Father of a new Weggie freaking out.

[Sitolini]

Hi my son, young adult, was dx with Wegs in Feb. this year. Things moved really fast for him, the disease symptoms star middle of January and he was dx in the end of Feb, with involvement of kidneys, lungs and upper respiratory tract very characteristic of the disease. After his kidneys bx to confirm the disease he was given a very high dose of Prednisone and went for 4 sections of Rituxim. After that the dose for Prednisone was reduced, a Sulfa base drug was add, and live was good again with all the symptoms going away .... Until rashes start showing in his body. Initially was thought to be reaction from the sulfa drug which the Dr stop but did not resolve the problem, so now because he is only on Prednisone the Dr is thinking that could either be the preservative on it which we already change the manufacture or the Rituxim. The rashes are still there .. So must likely it is reaction from Rituxim, and if that is confirmed and in the future the disease flare again he will not be able to take it, I know there is another drug that he can take but I heard it is very hard on the body. My question is there anybody there that had had reaction to either Prednisone or Rituxim?

[Dirty Don]

Welcome Sitolini, sorry to hear your son has this wonderful disease...I wish you both the best. Everyone reacts slightly differently to these drugs. My pred reaction, aside from obvious manic behaviors, was a rash, although more acne-like than a true rash. If the rash is more of a purpura-like rash, more purplish red - larger rash spots - won't bleed or break easily, then I would suggest a possible flare...maybe a pred reduction has been too fast. Some can reduce quickly, others can't. Always ask questions of the docs, don't take their word for it, they are YOUR employees! Also, hope these docs are WG experienced or are consulting with those who are...WG is nothing to be guessing at...seriously. Best to you both.

[Sitolini]

Thanks for your reply Don. We don't think is a flare first because he finish his treatment just 8 week ago, second because this was not the way his disease manifest. The rash is mainly on his trunk little red dots all over with as few in his limbs, it really looks like a medication reaction the question is which medication. He is seen by a nephrologist and a reumathologist both belonging to a large group of the doctors here in California.

[annekat]

Welcome, Sitolini, and I'm sorry for your reason for being here. It sounds like the doctors are doing what they should.... as for the rash, we do get rashes from the disease itself, everything from small red dots that come and go to more extreme purplish rashes, and the limbs are common places to get them. You could be right about it being a reaction to a med, and that is something I can't speculate on. But Wegs symptoms come and go and different ones can appear later after the initial manifestation of the disease. I get very little of these rashes, but just occasionally on my forearms, very slight, when I am not doing as well, am run down and perhaps fighting off a small flare, or when I have reduced my meds possibly too fast. I imagine the docs can figure this out, given a bit more time. Good luck, and I hope others can be more helpful in their answers.

[Sitolini]

It seems a very complex disease, I am very fresh on it, so a lot of questions. He start with 60 mg of Predinosone and every week he reduce by 10mg until he got two 20 mg. He has being in 20 mg now for about 4 to 5 weeks, the Drs were talking about to go down to 10 mg last week, but then he got a bad case of impetigo (school blisters) that scare a hell of us, his both arms feet groin area and butt. He was treat and in 10 day most off it was gone, but this little red dots did not when away so the dermatologist is saying it is reaction of medication. He had labs done last week, the urine has little or no protein and the same for blood. I believe he also did another ANCA test which take a week to get the results. He energy is way better so that he was going to the gym until before the Impetigo. He also had Reynolds syndrome when he was first dx now no more, so seems like he is doing good except for this rash. Now looking at the begging of this note is this dose of prednisone seems right? I understand every one is different, but I have no idea what is a high or low dose of Prednisone, I thought 10 mg was low but i read that people are taking even 1 mg.

