20 year old son

[Aneinu]

Hi all,
I thank you for this site, as I already learned new things.
My son was diagnosed with gpa last week.
They did the plasmapheresis five times and they are scheduled to administer rituximab shortly.
This has been a trying week, as we first learned the seriousness of his illness, and then we learned all the new terminology, and now we pray that the treatment will accomplish what it needs to do, and that the side effects should be minimized.
It is good to have a place where I can dialogue his struggles and receive advice and comfort from others in similar positions.
Thank you again
God bless,

Aneinu

[Pete]

Hello Aneinu,

Welcome to the Forum. Hope we continue to be a valuable resource to you. Feel free to ask questions (even those you think are stupid), vent your frustrations, and celebrate progress.

Hope your son makes good progress with rituximab. What other meds is he taking? Where are you located? Where is your son being treated?

Best to you both!

[Aneinu]

Hello Aneinu,

Welcome to the Forum. Hope we continue to be a valuable resource to you. Feel free to ask questions (even those you think are stupid), vent your frustrations, and celebrate progress.

Hope your son makes good progress with rituximab. What other meds is he taking? Where are you located? Where is your son being treated?

Best to you both!
Thank you.
We are in Cleveland.
He is taking the steroids solu-medrol as well.
I was being pushed to transfer him to another hospital, but firstly, I was confident with the doctors, staff and care of the one he was in, and secondly, I think the only alternative medication was the cyclophosmodine, and that didn't seem to be the correct treatment for him.
They are looking at his craentine count in his kidneys, but they are not overly concerned.
Thank your again.

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[Pete]

If you haven't done it already, you may want to check the Center for Vasculitis Care & Research at Cleveland Clinic. I see Dr Alexandra Villa Forte there. She's great. Some other folks see Dr Carol Langford who is also excellent.

[Aneinu]

If you haven't done it already, you may want to check the Center for Vasculitis Care & Research at Cleveland Clinic. I see Dr Alexandra Villa Forte there. She's great. Some other folks see Dr Carol Langford who is also excellent.
I hear you.
I spent the whole day researching that.
I was able to contact one, and for the time being, I am comfortable with our decision.
Thank you again.

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[Birdie]

and now we pray that the treatment will accomplish what it needs to do, and that the side effects should be minimized.

Welcome Aneinu,

You can relax a little bit worrying about treatment. It's very effective and usually controls Wegener's fairly quickly. Treatment will likely stop further damage long before Wegener's is under control, immediately in my case.

So, learn as much as you possibly can about everything surrounding Wegener's and the medications and medication options. You can't know too much. You need to understand what the doctors tell you, test results, symptoms, new symptoms, also options for treatment. It's a lot to understand so come here with ANY questions. You'll get first hand experienced answers.

We'd also welcome your son to this group if he'd like to come hang out with us.

Gary

[Aneinu]

Welcome Aneinu,

You can relax a little bit worrying about treatment. It's very effective and usually controls Wegener's fairly quickly. Treatment will likely stop further damage long before Wegener's is under control, immediately in my case.

So, learn as much as you possibly can about everything surrounding Wegener's and the medications and medication options. You can't know too much. You need to understand what the doctors tell you, test results, symptoms, new symptoms, also options for treatment. It's a lot to understand so come here with ANY questions. You'll get first hand experienced answers.

We'd also welcome your son to this group if he'd like to come hang out with us.

Gary
Thank you so much.
That is reassuring.

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[Pugdog]

I was 22 when I was diagnosed in 1995. My kidneys failed, leading to 2 transplants. The first lasted 20 yrs. My second was this past July. Sounds like your son had an early diagnosis, which is great. I wasn't that lucky. However with medication and exercise and a healthy lifestyle I have done great make sure your son takes his medicine and that he understands the seriousness of WG and he will be fine.

[woz]

Hi Aneinu, welcome to the wegs family, sorry to hear that your son has wegs, but at his young age, he should bounce back quick now the doctors know what he has. The people who hang out here, are a wealth of knowledge, compassion and understanding, the more you know, the better you will feel, it's very confronting at first, but with a good team of doctors, family support, and information on hand, your son will get back to normality soon.

All the best Woz...

[Aneinu]

I was 22 when I was diagnosed in 1995. My kidneys failed, leading to 2 transplants. The first lasted 20 yrs. My second was this past July. Sounds like your son had an early diagnosis, which is great. I wasn't that lucky. However with medication and exercise and a healthy lifestyle I have done great make sure your son takes his medicine and that he understands the seriousness of WG and he will be fine.
Wow.
Scary.
My thoughts are with you.
Yes, it seems they caught it just as he was beginning to bleed. Lots of blood in the lungs, but before it damaged the kidney.
Thanks for the sound advice....Will do.

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[Aneinu]

Hi Aneinu, welcome to the wegs family, sorry to hear that your son has wegs, but at his young age, he should bounce back quick now the doctors know what he has. The people who hang out here, are a wealth of knowledge, compassion and understanding, the more you know, the better you will feel, it's very confronting at first, but with a good team of doctors, family support, and information on hand, your son will get back to normality soon.

All the best Woz...
Thank you so much.
We definitely are looking forward to that day.
It's as if life begins again.
With the grace of God, it will.

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[Aneinu]

Good morning.
A bit confusing today.
His creatinine level rise to 1.5. Dehydration had been ruled out. They wanna do ultrasound of kidney today and biopsy tomorrow 1130 (if numbers don't improve). There can be two causes: either vasculitis or due to medication. They did switch some medication. Additionally, there are two inflammatory marks that they are watching. When he was admitted his crp was 17; after steroids it decreased to 1.1, but today it went up to 2.3. Also, his sedimentation rate is at 17. The alternative treatment would be cytoxen, which I am not pleased about.
Thank you

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[Pete]

Creatinine is at the high end of normal. (Mine is typically at this level with slight kidney damage.) CRP is well within normal. Sedimentation rate is still pretty high. Hope the ultrasound proves negative and they don't have to do a biopsy.

Cytoxan is often used to induce the inital remission (along with high dose steroids). Should be on it no more than 4 - 6 months. Make he stays well-hydrated while on cytoxan and that he urinates whenever he feels the urge as the metabolates of cytoxan are hard on the bladder.

[Aneinu]

Thank you so much.
On both the creatinine and crp, they are worried about its direction.
Thank you for your wishes on the ultrasound.
I am worried about side effects with the cytoxin.
Should I be?
I know his health is the most important issue at hand, but is this elevated step necessary at this time?

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[Birdie]

The alternative treatment would be cytoxen, which I am not pleased about.

Cytoxin (Cyclophosphamide) is not unusual as a treatment for Wegs. It's what I took immediately after diagnosis and for the first year and a half (150 mg).

Mostly, relax... you gotta stay calm and informed, which it sounds like you're doing by knowing test results. Don't expect instant improvement or be discouraged on a daily basis, especially when the test results show dramatic improvement. Consider pushing the hospital to do ALL the tests they can do. Make them use every piece of diagnostic equipment they own. That's a good thing since it becomes more difficult once he's discharged.

[Birdie]

I am worried about side effects with the cytoxin. Should I be?

Yes. It's a dangerous drug but far less dangerous than untreated Wegener's.

Read this...

http://www.wegeners-granulomatosis.com/forum/new-member-introductions/4932-wegener-s-sucks-case-someone-didn-t-already-know-3.html#post98791

And there are plenty more stories like it to read here.

[Aneinu]

yes; thanks.
staying calm is important.
a question would be if this hospital exhausted their diagnostic possibilities; would a transfer be an option?

[Aneinu]

Agreed; he is being treated with rituximab; the question was if he should be given cytoxin as well.
Obviously, if there's no alternative, it must be done.

Thank you

[Birdie]

would a transfer be an option?

That's always an option.

[Birdie]

Agreed; he is being treated with rituximab; the question was if he should be given cytoxin as well.
Obviously, if there's no alternative, it must be done.

I doubt they'd do both. It takes a some time no matter what the medication.

Cytoxin is the dangerous method. It's used like a hard knock down punch to knock the Wegener's out of a patient. Once it's under control, in a few months or 1 1/2 years in my case, then something else is used for maintenance.

Pete is in your neighborhood and often raves about his expert Wegener's care. That's what you need, Wegener's experts. Wish I had em.

[Aneinu]

From speaking to rheumatologist, she does not envision an immediate switch. It is the last thing that they would do. If needed, they will increase steroids or rituximab beforehand. Cytoxin is last choice. She feels that this will not be done in next few days even if eventually needed.



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[drz]

I was switched from RTX to CTX cause it works faster. They didn't think I would live long enough otherwise for RTX to help me much. It is also easier to adjust the dosage with oral form of CTX which makes it easier to change it when side effects require it. I did have problems from the CTX and mega steroids but I also believe it saved my life.

If the situation is not life threatening then RTX or even a less strong drug like MTX or AZA might be enough at the highest dosages along with large amounts of steroids. A GPA expert at Cleveland or Mayo could consult on best course of treatment easily and quickly if your doctors request it. My treating doctors did and I doubt I would have survived without the input from the experts.

[Aneinu]

Thank you so much for your input. I guess we will know more after the biopsy.

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[woz]

When I was first diagnosed, they gave me CTX and high dose pred, the CTX acts like a sledge hammer (this is how it was described to me) to knock it down fast, which it did, I was on it for 3 months, then switched to azathioprine, which I am still on, I was on pred for about 6 months, I have a few aches and pains, but no complaints, my health is quite good, I work full time, and every day I wake up is a good day................ (except Monday morning)
All the best...

Regards Woz...

[Aneinu]

Thank you for the response. Let us pray that it stays that way.

Do you know why they didn't give you rituximab?

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[Aneinu]

So, his CRP went down to 1.5.
Esp went down to 15.
Creatinine leveled at 1.4.

All good numbers, thank God, at least compared to the day before.

They did a biopsy anyway, which makes sense, and prelim results were like expected that vasculitis was in the kidney.
They do not yet know the quantity.
That being said, the doctors stated that if the numbers are basically stable tomorrow, they will probably discharge him.

On a different note, he did have three nose bleeds today.
He shrugs it off as dryness, but I think he will need to learn what he needs to monitor, and what is a concern.

Thanks, like always, for listening, and your valuable input.

[Pete]

Good to hear the numbers are improving! Is he feeling better? Sure hope so.

Your son may want to rinse his sinuses with saline solution when it's cold and dry to keep those tissues moist. You can get a neti-pot and saline packets at any drugstore. That would help to keep the sinuses clear as well. He could also use a small amount of moisturizing cream in his sinuses.

[drz]

Good to hear the numbers are improving! Is he feeling better? Sure hope so.

Your son may want to rinse his sinuses with saline solution when it's cold and dry to keep those tissues moist. You can get a neti-pot and saline packets at any drugstore. That would help to keep the sinuses clear as well. He could also use a small amount of moisturizing cream in his sinuses.

I think the squeeze bottle kits work better. The drugs stores also sell a product that is much like KY Jelly or Vaseline in consistency to help keep the nasal passages moist.

