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Old 04-23-2009, 06:38 AM   #1
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sproggy HB User
Unhappy confused and worried about LUPUS

Hi

I have been diagnosed with LUPUS after becoming really ill on holiday in Turkey last August.

After numerous tests my doctor started me on "Hydroxychloroquine Sulphate tablets" in January 09. At first they caused really bad stomache upsets, so he halved my dose. I do seem to be coping better with them now, but I haven't really seen or felt any improvement in my condition yet? is anybody else taking this medication? if so how are you getting on with it?


I also have an underactive thyroid which I take Thyroxine for and is under control. so my levels for this are fine at the moment.

I am writing this today, feeling very tired and my joints hurt! I have an appt with my specialist next Saturday and I don't want to feel that I am moaning all the time to him, but I just feel run down and tired all of the time! I find it really hard to get started of a morning, weekdays I force myself to get motivated to get ready to go to work each day,but weekends I could gladly stay in bed all day (I don't, but I could) and I am soo glad when bed time comes around again....I hate feeling like this all of the time as I used to have so much energy and great stamina

no matter what the doctors seem to do,it never seems to improve my tiredness.

has anybody got any good tips on how to help with the tiredness and fatigue?

any help would be gratefully appreciated!:confuse d:

Last edited by sproggy; 04-23-2009 at 06:39 AM.

 
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Old 04-23-2009, 08:47 AM   #2
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newbrunswick45 HB User
Re: confused and worried about LUPUS

Sproggy-so sorry you are feeling this way. Can't comment on the meds as I'm unfamiliar. However, I have lots of experience with fatigue.

Do small steps. You used to be able to accomplish X amount of things in a day - now you can't. Instead of looking at what you can't do, look at what you can do. Nothing wrong with taking a nap during the day if you are tired. Don't take on more then you can handle. DELEGATE where necessary. Involve those in your family - if you are like others, we keep trying to do what we did before we got sick. If you were diagnosed with Terminal cancer would you still be trying to get everything done in a day - or would you say, you know what, this "chore" is not important for me today to get done.

Treat your body well - its telling you to slow down. Lots of fluids, rest, healthy foods. Listen to your body, keep a journal, maybe over time it can give you some clues as to what aggrevates your illness.

Gentle hugs

 
Old 04-23-2009, 11:57 AM   #3
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*erica* HB User
Re: confused and worried about LUPUS

Hi Sproggy,
I'm sorry that you're not feeling well. I have been taking hydroxychloroquine for quite some time now. It has worked miracles for me I do feel your frustration with no improvements. Usually it takes at least three to six months for the medicine to have full effects. For me it took about five months of taking it before I started to feel any improvements. Just try to hang in there, it's worth it

I can sympathize with your problems with fatigue as I'm sure we all can. I have the same problem, no matter what the doctors give me I'm still incredibly fatigued. Newbrunswick gave some great advice! All those little things really do help. I also take vitamin B-12, that really boosts my energy level. However you'd have to check with your doctor to see if he thinks it would be okay for you to take. I hope this was of some help, have a great day
-Erica

 
Old 04-23-2009, 12:36 PM   #4
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: confused and worried about LUPUS

Sproggy, hi & welcome! I've taken Plaquenil for years, and it's helped a lot. But since your stomach reaction led to your dosage being decreased, you may be slower to feel its full effects than the "typical" timeframes Erica described? What is your current daily dosage?

I have to be very careful about sun exposure. Do you? Ask your dr. for guidance, if you haven't gotten any yet regarding sun.

I need to take OTC NSAID's on top of Plaquenil, for pain.

I often "tank" in late afternoon, like the air has come out of all my tires. As for many people with lupus, spring & early summer are my worst seasons. But please know you *can* cut back some without disliking yourself! This is especially important as you're trying to work up to a better level. You should think of it as "addressing your condition", NOT as "succumbing to it". I find lupus requires constant mental re-ordering. Honestly? After years, I still have to talk to myself often. (Or is that my age doing that? ) It's an ongoing battle for me, the mental aspect.

