[isavelives]

I am a 33 year old mother of 2 who has been newly diagnosed in June of this year. Since January I have had symptom after symptom. When one goes away another comes in. I have had chronic fatigue, eye infections, stomach difficulties- to the point of not being able to eat without getting sick, skin rashes (even on my face), mouth ulcers (at least 3 times) leading to an ER visit, and lightheadedness. My doctor put me on plaquinel in June, but I don't see a difference. What do I do? Does this ever end?

 

[applesauce]

Plaquenil takes forever and a day to work, you have to be really patient with it. Flares can last very long times, but they can also go away for very long times. When I first got ill I was sick for nerely four years, I know that was about the least encouraging thing I could possibly have said, but it wasn't all deep in a flare, it went up and down within that, and then I went 3 years with almost no symptoms before flaring again a month ago. It's really hard to predict, but even long long flares can be managed with the right combination of meds, it's just finding that combo that can be long and frustrating. Are you on anything besides plaquenil?

 

[isavelives]

Nope, just on plaquenil. Should I be asking for something else?

 

[applesauce]

I don't know, unfortunately. I just know plaquenil takes a long time to work so maybe getting something to make you more comfortable would help. My doctors never really did that though because it's "just treating the symptoms blah blah blah" but, you know, having some symptoms treated can be nice now and again! But I've only been making my own medical decisions for 5 months now, I only turned 18 in March, so before then I didn't really know much of what was going on I just had to do what they said.

 

[cath]

HI,

I'm sorry you are still feeling poorly. Applesause is right that it is too soon for you to have noticed major benifits from the plaquenil - at least not to its full effect. A general guideline is 3-6 months to maximum effectivenes. Also because it kicks in gradually it may be working but you've not noticed as the improvement has been very subtle. This was my experience. I thought it wasn't doing much, but when I stopped it I realised that it had indeed been very helpful indeed.

In the mean time you should at least have a good pain killer, like an NSAID. You may also want to discuss with your doctor a low dose of prednisolone.

From your list of symptoms it looks like you have no organ involvement, or did I miss something? If SLE is attacking one of the vital organs then it is essential that the disease is brought quickly under control and the side effects of stronger meds are not a valid reason for not using them. When the symptoms are joints and skin and general wellbeing then you and your doctor need to weigh up the pros and cons of more agressive treatment. By 'more aggressive' I mean steroids, azathioprine, methotrexate etc. These are all useful drugs and CAN certainly be prescribed for people without organ involvement. On the other hand they have risks associated with them - weight gain and reduced bone density for pred, increased risk of infection for the immunosupressants for example. Therefore their use should be restricted to people where the potential gains outweigh the potential risks. This is something only you and your doctor can decide.

When do you go back to the rheumy?

X C X

 

[chilli]

I was diagnosed in january and began taking plaquenil.....in the beginning i had a terrible time; constant headache for nearly 3 months, the odd rash, but things have changed. the most important thing for me was to be given omeprazole for my stomach problems related to taking plaquenil. perhaps you could discuss it with your GP. i still get nauseous but it is bearable....fab lollies help alot!!!!!!

 

[sjink]

Hi

Sorry you are having a rough time... hopefully the Plaquenil will begin to help soon.
Lots of good advice already, I really agree with chilli, taking something like omeprazole (Losec) may help with the stomach problems. Also there are anti-nausea tablets you can get which really help. I find sipping mint tea (just from mint leaves not with black tea in it) also helps with the nausea.

Making sure you take all medication with food is a good idea too.. but not of course if the food can't be kept down!

Anyway, I am sure you will get lots of answers.
Welcome to the group
Love
Sara
x

 

[nicky00]

Plaquenil takes time. 4-6months or thereabouts.
For me it took 10 months

The term flare is confusing to me as I have never been symptom free. Albeit soooooooooo much better but never ever symptom free.

The best way I understand it is this.

Medications have the potential to supress the disease. Those levels of supression fluctuate.
There are those who go into a kind of remission or just simply longer periods where their symptoms subside or indeed they can worsen.

Then there are those just simply fluctuate.

And of course those who find once they have given Plaquenil its best time shot , will still need something extra, for a long period or now and again, inbetween or never.

Does that make sense?

 

[halfpintfl]

All I can say is YES that makes perfect sense.

Absolutely Perfect, yep!!

 

[nicky00]

Thanks Halfpintl

Thats reassuring....

I just read it again and didnt understand it :rotfl:


Nx

 

[dudley]

Normally a doc will start you off on pred. Then will ease you into plaq and start easing you off pred (steriod). Ask doc about it. Plaq can take up to 6 months to work.

I hated pred but it did the trick.

Elaine

 

[nicky00]

Just a thought but time constraints on medications 'kicking in' so to speak can be a little disappointing when you are the one who is 'still waiting for the kicking in' to happen.

Just another way of looking at it if you are one of those people who's time constraint is 'up' and you are feeling unwell. It may be you have to wait a little longer due to a higher level of lupus reactions going on at that time.

