Is this another flare?

[gwenllian111]

Hi

I haven't been on for a while, but I was hoping for some advice.

My story is this; (I will try to make this as short as possible!). I was first diagnosed with WG when I was 14 years old, had a severe flare up and I was in intensive care for a few weeks, while doctors battled to save me. Anyway, I pulled through, and things began to get back to normal. Back then, I was told that the disease would never return.

However, I continued to go to follow up appoointment for 10 years, to be told I was absolutlely fine. In reality, I was flaring up, and developed a severe tracheal stenosis. Horrible. But then, in 2007, I developed an optic neuritis, which was treated with cylco, then developed a severe allergy to it. Couldn't tolerate methotrexate, or any other chemo, so eventually was given Ritixumab. Had a year of cyclic neutropenia. Then, this year, I had an inflammed vagus nerve, which made my pulse and bp drop, and had severe pain upon swollowing (the doctors still don't know why that is), but steroids helped.

Anyway, had more Ritixumab 3 months ago, but lately i've started to feel ill again. My knee joints, hips, and shoulder joints have become painful again, and i've become a bit more breathless than usual.

I went to my GP and had my bloods done yesterday, esr 17, crp; 14 wc. 5.9 hb, 29.4 .

My question is, isn't 29.4 for haemaglobin a bit high? What could that be about? I thought I might be anemic, but it's gone completely the other way!

Thanks for any information i'd be really grateful.

Gwen xxx

[elephant]

Normal hemoglobin is ( 12-16), you really need to let your primary and rheumatologist know this. This could mean many things ( empysema, dehydration, medicines....ect). Have this checked out soon. Sorry you are inflamed again. Did they give you prednisone with the Ritumab and did you tolerate it well when given it? How many Ritixumab doses did you get total? Your becoming short of breath is a concern.

[Sangye]

Gwen, are you sure you're reading Hemoglobin (HGB)? That sounds like the Hematocrit (HCT). If it's hematocrit, you're anemic. Hemaglobin and Hematocrit are related and are referred to as your "H and H."

What is your B-Lymphocyte count? Those are the WBCs wiped out by ritux.

How much pred are you on?

It certainly sounds like a flare. Please get it checked out by your Wegs doc asap. With lung and/or trachea involvement, I don't think you should wait until Monday for a CT of those areas.

[gwenllian111]

I'll have to double check, as it was the doctors receptionist who gave me the values over the phone.

Are the crp and esr something to be concerned about do you think? I know they're not up much, but two weeks ago they were at 2 and 3 respectively?

I don't take pred, even though i'm meant to. I know it's wrong, i'm just not compliant. I can't stand the side effects. Not sure what my t cells are at at the moment, my rheumy told me I can't have any more ritix for 9 months after the last infusion.

If i'm having another flare, and pred won't knock it on the head, I don't know what i'm going to do.

[gwenllian111]

Normal hemoglobin is ( 12-16), you really need to let your primary and rheumatologist know this. This could mean many things ( empysema, dehydration, medicines....ect). Have this checked out soon. Sorry you are inflamed again. Did they give you prednisone with the Ritumab and did you tolerate it well when given it? How many Ritixumab doses did you get total? Your becoming short of breath is a concern.

Hi.

I've had a total of 9 infusions of Ritixumab to date, and it's the only treatment i've had with no side effects. I had pred infusions along with the Ritix as 'cover' but i'm not compliant with my meds, and don't take pred at home. Very bad i know.

[Jack]

Before it was discovered that immuno-suppressants work in conjunction with prednisolone to combat Wegener's, it was a near 100% fatal disease. Prednisolone is not a drug you can pick and choose with.

[pberggren1]

Jack, what do you mean by pick and choose?

[Jack]

I was referring to the fact that some of the drugs we take can be dispensed with and the consequences may not be too serious or will be reversible. If you decide to stop taking iron for instance, you may become anemic, but it probably won't kill you. However, if you suddenly stop taking prednisolone, it can be fatal and it is also part of the drug regime of immuno-suppressant and steroid that was discovered to keep Wegener's in check. You can't just decide that you don't like taking prednisolone and stop without expecting some consequences. In the case of Wegener's patients, you could end up dead very quickly!

[pberggren1]

Thanks Jack, I understand much better now.

[gwenllian111]

I don't cope well with having Wegeners, I am utterly in denial. And you may ask, why am I here posting on this site then, if I know the consequences of not taking steroids. I guess I think I might get away with it! My consultant hates it, and he knows i'm not compliant, but he helps me the best he can. I do get very scared though. And I still appreciate your support and advice, despite me not helping myself when it comes to steroids.