Now a 'sort of' diagnosis

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SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 9/12/2012 11:37 AM (GMT -6)   
I went to the rheumy today (not mine, but one in his practice) and because of the increase in pain and other really weird symptoms, they started me on Plaquenil and another steroid pack. She said that my ANA came back at 1:320 finely speckled (last time it was homogeneous) but everything else came back as normal. She said that I most likely have Undifferentiated Connective Tissue Disorder and Fibromyalgia. She is leaning towards Lupus as the UCTD diagnosis. She said we have to wait and see.

Honestly, I do not know if I can handle the pain any longer. She said that the Plaquenil would take about 3 months to kick in, but in the mean time, I am really hurting. She gave me the prednisone pack, but I am afraid it will still hurt. She gave me Vicodin as well, since nothing else makes it (pain) go away. Even that does not make it disappear. I really don't want to take it though. I am afraid that I will become addicted. At the same time, I don't want to hurt.

For those taking Plaquenil, how long was it before you started to feel better? It would be so nice to be able to think again and not feel like I need to sleep all day.

Also, I have peeling skin on my finger tip (deep peeling and fissures in my skin - owe). I did show it to the doctor today, and she said the Plaquenil would make it go away, but she did not tell me what it was. It looked (to me) like psoriasis, and that med is said to make that worse. Anyone know if that is true? hmmm.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/12/2012 11:55 AM (GMT -6)   
Taking Vicodin as prescribed will not make you an addict. Now taking it to feel a "high" *will* be a problem! However, I understand that you want to treat the cause of the pain rather than the pain itself. Using it as directed for the short term is okay - and catching the pain before it gets really bad helps healing and keeps it from getting worse.

How long will you be on Prednisone and what dosage? It is used to treat the inflammation caused by your disease - and it's this inflammation that is causing the pain. You should be on Prednisone or something that is actively treating your symptoms. Plaquenil is mainly to slow down the progression of the illness -- helps some but isn't primarily to treat symptoms.

After initial plaquenil and prednsione, if your symptoms persist, your Dr should try either Cellcept, Imuran or MTX - one of them may help you. (It's trial and error - not all of these help everyone, but any one of them might. In my case the Imuran did nothing, but the Cellcept was a lifesaver! For others Cellcept does nothing, but Imuran is the miracle. It varies!)

If your fatgiue is strong enough that you need to sleep all day, you might not be getting "deep restorative sleep" when you are sleeping. Many of us take something to help us sleep - then we have better quality of sleep and don't feel so tired.

Hope you feel better soon, keep us posted!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 9/12/2012 12:05 PM (GMT -6)   
Thank you. :) She told me that she can give me Celebrex (maybe she said Cellcept and I misunderstood - wouldn't be the first time) after the Plaquenil kicks in. She didn't want me to be on too many meds at once in case I have a side effect. I hope I don't. I want to feel better. The dosage of the steroid (methaprednisolone I believe is the name of the pack) is the typical taper down dosage. I didn't work too well the last time. I hope it does this month.

RE: Sleep. I just don't, unless I am not supposed to, and then I am still exhausted. My neurologist wants me to do a sleep study to figure out what is going on with me when sleeping, but she said she can't do that if I am not sleeping. I have to sleep for a sleep study. :) I don't think I am getting the type of sleep I should be getting. I also think that I may not be breathing when I am sleeping. Several years ago (when I was obese) I did have diagnosed sleep apnea, and I am waking up from sleep in a similar way that I did back then. I am not gasping for breath (I used to have dreams that I was drowning), but I just feel like I have no air. I hope she is able to do the study soon. I also have had a tremor in my hand and twitching in my face (affecting my speech). I have to bring that up to my neurologist. The doctor today said it would be better to talk to the neuro than to her. I also have been having new ringing in my ear. Blah!
UCTD (suspected Lupus) and probably Fibromyalgia.... still going through the tests and all that.

Frequent lurker... Part time poster.

Post Edited (SoSt9) : 9/12/2012 9:45:48 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/12/2012 2:30 PM (GMT -6)   
I started feeling a difference in my pain with plaquenil around the 2nd month. By the third month it was much better.
The pack helps me during a small flare.
I have sleep apnea. The Avap I use helps me a lot.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 9/12/2012 9:49 PM (GMT -6)   
I completely forgot that the steroid makes me feel nasty. I took a nap this afternoon and woke up in a sweat. I also can feel that my blood sugar is high because of it (I do not have diabetes, but I do have a meter - a doc had been overly cautious in the past, so he told me to use it and I discovered this the first time I took the pack). It will not be as bad tomorrow, but I feel myself buzzing. I suppose it is a case of trading one complaint for another and deciding which is worse to deal with. I also took my first does of Plaquenil tonight.
UCTD (suspected Lupus) and probably Fibromyalgia.... still going through the tests and all that.

Frequent lurker... Part time poster.
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