went from better to worse

[maria garcia]

Its me again! Well like you all know my daughter started MTX and PRED. She was doing better for the first two weeks, I assume its the prednisone, to soon for MTX to have worked. Well she caught a cold and it seems like its over but her eyes that had improved are getting red again and her cough is none stop. She has been dry coughing ,no phlegm. for two weeks non stop, especially in the morning but still coughs during the day. Im so frustrated bcse I Don't know what to give her. She goes to school and even though she doesn't complain, it must be hard coughing in class. So it's been a month 2good weeks and 2 bad ones. We have an appt with her eye Dr.(he diagnosed her) and the following week to her rheumy. I was about to take her to the hospital today bcse she couldn't stop coughing . She will be going to the primary tomm. Im not sure what they can do but just in case she needs antibiotics. She just had a chest ct scan and it was fine. She will be going in Jan to an ENT to get checked. I just want her to feel better so she can function without this cough. It just seems like the cold has gone away leaving the cough behind.

[freakyschizogirl]

Try not to worry Maria - when i get a cold the cough lingers for weeks. Its just a Weggie body takes longer to push the cold away.

[Psyborg]

Maria, have they confirmed whether there is lung or airway involvement? I ask because MTX was not successful in fixing my issues, I needed CTX or RTX to get improvement there. I don't want to cause you any distress here, I just want to make sure you are aware. The ENT can verify if there is Tracheal involvment.

[NicShaf]

Do you think it could be her cold lingering? Like Freaky said, it takes the immunosuppressed much longer to get over a cold, but it is good that you are monitoring her symptoms. And a chest x-ray is always good to do if she got sick while on medication.

Does she keep a daily log of some sort with her symptoms so you can look back and see if she is improving? If not, I would highly suggest it. That is how I have determined the difference between Wegs or a cold.

I haven't experienced a dry cough, usually with my Wegs and with a cold, I have phlegm that I'm coughing up. I'm sorry, I have no advice to give on what can help her.

Hope she feels better soon!

[Al]

Maria, you know that I am not an alarmist. But, once again, because Christina's situation--the persistent dry cough, coming out of a cold--sounds so close to mine I have to point out that is could be the disease gearing up for a flare, which is precisely what happened to me. Twice. And it is important to remember that, for weggies, there is no such thing as "just a cold". Even many doctors talk this way. Colds may be harmless. Then again, they may trigger a flare. I wish you well in tracking this down.

Al

[NicShaf]

Maria, forgive me because I'm sure you have mentioned this many times before, but are they starting your daughter on MTX first? Or has she been on CTX or RTX for a while before MTX?

[Thakator]

Hi Maria,
Since becoming isuppressed, I've had two colds. When each had finally run its course. I was left with the dry cough which wouldn't let up. Waited two weeks each time before giving in and going on a ten day round of antibiotics - - worked well each time. Not a flare like Al, more of a second-stage cold like Freaky. Once again, the variety of Wegs. Ron

[Chris G]

My opinion.....and this is just an opinion.....is that her doses for both the mtx and the pred are too low. You mentioned a while back that she has had a dry cough for severall months. I believe that cough has been wg all along. The cold she just had exacerbated the wg cough. Because she recently had a chest ct and the cough is dry, I don't think u need to worry about infection. And she hasn't been on mtx long enough to worry about mtx induced pneumonia. I notice on another thread that the pediatrician told u to try a 40 mg short taper. My opinion is that it's worth a try. If the cough subsides, that confirms that it's wg related AND you will know whether her current dose is too low.

[maria garcia]

My opinion.....and this is just an opinion.....is that her doses for both the mtx and the pred are too low. You mentioned a while back that she has had a dry cough for severall months. I believe that cough has been wg all along. The cold she just had exacerbated the wg cough. Because she recently had a chest ct and the cough is dry, I don't think u need to worry about infection. And she hasn't been on mtx long enough to worry about mtx induced pneumonia. I notice on another thread that the pediatrician told u to try a 40 mg short taper. My opinion is that it's worth a try. If the cough subsides, that confirms that it's wg related AND you will know whether her current dose is too low.

