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CAPISTRANO's Photo CAPISTRANO Posts: 3,432
11/1/13 12:42 P

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Hi Missa526
So happy the Melatonin is working for you. Maybe you can cut down on some of the sleep meds? But that's up to you and your doc. I hate prescription meds and try to do as much natural stuff as I can. I just started drinking an herbal tea called Nighty Night made by Traditional Medicinals....found it at my local grocery store....its organic and non-GMO. It has passionflower and chamomile and other herbals that help calm and soothe the nervous system and help you sleep. (fibro effects the nervous system) I tried that a few times instead of the melatonin and it worked well. And it tastes yummy. It's another alternative.

I know having chronic conditions can be overwhelming and the not knowing what to do can be scary at times. I've had many rheumatologists, some seemed to know what they were doing, others weren't helpful at all. Most just wanted to throw more meds at me...they know nothing about supplements or natural alternatives or how food effects you so I've had to find out things on my own and take control. Some things have worked well and some have not but I've learned to listen to my body. Whenever I have to go to a new doc I pretty much tell them what works for me and what doesn't, what I've already tried etc...some don't like that I'm outspoken about it but I don't care as it's my body, my life. And after 26 years you learn you need to be your own advocate.

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Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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MISSA526's Photo MISSA526 Posts: 384
11/1/13 9:10 A

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Thank you for your advice! I talked to my doctor and I'm on naproxson which has been helping a lot. Also since I take a lot of meds in the morning I'm taking the plaquenil at lunch which has helped my sleep some along with the melatonin. I'm on a lot of sleep meds (I have insomnia ) but the melatonin has helped a lot. I really appreciate your reply! I'm just so lost with all of this... I hope you don't mind if I friend you. emoticon emoticon

It is what it is, or is it?

Tough times don't last, TOUGH PEOPLE DO.

The word impossible is not in my dictionary.

Be curious about what life will bring


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CAPISTRANO's Photo CAPISTRANO Posts: 3,432
10/7/13 4:39 P

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Hi Missa526
Sorry you are feeling so poorly. The one thing you need is sleep and that's a problem too, it doesn't seem fair, does it?

First of all, I know plaquenil takes months before you see a real benefit from it, so keep taking it. Some people have side effects at first so some of your symptoms could be caused from that. I take mine in the morning right after breakfast so it won't bother my stomach. I get migraines sometimes too and the only thing that helps me is coffee and Tylenol. I can't take ibuprofen when I have a migraine...it upsets my stomach and then I throw up. But that's what works for me. Ibuprofen does helps with joint pain and soreness though, or your doc can prescribe something stronger if you think you need it.

Second, one of the symptoms of fibro is not being able to sleep as it effects your nervous system. I used to constantly wake up startled like every 1/2 hour and then it would take awhile to get back to sleep. That pattern would repeat all night long till I started taking melatonin at night. Now I sleep all night, just wake once to use the bathroom, then I'm able to get right back to sleep. But there are meds out there that can help with calming down the nerves and to help you sleep.

Also, I never smoked but I know quitting smoking can cause migraines, anxiety and not being able to sleep. Are you able to use some of the aides available to help with that...patches, pills etc..

Have you called your doc to let him/her know what's happening? They may be able to help you get through the flare.

Hope you're feeling better soon!




Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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MISSA526's Photo MISSA526 Posts: 384
10/7/13 9:58 A

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Sorry to but into the conversation but I'm new to lupus and I have fibromyalgia. I've been taking 300mg of Plaquinel for less than a month. When do most people take it? I take it in the evening because at first it was making me really sleepy but now it doesn't and I'm wondering if taking it at night is why I'm getting horrible sleep again. I'm in the middle of a flare. I'm exhausted, daily headaches and migraines (I have chronic migraines), joint pain and muscle weakness and soreness, and my back is killing me. I can't wait to get to get over this. And I'm trying to quit smoking but it's extremely difficult.Did anyone else smoke prior to being diagnosed? and if so how did you quit?

It is what it is, or is it?

Tough times don't last, TOUGH PEOPLE DO.

The word impossible is not in my dictionary.

Be curious about what life will bring


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CAPISTRANO's Photo CAPISTRANO Posts: 3,432
2/24/13 9:44 A

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Hello and welcome!
Sorry it took me so long to answer!
I have been on plaquenil for over 20 years and never had any problems. It does take about 6 mos to get into your system completely. I am on 200 mg a day as well. It seems to work well for me but everyone is different. I do sometimes have tummy trouble but nothing major. I have heard of some people having terrible side effects from being on plaquenil so if you have given it some time and are still not beginning to feel better, or having bad side effects, then talk to your doctor. There are many meds out there to try.


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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KGUTHALS's Photo KGUTHALS SparkPoints: (1,634)
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2/19/13 11:07 P

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I was first diagnosed with Lupus in 2002 at 9 years old. After my diagnoses my kidneys were failing and they had no idea what to do to help. After a month in bed with a 104 fever my body revived itself and started to work again. I hadn't had a flair since until this last October. I was shocked at how much I forgot about the symptoms. I started seeing a rheumatologist in my area in December and she put me on 400mg of Plaquinel a day. I had consistent nausea for a month until I saw her again and she reduced it to 200mg. I do feel a little bit better on it but am still trying to get used to it. My doc even suggested maybe trying something else if it doesn't work. After doing some research I learned that it takes a while to get in to your system completely. My question for those of you who have been on it for a long time is...did you notice a significant difference in your symptoms after stabilizing on plaquinel? I am curious whether or not I should give it a chance or change meds.

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CLAIREG123's Photo CLAIREG123 SparkPoints: (3,019)
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1/28/13 3:49 P

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Sorry for the late replt Cathy and thanks for the advice!
Perhaps gentle exercise is something I could do.
For last few weeks I have seen massive improvement in symptoms since cutting down on the dairy mostly cows milk, and taking these cod liver oil supplements. Have to say that so much has to be said for natural medication.
Have been having a look online about natural methods as I hate taking meds.!

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CAPISTRANO's Photo CAPISTRANO Posts: 3,432
1/16/13 12:59 P

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My new doc reduced my plaquenil back down to 200mg a day and since my Lupus is in remission, she would like to see me come off altogether. I was also diagnosed with fibromyalgia and she talked to me about all the different meds for that but I decided I wanted to try doing without them.
So far I began taking melatonin because one of the things with fibro is not being able to get good deep sleep...I was waking many times during the night. It seems to be helping as I have begun to dream again so I know I am in deep sleep. I also do tai chi, a gentle form of exercise...I would like to join the YMCA because swimming is another gentle form.

I do not take painkillers except for tylenol when needed. I have been on many different anti-inflamatories and they do nothing for me.
If you look up fibro online, you will find what the causes are and some of the more natural forms of relief. I also practice meditation, deep breathing and they all help.
If I can find an article about fibro, will try to post it in here. I have a great one my doc gave me, if I can figure out how to scan, copy and paste I will post it here

Cathy


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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CLAIREG123's Photo CLAIREG123 SparkPoints: (3,019)
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1/16/13 7:23 A

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I was diagnosed in 2009 and im now in remission. Also on 1 200mg plaquenil a day and 1 azathioprine 50mg. I have found taking digestive enzymes really helps with my IBS.

Was hoping to come off tabs when I see my Rheumy on 1st March . I know it can be a pain in the neck taking tabs I feel like a rattle box sometimes! I was advised that once my Lupus under control idea is to come off tabs completly, but it has been such a long process.

More recenty have had chronic shoulder pain but luckily tests for RA came back clear and not in a flare so wandering if fibromalgia maybe, but thats meant more tabs off my doc more painkillers gggggrrrrr. I also takeCod liver aswell which seems to be helping with the shoulders. Interestingly I have been advised that Plaquenil side effect can be joint pain hmm but I guess its weighing up pros and cons.

I find if I do gentle exercise thats ok, but sometimes if im doing ZUmba I have to have inhaler and energy wise I just want to go straight to bed!

The joys of Lupus hey!!!!!



Edited by: CLAIREG123 at: 1/16/2013 (07:25)
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READINGLADY19 SparkPoints: (586)
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9/3/12 10:08 A

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I have noticed a decrease in my energy, especially when working out. I didn't think plaquenil gave me energy. Hmmmm.
Also when I wake up I feel some aches in joints but not once I'm up and going. Starting to think I should just take it. Grrr

Laura

Laura


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CAPISTRANO's Photo CAPISTRANO Posts: 3,432
9/1/12 10:40 P

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Hi
I have been on plaquenil for about 20 years, never had a problem on it. I was on prednisone when I was first diagnosed 25 years ago. My doctor doubled my dose of plaquenil (400mg) per day last Fall when she diagnosed me with fibromyalgia and that helped. I'm still doing fine on plaquenil.

I remember a few years back, since I was doing so well, my doctor suggested I take myself off and see how I felt. After 3 weeks, I put myself back on because I was feeling awful, very tired, achy, low grade fever, and I knew I was heading for a flare up.

Now I just moved again and started with a new doc, will be having blood tests to go over everything so we'll see what she suggests. She wanted to know what other kinds of meds I had been on besides the plaquenil and prednisone. Those were the only 2 I've been on and as far as I'm concerned....don't mess with what works!

I have also been on digestive enzymes and they helped me with acid reflux/heartburn so I wasn't living on Tums and OTC acid reducers.

You could try to take yourself off the plaquenil, but pay close attention to how you feel. It takes awhile to get out of your system so symptoms could creep up on you.

Hope this helps
Cathy

Edited by: CAPISTRANO at: 9/1/2012 (22:41)

Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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READINGLADY19 SparkPoints: (586)
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9/1/12 8:51 A

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I know I have to speak with my rheumatologist but wondered if anyone ever got of mess completely. I weaned of prednisone. Been off for two years now. I am down to one Plaquinel a day. I feel good, no flares or pain. I also have RA. Anyway, I ran out on Monday and didn't pick ,y refill up yet. I've been working with holistic nutritionist and taking some digestive enzymes. I also take turmeric with curcumin as a natural antiinflammatory.
So I guess I'm feeling like weaning off Plaquinel. I hate that I have to take pills. I hate the thought of taking for life. Has anyone come off when in remission?



Laura


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