[Alysia]

Dear Aneinu, welcome to the forum. I am sorry that your son suffer so much. and my heart is going out to you.
you wrote above that they gave him also plasma pheresis ? at what point ? after the rtx ? I ask because if it was after, then it "deleted the rtx. so it is like he never got it.

[Aneinu]

Thank you for the well wishes.
No, it was before the rtx.
Although his creatinine level did go up today to 1.7, they are not overly concerned, and they will be discharging him today. They will raise the presidone to 80 per day.
Want him back for labs on Monday.

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[Birdie]

they will be discharging him today. They will raise the presidone to 80 per day. Want him back for labs on Monday.

Get blood work at least once a week until his condition is well stabilized. I still do once a month after almost four years.

[Jaha]

I am glad you found this place of knowledge for your sons sake. I am wishing your son the very best of care and healing. Please keep us informed about how you all are doing.

[Pugdog]

High dose of pred. Will cause side effects such as moon face, round neck, appetite and might cause him to be edgy at times. I did me , anyway.

[whatthewhat]

Hi Aneinu! Welcome, and I am so sorry for all that he and his loved ones have been going thru. Luckily you are in a great area, and I am so happy to hear that you are comfortable with his care.
There are other guys I have heard of his age with WG - one is studying to be a pilot even. I know many other parents (like myself) of a Weggie kid, and I would just add a word of advice that the disease in pediatrics seems to strike suddenly (including in flares) in very significant ways. I believe monitoring young people is more urgent, in fact.
All the best to him, and you.

[annekat]

Welcome, Aneinu. As you have already discovered, this is the right place to get support, friendship, and information from people who have been there and continue to connect every day with those who are newer to the disease. This is the place to feel so much less alone, and it would be nice to meet your son here, too. But I understand if he'd rather not. He needs to concentrate on getting well, and is on the right track, living in Cleveland, where there are excellent doctors. And the Cleveland Clinic is right there should you ever need help from a doc there in addition to the one you are seeing, whom you feel comfortable with. I'm a firm believer that there are lots of good docs who can treat this disease who aren't on the lists of experts that we are familiar with. Everyone above is right, your son has a good chance of getting a lot better with treatment and resuming whatever he was doing before this hit. Keep us posted, ask any questions, make use of the search function, etc.
Best wishes to both of you.

[whatthewhat]

Cytoxin (Cyclophosphamide) is not unusual as a treatment for Wegs. It's what I took immediately after diagnosis and for the first year and a half (150 mg).

Mostly, relax... you gotta stay calm and informed, which it sounds like you're doing by knowing test results. Don't expect instant improvement or be discouraged on a daily basis, especially when the test results show dramatic improvement. Consider pushing the hospital to do ALL the tests they can do. Make them use every piece of diagnostic equipment they own. That's a good thing since it becomes more difficult once he's discharged.
It's important to note that no pediatric Weggie I know of took Cytoxan any way except infusion. In fact, I only fairly recently understood what you guys were talking about with your "months" lol - I thought you meant like our daughter had 3 months of Cytoxan (one infusion a month for three months.) And one major reason they try to avoid Cytoxan with pediatrics is that its side effects are much more serious than Rtx, and the worry about sterility in particular is an extremely difficult one for most families.

[annekat]

I replied before reading all the posts. When I first got treated in 2011, RTX had just gotten approved and was just beginning to be used more commonly. I had bad insurance, RTX is very expensive, and my doc thought CTX made the most sense for me. It worked fast, but I was on it for close to a year, I guess because once I made a lot of improvement, it sort of leveled off and I still wasn't in anything like remission. I think I could have taken off it a little sooner. I was eventually switched to MTX, which is working well to keep me on an even keel, along with prednisone, of course. I tolerated the side effects of CTX OK, and drank lots of water. I think all the drugs have side effects that must be kept in mind, and people vary in how well they react to a given drug. If the doc decides to try some CTX for a short time to give a little boost, I wouldn't think it a big deal, even if it was along with RTX, which I have heard of being done. But it might not be necessary. Good luck. And if you are in doubt about your docs' take on this or need a second opinion, I'd certainly advise seeing someone at the Cleveland Clinic, like either of the two Pete suggested.

[Aneinu]

Thank you everyone again for your input. My son came home before the weekend. He is tired throughout the day, but getting stronger it seems. He took blood work the other day and all the markers thank God were positive except the creatinine level which was over two. Doctors not so concerned, but they did say that he should drink tons. We are scheduled for second dose of rtx this Monday. Thanks again for this wonderful group.

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[annekat]

I'm so glad your son is home and doing better! Obviously, the treatments are working. Keep us updated on his journey, and whether his creatinine number will improve. Happy Holidays!

[Birdie]

My son came home before the weekend. He is tired throughout the day, but getting stronger it seems.

You can expect him to feel much better very quickly. Wegs goes into hiding pretty fast once it's treated. Make certain he gets plenty of vitamin Klondike.

[Aneinu]

You can expect him to feel much better very quickly. Wegs goes into hiding pretty fast once it's treated. Make certain he gets plenty of vitamin Klondike.
Thank you....first I heard of this klondike.

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[whatthewhat]

How's he doing, Aneinu? The high doses of Prednisone should be giving him a nice aurge of strength and appetite (hence the joke above about Klondike ice cream bars I think) but also maybe a nice surge of, um, emotions and wakefulness, to put it nicely. Anyway, thinking of you two :)

[annekat]

Birdie can post a pic of a Klondike Bar. It will taste very good to your son and be his reward for getting the treatment and starting to recover!
Not sure where you are or if these are available, but I'm sure there are substitutes available (though Birdie might argue.)

[Aneinu]

Thank you to all of you.
The appetite we have seen.
He can't stop eating.
Sushi, meat and candy.
The strength we have not seen.
Thank you again

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[Birdie]

Birdie can post a pic of a Klondike Bar. It will taste very good to your son and be his reward for getting the treatment and starting to recover!
Not sure where you are or if these are available, but I'm sure there are substitutes available (though Birdie might argue.)

2262

Beware of imitations.

[Birdie]

Thank you to all of you.
The appetite we have seen.
He can't stop eating.
Sushi, meat and candy.
The strength we have not seen.

High dose prednisone boosts metabolism, skyrockets metabolism is more accurate. More food is needed just to maintain weight and energy. Doctors say not to worry about weight gain, I think because it's normal on pred, but it doesn't have to happen. It's hard to shed the extra weight so I watched it carefully and didn't gain weight. But hey, getting Wegener's under control is the primary concern right now.

[debra]

Birdie!!! I want to come live there! I admire you're food shopping skills! Ha! And I'm not even on pred! Yet! Deb. Now visualizing Klondike bars in my head......

[Aneinu]

2262

Beware of imitations.
We have a kosher diet, so we will need to search for a good imitation.

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[debra]

Birdie,nice move off setting the Klondike bars,with the fat free ice cream!!! U should have put a bag of lettuce next to the Klondikes! Birdie you're a riot.... Deb. Dreading pred,but dreaming of klondike bars.....

[annekat]

Birdie,nice move off setting the Klondike bars,with the fat free ice cream!!! U should have put a bag of lettuce next to the Klondikes! Birdie you're a riot.... Deb. Dreading pred,but dreaming of klondike bars..... Don't dread pred.... it is only unpleasant for some people, and may actually make you feel pretty good, as happens with others. I've always kind of liked pred, to a point, though I've now been on that ride too long and would like to get off.

[Aneinu]

Went for blood work today.
The doctors were very pleased, thank God.
creatinine level went down to 1.92 (after he has been drinking almost 3 liters of water daily).
Other blood counts and inflammatory markers were also pretty stable.
Starting rituximab second does now.
He has been having bloody noses at night, so an ENT will take a look.
Otherwise.....more ice cream!

Thank ya' all.

[debra]

Anne! Hi! God bless u,Anne..... You all helped me to see more clear... Getting motivated for tomorrow! Deb. Who thanks to the people here,is no longer dreading pred. Maybe just a little.....

[Aneinu]

So he's on the second dose of rtx. Within minutes after they started his face turned beet red and it became difficult for him to breathe. He felt like he was ready to pass out. We called the nurses and they stopped it. They gave oxygen and some fluid in iv. After a break, he fell asleep and they started it again. He is much calmer now.

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[debra]

Happy to read he's doing better! Best of luck to u both... God bless u both... Deb. Who worked up the guts to venture off her thread,and actually post!

[Aneinu]

Happy to read he's doing better! Best of luck to u both... God bless u both... Deb. Who worked up the guts to venture off her thread,and actually post!
And I am thankful for your guts.

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[debra]

Ha ha,me too.. getting to caught up in me! Although we have some good laughs over there! Need to laugh as this is a sucky sickness! Deb.

[Birdie]

this is a sucky sickness!

Hey, there's a quote I like: "sucky sickness"... sorta flows off the tounge and say's volumes in just two words. But still, bug hugs is a little better.

[debra]

Birdie! Man you're so funny... You're like a breath of Realy fresh air,in a Realy polluted world.... Deb. Reflecting on Birdies comments,and smiling.....

[whatthewhat]

Our daughter had a bad reaction to Rtx once; pretty scary (okay, terrifying) but since then they've gone well, and slooooooowly. BTW, if he's at Rainbow I might have connections there.

[Aneinu]

Our daughter had a bad reaction to Rtx once; pretty scary (okay, terrifying) but since then they've gone well, and slooooooowly. BTW, if he's at Rainbow I might have connections there.
Thank you so much.
The rest of the day went well.
He relaxed thru most of it, and he is now sleeping in his bed at home.
Much appreciated.

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[Birdie]

The rest of the day went well.
He relaxed thru most of it, and he is now sleeping in his bed at home.


It's all going to look much brighter in a couple more weeks, after some encouraging blood tests and reduced symptoms and no new issues.

[Aneinu]

Well, thank God, he had a better day today.
Almost at midnight last night, he put some grilled chicken in his mouth, and his stomach did not reject it.
He went to sleep late, but was up for a lot of the day so far, and feeling somewhat better.
Very sluggish, but it is expected.
Yes, would we like him to have more energy and get out more - yes, but we cannot push him, for we can see the effect a little extra exertion has on his breathing. So, we are giving him his space; his mother is feeding him well (most of the time), and he has plenty of sleep opportunities (the other kids know to leave him be).

Thanks for all the kind words and thoughts.

[debra]

Aneinu,hi! So great he's doing some what better... I hope he's drinking, enough? Just as Birdie above me said,it will all look better in a couple of weeks... Try to stay positive,and we r here.... Praying for u no matter what... Deb.

[Birdie]

he put some grilled chicken in his mouth, and his stomach did not reject it.

Just thought, pasta... I had great luck with pasta, and it fills you up and you stay full for quite a while. Hmmm, too bad I just made a roast beef sandwich, chicken and pasta sounds good... or chicken and rice... same result.

