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View Full Version : Still unsure of what to do about meds...



Larz77
04-08-2009, 09:02 AM
I'm still dealng with my confusion. Not feeling well can cloud one's judgement. As you know, I've been feeling awful, but my blood tests keep coming back that if it's my lupus, it's not a huge flare because my numbers have been fairly benign. Really hard for me is my sed rate, which tends to hand in the "normal range". My C Reactive varies from Postitive to negative, and the one test that is off, my Anti DNA test, is off, but not as high as the Rheumy has seen in other lupie patients. So I'm caught in this quandry. I've went to so many doctors to eliminate other possibilities...nothing.

As I mentioned in another post, it's been a long winter of feeling like garbage and it seems like I'm a viral magnet, sick with round after round of colds or whatever is going around. I've been on so many antibiotics, it's spooks me. Caught a cold last week and although I had an uptick in how I was feeling and it lasted two weeks, Sunday I got a bad headache and monday I woke up so sore I could barely move. I find hairs in the sink. I have trouble sleeping. Oh and weight fluctuations, I can drop 5-8 pounds in like a matter of days. Anyone see this in Lupus?

So my Rheumy has reluctantly agreed to try first Imuran (until she found out there is a cross reaction to Allopurinal so she withdrew that and said to take cellcept). Doctors I've seen have varied on their opinion. One doctor told me that I have lupus and so I should get use to the idea that I will just not feel well for the rest of my life. An Infectious Disease doctor told me that if I take Cellcept I will have an immune issue and wouldn't recommend it. My primary has her doubts, she keeps talking to me about stress, when I tell her that the only real stress I have is trying to cope with life while feeling so crummy. Then I find out the Cellcept is very expensive. So, in discussing it with the Rheumy, she says, "I can give you the Immuran, but you'll have to take a very small dose and we'll have to carefully monitor it". I feel like she is just giving in and trying to appease me, even though she doesn't feel like it's the way to go. She has suggested going up to 600 mg of Plaquenil. I'm at 400 now and feel that if it was the Plaquenil that did so much for me, then it should still be working...so I'm hesitant.

I don't want to make a mistake. I know something is wrong with me. The only thing that makes any sense is that it's my lupus, but the blood tests don't help confirm that diagnosis. I don't want to be stupid with my decisions. Believe me, I know you all are just offering opinions as friends and fellow lupus patients. I'm curious what you would do, or if anyone else has dealt with this. I'm out of a game plan at this point and feel lost.

Larz v/

Oluwa
04-08-2009, 09:21 AM
Hi Larz, it is me again...

I was at the same crossroads with pain, feelings, fatigue..changing drugs. Tests were not telling the story on how I feel...Tests are not always a good indicator of a flare...inflammation.

I think they are a good indicator if there is organ involvement, infection but not good for gauging our pain, hair loss, headaches...

After discussing it with my doctor...like yours mine was reluctant, discouraging to prescribed any autoimmunesuppressant drugs.

We decided in a veiling way, I will dose with Deplin for fatigue...and when the drug Savella comes on the market, he will prescribe that because he diagnosed me with Fibro last year too.

I have read in The Lupus Book...Dr. Wallace does prescribe 600mg of Plaquenil when he doesn't want to use autoimmunie drugs for a short duration. When our tests don't indicate or warrant the super duper drugs. I did it on my own while I was having that rampage of rashes...not very long, as I was trying to figure out too if I was allergic to it...

Me? I think I would up the Plaquenil and avoid the heavy drugs. After reading more on the drugs, the side affects I am glad my doctor didn't prescribe them. Prior I was ready and armed to arm wrestle him for the prescription...

Are you doing all you can at home, exercise, eats...medication on schedule...sleep..maybe just a tweak there might bring about relief?

Supplementing with Fish Oils...eating an anti-inflammatory diet?

Be well..
Hugs.
Love,
Oluwa

BonusMom
04-08-2009, 12:30 PM
I wasn't showing any improvement on 400 mg of Plaquenil (reached 400 mg on 1/21/09) or 10 mg Prednisone, so my rheumy upped me to 600 mg. of Plaquenil three weeks ago. The fatigue is better and brain fog seems to be lessened.

I don't know how long I am to remain on the 600 mg dose, but I will see her again on May 5th and will surely find out then.

I had my labs (CBC and such-no AI specific tests) taken two weeks ago--all within normal limits.

Danica01
04-08-2009, 01:53 PM
Mt heart aches for you! I know how it is when your labs tell a different story than the way your body is actually feeling. I had a horrible reaction to Plaquenil and can not take it. I am on Methotrexate injections and it is rough. If you can handle the Plaquenil, I vote for that one! Give the higher dose a try and if you don't see any relief than it may be time to try something a bit different. So many people have so much success on Plaquenil and I wish with all me heart I could take it! The other drugs are just so harsh on your system :-( I really hope you can find some relief soon! I am sending you gentle hugs and healing thoughts. Keep us posted and keep your chin up!