your rheumy. I have read that it can increase P or cause other skin irritation but I haven't had this problem. Whether it's increased my energy or not...i'm not so sure. Have you had your vitamin B12 levels and vitamin D levels tested? That could be something that might help

4

Plaquenil was my first DMARD, and I've now been on it for about 5 years. It decreased my fatigue but that was because it directly addressed disease level. With what you're taking, I doubt that it would make a significant difference.

At this point I'm on plaquenil and leflunomide, as well as an NSAID. While my fatigue has never been as bad as it was before I started on a DMARD, it certainly hasn't been too good lately either.

5

From my sister who has Lupus:

It was the first med I was put on and have been taking it for two years. All Lupies swear by it. Don't know if it will help you, but it is worth a try. It can take many weeks to work, but I started noticing a difference in two weeks.

I was offered it by my first rheumatologist who did not think I had Lupus. He thought I had some strange form of rheumatoid arthritis.

Frances

6

sorry you have had this so long!

after the 5 yrs triple DMARD,NSAIDS, steroids ( low dose--7 to 10mg)..for 5 yrs, they started Enbrel on me in 2000. I think it came on the market 1998-1999?

I got the energy level back, tookj myself offa prednisone slowly, rheummy freaked at my cortisol levels, but they were ok

but Simponi is a biologic, but there are many more

I read ur BIO..u have Raynaulds, Sjogrens

I started with seronegative RA..mom had positive Ra/lupus

so 3 yrs ago, i got pustullar psoriasis...did i have RA/and PSA...possible..same meds anyway

getting very bad joint pain..tendon pain...which i thought the PSA...

pursued this with my 14th rheuumy, at a major teaching hospital in CHicago....because Remicade healed the peelings, but the joint pain came back after 3 weeks, and she refused to do infusions monthly, instead of 6 weeks

teaching hospital did a whole load of expensive labs...which she hadn't done lately

turns out i saved the last 5-6 yrs of labs, ANA was always positive..and homegenouse, few tiems speckled

so i was positive for lupus, they never treated it, because i didnt have organ involvement..,..but i have bad joint pain

so now i am on plaquenil, not sure what biolgoic to have now..because now i got breast cancer, just had a lumpectomey, and will need chemo...and it may put me in remission..we shall see

the reason i brought this all up ...not to chat about me...is because the lupus ppl, sometimes have sjogrens, raynolds also with lupus

they checked my skin really good, slightly blue sometimes

and really looked into my mouth..., and dentis did...i am borderline for sjogrens, with the dry eye, paper test..schirmer test..not enough tears, dry eyes

could u possibly have lupus also?..It's soooo hard to diagnose, almost invisible at times

good luck take care, and let us know

7

JW..was thinking..they use plaqunil for RA, i was on it briefly in 1996 or 1996, along with mtx, sulpha

but they use plaquenil for lupus..wonder if u have psa and lupus..auto-immune route i am taking also

i joined a few lupus boards..and they all mention achilles tendons

let us know you you do..take care!

8

My former Rhem. had the worst bedside manner I've ever encountered. Asking a question was like pulling teeth: communication was strained at best. He even told me that I had Fibro then recanted when I questioned him about it. After putting up with him for far too long (1996 - 2012) I finally canned the twit last year.

My new Dr. is great and takes the time to communicate and treat me like an actual person, lol! I will take this info to him when I see him on March 13th.

I hope I don't have Lupus but you never know: my cousin has it. I'll metion this to him as well and get that checked.

Thanks to all for sharing your knowledge and personal experience .. it's greatly appreciated!

9

Plaquenil was my first DMARD. I take that, MTX and Leucovorin for PsA. Plaquenil began to work for me about two weeks in, although my doc said it could take up to six weeks to see benefits. I have tried a couple of times to discontinue it. I've never had serious problems because of Plaquenil (just some skin discoloration), but I don't want to take anything I don't need, either. I regretted it both times I tried to quit because the fatigue was so bad without it. Even on Plaquenil I experience fatigue, but I would fight to keep it. It's been a good drug for me.

