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serand4
09-23-2010, 11:33 AM
I was diagnosed with Lupus in June and have a series of serious medical issues almost from the moment of the diagnosis. I have some questions only you guys can answer so please, please help me out.

1. I take Plaquenl. I find that after a few days I start to get bronchitus so I stop for awhile until I feel better. Will Plaquenl eventually help make me feel better with the Lupus? Aside from suppressing my immune system, what does it do?

2. I am terribly weak -- like I've never been before. I this a flare up or is this the way things are just going to be?

3. And headaches -- I always seem to have headaches. Is that part of the Lupus?

I will take any helpful advice you have! My doctors try to help but mostly just tell me I've got to take my medicine or very bad things will happen. (Of course, they expand on that a bit more but you get the general idea.)

Thank you in advance for any thoughts!

Bonita
09-23-2010, 11:42 AM
Everyone is different in the way these dieases affect you and the way the meds work or affect you. I have a lot of headaches and fatigue and joint and muscle pain some days fevers and some days not. I am on plaquinel for almost two years and it never did affect me in any way and i am on prednosone and if he tries to take me off or reduce it the pain gets worse. I have been on this for over 3 years and i am on methotrexate for over a year. I do have some good days but i still have flares and because of the meds the flares are fewer and not as severe as of now. If you have a good doctor and trust him you have to do what he says but you also have the right to let him know if you are dissatisfide with your care. Only you can determine this. I hope you get the care you need and others will be along to explain this better than i because this site is full of caring and knowledgeable people who have fought this longer than i have . Good luck Bonita

serand4
09-23-2010, 03:55 PM
Thank you so much for your response. I was told not to take the methotrexate but then I see it all over the Lupus sites. My pharmacist quietly mentioned that many doctors won't prescribe it. He's not the nosey type so I did listen. I also asked our local Lupus Foundation about their thoughts and they said pretty much what I expected, many people use it but many people don't. I'm currently trying to reduce my Prednisone and you're so right -- it's a painful change. Of course, I've gained 20lbs and my face is much, much rounder than it's ever been so there's a big trade off.

Another question I have, has anyone noticed a change in their eyesite? Mine was already crummy but I'm actually having trouble seeing the tv programs. That's really new!

Also, what exercise types do you recommend? I feel so weak but I know the only way to get stronger is to work at it. I used to work out 6 days a week and I did that for over 5 years. I was in really good shape when all of this started. It's been very sad to see my muscle tone turn to mush! But that's vanity. Now I just want to be able to do more than one thing a day before I feel like collasping.

Again, thank you for your help!

Bonita
09-24-2010, 06:33 AM
I am so sorry you are having so many problems. Be fore i had been diagnosised i lost 60 lbs after my first back surgery but keeping it off has been hard because of the meds i am on. I have gained back about 16 lbs of it and am working to take this off again. Both my husband and i are retired me on dissability and him notmal but he has chronic copd and diabetes so we are avid walkers but some days it gets quite hard to do this but when we can we walk i cannot do this anymore without taking my hyrocodone a half hour before we go. I also have myositis and it affects my muscles but i know if i do not keep trying to get as much exercise as i can i will get worse. There is always going to be good days and bad days and with Gods help i wil endure. With being on the plaquinel i have to have regular chechups every six months on my eyes but i have had to have some in between these visits because of problems. I have seen a neurologist in the mean time and he has diagnosised me with occular migrains and more meds but if that is what i have to do so be it. I have a very good rhumetologist and i trust him. I hope you get better soon. Bonita

debbie-b
09-24-2010, 07:09 AM
I was diagnosed with Lupus in June and have a series of serious medical issues almost from the moment of the diagnosis. I have some questions only you guys can answer so please, please help me out.

1. I take Plaquenl. I find that after a few days I start to get bronchitus so I stop for awhile until I feel better. Will Plaquenl eventually help make me feel better with the Lupus? Aside from suppressing my immune system, what does it do?