Tell your dr. how you feel; don't fear being thought a bad sport. And if you don't feel more "rebound" in the upcoming months, you MUST say that, too. Make sure you're being tested ongoing, including for the basics so common in lupus (anemia, etc). I hope you post here regularly from now on. Hang tough! Warm wishes to you, from Vee

 
Old 04-23-2009, 02:46 PM   #5
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mindy1974 HB User
Re: confused and worried about LUPUS

hello!
i find some of my lowlowlow energy comes from the mild depression i deal with (alot of us seem to have this). as time goes by and i work on being more positive about my NEW life, the depression lifts and a bit of energy comes back..... i also live off coffee
derlinda

 
Old 04-24-2009, 09:24 AM   #6
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sproggy HB User
Re: confused and worried about LUPUS

Hi Everyone

Thank you so much for your replies! it great to know that there are people out there who really understand how I am feeling! Thank you for all your kind words...

Vee

I am currently taking 200mg Hydroxychloroquine per day (was 400mg)

Yes I have been told to stay out of the sun, but this is also worrying me - does it mean I can never go in the sun at all? or can I go out in it in moderation? I have started to wear sun block everyday - Luckily for me we don't get too much sun in the Isle of Man (but we do get some!) but how do I manage this when we go abroad on holiday? We love being outside all year round - I will find it really difficult and really feel that I am missing out if I have to keep saying to my husband & kids that I have to stay inside because of the sun!

I know some will say that it is a small price to pay for your health, but I am really struggling with how I will manage it.


Ebunselmger

What is your daily dosage of Hydroxychloroquine?

I will definitely stick with it as you have given me hope that it will work eventually.


Derlinda

Yes to sometimes feeling depressed! the constant tiredness makes me feel that I am really lazy, then the guilt of being lazy, followed by feeling really down about it all!


Newbrunswick45

You are right I really do need to listen to what my body is telling me - but sometimes I feel if I really did listen to it properly - I might end up doing nothing at all!

 
Old 04-24-2009, 09:36 AM   #7
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Re: confused and worried about LUPUS

Hi Sproggy,
When I was first diagnosed I was put on 200mg a day and could not increase it until my weight got back up.(I got down to under 95lbs and my rheummy didn't want to give me a higher dosage because of the increased risk of eye problems). Finally my weight got back up a little bit and now I'm taking 400mg a day.

 
Old 04-24-2009, 09:40 AM   #8
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Re: confused and worried about LUPUS

Hi Ebunselmeyer

Did you notice any other side affects with the medication?

 
Old 04-24-2009, 09:44 AM   #9
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Re: confused and worried about LUPUS

Hi Sproggy,
Yes! At first it was so miserable. I was extremely nauseous and dizzy all the time. Every movement felt like I had just stepped off a roller coaster. I called my doctor and he said to give it two weeks and if it didn't pass we'd change the medicine. It passed in less than two weeks and he said it was just my body getting used to the medication. Ever since then I haven't experienced any side effects at all, it's been great
-Erica

 
Old 04-24-2009, 10:05 AM   #10
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Re: confused and worried about LUPUS

hi sproggy ... from another struggling soul

the hard road we travel is not as lonely as you once thought ... loads of us all trying to deal & cope ... some days are tougher than others and likewise some days are easier ...
PLEASE ... you are not lazy ... you have a 'condition' that you still need to learn about ... understanding, acceptance, coping etc all take time but the best advice i have seen is in this thread ...
TAKE IT EASY, keep a journal & learn to listen to yourself ... but really listen!

my motto since being dx in 2003 has become ...
if i cannot do it today, maybe tomorrow if not then tough ... i keep my energy for the 'important to me' stuff ... only in flares do i have to assume this stance. once the treatment kicks in ... the more regular days come more frequently ... when is comes to aches, fatigue etc my mantra ... this too shall pass!

i developed side affects to chloroquine & nivaquine (most meds) and get the blurry vision on plasmoquine ... they say it should stop so i will be resuming my meds after some testing BUT i need to remember to give it time to work ...

