Neutropenia

[gwenllian111]

Hi guys

I had a Ritixumab infusion today. Been feeling a bit rubbish lately, very bad bach ache, flu like symptoms, but OK.

Only after the infusion, did the nurses realise that I am neutropenic. Had the known before hand, they would not have given me the Ritix! Aargh.

No idea why i'm neutropenic again. I had this problem years ago while on Methrotrex etc, but I haven't been on anything bit Ritix and Pred since 2007.

Best wishes to you all,

Gwen xx

[elephant]

Gwen, hope you start to feel better. I give you credit, feeling bad and trying to take care of three little ones. Your a strong one!

[pberggren1]

What is neutropenia?

[MCC]

What is neutropenia?

I think it's when your white cell count drops too low.

Hope you are ok Gwen x

[Sangye]

Gwen, I hope you're okay. Did you tell your Wegs doc?

[Lola]

Gwen, I'm so sorry about the neutropenia. One of the docs I work for got Rituxan for his leukemia and developed neutropenia. He's fine, he had to be extra careful, but I'm not sure how that affects everything else.

Did they draw your blood and then start the infusion? Just curious.

[elephant]

Gwen, I am sure you have to be extra careful being around sick people. I am sure you already know this.

[gwenllian111]

Gwen, I'm so sorry about the neutropenia. One of the docs I work for got Rituxan for his leukemia and developed neutropenia. He's fine, he had to be extra careful, but I'm not sure how that affects everything else.

Did they draw your blood and then start the infusion? Just curious.

Yes, as the put the IV line in, they drew some blood - but didn't have the results back until the infusion had finished!

I get terrible back ache when i'm neutropenic, so I should have read the signs really. I'm OK, but i've got a throat infection which has made my trachea narrow even further. I was 50/50 about going into hospital last night, I haven't been so breathless in years. I feel a bit better today though, so fingers crossed will avoid any hospital admissions!

The Ritix made me feel quite washed out yesterday though, I usually feel fine after it.

How are you guys getting on? Sorry I haven't posted for ages, we've been moving house. V.busy, although poor husband has done most of the work bless him! And he looks at me like i'm crazy when i tell him how tired I feel all the time, lol. x

[JanW]

Gwen, there is someone new on named Gemma who is also from UK and was talking about bronchial stents. I don't know if you have any experierence with these but just thought I'd pass it on.

[Sangye]

Gwen, please go to the hospital if you're not a lot better today. Any infection can go wild with neutropenia. You may need IV antibiotics. Wear a mask if you go and tell them you're neutropenic. They'll sit you isolated from others. I'm sure you know all this, but just in case....

[gwenllian111]

Yeah, the hospital are always great dealing with me when my whites crash. I've been on isolation in hospital quite a few times over the years, but I thought the cyclic neutropenia had resolved itself, but obviously not quite there yet!

I was feeling quite poorly this morning, but better as the day went on, thank goodness. I think i'll be OK fingers crossed. x :)

[Sangye]

Gwen, have your docs ever explained why you get neutropenic?

[gwenllian111]

well initially, the doctors said that it was because I was so sensitive to the immunosuppresants given to me - but, for years thereafter, i've had cyclic neutropenia. No idea why.

[jola57]

All the meds you take do a number on the white and red blood cells. The higher the meds the more chance for low white blood cells. Do take care not to develop anything more than just a bad cold. Stay indoors if possible away from other new people. Make sure hubby and kids wash hands before touching you. Just your standard run of the mill precautions. I am sure you already know all of this ayway. Hope you feel better soon

[gwenllian111]

I'm neutropenic AGAIN!!!!!

By rights I should be admitted, my neutrophills are only 0.22! But I don't have an infection yet, so i'm staying put at home for now. Having said that, i've packed my hospital bag ready.

Does WG typically cause neutropenia in some patients???!!!! Is it a flare up??

[Sangye]

Oh Gwen I'm so sorry. I think chronic disease can cause some neutropenia, but not to that degree. And I don't see how that could signal a flare. I forget-- have you seen a hematologist for this?

[gwenllian111]

I'm in hospital now. It's a bit frustrating because I don't have an infection, but i'm on IV antiiobiotic cover anyway as my CRP was a bit high yesterday.

My Rheumy said he thinks every time I get a viris, the WG kicks in and my auto immune system fails, thus making me neutropenic each time. So, instead of attacking major organs, it affects my blood count more atm.

Joy. I was meant to be going on holiday on sunday lol.

I miss the children so much, it makes things so much harder. :-(

[Sangye]

Gwen, I'm so sorry you're in the hospital. I can't imagine being away from your babies! Big hugs to you, sweetie. :hug2:Do you know how many days they're going to keep you?

[gwenllian111]

thanks mate. x At least a week. It's the anxiety I find hard to deal with. I'm in isolation in a side room, barrier nursed, feeling OK, and my family are all away and the kids cant come in because of infection risks. I hate it, but got to get on with it i guess there's nothing else i can do. talking to you guys is a true life saver though, thank you for having me!!! x

[DEE]

Gwen ,sorry to hear your in hospital i hope things start to get better for you soon .thinking of you DEE x :thumbup::hug2:

[Jack]

Sorry to hear that they have you in lock down Gwen, I guess it's a case of lose yourself in books or wall to wall TV. :crying:
At least you still have web access. Keep posting and get better soon.

[elephant]

Aw Gwen, you will be home soon enough. Hang in there. We are here!:hug1::hug2: