Sick & Tired

[annekat]

I wish I knew something helpful to say, but just know I'm thinking of you during the infusion and wishing you the best of everything. With love!!!

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[Alysia]

Thank you so much, Pete, Jana, Michelle, Anne and all the others. Your support and kindness and caring means to me more then I can ever express. I love you with all my heart.

A day after rtx and the 100mg steroids IV, the joints pains are MUCH less, BUT I had about 4 hours of damn crazy wattery diarrhea this morning and I am coughing all day long. It doesn't make sense from the WG point of view.

I sent an email to my WG Dr. He is amazing. Like Pete said, he is a keeper. He wrote to me that besides wg, he thinks that something else is going on. He doubt its a wg flare. He thinks it might be the whipple disease.
Since the damn gastro dr. didn't bother to check it in the biopsies, and we can't count on him, we will check the possibility of PCR testing. It's a testing which track the DNA of the germ. But not sure if we have it in Israel. My wg dr. Wrote that he will check about it in his hospital and I will check in the labs of my health service. He also prescribed to me doxlyn. I hope I can bear it. He also wrote not to take more then 15mg pred.

My dear pred can't even help me now. Neither my beautiful dr. Phil. I dreamt that he was sad.

Very very tired.

[Alysia]

Now I got also pneumonia.

Maybe it is wg flaring ?

Or just "regular" pneomonia because of being immune compromised ?

How can we tell ?

[Pete]

Now I got also pneumonia.

Maybe it is wg flaring ?

Or just "regular" pneomonia because of being immune compromised ?

How can we tell ?

Remember what our friend Jack said: "Just because you have wegs doesn't mean you can't have something else."

I know there's little comfort in that, but I hope you're getting treated for pneumonia, and that you recover quickly.

[annekat]

Alysia, my heart goes out to you. PLEASE recover from this pneumonia fast and stick with that "keeper" doctor to get to the bottom of what is going on with you. We all love you so much.

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[im so blessed]

I'm praying for you Alysia.I hope they are not going to keep giving you the rituxan right now, when you are so sick. Anne is right, we do love you. You're a very special part of the forum. Keep fighting!!!

[Alysia]

Thank you so much for your kind words and caring, Anne, im so blessed and Pete. I love you all and I feel honored to belong to our wg family.

Im so blessed, I finished this round of rtx. No more in the next 6 months.

My blood tests came and they look weired: wbc and crp are normal. But hemoglobin dropped dramatically to 9.7. Also some other numbers are not normal:

Rbc - 3.9
Hematocrit - 30.8
MCH - 24.9
Platelets - 570
Neutrophiles % - 86.3
Lymphocytes % - 8.5
Lymphocytes - # - 0.54
ALT - 53

Thats weired with the ALT (liver enzymes). The norm is 30. So something is wrong.
I dont understand whats going on. I sent the results of the blood tests and of the chest x-ray to my wg dr. He wrote back that there is an infectious process going on for a while now.
I still wonder if its not wg.

Any thoughts are very welcome.

[im so blessed]

I know that alot of tylenol (acetaminophin) can elevate liver enzymes. Have you been taking any over the counter stuff that has this in ?

[mishb]

Alysia, I'm still worried about you and the pneumonia.

My ALT markers are just as high as yours this month, and also ALP markers are very high.
My GP said that they aren't too high as to start bells ringing, but they are high for me, and they are high for the average.

Two things that I have been taking differently since my last blood test are
Panadol Osteo (same as Tylenol, I think) for a steroid related rotator cuff tear, and also magnesium tablets, just because I felt I needed something since I can't take multi vitamins.

I'm so blessed - my doctor said that the Panadol, will not increase my ALP liver test, but she also didn't think that the magnesium tablets would either.

Apart from the torn shoulder tendon, I feel totally fine.
Alysia - I wish you felt fine as well
When will you find out about the increased ALT?
Do your results also show ALP? I would be interested in that result

[Jaha]

Alysia,
I praying that they get you figured out soon and that the Doc takes good care of you. The infusion has prob been really harsh on you, when you had an infection to begin with. I'm having problems with an unknown infection also and I blame it on the infusions. I'm wishing you all the best for feeling better soon. Please take care of yourself. Love and hugs to you dear friend.