 
Old 04-24-2009, 10:29 AM   #11
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Re: confused and worried about LUPUS

Hi Angel

Thanks for your reply - I am asking about side affects with Hyroxychloroquine because I have a few niggly things happening to me - none of them unbearable, but in turn I could do without them. I am trying to work out how much of them is the LUPUS or how much is the medication?

You are right I do have a 'condition' that I still need to learn about ... understand accept, cope etc...but there just doesn't seem to be any easy answers out there. LUPUS is such a complex condition.

It is really helping talking to people who really do understand though - I only signed up to this message board yesterday and already people have been so kind and helpful - I am really grateful for that!

 
Old 04-24-2009, 11:25 AM   #12
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Re: confused and worried about LUPUS

hi sproggy ... i remember i got a v.bad headache & v.bad nausea (although i was not taking the generic) my rheumie was brilliant ... i didn't even know they were side effects until he said to stop ... so discuss these symptoms with your rheumie ... if you have a good relationship it can make the learning easier ...

the peeps on this message board are really fantastic! they offer great insight, kind words and mega support thanks s you know who you ALL are


yes lupus is indeed complex but i found knowledge to be power ... for years i just went along with the doctors. Recently i have taken charge and have found that a journal & my medical history is especially helpful ... my symptoms have kept patterns and talking openly with my rheumie helps put fears at bay... well not this time round as i am going to a government hospital (financial issues) and my pvt doc of 6 years has offered to assist (i love him dearly) but i discussed my current symptoms with him and he agrees that i should go and let them run the required tests to eliminate/confirm ... this is why my history is now essential ...
i have learned to listen to myself ... we are NOT whingers we are sick ... only we know how far we can go & when ... i still sometimes fall in the trap of when feeling 'good' over doing it ... but it gets easier to step back and say 'i am going to do it slowly' (might nap but hey i will get there my way & my time)

sorry i tend to write on & on & on ... keep strong & when you need to, lean on someone ?

Last edited by Angel MJ; 04-24-2009 at 11:26 AM.

 
Old 04-24-2009, 07:45 PM   #13
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watoozie HB User
Re: confused and worried about LUPUS

I have been on Plaquenil for almost 4 years, started out with 400mg a day and as long as I take it with breakfast and supper, it doesn't bother my stomach. It took about 4 months to reap the benefits, but I feel so much better I would not want to be taken off it. I have had a couple flares, but over all I think I will live now and I was doubtful before Plaquenil. I have to take Restaril at bedtime and now and then I take Tramadol for pain. I see my eye doctor every 6 months, but he said there really isn't any worry that my eyes will be effected by the Plaquenil. It has just been such a wonder drug for me! Hope in time it will work for you.

 
Old 04-28-2009, 04:42 AM   #14
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Question Re: confused and worried about LUPUS

Hi

Is anybody experiencing memory problems with Lupus?

Last edited by sproggy; 04-28-2009 at 04:43 AM.

 
Old 04-28-2009, 09:47 AM   #15
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*erica* HB User
Re: confused and worried about LUPUS

Hi sproggy,
I experience what I call "bouts" of memory loss. It's not constant but at times I can be doing something and I forget where I am, what I'm doing, why I'm doing it. I get so confused and I just begin to cry. Other times it's not as much memory loss as it is confusion. It's like if I know I need to use the bathroom I'll go to the refrigerator and open it rather than going to the restroom. Or if I'm extremely thirsty and want to go get tea I'll walk into my closet. It makes doing everday tasks very difficult and can be really embarrassing. Is this somewhat like what you're experiencing?
-Erica

 
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