There is a time for patience and a time to call it a day and go for something extra should the medication not be working.

It can be so frustrating to be 'out of time' as reslove gets chipped away.

Lupus is sneaky and unpredictable in my experince!!

It really just could take longer or a shorter amount of time so do not feel thwarted by not fitting exactly into a medical expectation.

Having said all that you may just seriously need something more than just plaquenil and do not be afraid to ask that question.

Nx

 

[isavelives]

Thanks for all of the ideas.

Just went to the GI doctor on Wednesday. He ordered an abdominal CT. If this comes back clear then I get the great Colonoscopy. He thinks its either Crones (spelling?), Ulcers in my stomach, or part of my Lupus (but he doesn't like that diagnosis). I guess when the stomach pains come and go that leads him into this direction. Either way, because of this problem I have lost 20 lbs. Great to lose weight but not the right way.

 

[Nutty]

I'm so glad to hear that your GI doctor is checking things out. Too often doctors blame everything on Lupus and send me back to the rheumatologist who is eqally frustrated when this happens.

I wish you all the best. If it is crohn's, it is also an autoimmune disease and the medication for Lupus may help the crohn's I would think. I know my sister has been taking imurnan for her crohn's and that is what the rheumy is putting me on next instead of the methotrexate. I'm not sure about Plaqenil though (if it helps crohn's or not).

I wish you luck.

Nutty

 

[isavelives]

Thanks Nutty

My abdominal CT was OK. My lab work was not showing any signs of getting worse (kidney disease). He did order a colonoscopy and a uppper GI test. Still am waiting for my date for that. Sounds exciting! ha ha ha.

Went to go out with the girls over the weekend. Didn't know what alcohol does with lupus or my medication. Now today I feel like crap. Can't move a muscle, throat is raw, glands are swollen and giving me a headache. See if I do that again!

 

[isavelives]

Here it is September and I still have not seen any improvement in the plaquinil taking effect. When, When, When can I see any results????

THIS IS CRAZY! I am taking too many days off of work because of all of my symptoms!

What do you others do????

Am I the only one coping with it????

How do I change the state that I am in????

Stacey

 

[Zoi]

Hey (((((((Stacey)))))) :hugbetter:

I'm so sorry to hear you're so unwell still...

Have you had the colonoscopy and upper GI test yet? When will you get the results?

How long have you been on the plaquenil? Generally it can take up to six months to start working.... It might be an idea for you to go to your GP and ask for something that will help with some of your symptoms while you're waiting for the plaquenil to take effect; non-steroidal anti-inflammatory meds, maybe some oral steroids etc etc

Do try and pace yourself for now as far as your every day activities and work go... You're definitely not the only one coping with this; we've all been there at one time or another.... Hang in there Stacey!!! Things do and will get better for you...! :blush:

Sending loads and loads of hugs your way and hope you feel better very soon :grouphug2::grhug:

:flowery:

Zoi

 

[lazylegs]

Hi Stacey,

Sorry to hear you are still so miserable. Hopefully once the Plaquenil kicks in things will get easier for you. Since you started the Plaquenil in June it is probably still to early to see results. Contact your GP to see what he recommends. He may not prescribe anything though until the other tests are done.

Getting through a work week was always a challenge for me. I found I had to prioritize and realize that many things on my list were never going to get done. On the weekend I would cook the food for the entire week and freeze it. Not having to fix the main dish after work really helped. I could just eat and crash. I learned to delegate some of the chores to other family members. That wasn't easy for me. I also learned to say "no". I didn't have the energy to do volunteer work, babysit other peoples children for the weekend or cart the girls to all their sporting activities. Socializing was out, rest became more important. In time you will find what works best for you.

Take care,
Lazylegs

 

[Jesse88]

If, after several months the Plaquenil still isn't working, you most likely will need something to help it along, as Cath said. My understanding is that most RDs like to hit autoimmune diseases hard and fast by prescribing two meds together, often Plaq. and MTX or Imuran or something similar. I'm assuming you've been dx'd with an autoimmune disease because of the Plaq. My own RD gave me Plaq. and MTX

My heart goes out to you. It must be so difficult to carry on and care for a family when you're feeling so ill. I hope you get the relief you need soon.

 

[isavelives]

Most of everyone has said that I need something else besides plaquinil. I'm not the type that loves to be medicated but in this circumstance I think that I definitely need more. Here I sit at the computer not being able to talk or swallow because once again I have the mouth sores. Sores to the point that my lips, tongue, and glands are swollen and I am not able to talk or swallow. I get this at least once a month since May (except August). Every time I have the "magic mouthwash", folic acid pills (to prevent-ha ha), and they either give me a shot of steroids, liquid, or pills. Sometimes a little of everything. STILL, I get it. And it last for over a week. The swollen glands cause a sore throat and then my head hurts. It's neverending!
Does anyone know what else I can do?