[annekat]

When I was pred-ravenous, I was eating a lot of stir-fry veggies with eggs, chicken or other protein, on top of rice..... It was easy to prepare, and I felt like it was pretty healthful, basic food, and inexpensive.... brown rice is more nutritious than white and I don't remember which I had on hand at the time. The point is that just about everything is appealing to eat when on high dose pred, so might as well take advantage of that and eat healthful stuff instead of reaching for a bag of chips or something. I also found I had less craving for sweets, and even coffee. Too much sweets would really increase my symptoms, and still does. Gotta have 'em once in awhile, though (Klondike Bars, for example).

[Aneinu]

When I was pred-ravenous, I was eating a lot of stir-fry veggies with eggs, chicken or other protein, on top of rice..... It was easy to prepare, and I felt like it was pretty healthful, basic food, and inexpensive.... brown rice is more nutritious than white and I don't remember which I had on hand at the time. The point is that just about everything is appealing to eat when on high dose pred, so might as well take advantage of that and eat healthful stuff instead of reaching for a bag of chips or something. I also found I had less craving for sweets, and even coffee. Too much sweets would really increase my symptoms, and still does. Gotta have 'em once in awhile, though (Klondike Bars, for example).

thank you.

to give you an example, tonight my wife made baked chicken legs, green beans with onions/mushrooms and couscous or farfel.
He (and I, and some of the other kids) ate nicely.

Half hour later, we both had ice cream.

About an hour later, my son and I were in the kitchen grilling two steaks, baking sweet potatos, dipping onions in flour, eggs and corn flake crumbs to make fried onion rings (he was scared to eat the fried onions as to what it would do to his stomach, but he enjoyed the thrill of making them). I was there really to keep him company, but I ate a little as well. My girls appreciated the steaks.

ummm.....what's for midnight snack?

[annekat]

Just thought, pasta... I had great luck with pasta, and it fills you up and you stay full for quite a while. Hmmm, too bad I just made a roast beef sandwich, chicken and pasta sounds good... or chicken and rice... same result. Oh, yeah, pasta, I second that. If I didn't eat it then it's because I didn't go to the store and buy all the ingredients I like. I think I probably ate some cheap macaroni and cheese that comes in those little boxes. I could go buy a giant sized tin of Stouffer's Lasagna with Meat Sauce and scarf that down in a couple of days. I just don't remember eating much pasta, but I'm not sure why.... My favorite pasta sauce is basil pesto. Basil was out of season and the prepared stuff can be a little expensive, so I guess that's why. I was hurting for cash when first sick, because I couldn't make my pottery or sell it, and had no disability check yet. Family members were loaning or giving me money to get by for about a month and a half.

[Birdie]

ummm.....what's for midnight snack?

Scrambled eggs, fried pineapple slices, hash browns and toast (russian rye bread) with strawberry jam.

[annekat]

Scrambled eggs, fried pineapple slices, hash browns and toast (russian rye bread) with strawberry jam.
I'm big on scrambled eggs and lately eat a lot of baked potatoes. Aneinu, your family cooking adventures with a pred-head in the house sound a lot more fun than cooking alone.

[Alysia]

I am so glad that he is feeling better. I guess he ate something with germs. now he is back on the pred appetite... still its important to help him to restrain his eating.. unless he is very skinny. it will also help him with a feeling that he can control at least something from what is going on in his body...
sending prayer and love.

[Aneinu]

We thank God for a wonderful week.
Besides for Sunday, Yosef was really feeling better - except for some tiredness.
Lab work came back Wednesday very positive.
Creatinine level lower; hemo better.
Looking up - again thank God.
So much sickness and suffering all around; we need to be thankful for what we have.
Wishing everyone good health, success, enjoy life and their your families, true meaningful service to God and all mankind.

Thanks for being here.

A

[debra]

Aneinu,so awesome! Realy nice to hear he's doing better... God bless u all..... Deb.

[Alysia]

We thank God for a wonderful week.
Besides for Sunday, Yosef was really feeling better - except for some tiredness.
Lab work came back Wednesday very positive.
Creatinine level lower; hemo better.
Looking up - again thank God.
So much sickness and suffering all around; we need to be thankful for what we have.
Wishing everyone good health, success, enjoy life and their your families, true meaningful service to God and all mankind.

Thanks for being here.

A

Thanks God. If I read right, aneinu in Hebrew עננו means : answer us, hear us, help us. Its a prayer to God.

[Birdie]

Besides for Sunday, Yosef was really feeling better - except for some tiredness.
Lab work came back Wednesday very positive.

In hindsight, you will look back on this period and realize it was a very fast recovery.

Ups and downs with overall upward trend.

[Aneinu]

Thanks God. If I read right, aneinu in Hebrew עננו means : answer us, hear us, help us. Its a prayer to God.
Yes it does, and that was the point.
Thank you

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[Aneinu]

Sorry on the lack of updates.
Life sometimes gets in the way.

I drove my son back to college in New Jersey yesterday; actually, he drove the first half.
Today was his first day back, and he was doing well.
It's a bit nervous for us here, but life gotta go on.
His latest set of blood work had the creatinine level going down to under one, and the blood cells looking good as well.
Does he get tired and hungry from the preds? sure, but he wants to function like a normal boy should.
He has appointments back here in two weeks and we set him up with a group in Hackensack as well.

Happy holidays to all.
Our thoughts and prayers are with you.

A

[debra]

Aneinu, hello, I haven't seen you in a while. Good for you're son! So cool... I hope you're well? Happy holidays to u as well as you're family........ Deb.

[Alysia]

Hi. Sounds awesome. I hope he will be able to get into long lasting remission. My doc and I talked about those cases that start acutely, treated aggresively (rtx, ctx) and then getting into great remmision. Much more then cases of smoldering.
"Aneinu" works. God answered.

[annekat]

I'm happy to hear he's doing so well and expect he will be back to feeling like his former self very soon! The whole family is blessed that it has gone so well.

[Aneinu]

I'm happy to hear he's doing so well and expect he will be back to feeling like his former self very soon! The whole family is blessed that it has gone so well.
Sorry for not keeping up.
Latest check ups in Cleveland were all good....thank God.
Went today to the group in Hackensack.
They suggested strongly that he takes bactrin or something like that) to prevent pneumonia.

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[debra]

Aneinu, nice seeing you...Glad things are going well... Hope you're handling things well.... Deb.

[Pete]

Sorry for not keeping up.
Latest check ups in Cleveland were all good....thank God.
Went today to the group in Hackensack.
They suggested strongly that he takes bactrin or something like that) to prevent pneumonia.

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They want him on bactrim, probably 3x a week, as prophylaxis for the type of pneumonia that killed many HIV patients before effective treatments were discovered.

[Aneinu]

Yes, three times a week.
There was a recent case of gpa where the person passed from that type of pneumonia.

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[Alysia]

Hi. I missed you around. I am glad all is well. Many of us are on bactrim. Just need to check regularlly the liver enzymes and creatinine.

[Aneinu]

Hi. I missed you around. I am glad all is well. Many of us are on bactrim. Just need to check regularlly the liver enzymes and creatinine.

Thank you.
Life business gets in the way.
So we now have two teams of doctors managing his care; not really sure how that will work.
Hackensack and University Hospitals.
They both seem to be competent.
Wondering why the initial team didn't put him on Bactrim; we will ask.
Doctor checked him out and said, "If I would not have read your report, I'd say that you're an ordinary 20 year old (with puffy cheeks)."

[Birdie]

Doctor checked him out and said, "If I would not have read your report, I'd say that you're an ordinary 20 year old (with puffy cheeks)."

Good name for a web site: butyoudontlooksick.com

[debra]

Aneinu, nice seeing you... Birdie, that should be a site for real... Clever... Debra.

[Aneinu]

Aneinu, nice seeing you... Birdie, that should be a site for real... Clever... Debra.
It actually is a site.
Check it out.

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[debra]

Oh wow, wasn't sure were I saw it, thought just the common saying here. I think maybe I did check this, a couple year's back? Thanks, Aneinu... I will look... Glad you're here! Deb...

[annekat]

I definitely checked out that site, just now, and bookmarked it. It belongs to the woman who wrote The Spoon Theory. It is entertaining and true.

[debra]

Anne! Good evening, Anne... Anne, is it a blog? I think i remember it... lazy to check. Anne how are you feeling? Deb.

[Debbie1957]

Sorry for all your son is going thru. I can relate. My son is 28 and was diagnosed in October 2015 after I found him unconscious in a pool of blood in the bathroom floor. He had had a massive hemorrhage in his right lung, was in kidney failure and heart failure. He was actually lucky to have survived. They did plasma pherersis for 5 days not to mention all the medications and him being on the ventilator. After being in icu and going to rehab he was doing really well then he relapsed after his rheumatologist started to decrease his steroids so now he is back up on a dose of 80 mg of steroids and receiving chemotherapy 2 days a month for the next 6 months. Hopefully this will put him in remission and he will do well with his new lifestyle. I wish your son a speedy recovery. Also the rheumatologist mentioned changing to a gluten free diet if possible. I have also read some post on this site about the gluten free diet being helpful here also. I know I still have a lot to learn about this disease as it is a rare one but I agree the more we know the better off we will be. Good luck.

[debra]

Deb, hi I'm Deb also. Wow! This is a lot... How are you doing with all of this? Is you're son home? Sorry, little tired but just wanted to say welcome. Although I'm sure you'd rather be somewhere else... Others will be here to say hi... Best to you both... Deb.

[Birdie]

My son is 28 and was diagnosed in October 2015

Hi Debbie,

Welcome to the group. Sounds like your son's case is a bad one. Keep on learning, and learning, and learning, since he probably can't right now he desperately needs someone to help him understand the options presented by doctors. Everyone here will be happy to help.

Not necessary, but I suggest starting a thread in the new member introductions area of the forum. It gives you a place of your own, dedicated to helping your son by getting questions answered. If interested, here's mine: http://www.wegeners-granulomatosis.com/forum/new-member-introductions/4932-wegener-s-sucks-case-someone-didn-t-already-know-3.html#post98791

Gary

[Aneinu]

Hi Debbie,

Welcome to the group. Sounds like your son's case is a bad one. Keep on learning, and learning, and learning, since he probably can't right now he desperately needs someone to help him understand the options presented by doctors. Everyone here will be happy to help.

Not necessary, but I suggest starting a thread in the new member introductions area of the forum. It gives you a place of your own, dedicated to helping your son by getting questions answered. If interested, here's mine: http://www.wegeners-granulomatosis.com/forum/new-member-introductions/4932-wegener-s-sucks-case-someone-didn-t-already-know-3.html#post98791

Gary
We hope he gets well soon.

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[debra]

Birdie, can the post be moved? Or does Debbie, have to re post? Birdie, you're awesome... Deb.

[Birdie]

Birdie, can the post be moved? Or does Debbie, have to re post? Birdie, you're awesome... Deb.

No need to remove it Deb, and Debbie.

[debra]

Birdie, sorry, I meant can it be seperated, here and on a new intro? So two places? Thanks... Deb.

[annekat]

Anne! Good evening, Anne... Anne, is it a blog? I think i remember it... lazy to check. Anne how are you feeling? Deb. yeah, I think it's pretty much a blog... worth taking a look at, some humor included.