Chris it's only for a week is that enough to see a difference? Im so frustrated her eyes had cleared up. Now two weeks later there read again why? Im so sad, I don't want her to see me cry. I can tell she is upset and asked me today why she is not better. The eye specialist had suggested MTX alone and the RHEUMY added the prednisone. Im scarred of putting her on 40 for 5 days and back to 10 . How is her body going to react. I just want to scream and cry. Im sorry im putting so much sadness on you. You have always been so nice to hear me out.

[maria garcia]

Maria, have they confirmed whether there is lung or airway involvement? I ask because MTX was not successful in fixing my issues, I needed CTX or RTX to get improvement there. I don't want to cause you any distress here, I just want to make sure you are aware. The ENT can verify if there is Tracheal involvment.

Bob after reading many threads I have decided to take her To an ENT. She had a lung ct scan and that is ok. Deep inside I know that there is inflammation somewhere causing the cough. Tracheal involvement most likely. Im having a hard time having conversation with doctors infront of her. It brakes my heart. She doesn't know about the ENT.appt. She keeps saying the cough is a cold and doesn't realize she has had it for a year just not as bad as after this cold. Maybe she is on denial or just doesnt want to worry me.

[maria garcia]

Maria, forgive me because I'm sure you have mentioned this many times before, but are they starting your daughter on MTX first? Or has she been on CTX or RTX for a while before MTX?

Only MTX and prednisone.

[Chris G]

I think going to an ent is a very good.idea. however I think the 40ng pred experiment will give u valuable data. If she takes 40 mg for 5 days then u need to taper it at the same rate....or close to it. For example 40 for 5 days then 30 for 4 days then 20 for.3 days then back to 10.

You asked why her eyes had improved and now both the cough and the eyes are worse. It might be that the disease is gearing up for a more powerful flare. Wg can simmer along with mild symptims for a long time. Then suddenly a big flare comes on. She may be reaching that point.

[freakyschizogirl]

IYou asked why her eyes had improved and now both the cough and the eyes are worse. It might be that the disease is gearing up for a more powerful flare. Wg can simmer along with mild symptims for a long time.

At Addenbrookes they call it smouldering. :unsure:

[delorisdoe]

Also true @ mac, I have been smoldering for more than one year now. good times

[maria garcia]

Chris, I think your idea is very good. The problem is the
Pediatrician only gave me enough for 5 days. We are going to stay with the same dosage and she will take the antibiotics. She has the opthamologist Dr appt. next week ( he is knowledgeable, he specializes in auto immune affecting the eyes). I was very impressed with his practice he is at the University of Miami and is very well known. He also brings in a group of other doctors for there input he was the one who right away diagnosed her and confirmed with the biopsy. I will tell him whats going on. I want him to see how her eyes look now with the current meds. Then the following week I will be going to the rheamy and definitely let him know I think her dose should be higher. Will see what he thinks.

[maria garcia]

For Freaky:
But why after starting the meds.? I thought they would make her better.

[delorisdoe]

Starting the meds does not unfortunately mean that you will be symptom free. I was on cytoxan for 2.5 years and it was not until the last half of a year that the symptoms started to go away.

[Sangye]

It may be that the mtx dose isn't high enough, or that mtx isn't the right drug for her.

[Brooke]

I had a cough like that in the begining when I was flaring, I could not stop! I was started on Pred and Methotrexate.. after a couple of months, the methotrexate was not working so I did the Rituxan Infusions,,, so far (knock on wood) it has helped me tremendously. I also have subglottic stenosis... has she had a bronchoscopy before?

[Psyborg]

I had a cough like that in the begining when I was flaring, I could not stop! I was started on Pred and Methotrexate.. after a couple of months, the methotrexate was not working so I did the Rituxan Infusions,,, so far (knock on wood) it has helped me tremendously. I also have subglottic stenosis... has she had a bronchoscopy before?

I agree with Brooke here, I have stenosis and bronchial involvement and they could never figure out why I had the cough until they did the bronchoscopy. I was told early on that MTX was normally a bit weak for use on airway involvment, that they started with CTX or RTX first then went down to MTX.

[Chris G]

I had a cough like that in the begining when I was flaring, I could not stop! I was started on Pred and Methotrexate.. after a couple of months, the methotrexate was not working so I did the Rituxan Infusions,,, so far (knock on wood) it has helped me tremendously. I also have subglottic stenosis... has she had a bronchoscopy before?

Exactly the same for me. Mtx was tried first. After several months, we decided that no matter how high my dose, it wasn't going to work for me. At some point, they tried to add imuran, but I couldn't tolerate it. After that we went straight for rtx. It worked like a charm. I'm in the middle of my second of rtx round now.

Not all of the drugs will work for everyone. It's likely that her mtx dose will need to be increased (15mg is rather low) - and her pred too (10mg is also low). The other reason that she may have worsened, is simply that the wg could be amping up for a larger flare. What she had been experiencing before was just (freaky's) smouldering wg.

[freakyschizogirl]

I was on MTX and it wasnt "holding remission" for me - although i didnt get any better or worse while taking it. The next step was RTX and will find out in January if it has worked for me.

[Chris G]

I was on MTX and it wasnt "holding remission" for me - although i didnt get any better or worse while taking it. The next step was RTX and will find out in January if it has worked for me.

How are you feeling Freaky? You should be able to feel an improvement by now.

[maria garcia]

Ok things are better over here .My daughter is coughing less and her bloodwoork looks good like always. MTX hasn't affected anything. Her MPO was negative and P Anca was lower. I can breath for now.

[Al]

Ok things are better over here .My daughter is coughing less and her bloodwoork looks good like always. MTX hasn't affected anything. Her MPO was negative and P Anca was lower. I can breath for now.
That is terrific, Maria! Is this report after the prednisone surge, or before, or did you not do the surge?

Al

[maria garcia]

Stayed with the same mg of prednisone. I think the cold aggravated the cough.

[pberggren1]

Ok things are better over here .My daughter is coughing less and her bloodwoork looks good like always. MTX hasn't affected anything. Her MPO was negative and P Anca was lower. I can breath for now.

Don't u mean the other way around? Remember that MPO is the target antigen for p-ANCA.

[Al]

Don't u mean the other way around? Remember that MPO is the target antigen for p-ANCA.
I'm not quite sure what she meant. Anyway, the determination of P-ANCA is made uder a microscope, not from a blood test.

Maria, can you clarify this? Maybe you meant PR-3 ANCA was lower...?

Al

[maria garcia]

She has been positive for P Anca and positive for MPO during the last six months.This last blood work her MPO was not high but average and the PAnca was a little high 1:40. It was weird this time all her blood work including the results of the MPO came back in one day then the PAnca took three. I thought 1 day for MPO was a bit soon. In the past she has had negative MPO and positive PAnca. But this time MPO was in the limits. Why is this weird?

[maria garcia]

I'm not quite sure what she meant. Anyway, the determination of P-ANCA is made uder a microscope, not from a blood test.

Maria, can you clarify this? Maybe you meant PR-3 ANCA was lower...?

Al

She has always been negative for PR-3. What I mean by blood work is they used her blood to check under the microscope to determine how her P-ANCA levels are.

[maria garcia]

I know what you mean but that's what it read. The last time P-Anca was the highest she ever has had it and MPO was lower than usual. I even called the lab for an explanation. But they spoke scientific and I really didn't understand.

[Al]

I know what you mean but that's what it read. The last time P-Anca was the highest she ever has had it and MPO was lower than usual. I even called the lab for an explanation. But they spoke scientific and I really didn't understand.

I still don't understand, Maria. "MPO" ANCA is essentially synonymous with P-ANCA. If one is high, they are both high. It's just that one is measured with a blood test, and the other is from a sample (generally taken from a biopsy) the pathologist looks at under a microscope. (This is why a P-ANCA assessment takes longer, by the way. The blood test is more or less automated; the microscope requires an actual human to prepare the slide and look at it.) Now, it is possible that these two methods do not match because of differing criteria, but, if so, the doctor would usually order a repeat test, in order to sort out the discrepancy. Sorry--this is still confusing to me.

But about inflammation, it is possible (and common) to have no active (that is, no measurable) inflammation and still feel yucky. Part of this comes from the insults the disease has already provided. Part is from the suppression of the immune system. Think about it: One major reason you feel crummy is that your body is telling you to stop doing what you are doing and give it a rest. Feeling bad is a message. Immune systems that are weak--for whatever reason, natural or medicine-induced) need less stress, not more, and they are telling you so. In any case, no measurable inflammation does not mean that there is no disease. Also, some versions of WG are not characterized by a lot of inflammation. Rather, they might me mostly granuloma-oriented.

Al

Al