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gwenllian111
01-01-2010, 07:02 AM
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
01-01-2010, 08:43 AM
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
01-01-2010, 09:46 AM
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
01-01-2010, 06:20 PM
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
01-01-2010, 06:22 PM
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
01-01-2010, 08:49 PM
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
01-01-2010, 08:50 PM
Jack, what do you mean by pick and choose?

Jack
01-01-2010, 09:02 PM
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
01-01-2010, 09:08 PM
Thanks Jack, I understand much better now.

gwenllian111
01-01-2010, 09:48 PM
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.

jola57
01-01-2010, 09:59 PM
Gwen, if Rtx is working alone that is good but if you need pred than if not for yourself think of the girls. Since you are not taking pred regularily it is not that you would die because of prednisone imbalance. I think in your case it is your well being and pain symptoms that would be helped by pred as well as putting you into quicker remission. The good far outweights the bad. You have lovely daughters that need you now but will also need you more in a few years and it is for them that you must rethink your get well strategy. Work with your specialist on the best regimen. If that is no pred than good but if he recomends it then don't wait until you are in such a shape that they have to infuse you with it.

Jack
01-01-2010, 10:00 PM
By not taking steroids, you are putting yourself at high risk of a flare up of Wegener's and you need to appreciate just how quickly this can affect you. I went from being quite well to having irreversible kidney failure in the space of two weeks! It does not give you much chance to change your mind.

jola57
01-01-2010, 10:01 PM
Hey Jack I see I am not the only night owl this night Happy New Year

pberggren1
01-01-2010, 10:28 PM
Me too, Me too

Jack
01-01-2010, 10:31 PM
It is mid morning here in England! ;)

pberggren1
01-01-2010, 11:40 PM
exactly what time is mid morning?

timbo vic aust
01-01-2010, 11:53 PM
hi gwen i know exactly where your coming from the pred is the only high dose drug i dont handle either im on 50mg a day but just got cut back to 37.5 mg a day the side effects are bad for me too and i still work full time as well , i am the type of person who is an all or nothing person so i will keep pushing myself mentally and physically to keep me feeling within my self that i have done all in my power humanly possible to keep battling on but as you said you have had the disease a lot of years too. and you hve a young family to bring up. on the other hand i can see where jack comes from too you need it to work in unison with your ritux to fully benifit from your ritux . all the best with your treatment and most of all keep your chin up and stay positive :)

elephant
01-02-2010, 12:17 AM
Gwenllian, I understand how you feel. You are very young and have three children and don't want to really be bothered by this disease and the stupid medicines, but you need to take them. How much prednisone were you suppose to be on? With prednisone you need to slowly get off it because it can induce a flare if you get off it too quickly. Sangye can explain it to you better than I can. You need to take care of yourself first, that means being compliant with medicines for your WG disease. That way you can take care of your family. There can be silent damage going on ....I wish you the best and please for the sake of your family discuss this with your Rheumatologist.

Sangye
01-02-2010, 03:23 AM
Gwenllian,
I totally understand not being okay with Wegs and not being okay with pred. I understand wanting to try only part of the treatment and see if it's enough. Sometimes that plan has worked for me. There are times when docs wanted to use massive doses of pred again and I said No. Turned out I was right. I think you've had the same experience.

This isn't one of those times. You and I are in similar situations-- rtx MUST work, there aren't other options. So we have to do whatever it takes to let the rtx work. For both of us, that means taking the stupid pred. Pred is incredibly depleting to me--it goes beyond the side effects-- so I really fought going back on it. When I couldn't stop coughing up blood, I finally caved and took it.

I think of it like making bread. You can add flour and water, but if you leave out the yeast the bread won't rise. If your Wegs is not that active, rtx alone can get it under control. But if not, you gotta add pred. Like Jack said, you can be doing serious silent damage by not doing the full treatment.

I hesitate to say this last piece, but it could save your life, so here goes. I've only had 1 round of rtx this fall. The plan is a 2nd round in the spring (gotta wait 6 mos). I asked my Wegs doc how many rounds people can get. He said 5 or 6 is about the most they feel safest giving right now. He has 1 patient who developed an allergy to rtx after about 6 rounds. He can never take it again-- they've tried giving him benadryl and high dose pred with the infusion, but couldn't control the reaction. Rtx is a monoclonal antibody. At any time our bodies can recognize it as a foreign substance and develop an antibody to it. So the more doses of it, the more likely an allergy. This is probably why your doc says to wait 9 months for another round. So please do whatever it takes to make this work, okay?

gwenllian111
01-02-2010, 07:51 AM
Thank you for your kind replies. I thought people would be really angry with me when I admitted to not taking pred, and I was dreading checking back on here.

I often flare, and end up in A&E being given IV prednisalone. When i'm on the ward, and my Rheum consultant comes to my bedside, I feel like crying. He's like an angel, and it is only him that truly knows me and how to make me better.
I know it won't always go our way. One day, i'm sure, i'll die from WG.

There was a time, where I was given the last rites, and my mum and dad were sat at my bedside as the doctors had told them that there was no more they could do to help me - it was a miracle, a true miracle that I am here typing this now. I had kidney failure, and severe lung problems.
But despite this, I just can't accept it. If I do anything but carry on like normal, i don't think i'd get out of bed in the morning.

I feel a bit down lately, because I don't feel well, it's the weekend, my Rheumatologist isn't around, and sometimes i lie in bed thinking 'i don't want to die, i want to live for my family, my husband, and for my girls.' My husband has told me i'm being selfish by not taking pred, because if I don't take it, I could deny my children their mother. And he's right. But I still don't take it.

Sangye, I had no idea, no idea whatsoever that you can become intolerant to ritix. I am horrified to be honest. I am horrendously allergic to cyclophosphamide now. My last infusion of cytoxan landed me in A&E with liver failure, inflammed heart and lungs, high temp, d&v - i honestly thought I was dying. I'm also intolerant to methotrexate, immuran, cellcept - everything. It makes me neutropenic and very ill. If ritix fails one day, that'll be it for me.

When it's my time to go, so be it. But until then, I aim to be the very best mother and wife, daughter and sister I can be. Life is too short xx

elephant
01-02-2010, 08:06 AM
Gwenllian, you had it rough and you will get through this. Your body was able to make these beautiful children, that is a miracle in it's self. You still have a strong body. I know how you feel about Prednisone. I had to go on and off it for many years and still on it, but low dose. If you choose to go back on the Prednisone, we are here for you every step of the way. We are here for you even if you don't choose it. We all care for you and want the best, just like your husband. If you start to feel real bad go sooner to the doctor or emergency room. It is perfectly normal to be feeling down when your not feeling well. You just want to say enough is enough! I would love to take all our WG crap and bury in my yard about a mile down and plant a million trees on top of it, mabey that would get rid of it. :)

Sangye
01-02-2010, 01:44 PM
Gwen, please never avoid the group out of fear that we'll be upset with you! We're all in this together. We all go into denial and/ or rebellion over something!

Please don't feel doomed to die from Wegs. That isn't likely if you follow the treatment. I think not taking the pred in steady way has kept you in a state of constant flares, maybe never even getting the Wegs fire totally out. Taking pred on and off could also cause the Wegs to flare. Do you think that you could commit to staying on the pred for the next few months to see if helps? I think it would make a world of difference. Not taking the pred is like putting a gallon of gas in your tank-- you keep running out and can't get anywhere. I think it's really holding you back from getting into a solid remission.

Don't think about what will happen if rtx fails. It's working now, you just have to give it a little booster by taking pred. Pred is an awful drug, I totally agree. Some people say they have a love-hate relationship with it. Not me-- I've got no love for pred.... But you deserve to live and to thrive-- for yourself, for your babies and for your loved ones. Please?

Sangye
01-02-2010, 01:46 PM
Gwenllian, you had it rough and you will get through this. Your body was able to make these beautiful children, that is a miracle in it's self. You still have a strong body. I know how you feel about Prednisone. I had to go on and off it for many years and still on it, but low dose. If you choose to go back on the Prednisone, we are here for you every step of the way. We are here for you even if you don't choose it. We all care for you and want the best, just like your husband. If you start to feel real bad go sooner to the doctor or emergency room.
Absolutely true!


It is perfectly normal to be feeling down when your not feeling well. You just want to say enough is enough! I would love to take all our WG crap and bury in my yard about a mile down and plant a million trees on top of it, mabey that would get rid of it. :)
That's the best idea I've heard yet for dealing with Wegs.

gwenllian111
01-02-2010, 06:17 PM
I'll give it a go, thanks for the replies. It feels like a weight being lifted from my shoulders just being able to talk about it.

Sangye - do you think it's inevitable for a person to eventually become intolerant to Ritix? I've had 9 infusions now, and after my last lost 3 months ago, I didn't feel as well as I did having previously been infused with it. WHat treatment is left to try? Sorry for all the questions.

Jack
01-02-2010, 07:55 PM
Gwen, I'm afraid I can't help with your medication queries, but just want to say that many of us on the forum will understand your attitude more than you might expect. I would imagine that many of us have been through "I'm not going to take any more of this stuff!"

Please don't be afraid to post your thoughts here on the Forum. I would like to think that we would never be judgmental, but that is not to say that we won't nag at you to do what we consider to be the right thing. ;)
However, we will try to be understanding at the same time.

elephant
01-02-2010, 11:59 PM
Gwen, keep us posted. Thinking about you.

Sangye
01-03-2010, 03:08 AM
Gwen, I have no idea if people become resistant to ritux. Maybe your rheumy will know.