[debra]

Anne, thanks! Ya, I did see this. Thought it was familiar... Ciao Anne! Deb.

[annekat]

Welcome, Debbie, and I agree, more people would see and respond if you start a new thread under New Member Intro. We are already in that category talking about Aneinu's son, so all you have to do is go to top of this page and click on New Member Introductions, click Post New Thread, and you'll have a window in which to tell us about yourself, your son, and his situation. No need to move anything, really, unless you want to copy and paste. We are concerned about your son and would like to hear more. It doesn't always happen that fast and dramatically, but it sounds like they pulled him out of the immediate crisis and are doing the right things. We'll wait to hear more...

[Aneinu]

"require" sinus surgery.....I don't know how to edit from here.

[Aneinu]

Well it's been a while.
Lots of new threads since I last posted.
Hope and pray that everyone is on the recovery road.

My son is turning 21 this month. After his initial dose of rituximab he was able to lower his prednisone to 5mg per day. He was getting back to himself. He did rewrite sinus surgery several weeks back, but they think that was unrelated. He was looking better, as his weight and puffiness was going away. Yes, past tense. Two weeks ago, he started once again experiencing joint pain, hands and feet. He started swelling as well. He was in pain but didn't wanna admit it. His blood work came back positive except his inflammatory markers. Throughout recovery, his b cells did not return and they couldn't do second dose of rituximab. They still did not return. When he was first diagnosed, his inflammatory markers (what is medical term for that?) was over 1000, eventually it was down to 20. Now, it is 300. They upped prednisone to 15/20. They are thinking of putting him on methotrexate, which he does not like, due to the nausea. He is not doing well emotionally. For some reason, he thought he had this beat. It is a letdown and depressing. We are trying to be encouraging, but it is difficult, especially now that he is back in school.

Two questions please (basically one):
1. Is this an indicator that b cells will be returning?
2. Is there connection between inflammatory markers and b cells?

Thank you, and let's pray for all of us.

[Aneinu]

Well it's been a while.
Lots of new threads since I last posted.
Hope and pray that everyone is on the recovery road.

My son is turning 21 this month. After his initial dose of rituximab he was able to lower his prednisone to 5mg per day. He was getting back to himself. He did rewrite sinus surgery several weeks back, but they think that was unrelated. He was looking better, as his weight and puffiness was going away. Yes, past tense. Two weeks ago, he started once again experiencing joint pain, hands and feet. He started swelling as well. He was in pain but didn't wanna admit it. His blood work came back positive except his inflammatory markers. Throughout recovery, his b cells did not return and they couldn't do second dose of rituximab. They still did not return. When he was first diagnosed, his inflammatory markers (what is medical term for that?) was over 1000, eventually it was down to 20. Now, it is 300. They upped prednisone to 15/20. They are thinking of putting him on methotrexate, which he does not like, due to the nausea. He is not doing well emotionally. For some reason, he thought he had this beat. It is a letdown and depressing. We are trying to be encouraging, but it is difficult, especially now that he is back in school.

Two questions please (basically one):
1. Is this an indicator that b cells will be returning?
2. Is there connection between inflammatory markers and b cells?

Thank you, and let's pray for all of us.
Doctor said that there can be b cells that are lurking that do not show up in the blood report. Does anyone know what that might be?
Thank you

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[Alysia]

Hi. Sorry that your son is suffering again.
When was his last rtx ? Was he on other meds since then ?
How much is his creatinine ? I dont remember if he has kidneys involvement ?
What blood tests are not normal ?
My wg dr. Said that b cells are not the indication for another rtx. Wg can be active with a result of zero. Same about C-anca and pr3. He sends me to rtx every 6 months, no matter what.
My wg dr. Says that we need to look at all the picture. Apart from joints pains, does your son have other wg symptoms ? Nose bleedings ? Gums bleedings ? Ears issues ? Coughing ? Rash ? Fatigue ? Others ? Where is the swelling ?
Sending prayers for your son and for you. I understand how tough the caretaker has it.

[Aneinu]

Hi. Sorry that your son is suffering again.
When was his last rtx ? Was he on other meds since then ?
How much is his creatinine ? I dont remember if he has kidneys involvement ?
What blood tests are not normal ?
My wg dr. Said that b cells are not the indication for another rtx. Wg can be active with a result of zero. Same about C-anca and pr3. He sends me to rtx every 6 months, no matter what.
My wg dr. Says that we need to look at all the picture. Apart from joints pains, does your son have other wg symptoms ? Nose bleedings ? Gums bleedings ? Ears issues ? Coughing ? Rash ? Fatigue ? Others ? Where is the swelling ?
Sending prayers for your son and for you. I understand how tough the caretaker has it.
Thank you for your prayers and concern.
May God be with us all.

His last rtx was in October/November. They were waiting until b cells reappeared. Now, however, they will not wait and do again in probably two weeks. They did up his prednisone to 20; started at 80 and was down to 5 for several months. He is getting rashes at extremities and joints are heavy. The inflammatory marker which is over 300 now, I think is called pr3. As of now, no renal issues, thank God. He does feel stuff in his lungs, as he recognizes symptoms from last time. Doctor said to give the dose a few days and see what happens. I will abide, but with a short leash. If it persists, he should come back home (from nj to Cleveland) to get proper care.

Thank you again

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[Aneinu]

Oh, and they did say that there is a good chance that they will add methotrexate to his diet.

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[Alysia]

Then he was not on wg meds for too long. Dont count on b cells. They can be midleading.
I am glad that he will soon get rtx. Adding mtx sounds more safe. It will be his maintenance med. Actually he was not on any, so the risk of relapse is higher.
Pr3 is the derivative of C-anca and for me as well it is a sign for wg activity.
Hang in there. It sounds like a good plan.

[Aneinu]

Then he was not on wg meds for too long. Dont count on b cells. They can be midleading.
I am glad that he will soon get rtx. Adding mtx sounds more safe. It will be his maintenance med. Actually he was not on any, so the risk of relapse is higher.
Pr3 is the derivative of C-anca and for me as well it is a sign for wg activity.
Hang in there. It sounds like a good plan.
I put a call into doctors yesterday to try to understand how weg can be active even though there are no b cells recognizable thru blood tests (there's another test thru bone marrow) and if they are there, why wait two weeks for another dose of rtx. My son really does not want the methotrexate, for it is a three year process and it knocks you out once a week.

I didn't hear back yet.

He is feeling somewhat better due to the higher dose of prednisone. He does say that he feels it considerably in his joints.

Thank you all and God bless.

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[Gab122]

Doctor said that there can be b cells that are lurking that do not show up in the blood report. Does anyone know what that might be?
Thank you

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I heard that B cells can hide in lymph nodes. But I don't know more than that.

[blm]

Everyone talks about B cells on the Forum and I'm not sure where they show up in my blood report. Can you illuminate?
Thanks!

[Aneinu]

I heard that B cells can hide in lymph nodes. But I don't know more than that.
Also in tissues.
There seems to be a debate about it.

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[Aneinu]

I had an extended conversation with the doctor in regards to his recent labwork. [This is partly from the Dr.] His labs showed baseline renal function, no electrolyte abnormalities, and normal liver function. His white blood cells, hemoglobin and platelets were all normal. His inflammatory markers were also normal. We discussed his PR3, which was 1047 when he was diagnosed and had come down to 40 with treatment was now 340 and with the rash on his hands this was concerning for potential flare. His immunodeficiency panel still showed a lack of circulating B cells. We discussed that although there may be no B cells in his blood, there may be B cells in his tissues and vessels causing vasculitis but there is no way for the doctors to know this. This is a debated topic however. They started an increased dose of steroids these medications work fast, unlike other medications including rituximab. Different methods of disease remission and maintenance were discussed including rituximab for both vs rituximab for induction and azathioprine or methotrexate for remission. Both of these algorithms are being given in their facility as well as across the country for both adults and pediatrics. Some of this has to do with training, personal choice, medication side effects, and experience but currently there is no consensus and there are studies ongoing. We also discussed Cytoxan (cyclophosphamide) as an older treatment for vasculitis but more recent studies did not show it was better than rituximab and it has higher side effects and cancer risks. I had been in email conversation with Dr Langford and the doctor let me know that she had rotated with her and other providers in the Cleveland Clinic Vasculitis institute. We discussed that depending on his upcoming labs they will decide whether to continue or increase steroids, add methotrexate or azathioprine, or redose rituximab.

[Gab122]

. We discussed his PR3, which was 1047 when he was diagnosed and had come down to 40 with treatment was now 340 and with the rash on his hands this was concerning for potential flare. His immunodeficiency panel still showed a lack of circulating B cells. We discussed that although there may be no B cells in his blood, there may be B cells in his tissues and vessels causing vasculitis but there is no way for the doctors to know this.

Was your son's ANCA TO PR3 1047 ??? My ANCA to pr3 was 1178! I was wondering if there were others out there with high ANCA over 1000. Did they explain why it was so high? I've not rec'd any answer.

I'm sorry to hear his symptoms are flaring but glad pred is helping! They put me on 60/day pred for 6 weeks. Just dropped to 40 a week ago. What dosage is he on.

God bless you too! Tough road for a mom! [emoji1374]
-Gab

[Aneinu]

Was your son's ANCA TO PR3 1047 ??? My ANCA to pr3 was 1178! I was wondering if there were others out there with high ANCA over 1000. Did they explain why it was so high? I've not rec'd any answer.

I'm sorry to hear his symptoms are flaring but glad pred is helping! They put me on 60/day pred for 6 weeks. Just dropped to 40 a week ago. What dosage is he on.

God bless you too! Tough road for a mom! [emoji1374]
-Gab
Thank you.

I believe it was high in the beginning due to the unchecked disease. He had a lot of blood in his lungs.

His pred dosage after rtx was 80, eventually lowered to 5, and now back to 20.

I'm his dad, btw.

It is tough to watch him in pain, but we pray that the doctors are the correct messengers for him and for all.

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[Gab122]

Sorry aneinu!! My mistake!
It's a rough road for dads too!!

[grneyedgrl74]

Hi, my name is Elizabeth. I'm sorry to hear about your son. My daughter is 10 and going through what we believe to possibly be GPA. She has been hospitalized twice in the last month for severe hives, rash and swelling. They diagnosed her at the time (3 wks ago) with having HSP. however, her nose was having bleeding and sore. She is having more blood and soreness and severe stuffiness. We are waiting to here back from Children's Hospital Seattle ENT as to when she will get in for a biopsy and scan. Can you please share with me what your son's symptoms were? I am praying for him and you as I already know what we will be in for if this is truly what she has.

[Aneinu]

Sorry aneinu!! My mistake!
It's a rough road for dads too!!
No problem at all.
It is certainly more difficult for my wife.

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[Aneinu]

Hi, my name is Elizabeth. I'm sorry to hear about your son. My daughter is 10 and going through what we believe to possibly be GPA. She has been hospitalized twice in the last month for severe hives, rash and swelling. They diagnosed her at the time (3 wks ago) with having HSP. however, her nose was having bleeding and sore. She is having more blood and soreness and severe stuffiness. We are waiting to here back from Children's Hospital Seattle ENT as to when she will get in for a biopsy and scan. Can you please share with me what your son's symptoms were? I am praying for him and you as I already know what we will be in for if this is truly what she has.
Thank you.
We pray for her as well.
He came in with rashes, sore limbs and joints, swelling, nose and cold symptoms.
We thank God for our pediatrician and the doctors at uh who after an initial doctor or two did not see the diagnosis, they caught on right away.

I think by the first lung x Ray or cat scan, there was more than 60% filled with blood.

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[Gab122]

Hi Elizabeth,

I don't know what HSP is but I know you must want answers because I know how desperately I did for myself. I'm really hoping your daughter has something less serious than Weg GPA.

In addition to waiting for ENT to schedule a biopsy and scan... A quicker way to find out might be to do lab work for inflammation markers like sed rate, crp and rheumatoid factor. If those are elevated Dr would order ANCA labs which are a pretty common occurance with wegener's GPA patients. You could find out these results quickly within a week and start treatment if needed.

If you already had her inflammation markers and/or ANCA tested you may want to find a rheumatology Dr instead of an ENT dr.

You could contact the vasculitisfoundation.org for info on specialists in your area.

Wishing the best for your daughter!
Gabrielle

[Lindy17]

I didn't realize it was your son that was diagnosed with gpa. I hope and pray that the treatments are successful & he is feeling better soon.
God bless you, your son and your family.

Lindy17

[Aneinu]

I didn't realize it was your son that was diagnosed with gpa. I hope and pray that the treatments are successful & he is feeling better soon.
God bless you, your son and your family.

Lindy17
Thank you so much and to you and yours as well.

He took bloodwork today.

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[Fifi]

aneinu, i'm so sorry your son has to endure this, especially just turning 21. as a parent, you only want to protect your children, and they have so much more life to live. we are all guilty of taking life and good health for granted. i only wish i could trade places with my adult daughter who has wegs. wishing and praying for your son, you/wife as parents...and for us all who are touched by this awful rare disease!

[Gab122]

How is yoseph doing?

[Aneinu]

He is doing well, thank you. He says he is feeling fine, except for the usual (if there is such a word with this disease) aches and pains that come with GPA. As his markers are still elevated, they are scheduling him for RTX a week from this Monday. As of now they will continue this manner of treatment and see where it takes us. Thank you for asking. Hope you feel well and thanks so much to this entire group.

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[Aneinu]

So, it has been a busy week (including the birth of a new granddaughter, who has her own set of health issues). Yosef received his second set of rtx last Monday (the first was close to a year ago when he was first diagnosed). He took it well. His numbers and markers (pr3 and protein in urine and others) have been elevated. Runny and weezy nose for the past several days and some itchy pimple outbreak on his knees and elbows. Usually, for allergies, he takes zuratech, but we were out and he took allegra. This morning he woke up with rashes all over his body, puffiness around eyes and swollen cheeks and neck. He took done benadryl and then we went to emergency room. They treated it as an allergic reaction and shoot him in thigh with efinem and some zuratech. The swelling and rashes are lighter now and less but he is still itchy. The rumy doctors want us to follow up.

Wishing good health to all.

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[Gab122]

Aneinu I'm so sorry to hear this about Yosef. Did the ER doctors think he had a reaction to the ritux infusion? Or did something else trigger the allergic reaction? I hope he is recovering quickly!

Congratulations on your new granddaughter! I hope and pray her health issues are quickly resolved also!!

It has been a busy eventful week for you! Wishing your family peace and healing!

[Aneinu]

Aneinu I'm so sorry to hear this about Yosef. Did the ER doctors think he had a reaction to the ritux infusion? Or did something else trigger the allergic reaction? I hope he is recovering quickly!

Congratulations on your new granddaughter! I hope and pray her health issues are quickly resolved also!!

It has been a busy eventful week for you! Wishing your family peace and healing!
Thank you.

They do not think at this time that it is a reaction to the rtx.

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[Aneinu]

As the rashes were getting worse we brought him back to er last night. They admitted him. With another shot, more benadryl and iv, it has gone down. Head rheumy thinks it must be viral as he is on 20 mg of prednisone. They will do blood work today and monitor him. They upped his steroids now as well.

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[Gab122]

If it's viral that means no methotrexate right? I know you said he doesn't want to restart that. Fingers crossed he doesn't need to!
I hope he is better and released soon. Praying for a healthy Fall/winter and 2017 for him! [emoji1374]

[Aneinu]

Thank God the rashes are really down now. They are monitoring him for the day. We will see if blood work hints at anything.

Thank you

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[Lindy17]

I'm so sorry to hear about the problems your son is having and also that your new granddaughter has health issues. I hope that both of them start feeling better soon.
My thoughts & prayers go out to them and your family.

[Aneinu]

Head rheumy does not like the way rashes look. Not releasing him today. Gonna hit him with three doses of 40 mgs of steroids and reevaluate then. She still thinks it's viral and perhaps the wegs is not letting it heal as fast as without it.

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[Gab122]

Keep us updated!

[Alysia]

Only now I read it. I am so sorry about the rash. I hope that while I write this post, Yosef is already getting better. I guess the questions are: is it a virus ? An allergy ? A reaction to rtx ? Wg symptom ? Do the blood tests show any direction ? Please update us.
Sending prayers for Yosef and for your new grandaughter. Health for both. הרבה בריאות ונחת. מזל טוב. ♡

[Aneinu]

Thank you.
They think it's viral.
They didn't do blood tests.
It is almost completely cleared up.
They will release him at 2:00 today God willing.
They will keep him on 60 mg prednisone for several days.
Hopefully, he can have second half of rtx treatment Wednesday or Thursday.
שבת שלום וחג שמח

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[Alysia]

Thanks God that it is cleared. After getting rtx, viruses can catch us weggies more easily. I also caught one right after mine a month ago. (Not rash). When I went to the second IV I washed my hands all the time.
שבת שלום וחג שמח ♡

[Aneinu]

It's strange his doctors don't wanna admit that he could have been more susceptible to virus because of weggies.

They will concede that perhaps it was harder to fight back because of it.

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[Alysia]

It's strange his doctors don't wanna admit that he could have been more susceptible to virus because of weggies.

They will concede that perhaps it was harder to fight back because of it.

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Having Wg and getting immune suppresive meds made us more susceptive to viruses and germs. He might even caught it at the same day that he got the rtx, in the hospital environment. I think I caught the virus at the clinic where they gave me the rtx. Maybe this is why they can't addmit it ? I wonder if there were more cases of this virus around.
I would also keep the other options in mind anyway.

[Aneinu]

Doctors said they have been seeing funny viruses lately (I think they always say that). As it was a week after rtx they don't think it was related.

He did have spots on knees and elbows soon afterwards, where one weggie told me from his doctor that this is a sign of active wegs.

Not sure, however, if the spots/pimples were related to big rash all over.

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[Alysia]

I guess its also a matter of the incubation period of the virus. A week sounds reasonable for rash virus. I had a stomach virus the day after rtx. crowneagle
Rash of wg is also an option. Especially if the pred helped. I will tag a friend who also got rtx and had a rash sometime after it. In his case they taught its wg. Maybe he can shed more light on this.
Btw. Worth taking pictures of the rash.

[Aneinu]

Thank you.
I will check if I have.
Now, it's away.

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[Gab122]

I have been amazingly not sick too much lately. I think the apple cider vinegar is helping keep me healthy [emoji4] it is a natural antibiotic antiviral antifungal I think [emoji848] I mix a 1-2 teaspoons in a cup of water and add a little honey. I get the kind of cider with the "mother" in it. I pass on this tip in case anyone wants to try it.

I started taking it to help with keeping my blood sugar lower while taking 60 mg prednisone and it def helps with that. It also helps with lowering blood pressure and cholesterol. So if you are on meds for BP, diabetes, cholesterol you may need to adjust meds as apple cider vinegar does impact these things. It's very good for digestion too. It has enzymes and probiotics.

http://bragg.com/products/bragg-organic-apple-cider-vinegar.html

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[Aneinu]

Latest live update.
Yosef began the second half of his second dose of rtx. They started him at a decent pace of 37 ml an hour and after half hour they increased to 74. Within minutes he pulled the nurses cord. His face was beet red, chest became tight and he had trouble breathing. They called emergency code. Nurses pulled the rtx. Doctor came in and they injected with 100 mg of hydrocortisone, monitored pulse and heart. Within a minute or two he was feeling considerably better. Benadryl obviously having effect as well as he is extremely sleepy now. Head doctor here and his head rheumy are rethinking their viral diagnosis for his extreme rash of last week and perhaps it was indeed reactionary to the rtx, although it was almost a week before. She is aborting the rtx and on a wait and see with labs further down the road to determine the future therapy.

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[Alysia]

Oh my, so scary... Thanks God they found a way to stop the reaction.. Did they give him IV of steroids before they started the rtx ?

[Aneinu]

Oh my, so scary... Thanks God they found a way to stop the reaction.. Did they give him IV of steroids before they started the rtx ?
No. Benadryl and Tylenol.
He took his 40 mg of prednisone earlier in morning.

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[MikeG-2012]

No. Benadryl and Tylenol.He took his 40 mg of prednisone earlier in morning.That is too bad, as solumedrol (IV steroids), Benadryl and Tylenol are all three part of the approved standard RTX protocol. 1000MG is the standard IV steroid protocol, but my doc gives me 120MG. He doesn't want the future problems associated with major doses of steroids.

[Alysia]

I agree with Mike. big neglect on their part. the formal protocol is to give 100 or 120 IV steroids 30min before starting rtx. you can find this protocol on every formal info page for rtx. I suspected that they didnt give him, thats why I asked. I guess that if he is back to normal they can continue but very slowly.

[Aneinu]

I will ask about the steroids.
Thank you

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[Gab122]

Aneinu how is Yosef today? Fully recovered? I'm sorry he had a bad reaction to the ritux. [emoji45]. How did his first infusion go? Any reaction then?

[Aneinu]

Thank you.
He's feeling good now, thank God.
Meanwhile, rheumy said he should go back to school.
We have some unanswered questions still.
Hopefully tomorrow.....

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[Aneinu]

Oh well, it's been a while.
He's now 21, do were in the process of switching doctors. Going from rainbow university to the clinic.
The rashes have been on and off. Allergist says maybe from Tylenol cold medication. Now, he can't really take stuff for constant cold/flus.

Last several weeks his joints have been hurting. Blood tests confirmed that inflammation is on the rise. Raised the preds to 20, maybe more. He finally switched to azathioprine from the rtx. Just yesterday. Today, he started with the nose bleeds. We will see what doctors say. Poor boy. He just wants to be a regular 21 year old. It's extremely tough.

Thank God there is medication and thank God the doctors have been responsive and helpful.

It's nice to have this forum. I really should use it more.

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[drz]

Your son might want to post here too for some support and a good outlet to express his concerns.


Oh well, it's been a while.
He's now 21, do were in the process of switching doctors. Going from rainbow university to the clinic.
The rashes have been on and off. Allergist says maybe from Tylenol cold medication. Now, he can't really take stuff for constant cold/flus.

Last several weeks his joints have been hurting. Blood tests confirmed that inflammation is on the rise. Raised the preds to 20, maybe more. He finally switched to azathioprine from the rtx. Just yesterday. Today, he started with the nose bleeds. We will see what doctors say. Poor boy. He just wants to be a regular 21 year old. It's extremely tough.

Thank God there is medication and thank God the doctors have been responsive and helpful.

It's nice to have this forum. I really should use it more.

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[Aneinu]

Thank you.
He doesn't really have access to this.

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[drz]

I think any smart phone or laptop or Ipad with internet access can get him here. Most hospitals and clinics offer wi-fi for patients too.

[Aneinu]

They admitted him to clinic today.
Doctor langford was concerned with stuff that shouldn't be in the kidney.
Subsequent checks show kidney function stable.
Doctor concerned with heart, something called egpa, churg-strauss.
They will do cat scan on lungs tonight and cardio something on heart tomorrow.
After some tests, they'd like to administer rituximab tomorrow under controlled environment.
They are giving high doses of steroids thru iv later tonight.
Dr villa-forte really explained things pretty well.

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[Pete]

Aneinu,

Your son is in the care of two of the best Vasculitis doctors in the world. I hope the treatment they prescribe leads to a near normal life for your son.

[Alysia]

Hi Aneinu, sounds not easy it all.. but thanks God that he has best docs and going to get rtx soon. Its also good that they give him much steroids - both for the wg and to prevent reactions during the rtx IV.
As for the heart, I had some fluids in my heart and the cardio dr. explained to me that sometimes the heart can react like that to an inflamation going on somewhere else in the body. High pred can help. I hope his heart issue will be nothing to worry about.
Hang in there. I know how tough it is to be the caretaker, the parent.. one wishes to be the sick one instead of his loved one... sending many prayers. Please update us.

[Aneinu]

Thank you for that. There might have been some blood showing in cat scan, but it was ground glass opacity, so they not definite. Either way, it does show active disease in lung and they know it is active in kidney. Still waiting for echocardiogram and then for decision regarding ritucimab. Thank you so much for your concern.

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[Aneinu]

*After analyzing the cat scan again, they think it might be blood, which is indicator of diffuse alvrolar hemorrhage, which is what he had last time.

They are scheduling bronchoscopy for tomorrow morning.


This will determine if blood is from the lung.


If it is, they might need to change treatment, for it might be an indicator that the rituximab did not work.



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[Alysia]

*After analyzing the cat scan again, they think it might be blood, which is indicator of diffuse alvrolar hemorrhage, which is what he had last time.

They are scheduling bronchoscopy for tomorrow morning.


This will determine if blood is from the lung.


If it is, they might need to change treatment, for it might be an indicator that the rituximab did not work.



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Praying for the best. Please update us.
If not rtx I guess it might be ctx, and I think that it works much faster. So I hope things will turn out for good eventually.

[Aneinu]

Firstly, thank you again.
The bronchoscopy was cancelled, for they see no reason to think there's an outside infection.
Except that they just walked in and said they will be doing it.
And now they reversed again.
We need to make a decision shortly.
The doctors are kinda leaning against rtx because of his aversion history and because he had a recent dose and it did not seemingly hold, and that it takes several weeks to kick in.
The alternative would be cytoxan, with it's scary side effects lurking. It would require to bring in andrology department, and that will take a fragile, beaten, broken young man over the edge.

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[Aneinu]

They will be administering the rituximab today.

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[Alysia]

My heart is going out to your son and to you... there are times in which we need to give it all to God and trust in him .... עננו ....we keep on praying. Good luck with the rtx today.

[Aneinu]

Quick update:
They started rtx very late.
About 4:00.
Increasing at half the speed of normal.
Thank God he is handling it well.
Should be finished by 2:00 am.
He was short of breath a bit in afternoon, but otherwise feeling good.
Thank you
I once again cannot say how fortunate we are to have dr langford as his doctor and Dr villa-forte as his hands on doctor.
They are so caring and patient.


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[Pete]

Glad to hear he's hanging tough and that you're feeling better about the situation.

[MikeG-2012]

I once again cannot say how fortunate we are to have dr langford as his doctor and Dr villa-forte as his hands on doctor.

You've said volumes with this sentence! If you are comfortable with the doctors, that is half the battle with this stupid disease!!

[Gab122]

The alternative would be cytoxan, with it's scary side effects lurking. It would require to bring in andrology department, and that will take a fragile, beaten, broken young man over the edge.

Sent from my SM-G920V using Tapatalk
It breaks my heart that young people are dealing with this. There are many young people in a Facebook group if he'd like to connect with them. People in their teens and twenties. His age. Maybe it would help. Many are doing well. I hope the rituxan and pred helps him soon.
God bless him!

[Aneinu]

We were very pleased with the doctors in UH as well.

The rtx was completed and he took it well thank God. The main thing they are watching now is the lung/breathing issue. Baseline is 14. He came in at 12, dropped to 11.8 and now 11.2. Pulse ox is continually in mid 90's, so that is good, although he has shortness of breath at times (which he wants to disguise, for he knows that is the key to discharge). They will probably need another CT scan on lungs for ultimate discharge. Actually, scratch that. Rheumy fellow just came in and said that they wanna see hemoglobin stable before discharge. CT scan probably only if things get worse. His breathing is good, but not perfect (whose is?). Coughing is still there. Interesting that his joints are feeling better, which we assume is result of steroids.


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[carriej22]

We were very pleased with the doctors in UH as well.

The rtx was completed and he took it well thank God. The main thing they are watching now is the lung/breathing issue. Baseline is 14. He came in at 12, dropped to 11.8 and now 11.2. Pulse ox is continually in mid 90's, so that is good, although he has shortness of breath at times (which he wants to disguise, for he knows that is the key to discharge). They will probably need another CT scan on lungs for ultimate discharge. Actually, scratch that. Rheumy fellow just came in and said that they wanna see hemoglobin stable before discharge. CT scan probably only if things get worse. His breathing is good, but not perfect (whose is?). Coughing is still there. Interesting that his joints are feeling better, which we assume is result of steroids.


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Sounds all so similar. I just wanted to come here to wish you guys well and that this can be beat. I am 27 now, was diagnosed at 22. First two years were rough. After my final round of Rituxan it took me about a year to get my breathing and coughing under control. I run up 3 flights of stairs now about 15 times a day. Doesn't wind me in the slightest. I still cough more than the average person. However I do very well, work full time... no complaints. He's got this!

[Aneinu]

Sounds all so similar. I just wanted to come here to wish you guys well and that this can be beat. I am 27 now, was diagnosed at 22. First two years were rough. After my final round of Rituxan it took me about a year to get my breathing and coughing under control. I run up 3 flights of stairs now about 15 times a day. Doesn't wind me in the slightest. I still cough more than the average person. However I do very well, work full time... no complaints. He's got this!
Thank you for that encouragement.
Do you take steroids still?
Azathioprine?
Stay strong.

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[Gab122]

Sounds all so similar. I just wanted to come here to wish you guys well and that this can be beat. I am 27 now, was diagnosed at 22. First two years were rough. After my final round of Rituxan it took me about a year to get my breathing and coughing under control. I run up 3 flights of stairs now about 15 times a day. Doesn't wind me in the slightest. I still cough more than the average person. However I do very well, work full time... no complaints. He's got this!

that is so good to hear carriej22 !
Thanjs for sharing!! Something to hope for!

[Gab122]

We were very pleased with the doctors in UH as well.

The rtx was completed and he took it well thank God. The main thing they are watching now is the lung/breathing issue. Baseline is 14. He came in at 12, dropped to 11.8 and now 11.2. Pulse ox is continually in mid 90's, so that is good, although he has shortness of breath at times (which he wants to disguise, for he knows that is the key to discharge). They will probably need another CT scan on lungs for ultimate discharge. Actually, scratch that. Rheumy fellow just came in and said that they wanna see hemoglobin stable before discharge. CT scan probably only if things get worse. His breathing is good, but not perfect (whose is?). Coughing is still there. Interesting that his joints are feeling better, which we assume is result of steroids.


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I'm hoping he is discharged by now and home doing well! Keep us posted Aneinu !

[Aneinu]

Thank you all.

He was discharged last Saturday night. Hemoglobin on the rise and feeling well. Scheduled for the second half of the rtx dose this Tuesday.

The only concern is that he had this itching since Friday. Last time a week later he developed rashes all over. This time, only itching. He doesn't wanna take benadryl, for he thinks that will mask the allergic reaction, if there is one.

We shall see.

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[me2]

Sounding good. If benadryl only masked allergic reaction I don't think they would be giving it during an infusion. I think it is treatment of allergic reaction.

[Aneinu]

Another reaction to the rtx.
Admitted to icu.

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[Aneinu]

He had another reaction in middle of rtx infusion. Extreme tightness in chest. Eyes, lips, nose and cheeks swelling. Rashes many places. Administered strong stuff (benadryl, epinephrine, steroids) and all back to normal after an hour or so. In icu overnight. Sleeping comfortably.

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[me2]

Glad he is feeling better. I don't know if this article would help but it would be something you could ask your doc about. I went through desensitization for sulpha drugs many years ago and it was successful for me. In fact the success rate is very high for sulpha. I don't know what it is for Rituxan.
https://www.hindawi.com/journals/crii/2015/524507/

[drz]

Glad he is feeling better. I don't know if this article would help but it would be something you could ask your doc about. I went through desensitization for sulpha drugs many years ago and it was successful for me. In fact the success rate is very high for sulpha. I don't know what it is for Rituxan.
https://www.hindawi.com/journals/crii/2015/524507/

I tried it for sulfa and they quit on the second day saying it seemed too dangerous for me to proceed further.

[Aneinu]

Thank you.
That is very informative (although I must say, very much not understood by me, although I think I understood the basic concept)

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[me2]

I see one of the citations in the article has even more information - and from closer to home. http://www.tandfonline.com/doi/full/10.1586/eci.11.75

[Alysia]

I hope your son is doing much better and that you were able to catch some rest too.

Was that IV the last one ?

Sending prayers. Please update us.

[Aneinu]

I hope your son is doing much better and that you were able to catch some rest too.

Was that IV the last one ?

Sending prayers. Please update us.
Thanks for the prayers.
I'm not sure what you mean by the last one.
Twas the second half of the fourteen days.

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[Alysia]

In each round of rtx some of us are getting it in 4 infusions. Some in 2 infusions. What I asked is if he finished this round and doesnt need more rtx infusions ? Until at least 6 months away from now ?

[Aneinu]

Well, it was the second of two. But less than 50% done. Rtx is probably no longer an option.

Thanks for asking.

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[MikeG-2012]

Well, it was the second of two. But less than 50% done. Rtx is probably no longer an option.

Do you know how much solumedrol they were giving him for the infusions?

[Aneinu]

Does 100/125 make sense?

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[MikeG-2012]

Does 100/125 make sense?

Yes, the real protocol, that many doctors don't use anymore, is 1000mg. Reduces inflammation a major amount.

[Aneinu]

Yes, the real protocol, that many doctors don't use anymore, is 1000mg. Reduces inflammation a major amount.
Wow.
In our upcoming visit, I will ask.
Thank you.

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[Alysia]

I am sorry rtx is no longer an option. I hope that what he did get will help him and that they will give him another med without more events. Please update us. Keeping him and you in my prayers.

[Aneinu]

Looks like another flare up. Chest, skin and joints. Last one was last summer. Dr said to head to er this evening. This time, besides everything else, we have issues with the clinic accepting private group insurance.

Things will be well. God has a plan.

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[Alysia]

Looks like another flare up. Chest, skin and joints. Last one was last summer. Dr said to head to er this evening. This time, besides everything else, we have issues with the clinic accepting private group insurance.

Things will be well. God has a plan.

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So sorry... sending you prayers (psalm 121). Please update us.

[Aneinu]

So sorry... sending you prayers (psalm 121). Please update us.His chest went from "so-so" to hurting pretty bad in a few hours. Heading to er.

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[Alysia]

His chest went from "so-so" to hurting pretty bad in a few hours. Heading to er.

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Sending you more prayers (psalm 20).

When you are able, please update us.

[Aneinu]

Thank you. Stable thru the night. Ask labs look very good. Haemoglobin, which was at 15 last month, is now at 13. Still a good number, but a decrease nonetheless. They will start steroids shortly. Thank you
Sending you more prayers (psalm 20).

When you are able, please update us.

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[Aneinu]

Ok. So 1000 mgs of preds in the system. Question is regarding the follow up.

Son is refusing to take more than 20 mgs of preds daily. Also refusing cytoxin.

What's left? She doesn't wanna use rituximab, as he experienced bad reaction twice to the second dose. She will talk to the allergists.

Option that cellcept (mycophenolate) can be used as an inducer, although the experience is as a maintenance drug.

All thoughts, comments, suggestions are, like always, welcome.

Thank you

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[Masha]

As a mom I hear you. As a patient I hear your son too. The medicine is exhausting and depressing. Wish I could offer you some great solution. For now I am sending you and your son prayers and positive thoughts.
Masha

[Alysia]

If the flare is not too bad there is a possibility that cellcept will be enough, although not as strong as ctx or rtx.

Why does your son refuse to take ctx ? (I can understand why he refuses the higher pred...) I was never on it, but know that others took it, by IV or pill and it was not too bad.

Maybe the allergists will have an idea how to prevent reactions for rtx ? Maybe in much slower pace and while being on high steroids ? I read about weggies getting rtx very slowly, even for 12-15 hours.

I read somewhere about a weggie who was given other biological treatment. Not sure which one, remicaid or humira. There was a thought to switch my treatment from rtx to one of those 2, when my colitis was too bad, but it remained a thought only. My wg dr. said it can work but not as good as rtx.

Sending you more prayers (psalm 91).

[Aneinu]

If the flare is not too bad there is a possibility that cellcept will be enough, although not as strong as ctx or rtx.

Why does your son refuse to take ctx ? (I can understand why he refuses the higher pred...) I was never on it, but know that others took it, by IV or pill and it was not too bad.

Maybe the allergists will have an idea how to prevent reactions for rtx ? Maybe in much slower pace and while being on high steroids ? I read about weggies getting rtx very slowly, even for 12-15 hours.

I read somewhere about a weggie who was given other biological treatment. Not sure which one, remicaid or humira. There was a thought to switch my treatment from rtx to one of those 2, when my colitis was too bad, but it remained a thought only. My wg dr. said it can work but not as good as rtx.

Sending you more prayers (psalm 91).Thank you so much. I will ask Dr langford today. He doesn't want the citoxin because of the sterility side affect. The bad rtx reaction was always on the second dose (of the 14 days). He downplays everything, and doesn't regard it as much of a concern.

I will bring up your other options today, and I will discuss the slow pace administering of the rtx. I thought that in both instances, they sped it up after the first several hours.

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[Aneinu]

New question:

In the past three years, he has been taking blood and urine tests once a week, once a month, etc., and the doctor has been analyzing every one. He has had three flare ups in the last 20 months.

Why was there not one indicator in the tests that something was amiss? Does the flare occur so fast? Under a microscope, there was always minimal blood in the urine, but never increased.

I think it's an interesting question.

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[Alysia]

Few points:

According to the protocol of how to give rtx, the second infusion is given in much faster rate. If the first one takes about 7 hours for me, the second is around 5-6 hours. So maybe indeed a slower rate at both infusions might be without events for Yosef.

Flares do not allways show up in the bloods or urine tests. Only in 2 of my flares my blood tests showed it. In others and also while smoldering, my labs were not too bad, except from Pr3 which get elavated before a flare. But some weggies are anca negative so this might not give an indication. My wg dr. says to look at the symptoms first of all. We need to listen to the body and be on guard.

Yosef is so young, so on the one hand it is good for him that he is not taking the WG too seriously. On the other hand, too much denial can cause him not to pay enough attention in the right time to changes in his body, and to neglect serious treatment. Maybe some counseling can help him to find the right balance ?

Praying for wisdom and strength.

[Aneinu]

Thank you. The second one is always done very slow, but still there was a severe reaction.
Few points:

According to the protocol of how to give rtx, the second infusion is given in much faster rate. If the first one takes about 7 hours for me, the second is around 5-6 hours. So maybe indeed a slower rate at both infusions might be without events for Yosef.

Flares do not allways show up in the bloods or urine tests. Only in 2 of my flares my blood tests showed it. In others and also while smoldering, my labs were not too bad, except from Pr3 which get elavated before a flare. But some weggies are anca negative so this might not give an indication. My wg dr. says to look at the symptoms first of all. We need to listen to the body and be on guard.

Yosef is so young, so on the one hand it is good for him that he is not taking the WG too seriously. On the other hand, too much denial can cause him not to pay enough attention in the right time to changes in his body, and to neglect serious treatment. Maybe some counseling can help him to find the right balance ?

Praying for wisdom and strength.

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[Aneinu]

The plan, as of now, is to use mmf cellcept for induction and maintenance, together with a healthy dose of preds (starting with 60 and taper to 10).

God-willing, this should be an answer.

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[Pete]

The plan, as of now, is to use mmf cellcept for induction and maintenance, together with a healthy dose of preds (starting with 60 and taper to 10).

God-willing, this should be an answer.

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Your son will soon be very hungry. When I was on that dosage initially, I regained the 25 lbs I lost at disease onset plus 20 more. The last 10 have proven to be very stubborn...

I hope he understands all the possible side effects of prednisone and experiences none. (You might want to get him a copy of "Coping With Prednisone" by Zukerman and Ingelfinger. I found it quite helpful.) I imagine Dr Langford would advocate a slower taper on the pred as he's still in the early stages of the disease and wants to keep the inflammation at bay.

Hope things improve quickly!!

[Aneinu]

Your son will soon be very hungry. When I was on that dosage initially, I regained the 25 lbs I lost at disease onset plus 20 more. The last 10 have proven to be very stubborn...

I hope he understands all the possible side effects of prednisone and experiences none. (You might want to get him a copy of "Coping With Prednisone" by Zukerman and Ingelfinger. I found it quite helpful.) I imagine Dr Langford would advocate a slower taper on the pred as he's still in the early stages of the disease and wants to keep the inflammation at bay.

Hope things improve quickly!!Thank you so much.

For the record, he's completing his third year of wegs, so he's very familiar with the preds and it's side affects; that's why he was advocating to start at 20 (not 60).

Are you familiar at all with cellcept?

Thank you.

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[Pete]

I had forgotten that your son is three years in (another senior moment for the septuagenarian).

I’m not at all familiar with cellcept. I took cytoxan for about 16 months after dx (sterility wasn’t a concern for me) and had a brief, unpleasant experience with immuran (I don’t think my doc did the enzyme test before he prescribed it.) I was as sick as I’ve ever been with a major wegs flare and pneumonia. I took methotrexate (15-25 mg/wk) for about two years. I started rituximab in late 2013 and have continued to tolerate it well. I got off mtx in 2015.

[Alysia]

The plan, as of now, is to use mmf cellcept for induction and maintenance, together with a healthy dose of preds (starting with 60 and taper to 10).

God-willing, this should be an answer.

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Sounds like a good plan, considering his reactions.
I was never on cellcept but I know many weggies are.
I was on 60mg pred for 5 months at the onset of my WG in 2008. The docs here were totally ignorant about WG and they thought that pred alone is enough. Pred alone did clear my lungs back then, although didn't help my nose. Like Pete, I am on rtx since 2013, after I couldn't bear Imuran and mtx didn't work for me.
For 2 years I also got bactrim which was helpful at that time.

Sending you more prayers. Shabat Shalom !

[Aneinu]

Hi, how are you all?
Since my son got married and moved out, I haven't frequented this site much (there should be a law against that).
He has been doing well, thank God, but his sinuses keep acting up.
It has never been clarified if the sinuses were related to the Weg's.
Currently, he's on cellcept, on a study for avacopan with 10/15 mgs of prendisone.
His disease usually affects him in the lungs, kidneys, sinus/colds, joints and skin rashes.

Lately, this past week, he has been having headaches. Motrin/tylenol not accomplishing much.
Dr.'s put him on antibiotics for a possible sinus infection.

Do you think the headaches are another symptom?
Does Weg's manifest itself in different ways during a flare up?

Thank you so much and wishing all well.

[Dirty Don]

Another WG flare doesn't mean the symptoms will be the same. I had first flare with lungs and sinuses being the main targets...my 2nd flare attacked joints in legs & feet. Go figure! Headaches may be anything...perhaps a 'warning' that WGs is acting up? Best to you both.

[seied]

I think that prednisone and motrin (ibuprofen) don't mix, take tylenol instead.

https://www.drugs.com/drug-interactions/motrin-with-prednisone-1310-780-1936-0.html

[Alysia]

Hi, how are you all?
Since my son got married and moved out, I haven't frequented this site much (there should be a law against that).
He has been doing well, thank God, but his sinuses keep acting up.
It has never been clarified if the sinuses were related to the Weg's.
Currently, he's on cellcept, on a study for avacopan with 10/15 mgs of prendisone.
His disease usually affects him in the lungs, kidneys, sinus/colds, joints and skin rashes.

Lately, this past week, he has been having headaches. Motrin/tylenol not accomplishing much.
Dr.'s put him on antibiotics for a possible sinus infection.

Do you think the headaches are another symptom?
Does Weg's manifest itself in different ways during a flare up?

Thank you so much and wishing all well.

Hi, Nice to see you around, although we can guess that when you are not, it might mean that Yosef is doing good, which is great.

Congratulations for his wedding and many blessings.

Each flare indeed might look totally different and include other organs. My wg moving as it wish between lungs, nose, ears, joints, eyes, colon and skin (bleedings under the nails).

I think we can say that when one has sinus issues, it is WG when the nose's productions are bloody. Mine includes streams of blood from the nose. Also big crustings which might be colorful but comes with blood (fresh or dry). Sorry for the gross description, but it helps to know how wg looks like when it attackes the sinuses/ nose. It also included nose pains and headaches. Sometimes all the face is aching.

Sinus infection which is not wg related will not be bloody or will have only tiny traces of blood if any, as a result of blowing the nose or so. The productions might be without color, green or yellow. It will react well to antibiotics IF one gets the right antibiotic.

Usually if its WG it will attack not only the sinuses although it might stay only there.

Headaches can be the result of the sinuses infection.

I also have crazy headaches if I try to reduce my pred even in a tiny bit.

Also worth checking his eyes. My younger son complained about headaches and he just needed glasses and the headaches were gone.

If his headaches will continue please consult with his wg dr.

Sending you prayers. Shabat shalom.

[Aneinu]

I think that prednisone and motrin (ibuprofen) don't mix, take tylenol instead.

https://www.drugs.com/drug-interactions/motrin-with-prednisone-1310-780-1936-0.htmlThank you. My mistake. He did tell me Tylenol.

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[Aneinu]

Hi, Nice to see you around, although we can guess that when you are not, it might mean that Yosef is doing good, which is great.

Congratulations for his wedding and many blessings.

Each flare indeed might look totally different and include other organs. My wg moving as it wish between lungs, nose, ears, joints, eyes, colon and skin (bleedings under the nails).

I think we can say that when one has sinus issues, it is WG when the nose's productions are bloody. Mine includes streams of blood from the nose. Also big crustings which might be colorful but comes with blood (fresh or dry). Sorry for the gross description, but it helps to know how wg looks like when it attackes the sinuses/ nose. It also included nose pains and headaches. Sometimes all the face is aching.

Sinus infection which is not wg related will not be bloody or will have only tiny traces of blood if any, as a result of blowing the nose or so. The productions might be without color, green or yellow. It will react well to antibiotics IF one gets the right antibiotic.

Usually if its WG it will attack not only the sinuses although it might stay only there.

Headaches can be the result of the sinuses infection.

I also have crazy headaches if I try to reduce my pred even in a tiny bit.

Also worth checking his eyes. My younger son complained about headaches and he just needed glasses and the headaches were gone.

If his headaches will continue please consult with his wg dr.

Sending you prayers. Shabat shalom.Thank you Alysia, your words are always beneficial.

The doctors thought it was sinus related, as his markers were good and there was no blood or crusting from the nose.

It's July 4th weekend here, so it is not the easiest making contact today.

Thank you again,

Shabbat Shalom!

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[me2]

Sinus trouble is the most consistent and persistent of WG problems. It can be present even when WG is mostly quiet. Also, with some sinus damage a person becomes more prone to sinus infection. For me , it has been a lifelong battle to deal with sinus problems. For me, sinus trouble seems to be most often a combination of WG and infection. So , just treating one cause doesn't yield great results. Add to that the fact that even at my best I have always had SOME degree of sinus trouble. It becomes difficult to to know what I just need to live with and what to seek treatment for.
A gift of a never ending puzzle.
I think the most important thing for someone with WG is to take very good care of sinuses. Wash twice a day with salt/soda and add Alkalol during times of extra trouble. The Alkalol is soothing, anti mucus and mildly antibiotic - helpful no matter the root of the trouble .
The frequent washing will discourage infection from settling in. Staph infection is common in the sinus of WG patients and Staph has been proven to cause relapse. This is in fact why WG patients are put on Bactrim.
Treat the sinus with extra care. It is more important than it seems.

[annekat]

Nice to hear from you, Aneinu, and that things are going pretty well for your son. I can't add to what others have said about symptoms of flares. They are right. Big congratulations on your son's marriage and I hope things continue to go well.

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[Aneinu]

The Philadelphia doctors are concerned about his headaches. However, they do not want to give ibuprofen or strong pain medication, for they are detrimental to the kidneys. If headaches persist, they wanna see him on Monday. He did not sound too good on the phone.

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[annekat]

I'm sorry you had to repeat about your son's headaches, as I didn't show adequate sympathy for that. It must be disheartening to have him not sounding very good on the phone. Headaches are troubling when you don't know the cause. I have taken Ibuprofen in the past for various pains, and my kidney numbers were always OK. But last year I got very anemic and needed a blood transfusion, and the docs figured my ibuprofen use had caused some serious bleeding in my GI tract. Since then, I have only taken Tylenol, except for meds for nerve pain, and the anemia and blood in the stool have not returned. Unfortunately, Tylenol isn't very effective, for me, against serious pain. So I hope your son's doctors can figure out the cause, and soon! There may be meds he can take, for a specific type of pain, that won't affect his kidneys. Better yet, some other type of therapy could be available, once they know the cause. Best of luck to you both.

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[annekat]

PS the advice from me2 about diligent nasal/sinus rinsing was good, and also his mention of Alkalol. I have used it, it is all herbal and natural substances, and it can be therapeutic and soothing, though in my case it needed to be diluted because it was too strong right out of the bottle. I ended up using a medicine dropper to add it, by experimentation, to my sinus rinsing solution. Also at some drug stores I had to order it to be picked up at the pharmacy. I had actually forgotten about it.

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[Aneinu]

PS the advice from me2 about diligent nasal/sinus rinsing was good, and also his mention of Alkalol. I have used it, it is all herbal and natural substances, and it can be therapeutic and soothing, though in my case it needed to be diluted because it was too strong right out of the bottle. I ended up using a medicine dropper to add it, by experimentation, to my sinus rinsing solution. Also at some drug stores I had to order it to be picked up at the pharmacy. I had actually forgotten about it.

Sent from my MotoE2(4G-LTE) using TapatalkNo worries at all about the sympathy. Thank you. I love the good advice. He's still having headaches and night sweats although last night thank God he downgraded the aches to medium pain. He probably will be going for head imaging tomorrow. I'll keep you posted. Thank you

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[Alysia]

No worries at all about the sympathy. Thank you. I love the good advice. He's still having headaches and night sweats although last night thank God he downgraded the aches to medium pain. He probably will be going for head imaging tomorrow. I'll keep you posted. Thank you

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So sorry about his headaches and night sweats. I am glad they are going to check his head.
Night sweats can be an indication to wg activity. But can also be related to some virus or infection. How are his labs ?

[Aneinu]

So sorry about his headaches and night sweats. I am glad they are going to check his head.
Night sweats can be an indication to wg activity. But can also be related to some virus or infection. How are his labs ?Thank you. I believe labs are ok. I did not hear differently.

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[annekat]

I had both headaches and night sweats at the beginning of when WG escalated and I was getting diagnosed. Both of those disappeared quickly with aggressive treatment with Cytoxan and prednisone. Lung, sinus, and ear issues took longer to resolve. With a couple of moderate flares, the night sweats came back, but not the headaches. Everyone is different, but I agree with Alysia that this could be a flare.

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[annekat]

Sometimes labs take some time to catch up with symptoms, but in my case, with flares, the increased inflammation showed up in labs pretty quickly. Everyone is different.

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[Jaha]

I'm hoping that your son gets some answers for his headaches and night sweats, soon.

[Jaha]

I'm wishing your son all the best for relief and discovering what is the cause.

[Aneinu]

Good morning, thank you all. His headaches are a bit better, but night sweats still there. He received results from labs yesterday. White blood cells high at 11, but that is his usual. Glucose high at 103. Sedimentation rate high at 34 and crp high at 4.8. We're finding out if these results indicate a flare, and to what extent.

Thank you again

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[Alysia]

Good morning, thank you all. His headaches are a bit better, but night sweats still there. He received results from labs yesterday. White blood cells high at 11, but that is his usual. Glucose high at 103. Sedimentation rate high at 34 and crp high at 4.8. We're finding out if these results indicate a flare, and to what extent.

Thank you again

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Any updates yet ?

Did they check his C-anca and Pr3 ? Is he anca positive ? For me one of the first signs of a flare is when pr3 becomes above the norm.

Sending prayers.

שבת שלום

[sshiveley]

I too am recently diagnosed, this has been a very trying 2 1/2 months, still learning about this disease, treatments, remission, flare ups etc. I know that this is very frustrating for me but will continue a positive attitude and pray for the best. Sherry

[annekat]

Hi, Sherry. We all remember the stress of the first stages of having WG/GPA. Many are still feeling the symptoms and side effects of the meds, years later. But most will see a significant change for a better quality of life within the first year. So take it one day at a time and you will reach that point. I would suggest that you start a new introductory post under the right category as seen on the forum's Lobby page, where things are laid out in an organized way. If you put something in the title about being a new member with a new diagnosis, you will likely get more attention and responses than by posting in an old and unrelated topic. Glad to have you as a member, and hope to hear more about how things are going, what meds you are taking, etc.

Anne

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[Aneinu]

Well, sadly, once again a full-blown flare up. He has bleeding in his lungs and kidneys acting up again. Ankles swelling as well. He will get high level preds thru infusion. They were on schedule to travel to us this evening, but God obviously has other plans.

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[Aneinu]

Well, sadly, once again a full-blown flare up. He has bleeding in his lungs and kidneys acting up again. Ankles swelling as well. He will get high level preds thru infusion. They were on schedule to travel to us this evening, but God obviously has other plans.

Sent from my moto z4 using TapatalkHemoglobin is trending downward so they will be admitting him.

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[Alysia]

Hemoglobin is trending downward so they will be admitting him.

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So sorry Yosef has a big flare again. I hope that being addmitted, he can get the best care possible. Must be hard to stay in the hospital those days, while we have our holidays.

What is the treatment plan in case of a flare except from pred ? I pray for Yosef and all of you. Please update us.

[Aneinu]

So sorry Yosef has a big flare again. I hope that being addmitted, he can get the best care possible. Must be hard to stay in the hospital those days, while we have our holidays.

What is the treatment plan in case of a flare except from pred ? I pray for Yosef and all of you. Please update us.Thank you.

Yosef was discharged on Sunday after three iv-infused heavy doses of steroids. While he is still coughing up some blood (which is an indicator of bleeding in the lungs), he says he is feeling somewhat better. He has scheduled appointments today and tomorrow in Philly.

They are thinking of doubling the dose of the Avacopan. There is also something called iv-ig which they are exploring. I'm not sure what that is. Additionally, there has been an advancement in riruximab, which may be an option for him. Dr Merkel is researching that as well.

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[Alysia]

Thanks for the update. Sounds like Yosef is in good hands.

I know few weggies who get Ivig treatment.
Read here for some explanation
https://www.webmd.com/a-to-z-guides/immunoglobulin-therapy

My wg dr. Told me that in some cases Ivig in itself is the treatment for WG, and is used not only in order to help the immune system fight infections.

I know a weggie who had a reaction to rtx so Ivig is her wg treatment. I know a weggie that no treatment helped her only Ivig and she is now in remission. I know a child who gets this treatment every couple of weeks. Side effect might be headaches but most don't have it if my "sample" of friends is enough to count on.

So it looks promising. We pray.