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Posted 4/27/2013 9:17 AM (GMT 0)
Well, it just keeps getting better and better. NOT!

Went for a regular checkup yesterday and told her that I really don't feel anybetter. I'm having problems sleeping, anxiety is getting worse, crying at the drop of a hat and I keep getting constant sore throats, my lymph nodes in different areas of the body keep swelling and I just hurt all over all the time and chronic fatigue that has not gone away even with a blood transfusion back at the first of Feb.

I am on a duragesic pain patch, 25 mcg, 72 hour. But was taken off my generic ambien and my hydrocodone for breakthrough pain. No other meds.

So she gave me the Trazodone and Leflunomide. She will not prescribe Plaquenil because too many of her patients have had too many eye problems because of it.

Can any1 explain to me why she put me on a med for RA? She says I don't have it but I do have Systemic Lupus, Fibro and Connective Tissue Disease.

Oh and on top of that she said I am borderline diabetic now on top of everything else. So far no meds but she did tell me I needed to change my diet and she will retest me in 6 months and if it hasn't gone down significantly by then she will put me on meds for that. mad

For those of you on this stuff, how well did it help?

Posted 4/27/2013 12:02 PM (GMT 0)
Hi txplowgirl!

It took me 2.5 years and 11 specialists to get a UCTD/Lupus diagnosis. Like you, I knew in my heart that I had and have Lupus and it was only recently confirmed. As you probably already know Fibro and Connective Tissue Diseases like RA, Lupus, Sjogrens are known to overlap (comorbid).

Anyway, I had to see a total of 4 rheumatologists to finally get diagnosed and treated. It was a long uphill battle, but mostly with my health insurance (no surprise there, right?).

I am not familiar with Trazodone and Leflunomide, but I am with Plaquenil, and both of my rheumatologists at Johns Hopkins to include my opthalmologist said that eye (retina) damage due to Plaquenil is very rare, but still recommend yearly check-ups.

Is getting a second opinion from a rheumatologist an option for you?
Posted 4/27/2013 6:25 PM (GMT 0)
I stay away from the prescription meds. I will do so when my staying away from flare foods and taking the proper vitamins. I take 3grams of omega 3 fish oil, 3 grams of evening in primrose, 2 hyaluronic joint complex,
40mg. of Lutein and 5mg Astaxanthin a day. This keep my pain down to a rummble and my eyes are getting better all the time. Before you do something like this you need to check with you doctor or pharmacist to be sure they won't interphere with your prescription meds. Before starting this...I was at a contant 6-8 and now I am at a 2 most of the time with an occasional 4-6 if I eat what I shouldn't. Just because this works for me...doesn't mean it will work for you. Check each one of the supplements on the web in conjunction with lupus and sjorgrens...you will be amazed!
Posted 4/27/2013 6:46 PM (GMT 0)
hi-I have lupus, R/A, schrogrens,pulmonary fibrosis etc.!I have been dealing with systemic lupus and R/A, and they are basically treated with the same meds.I have taken every med out there for the past 15 yrs., and nothing has helped.This year is my worst one ever, as I have lost the use of my hands.(most of my fingers}
Posted 4/28/2013 1:52 AM (GMT 0)
Ra and lupus shares a lot of the same meds. I have taken plaquenil for 7 years with no problems. I have my eyes checked every 6 months, and my Dr. says he has never had a case of damage to the eyes from plaquenil.

We must all do what is the best treatment for us. I take the plaquenil and am down to 7 mg of steroids a day, nuerontin, asa, potassium, calcium, multiple vitamins. I take a saliva pill for my sjorgrens and well as restasis for my eyes and nose sprays . I take a muscle relaxer when needed as well as pain meds. (low dose). I became worse around thanksgiving and was given 2 infusions of Rituxan in January. It definitely helped and I am probably getting close to needing it again.

I exercise, use heat and ice as needed, hot tub, and try to pace myself.

I have trouble most nights sleeping. Trazadone was wonderful for that. Due to the dryness it caused I had to come off of it and use Lunesta. I tried doing without the lunesta, but decided I could not deal with multiple illnesses without sleep. Even now I sleep 2 hours at the time, wake and eventually go back to sleep. Most nights I am in pain.

I guess what I am trying to say is Lupus is very hard to diagnois. It can flare on you at the drop of a hat. Each of us have to find what works for us and there is no shame is taking meds.

I hope you find what works for you.
Posted 4/29/2013 9:32 AM (GMT 0)
Thanks everyone for your replies.

First off will be getting a new Rhuemy but can't get in to see her becasue she is all booked up until late July. I hope that means she's good.


After years of having different kinds of symptoms. I was diagnosed with Fibromyalgia, high blood pressure and Osteoarthritis 5 years ago, Fast forward to the 4th of dec last year to get results of tests I had run a week before. I tested positive for Systemic Lupus, Connective Tissue Disease and bad Anemia.

Fast forward to the last couple of days of Jan, first of feb this year and I spent 4 days in the hospital with a severe lupus flare and wound up with needing a blood transfusion. I have been on in the last several months, several different meds. They change in strength.

Dont mind some side effects if it helps with everything else.
Thursday, she drew blood and told me I should hear something back by wednesday. She thinks i'm in another flare and if so I will be headed back in the hospital for more Solumedrol by IV.

As far as trying herbal stuff. I filed for my social security disability 2 months ag becasue i've not been able to work in 2 years. My case manager told me that if I quit the meds drs precribe, I can forget getting my disability. I have to see my dr regularly and take any med prescribed.
If I do get my disability then I will try the herbals.

Post Edited (txplowgirl) : 4/29/2013 3:39:52 AM (GMT-6)

Posted 4/29/2013 11:57 PM (GMT 0)
Hon,

If your flares or landing you in the hospital I would not let anyone talk me into stopping my meds.
You might try vitamins and supplements with them, but I would never stop them.

What we have is a progressive illness and I would listen to my Drs. and try to keep things under control. Just my opinion..........
Posted 4/30/2013 12:17 AM (GMT 0)
I said that I stay away from meds and will as long as what I am doing is working. I am not trying to tell anyone who is on meds to stop. I am saying that you can make things a lot better by eating the right foods and taking the right vitamins. You will find that once your body is has the proper nutrition and the right vitamins, the meds will help you even more. My friend does both and she has improved by ten fold. She can do things now and has learned to accept lupus for what it is. There are days where things are not the best.
Tomorrow is always another day and things will be better. Some people can get by with less meds with vitamins and nutrition. There is always the exception and it can differ by nationality.

I read everything I can in the hopes of finding a better answer. So far, for me, all my research has paid off. I just hope that it will help more than me. I am about helping others, because I know how painful
Lupus can be. I want everyone to be better and enjoy life again.
Posted 5/4/2013 9:47 AM (GMT 0)
txplowgirl
Plaqunel is very hard on your body. It leaves deposits in your retinas. It is an anti maliria drug with no creditable link to supressing or cureing lupus. It gives you horrible night sweats. Change the bed sheets and shower night sweats.
Cellcept is the best drug with the fewest side effects that I know of. Vitamins are good but you need to work with a specialist to find what works for you.
I stay as far away from the anti depressants as possible.

We have this great place to hear each other and lend support! I say any day I am up right is a good day!
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