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Other Platelet Disorders
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TOPIC: Any Correlation?

Any Correlation? 4 years 11 months ago #41697

  • tigereyes
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Have you seen a correlation with low platelet counts and a lupus flare? My rhematologist was kinda shocked with platelet count of 3, that she didn't really explain my labs. ANA is positive again. its at 80, not sure what that means. Vit D super low, so Im now taking a supplement for that. SED rate and CRP super high again. Both drs are tying to keep my platelet stable for my surgery but its been an uphill battle. Im kinda at my whits end and really just want to give up.

I was up off all lupus meds for approx. 4 years. Ive started back on Imuran, Plaquenil, and Ive been on steriods 40mg. Ive been having horrible hip pain, no AVN and was told to try physical therapy. With the more frequent IVIG Im getting more and more joint pain, to the point where I had to stop working. Going to the Dr 3 sometimes 4 times a week. I really not sure whats going on but would really like to get everything under control again. Any idea how high or abnormal my ANA is? It sais less then 40 is normal and mine is 80
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Any Correlation? 4 years 11 months ago #41701

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Jennifer:

AN ANA of 80 is borderline positive and not very high at all. 360 is bit more concerning and 1280 would be very high. A high SED and CRP indicates inflammation which could be why your hips are hurting. My hips get bad at times too. I also struggle with low Vitamin D levels and have been on and off of scripts for four years. As soon as I stop taking them, it drops back down.

I am upset with you for stopping your meds. I have to scold you! I told you before that you have to keep taking Plaquenil for life. Stopping could induce a flare which could be life-threatening. I know you probably had to quit while you were pregnant, but you should have started again.

I don't know of any correlation between low counts and a Lupus flare other than the fact that the immune system can flare up and hit everything.

You can't give up - not an option. You have two little boys that need you. Listen to the doctors, take your meds and get this under control. You will.

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Any Correlation? 4 years 11 months ago #41720

  • eklein
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My counts dropping ARE my flares. They come with mild flu like symptoms, aches, mouth sores, fatigue.

My rheum said something so weird last time I saw him that I am thinking of switching - I have pretty high sun sensitivity for the last few years. He asked if doubling my plaquenil made it any better and I said no, so he said that I might as well stop taking plaquenil. I've been taking it for almost 25 years now, and I wasn't sun sensitive when I started, and I know that is not the main or only reason to take it. So what was with that?

On the other hand I'm not really having problems at this point, and I just ignored his advice and stayed on the plaquenil which he still refills so he isnt' really causing me a problem.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Any Correlation? 4 years 11 months ago #41724

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I've read some really good articles about Plaquenil over the years. They stated that Plaquenil can prevent or prolong a Lupus diagnosis in those who show many symptoms. It can prevent many Lupus complications such as nephritis and blood clots. People may think it's not helping, but they don't know that for sure because they didn't develop problems that may have occurred if they'd gone off of it. It helps to keep antibody production down. Who wouldn't want that?

If a person has no serious side effects, what's the harm in keeping up with it?

Erica, how long after you started Plaquenil did the sun sensitivity start? If you stopped taking it, you could end up with problems that you don't have now. Just a thought.

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Any Correlation? 4 years 11 months ago #41755

  • tigereyes
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The titier was the 1280 I believe. I need to find where I put them. I was nursing for 16 months
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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