2. I am terribly weak -- like I've never been before. I this a flare up or is this the way things are just going to be?

3. And headaches -- I always seem to have headaches. Is that part of the Lupus?

I will take any helpful advice you have! My doctors try to help but mostly just tell me I've got to take my medicine or very bad things will happen. (Of course, they expand on that a bit more but you get the general idea.)

Thank you in advance for any thoughts!

Hi there,

Do I understand you right, you take plaquenil and than you stop?
That is not good for you, especially, because it will take up to 6 months, before it starts working.
For most people plaquenil will help, especially with weakness.
I am 54 and had almost no headaches throughout my life, but lately, I have about three a week. Why, I don't know.
As far as I know, plaq is trying to prevent further damage, to your kidneys or other internal organs.

Debbie

tgal
09-24-2010, 07:18 AM
I have to agree with Debbie. Take the plaquenil regularly. It took over 4 months for me to see any difference but it did help so much! The first few months I wondered why I was wasting the money but by the 5th month I was so glad I had it. One doctor wanted to take me off of it and I begged to stay on it because it had helped so many things. Plaq is an anti-malarial drug that works well on lupus. The only potentially bad effect is on your eye-sight. This is why you need to make sure you go to the eye doctor every year and have them do a plaquenil eye test (they will know what that is). It is rare that the plaq damages the eyes of lupus patients because we don't take really strong doses like they do for malaria but it is always better to be safe then sorry.

As for the fatigue, sadly that is a huge part of this disease. I think most of us have dealt with that at one time or the other (or always). If you haven't read "the spoon theory" yet I suggest you do so. It is a great way to understand this disease and it is a good way to help your friends and family understand it to.

The main thing to know is that we are all different. This disease, and others like it, attack your immune system. Because of that the symptoms are very different with each person (that is one reason it is so hard to treat). As with anything just remember that you know your body better than anyone else (including doctors). Don't shy away from questioning them or standing up for yourself because you have that right. Don't let them push you aside and send you home if you still want information. If you have a doctor that doesn't take the time to listen to you or answer your questions find a new one! You hire them and you can fire them if needed!

Best of luck to you and we are glad you are here!

serand4
09-24-2010, 11:20 AM
Thank you all so much for your replies! I will definitely stay consistent with my Plaq from here on. If there is a light at the end of the tunnel, I will certainly stick it out. I see my rheum doctor today and we will talk about all of this. It's so overwhelming but slowly and surely, I will get my head around this!

scubagramplit
09-24-2010, 03:38 PM
I have to ask, what is the spoon theory? I was raised in the mountains in Idaho, aint got all dat schoolin to leen on:)

I have to agree with Debbie. Take the plaquenil regularly. It took over 4 months for me to see any difference but it did help so much! The first few months I wondered why I was wasting the money but by the 5th month I was so glad I had it. One doctor wanted to take me off of it and I begged to stay on it because it had helped so many things. Plaq is an anti-malarial drug that works well on lupus. The only potentially bad effect is on your eye-sight. This is why you need to make sure you go to the eye doctor every year and have them do a plaquenil eye test (they will know what that is). It is rare that the plaq damages the eyes of lupus patients because we don't take really strong doses like they do for malaria but it is always better to be safe then sorry.

As for the fatigue, sadly that is a huge part of this disease. I think most of us have dealt with that at one time or the other (or always). If you haven't read "the spoon theory" yet I suggest you do so. It is a great way to understand this disease and it is a good way to help your friends and family understand it to.

The main thing to know is that we are all different. This disease, and others like it, attack your immune system. Because of that the symptoms are very different with each person (that is one reason it is so hard to treat). As with anything just remember that you know your body better than anyone else (including doctors). Don't shy away from questioning them or standing up for yourself because you have that right. Don't let them push you aside and send you home if you still want information. If you have a doctor that doesn't take the time to listen to you or answer your questions find a new one! You hire them and you can fire them if needed!

Best of luck to you and we are glad you are here!

tgal
09-24-2010, 04:07 PM
The Spoon Theory is simply a story of one woman trying to explain to her best friend how Lupus makes her feel. It is the best explanation that I have seen. I actually sent this story to friends and family when I became sick. Just click the link below and it will take you there

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino