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Discussion Starter · #1 ·
I was diagnosed with general arthritis and Rayndaud's at the age of 30, and two years ago was diagnosed with Tumid Lupus, a skin condition (also affects my mouth and throat). I'm now 43. When I was first diagnosed with lupus, I tried plaquenil with disastrous results. Since then, I've managed the symptoms with Prednisone, but that doesn't work all that well. I met with a new rheumy a couple of weeks ago, and he further diagnosed me with Fibromyalgia and Rheumatoid Arthritis. I already take an anti-inflammatory drug for the arthritis but it doesn't touch the arthritis the way vioxx used to (it was taken off of the market a few years ago). To manage the flares, my new rheumy prescribed quinicrine which I started on this past Wednesday. Now I can't sleep, can't eat, my heart is racing, I'm cold, and I just feel generally nauseous. I'm crabby and short-tempered. Surely there's got to be a better solution. Some days it takes all I've got to just keep on keeping on.....I have a high stress job, and am raising a 13-year old son who is bipolar and has other issues, and am currently in a custody battle with my ex husband. Anyway. Just wanted to vent I guess. When I was on just the prednisone, I could hope for one good week in a month. The other weeks I was in pain and so tired I could hardly function. At least now I'm "awake"....I suppose that's better than some of you get... Sigh.
 

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I'm sorry you are dealing with so much at once. You may find it easiest to do what I did. Starting with Monday, cross off every other day on your calendar. That day is for rest - Nothing may interfere. You can decide if you have appts m/w/f or t/th. Do not deviate from this if you possibly can.
The "off" day is for you to rest and heal. The 7th day is up to you. It really made a difference for me that I got the rest I needed.

After a few weeks of of your rest/activity, you will find that you are feeling a lot better.

I didn't even answer my phone, let people leave messages. After a few weeks, friends and family learned to not call on my "rest" days.

Good luck to you,
Sally
 

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Chammes:

I am so sorry you are going through all of this. The added stress on top of the medical and emotional issues of dealing with a chronic illness. Stess is our enemy.

I think you are me...LOL I was DX with Tumid Lupus, then it was changes to SCLE, then added SLE, then RA, etc...

I know what you are feeling beleieve me. Plaquenil keeps the skin issues under control most of the time (I have occasional skin flares when over stressed).

However I have been through a variety of immunosupressant medications for the SLE and RA to obtain a better quality of life than before.

I do have the added complication of kidney involvement which makes the SLE the get the largest focus from the rhumy, so many of the meds I take help more with these issues than you may be recieveing, although many of the same meds are used to treat both Lupus and RA.

Steroids alone, while can be a miracle drug, have so many side affect from long term use that many Rhumies will look to more aggressive treatement in the sense of immunosupressant than leave us on steroids alone. It takes time, pain and experimentation to get the coctail to a level where we can have more "OK" days than "bad" ones.

Please feel free to ask any questions about medical options, coping mechanisms, or anything else that you come up with. We are all here, happy to offer up guesses, ideas, answers, suggestions, lauhs and shoulders in equal measure.

We also have a great chat room, where you can meet members more face-to-face, just pop in there anytime, if you are alone hang out a moment chances someone will join quickly.
 

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Welcome to the site.

Finding the right drug can be difficult. It is just a matter of trial and error. Initially you may feel side effects but I find some of them diminish as your body gets used to the medication.

Your heart racing worries me. Have you contacted your doctor to let him know this is happening?

Take care,
Lazylegs
 

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Discussion Starter · #5 ·
I wish that were an option for me...unfortunately my husband lost his job in April and hasn't found other employment....so I have no other option than to work. At least my employer allows me to work two days from home (I have a 1-hr commute)...so on those days I can rest a little more. Quincrine isn't letting me sleep more than a few hours at a time which is a realy drag. Hopefully that side effect will pass. Thanks for your response and recommendations...I know rest is a great healer.
 

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Discussion Starter · #6 ·
Thanks Sam...I've been reading through some of the posts and they are quite helpful. I like the one rant about how everybody seems to have "your" solution and in the end you feel like having a flare is your own fault. I'll hang in here, and lean on everyone until I get my feet back underneath me again.
 

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Discussion Starter · #7 ·
Yes I have, and he said this is typical for quinicrine and should subside in a couple of weeks. Course with only getting 2-3 hours of sleep at a crack I could be dead in a couple of weeks LOL.
 

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Hello chammes and welcome to the forum !

I am sorry about your situation.

Quinacrine does have a stimulating effect on the adrenal cortex, one reason why it is so good at reducing fatigue. When I started taking it, it had such a galvanising effect I sought advice about being psychotic! My mind was racing away high as a kite, and I slept only 3 to 4 hours at night and was unable to nap in the day. It was not a very pleasant feeling but I was assured I wasn't psychotic because if I was I wouldn't be aware of it. :rolleyes:
I also had a series of very vivid wonderfully therapeutic dreams about major events in my life. It did settle down after a while but I can't recall exactly how long, maybe a week or so.

That's on 100mgs a day which I still take. If I stop taking it or even reduce the dose I notice a big difference both in my mood and energy. I take it along with aralen which is a stronger version of Plaquenil and as they work together it's likely it is even more energising for me than taken alone.

I can't recall heart racing though and I would certainly call my doctor to ask about it. I had a racing heart with a quite different med and hated it. It went when I halved the dose of that medicine.

In your place I would reduce the dose Quinacrine at once and see if there is an improvement in any or all respects. That's the best way to see if a side effect is caused by a drug or not. We react differently to medicines and maybe 100 mgs a day is too much for you, or initially too much and you need to work up to get maximum benefit with minimal side effects or maybe a lower dose will do the trick. In the UK it is often prescribed at 3 times a week
I would reduce the dose now and consult my doc at the earliest opportunity. It is not going to hurt you to reduce it but of course my advice doesn't substitute for your doctor's advice.

It's strange thing about tumid lupus - I think the emedicine article on subacute cutaneous mentions that some doctors think it is a variation of SCLE. I have read that it is thought to be particularly sensitive to UVA rays so sunscreen has to be broad spectrum. UVA is present at the same strength all year round whatever the weather and comes through windows.

If I may ask, how does it affect your mouth and throat - is it like ulcers ? That sounds very unusual and most uncomfortable :sad:

I wonder why you aren't on methotrexate for example a disease modifying drug that is used in both RA and lupus especially suitable for arthritis

Do you have any joint deformity with your RA ?

All the best. Please keep in touch and let us know how you get on :)

Bye for now
Clare
 

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Hello Chammes, Just wanted to say hi and welcome you to the board. I am sorry that you are having such a rough patch. Keep posting and let us know how you are doing.

Take care

Deb
 

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Discussion Starter · #10 ·
I'm taking 50 mg of quinicrine a day....am now on night 4 of basically no sleep. Can't sleep at night, can't nap during the day. Have lost 6 lbs. Heart is still throbbing. Am planning to skip quinicrine tomorrow and call my Dr. the next day. Clare - you asked about the mouth ulcers. I get ulcers on the back of my tongue that make it so swollen I slur my speech and it is very difficult to eat anything. Prednisone usually fixes that up within a few days. My new rheumatologist is the one that diagnosed me with RA and he said our first priority was the lupus, the 2nd would be the RA. Don't want to change too many things at once!
 

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Hi Chammes,

Lupus is bothering my joints too. I have been on several different NSAIDS. Since Jan, 2009 I have been taking methotrexate. I am not having much luck with taking it though. But others have found great relief from it.

Sorry that you are feeling rotten right now.:( I hope your new rhuemy gets you on the right mix of meds for you to find relief.

Take care,
Lyn
 

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Discussion Starter · #12 ·
Well I did talk with my rheumatologist yesterday; he said to immediately stop the quinicrine because obviously I'm allergic to that as I was to the plaquenil. So I'm back to square one - back to the prednisone. Plus he's going on an extended break, so I won't see him again until September. My right side is still semi-numb, so I'm hoping that feeling comes back soon. I can't feel my nose. How depressing. :(
 

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The prednisone should help the inflammation and in turn might lessen that numb feeling. I am left wondering though why the doctor didn't choose to start you on one of the other medications.

Take care,
Lazylegs
 

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Discussion Starter · #14 ·
Update: I did not have a small stroke. I just got back from my doctor, because the pain is rather intense. My body is becoming "awake"...imagine your hand becoming awake after it's asleep and place that pain throughout your whole body, multiply it by 5, and then I think you can grasp how painful this is. I can't even sleep now. Apparently this is just neurological fallout from the Quinicrine. He can't prescribe something that will lessen the pain or help me sleep because both would slow down my brain's ability to heal the neurological damge. I just hope the repair goes fast. Sigh.
 

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Oh I am so sorry you are going through this shocking pain. The only thing I have found to help is relaxation. It is so hard to do as you are experiencing lightening bolts but tense muscles just make the pain more intense.

I hope this doesn't last long.

Take care,
Lazylegs
 

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Discussion Starter · #17 ·
Connie update. So here I am, 9 days after taking quinicrine. I still have numbness and tingling on my right side, and muscle weakness. Even my internal organs don't feel right. I've done a ton of blood tests, and been to the doctor about 3 times this week. Just talked to my rheumy and I think he's brushing me off. He suggested I see my regular physician to figure things out. Nothing like making a person feel like a hypochondriac...as if I needed any help there. :( My husband thinks it's time to get an appointment at Mayo Clinic. They use a team approach there and maybe they can figure me out once and for all. This is ridiculous.
 

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Nothing more frustrating then a doctor who blows you off.

As for the Mayo Clinic I think that is a awesome idea.

How can your doctor blow you off when you have the diagnosis of Lupus and RA???

I'm sorry but I would not send a laboratory rat to him for treatment.:lol::lol::lol:

I am hopeful that you can find a medicine to work well for you and start to feel better. Keep us posted please and welcome to the boards.:wink2:
 
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