Aspergillus infection assoc'd with Rituxin use?

[Palmyra]

Hello to all! I hope all things re: the New Year are going well.

My question to the group involves opportunistic infection and immunosuppression, more specifically...

Aspergillus (fungal infection, in either sinuses or pulmonary) associated with Rituxin use. I am in several support forums, and one that is specifically for parents of Weggies, seems to sport quite a few kids/young adults that have been affected by Aspergillus infections.

My question to those that have a history of being treated with cytoxin, have you also experienced problems with severe fungal infections? Is this more of a problem with young people, is it associated specifically with Rituxin or is this simply one of those organisms that affects any and all that are immunosuppressed.

I have some friends in oncology that have a longer history with Rituximab than those with AI disease, so I will be poking my nose in those circles, and getting back to you soon.

[Jack]

Only fungal skin infections, nothing serious.

[Sangye]

I haven't had anything like that, Palymyra. No infections at all, actually. I've had 2 colds since starting rtx.

Aspergillus can affect anyone who's immune-compromised. I don't see why it would favor those on rtx.

[Palmyra]

Maybe some others will respond with time. It is disconcerning to me the number of young people, diagnosed with Weg, that seem to have really serious, life threatening infections that seem to be confined to a relatively small group of common pathogens. I don't know if it might be because of their age, and lack of "immune memory", or if I am imagining some trend. A lot of these kids are being treated with Rituxin because of recent diagnosis and fertility issues. Have you seen secondary infections being as much or more of an issue as the Weg itself?

Please weigh in if you have any thoughts on the issue.

[pberggren1]

For me it has been sinus and lung infections the last 2 years that have caused the most trouble. I thought I heard Dr. Merkel say that most Wegs patients have more trouble with infections over the years than the Wegs itself.

[Sangye]

Dr Seo has told me infection is more likely to kill us than Wegs. Of course that doesn't mean Wegs won't damage us--even permanently. It just means that even severe disease activity can often be addressed with massive doses of pred until the immunosuppressants kick in.

Dr Seo told me younger people have a tougher time with Wegs in general. I think it's because they have such robust immune systems that fight back against immune suppressants. They're also less able to avoid exposure to germs. Some are too young to be mindful of touching doorknobs, etc... Teens and young adults probably have a harder time because they want to be out in the world.

[Palmyra]

Yep, OK...intellectually I know all this. It just causes that momentary feeling of panic, as there is not much one can do but live in a bubble. And that is not going to happen for my 20 something year old.

pberggren, I am sorry for your repeated lung/sinus issues. Same for my daughter. And Sangye, you are a rock (and a smart one to boot!) Thank you all for your wisdom.

[Sangye]

There are things she can do, Palmyra. Does she get her vitamin D level checked regularly? What's her diet like? Does she take good quality supplements? Get enough sleep? Exercise as much as she's able? These go far.

[Palmyra]

She is learning. Due to the chronic diseases, the umbilical cord on this one has been long stretched. She maintains a great diet, she gets enough sleep most of the time. Exercise is hard (she used to be a cyclist, and can't do that anymore, although she is still active).

I am (slowly) letting go of the medical reins, and letting her make more and more of her own decisions. She has learned from some of her mistakes, fortunately so far in small ways. I wish she would join a site like this, but there is still a good bit of denial and some immaturity. She'll come around (especially the more I cut that cord :-) But not until I remind her to get her Vit D levels checked and a base bone density scan....

[Sangye]

LOL It must be so difficult. You're doing a great job. I'm sure she appreciates how much you learn on her behalf. :smile1:

[pberggren1]

If Sangye is a rock she must be a Diamond.

[elephant]

Were all little diamonds but some of just sparkle more. :flapper:

[Sangye]

Everyone in this group is a gem, you know? Everyone has their particular skills and talents and their unique ways of helping. I love to watch the interactions. :smile1:

[JanW]

For what it's worth, I've done nothing special since being immunosuppressed, and other than a rash and a couple of colds, haven't had any virus, etc. I am not a germaphobe and am much less squeamish about touching things in public (e.g. handrails, holding on poles on the subways), than the average person that is NOT immunosuppressed. Prior to diagnosis, I averaged tons of colds when my kids were younger, and as they got older, not so much.

Gotta say I agree with Sangye on the D. Don't know how often your daughter is going Palmyra, but I get my leveled checked on regular visits every six weeks or so.

[pberggren1]

Just found out I have Aspergillus in my lungs. I forget which drug my doc prescribed but the pharmacy is trying to get it covered as it costs 600 bucks for 3 weeks. I hope they can get it covered, I just cant afford that right now. Anyway, I am just stressed out right now.

[WeggieParent]

I am in several support forums, and one that is specifically for parents of Weggies,

Can you give me the site for the Parents of Weggies? I've tried finding it everywhere and my computer just doesn't see it. (Or maybe it's operator ignorance!!)

[GAtherton]

I run the Aspergillus website (The Aspergillus/Aspergillosis Website (http://www.aspergillus.org.uk)) which has a large section devoted to the support of patients that suffer from aspergillosis - we are based in the UK NHS National Aspergillosis Centre (National Aspergillosis Centre at UHSM, Manchester, UK (http://www.nationalaspergillosiscentre.org.uk)).

I can tell you that disorders such as Wegeners leave sufferers more vulnerable to aspergillosis and (far more commonly) other infections - much as you probably already know. Vigilance is essential.

Wegeners is effectively an aberration of the immune system, the treatment for which is currently to suppress the immune system to prevent it causing damage by being active in the wrong ways.

Rituxin works by targeting one part of the immune system, reducing the rate at which granuloma occurs by effectively stopping one part of the immune response. This is an improvement on steroid treatment as it should be less wide ranging in its effect on the immune system (leading to fewer infections) and have fewer side effects.

There have unfortunately been several reports of aspergillosis in people taking rituxin which suggests that the part of the immune system targeted by this drug also helps fight off fungal infections of this type. The numbers are very small overall (0.37% of those taking Rituxin) so again this is not a reason to stop taking the drug but is a reason to maintain vigilance. Things to watch out for include low grade fever, lack of response to antibiotics - if at all concerned speak to your doctor

NB anyone with aspergillosis or concerned about aspergillosis is welcome to participate in our patient support group at http://uk.groups.yahoo.com/group/AspergillusSupport/

Graham Atherton

[Sangye]

Thanks for that great info, Graham.

Phil, hang in there. Don't get stressed over the drug situation-- it's going to work out, I know it. :hug2:

[drz]

Just found out I have Aspergillus in my lungs. I forget which drug my doc prescribed but the pharmacy is trying to get it covered as it costs 600 bucks for 3 weeks. I hope they can get it covered, I just cant afford that right now. Anyway, I am just stressed out right now.

According to post below less than 1/2 percent people with Wegener's get this but at least it sort explains what has been going on with you. Hope the treatment for it is effective and you feel better soon!