[Alysia]

Hi sitolini,
welcome. Im sorry to hear about your boy.
the rash can be from WG, or something he "got" in school since his immune system is weak now. I didnt have rash from meds.
I got RTX at the same time as your boy did. my WG doc told me that most of the improvement is coming between 2 months to 4 months after the IV. so it is possible that he is still having WG symptoms.
pred and RTX is not enough. Im on MTX.
good luck. I believe he will soon feel better.

[woz]

Hi my son, young adult, was dx with Wegs in Feb. this year. Things moved really fast for him, the disease symptoms star middle of January and he was dx in the end of Feb, with involvement of kidneys, lungs and upper respiratory tract very characteristic of the disease. After his kidneys bx to confirm the disease he was given a very high dose of Prednisone and went for 4 sections of Rituxim. After that the dose for Prednisone was reduced, a Sulfa base drug was add, and live was good again with all the symptoms going away .... Until rashes start showing in his body. Initially was thought to be reaction from the sulfa drug which the Dr stop but did not resolve the problem, so now because he is only on Prednisone the Dr is thinking that could either be the preservative on it which we already change the manufacture or the Rituxim. The rashes are still there .. So must likely it is reaction from Rituxim, and if that is confirmed and in the future the disease flare again he will not be able to take it, I know there is another drug that he can take but I heard it is very hard on the body. My question is there anybody there that had had reaction to either Prednisone or Rituxim?

I have only just been Diagnosed myself (April 2013), 12 days after I started my cocktail of medication, a rash came out on my chest and tops of my arms, and top half of my back. They were red, a few had a pimple like center, a Biopsy was done, and they told me that it was a type of fungus. The rash itself, wasn't itchy or sore, and hasn't changed in 6 weeks. The dermatologist told me to keep a eye on them, and if it got worse, to come in immediately, and he would give me more drugs.

Hope this might help.

[marta]

Hey Dad (Sitolini),

I think your job on the sidelines is tougher than being centre field. I'm sorry you have to go through this ride none of us like having our loved ones go through.

I don't know anything more than my own personal experience and I didn't get anything from your first post but when I got to the post where you mention how fast he's coming off his pred and where they want him to be right now, the red flags are waving mightier than a May 1st Parade in Communist Russia. My gut feeling is that they are trying to take him off the pred way too fast. If he was diagnosed in February and started at 60 I think it's insane to expect him to be at 10 mg now and showing no signs of Wegener's. That's just insane sounding to me. I don't care how much RTX they stuffed him with, the pred still needs to take care of the inflamation that the disease has triggered. Yes, it's not advancing because of the RTX, but you still need the pred. That's how I've understood it. When you get in the lower doses of pred and your adrenals are not yet functioning and your drops are too huge, not only does it become painful, but your risk a major flare. It's happened on this forum before. The low doses are the trickiest.

So my gut reaction is that you should question the doctor in the pred wean pace. I just made my third year anniversary of being a Weggie, and I haven't been off pred yet. I'm at 2mg right now (also started at 60mg with a few days of 1500mg each in the middle there when I flared). My doc is conservative and I had a flare that was very difficult to beat down (but that was a problem because my doc at the time was too arrogant to ask for advice and did a number on me with lack of proper attention, I've been recovering from him for over two years - I dumped his butt after that experience and now have an awesome doc) which is why I'm a little behind but I'm not upset as I'm getting stronger all the time, not like Pete or Cindy mind you but it's a positive direction instead of a negative one.

Best of luck with your fight and one thing being this close to this disease makes you, is an awesome gentle demander within the medical system.

All the very best to you, your son, and your family.

