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Discussion Starter · #1 ·
I really don't know how to put this but I will try. I was diagnosed with lupus over 4 years ago and put on plaquenil and prednisone(10mg). Over the last year the fatigue has gotten worse. I have some achiness but not bad and no organ involvement. As I have posted before, I was a runner and was doing well until about January. Now I feel crappy most of the time, just not myself. It is not horrible and I can function but I am not my usual self. Some days I am very wiped out and have no energy. It is not like I need to lay down and nap though. I also am having trouble getting out of bed in the morning. My normal sleep time would be about 7 hours but now that is not enough. This is a recent development. The doc started me on methotrexate and that hasn't helped. I had 2 good weeks and then I went back to feeling blah. My doc just increased my prednisone and it still isn't helping.

My question is, am I expecting too much by wanting to feel like I use to? Do I just need to realize that this is the way it is going to be? or do I keep trying different meds and combos until I feel normal? Will they make me feel close to my old self?

The doc wants to try me on Humeria or something similar to see if it helps. I am so frustrated with feeling sick and taking meds.

Thanks for any info you can share.
Jeannie
 

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Hi Jeannie,

Your post strikes a chord with me and I think it is a question we all ask ourselves. I'm not sure I really have an answer for you. I certainly think, if you have seen a worsening, that it is well worth trying different meds. Some will work great for one person and have hardly any effect on another. If methotrexate doesn't work there are also things like imuran and maybe even cellcept (though that's usually used a bit more specifically for people with kidney problems and so on).

Another thing that might be worth trying is a plaquenil / quinacrine (mepacrine) combo but that's not always available depending on where you live and how your rheumy works. It is said to be very good for increasing energy.

For the rest, I don't know, maybe you are expecting too much but why should we give up hoping that we might get there? It's a fine balance the accepting and yet not giving in thing.

I used to be a 6 hour a night maximum person. I now need a minimum of 8 hours and often 10!! I certainly can't do any of the things I did before and have had to give up work. I used to ride horses and do aikido, I now have trouble keeping up regular walking and daily life but everyone's disease is different and maybe even I might be able to expect better - I just don't know if med-wise that's possible or if the price of that is taking a higher dose of prednisolone is it worth it?

On the whole, with the worsening being recent I believe it is well worth working with your rheumy and seeing if you can achieve something better. At the same time there are perhaps little things that you can do to improve things. Little ways of resting and learning to pace yourself differently that might make a big difference. Remember that although it is good to try and be as active as you can, pushing through pain or a flare is really not a good idea. With lupus when you're body is saying "stop" it does really mean it.

Katharine
 

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Discussion Starter · #3 ·
Hi Katherine,
Thanks for responding. I have been on plaquenil since first being diagnosed and I am also on celebrex, exovac (for sjogrens) and some imitrex for migranes. Full load of meds. I already cut back what I do and pace myself. Guess I know deep down that things are different and will be that way but I was hoping to hear that with the right meds things can be close to normal. My doc is actually surprised that I got worse and thought of me as a model patient to show off since I kept so active.
 

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Hi Jeannie, it is tough when things get worse. I too have had a bad year and it has been tough to swallow. Katherine has replied so well, I haven't a lot to add, except I know how you feel. I have cut back and paced myself yet, I am still flaring. The only thing I can say is when I get a good spell, I so appreciate it and make the most of it.

I would keep trying the meds, you never know you might hit that combination that works for you. Lots of people with lupus do lead normal lives. Keep working with your rheumy it sounds as though you have a good relationship with him, which is important. I understand your frustration, I wish I could make it better for you. It could just be you have hit a rough patch and a good spell is right around the corner! Heres hoping for you,

Deb x
 

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Hi Jeannie

Thanks so much for asking this question - its one that has been lurking at the back of my mind for much of the time since I was diagnosed last December. Although I would have been happier to hear that its quite possible to feel like one's old self - it probably wouldn't have rung true.

I'm so grateful to be finally diagnosed and given medication (plaquenil); it almost feels wrong to complain about feeling like a frail elderly woman whose life is nearing its end. For all I know, such feeling are to be expected and I should be grateful that things are not a lot worse. Afterall, one person's "unpleasant" is another's unbearable and vice versa. Who knows?!?

Merle
 

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Discussion Starter · #6 ·
Thank you all for responding. Sometimes it is very lonely when you are the only one dealing with lupus. It is good to hear from others going through the same thing. My family is understanding but they don't really get it.
 

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Hi Jeannie,

This disease affects all of us differently, but it seems there is not one of us who has not had to make some lifestyle adjustments because of it :( It's a difficult realisation, and not one any of us would do given a choice. But sometimes there is no choice. I am hopeful that once they get you on the right med regime that things will improve for you, they may never be 'normal' but the best they can be.

Are you still taking Metho? Just wondered because when I looked back at your posts you were only on 7 1/2 mg? They did try a higher dose than that didn't they? It's kind of a starting dose and people usually creep up to a much higher dose often 20-25mg. Were you also taking folic acid with it?

love
Lily
 

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Discussion Starter · #8 ·
Hi Lily,
I am on 6 pills of methotrexate and they are 2.5 mg. Maybe I'll call the doc and ask if he can increase it. He mentioned doing that but I was feeling better at my appointment so he didn't. Of course I only felt better for about 2 weeks. I do take folic acid. I must be going through a flare because I am more achy than usual.
 
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