10

First, I want to apologize if my rant about my former Rheumatologist offended anyone: It seems that I still harbor some resentment about the way I was treated (mistreated is more accurate) for all those years. Sorry if anyone was put off.

Byrd Feeder, thank you for sharing your experience with Plaquenil. It has reinforced my thinking that I should give this medication a try if possible. I had some photosensitivity issues when I was taking sulfasalazine, but I can deal with that if plaquenil improves my energy. Thanks again:)

11

I COMPLETELY understand about being upset about not be treated well by your doc. ! I've felt the same about a couple rheumys. I hope you have found someone now that is helpful, listens and is supportive.

warmly,

Frances

12

You're welcome, JW! I think many of us can relate to having a negative doctor's visit or two. Or three. I know I have. I hung in, though, until I finally found a rheumy that I believe genuinely listens and tries to address not only my physical needs, but also my needs to be heard and understood. It's a big part of quality care in my book!

Hope you get some relief from fatigue soon!

13

Hi Frances and Byrd fdr,

Thank you both for your understanding and support :)

I've only seen my new Rheum. twice, but he's been excellent ... nothing like my former Dr., thank God!

I'll be seeing him soon, on the 13th in fact. I've gathered a good deal of info (here and through online research) so I'll have more than a few questions for him. I have a good feeling about things.

Thanks again and take care ..

14

Great, I'm glad you feel good about your new rheumy. Be picky! It's your health !

Frances

15

I feel the same way JW that the fatigue is the worst! Its so hard to get up and frustrating because my personality was always "no problem"/high energy and very motivated. Now this disease has totally taken over and no matter how hard I've tried to get back to my old "self".. I can't.

Anyway... I notice the more I walked (I have it in my ankles/feet) the more fatigue and pain hit me the NEXT day.. I even started wearing a pedometer and recording how I felt, weather,etc. If I limited my "steps" per day (5000-6000 whatever that means) - even if I still had a little energy left and put my feet up at night before bed, I didn't feel the huge horrible hungover/molasses feeling that keeps you from doing "stuff". My weekends have turned into recouperation half the time.

Prednisone/Tylenol helped me the most with fatigue but Plaquenil keeps my prednisone dose lower. Still only 80% of my former self (Use brand btw, get eyes checked every 6 months-very important-also will slightly blur vision too but reversible, liver function tests). Tylenol is also great because I also dose once before bed and it helps getting up.

The Plaq takes a good 3 months and doesnt completely get rid of fatigue. But I did feel some difference.

BTW I jst found out a new "prednisone" called Rayos came out for RA that is designed for cytokine production (happens when you sleep) that is responsible for pain and fatigue. I'm actually posting somewhere , sorry not to hijack this post!

The other thing that I noticed is the weather does have a huge impact... snowstorms stink. You can't avoid weather but you may find taking it a little easier one day will "save" yourself for another. I also make sure I take the Tylenol the night before.

Colds make my arthritis feel better and fatigue is "different"...more of the normal tired.. actually "perks" me up a little (funny huh??)

Good luck and pls share if you discover something that works!!

16

Info on PsA and fatigue:

http://www.everydayhealth.com/psoriasis/treating/psoriatic-arthritis-treatments.aspx

"Chronic fatigue Chronic fatigue is common. Because patients with psoriatic arthritis shed skin cells every four days (instead of every month, as do people with normal immune systems), they consistently lose protein and nutrients, which leads to malnutrition and exhaustion. Replenishing lost nutrients by consuming foods high in vitamin B12— including liver, shellfish, and fortified breakfast cereals — or taking B12 supplements may help boost energy levels.

Avoid herbal products that claim to "boost the immune system" or "ward off colds," which will worsen symptoms, since patients with psoriatic arthritis already have overactive immune systems. What's more, some herbal products can interfere with prescribed treatment and even cause bruising and bleeding of the skin. Lastly, consume plenty of lean protein (such as chicken, beans, and fish), and drink adequate amounts of water and sports drinks to replace the body's lost electrolytes.