[annekat]

Sitolini,

60mg. pred is a usual amount to start with, along with a immunosuppressant such as RTX, at the beginning of Wegs treatment. But I agree with Marta that your son's docs are lowering the pred way too fast, before it has even had a chance to get the inflammation under control. I think it would be more usual to drop it by 10mg. a month, though schedules may vary, and then your adrenals will shut down with that long term usage, and by the time you get to 20mg. or so you will have to taper more slowly, especially after 15 or 10mg., since your body is no longer producing the cortisol and adrenaline you need to make up for the drop. That is why you read about people being on only 1mg., or 5mg. or whatever. It has become very sensitive because of the amount of time they were on higher dose pred and the affect on their adrenal glands. I'm not sure that your son has even been on high dose pred long enough for that to happen, but unfortunately, he probably should be, in order to properly treat the disease. Eventually, the adrenals are supposed to kick back in, but it can take a lot of time and tweaking of the dose, and a lot of people have trouble with this. It surprised me too, when I first read about it, since I'd only been on short term pred tapers and 10mg., 5mg., or 1mg. seemed like very significant doses in my experience.

So yes, you probably need some other opinions on the pred management, preferably from recognized WG specialists who can be consulted with through the Vasculitis Foundation. Or in your area, there may be people with more expertise than your current docs.... There are some WG specialists in California, in the San Francisco area and I seem to remember hearing of a vasculitis center or department in S. CA. If we know which part of CA, we might be able to help more with a recommendation.

Good luck, and I wish I could answer more about the rash. I do get the feeling that RTX takes longer to work than CTX, which was my "big gun" drug at the beginning of treatment. But there are reasons docs prefer RTX these days, apparently. I think all the drugs carry some risks and problems.

[Alysia]

I have only just been Diagnosed myself (April 2013), 12 days after I started my cocktail of medication, a rash came out on my chest and tops of my arms, and top half of my back. They were red, a few had a pimple like center, a Biopsy was done, and they told me that it was a type of fungus. The rash itself, wasn't itchy or sore, and hasn't changed in 6 weeks. The dermatologist told me to keep a eye on them, and if it got worse, to come in immediately, and he would give me more drugs.

Hope this might help.
Hi woz,
can you explain what it is ? is it from the meds ?

[annekat]

Sorry, I got confused between two new posters, both of whom have docs who seem to be lowering pred too fast from the initial dose! Yes, it is your son, not you, I meant to refer to, and hope I edited all of my post correctly to reflect that.

[drz]

During my initial treatment I had a severe rash that looked liked I had rolled in poison ivy. It was attributed to an antibiotic I was given but rashes and skin problems are frequently present in Wegs. I have some scars where blisters have healed. With proper treatment though things do generally get better so best wishes for better health.

[Sitolini]

Alysia, thanks for the reply, it makes sense what you wrote maybe the RTX did not kick in yet. Now i am still catch up with the abbreviation what is the MTX? My son rheumatologist said he would start in a maintenance drug 6 month after the infusion.

[annekat]

MTX is methotrexate. A lot of people are prescribed this as a maintenance drug after their stronger drug has done its job. Some people with less severe Wegs, and not in their kidneys or lungs, may get MTX from the beginning. There are other maintenance drugs such as Imuran that are options to MTX.

[Alysia]

Alysia, thanks for the reply, it makes sense what you wrote maybe the RTX did not kick in yet. Now i am still catch up with the abbreviation what is the MTX? My son rheumatologist said he would start in a maintenance drug 6 month after the infusion.

Hi, sorry, MTX is methotrexat. I think he should take it. 6 months later is another IV of rtx.

[Alysia]

Hi Anne,
we wrote it both at the same time...:biggrin1:

[annekat]

Hi Anne,
we wrote it both at the same time...:biggrin1: I should have let you answer it, since he asked you.... :biggrin1:

[Sitolini]

Thank you all ... I believe I have enough info to talk to the doctor tomorrow.

[woz]

Hi woz,
can you explain what it is ? is it from the meds ?

The rash was not from the meds, It was something I picked up (lucky me),
since I don't have a immune system at the moment, I'm guessing.

[Alysia]

The rash was not from the meds, It was something I picked up (lucky me),
since I don't have a immune system at the moment, I'm guessing.
Hi woz,
thank you for your answer. I hope you will be able to get rid of it soon.