I think it's certainly possible that you're experiencing less improvement because the Wegs fire never really gets put out-- it just gets subdued enough that you feel better. Maybe those periodic pred IVs are enough to keep you out of full-blown crisis, but not enough to get you into solid remission.

I don't see a way around you having to go on pred for awhile. If you're becoming resistant to the Ritux, then you have to give this latest dose every chance to get you into remission. If you are not becoming resistant to Ritux, then it's working as hard as it can but isn't strong enough by itself.

coffeelover
01-11-2010, 01:57 PM
Gwen,
I just want you to know that I am thinking about you and the only advice I have for you at this time is to not be so hard on yourself. Your avatar is adorable and remember how lucky you are to have such beautiful children. Hope you feel better soon
LIsa

Doug
01-12-2010, 07:26 AM
Gwen- I can only amplify the thoughts of others. Rebellion is normal, and each of us probably can add a thing or two to the list that we rebelled against, whether the end result was a disater or just something that didn't come to harm. Try to pay attention to doctor's orders. If you feel the trreatment isn't serving your needs, talk with your rheumatologist or which ever doctor is involved. They need your feedback so they can re-evaluate your treatment from time to time. Don't de surprised if your rebellion results in nagging because we don't want you to do things that are self-destructive. In my case, because my weight fell right on a line where the doctor had to make a guess which way to go on my treatment (the higher dosage or the lower, because my weight fluctuated enough the lower might be iondicated). When I felt over-dosed, I mentioned it to my doctor, and he adjusted my dosage. Later he'd re-evaluate my number to see if the lower dosage worked the way he wanted it to or if I just had to deal with the higher one, but the end result was that my passage from full-blown flare with kidney and lung involvement to a weggie well on the way to remission took about six months, with no complications. [I note, Gwen, that I am having a heck of a time lately practicing what I preach to you about taking medication, mainly because I'll get on the computer and lose track of time. I am past due for a pill for pain as I type. I'm stopping at this very minute and taking it! Really!203 There the pill is! I'm getting up for some water now. Yes. Water! Mmmmm! Delicious!

Jack
01-12-2010, 08:11 AM
Why are you taking pain pills Doug?

elephant
01-12-2010, 10:46 AM
I was wondering that myself. Doug you are too funny.

Sangye
01-12-2010, 12:05 PM
Because of the post-herpetic neuralgia? It can be very painful.

elephant
01-12-2010, 12:45 PM
Thanks Sangye for answering that question.
Doug hope that pain goes away soon for you. Your cat picture is very nice.

jola57
01-14-2010, 01:55 PM
We get mad, when, at who? This forum is more fun than the comedy channel, we would never be angry or judgmental of anyone, especially you. My goodness with all that you have been thru you are an inspiration to us.

Doug
01-15-2010, 07:04 AM
Jack ~ I take pain pills for postherpetic neuralgia on the right side of my face and head, a residual "blessing" of my 2007 shingles attack. After I started on Cytoxan/Prednisone, any wegs-related pain was pretty much history. (p.s. I still listen to BBC4 when I have the time. Thanks for sharing that link a while back! )

elephant ~ The longer you take before you seek medical attention for shingles, the longer you deal with the post herpetic pain, which makes sense: the pain is associated with injury to nerves, so the longer the disease process has to work on the nerves, the more work the body has to do to bring those nerves back to a "new normal" OR (I hope) completely healed. I probably went a week with an active case before I got in to see a doctor. I should have taken myself to the ER, in retrospect. If there is a next time, a distinct possibility, I'll do that if only because my GP moved over to head the emergency room operations at the local hospital (I have to find a new GP. ****! I know you know that I know that you know that I know that "****" is the specific word in English to characterize the beginning phase of locating any new doctor. Ha!!)

All weggies should remember, too, that not only are we more susceptible to infections, we are more likely to have severe responses to those infections because of our WG and (maybe) drugs used to deal with that condition. bone necropsy can be an effect of Prednisone and drugs taken to fight osteoporosis (correct me if I'm wrong on that Sangye- seems I read somewhere, though). If you remember, I had to have about 50% of the thickness of my right mandible removed surgically because shingles killed the blood supply to that bone, killing the bone (as far as the oral surgeons and rheumatologists in Denver are concerned- I'm not so sure WG didn't soften me up first, start the process that shingles finished).

Jolanta ~ Because you compared this to the Comedy Channel, I took that to mean "****" was an acceptable word to use in a post: It's your fault! Ha!

Jack
01-15-2010, 07:52 AM
I am a great Radio 4 fan and have a radio in most rooms of the house that I switch on as I move around. Half the time, I am not really listening, but the house feels less empty with voices.

Doug
01-16-2010, 03:20 AM
I do that with Nebraska Public Radio, which is similar to BBC4 in content. That's another thing I like about BBC4- the format is comfortable so I pay more attention to the content.