Diagnosed, Devastated, & Defenseless

[Joni]

Hi Forum members, I'm Joni from Kansas, and my son 30, just got diagnosed with Wegeners. I know nothing about it. I have read some of the Medical websites that explains what it is. I have come to the conclusion there is nothing I can do, as his Mom, to make it better or fix it for him. I hope the members here don't mind me learning from them and what I can or he can do from reading your posts and maybe asking an occasional question or two. Thank you for accepting me in this Forum.

[Geoff]

Hi Joni,

Firstly i am sorry that your son has received this diagnosis, but hopefully you will both benefit from this Forum and what it has to offer, both in medical and phsycological support. Perhaps your son could post regarding his syptoms, diagnosis and treatment regime in the near future?

Hopefully you have a "good" medical team who are familiar with the treatment of Wegeners.

Wishing you and your son well as you come to terms with this situation. I was diagnosed 7 years ago and lead a pretty normal life right now. I know of several people on this Forum who are the same age as your son and hopefully they will give him the additional support he requires.

[morningsunshine]

I have come to the conclusion there is nothing I can do, as his Mom, to make it better or fix it for him.

Hi Joni!

I'm 27 and was diagnosed at age 26, so I'm kind of close to your son's age. Speaking from my experience, the best thing my mom has done for me to "make it better" has been to simply listen to me and read up on Wegeners and the various treatment option so that she understands what is going on. If you want to watch a good video about the various medications used to treat WG, here's one from the Vasculitis Foundation: https://www.youtube.com/watch?v=j46fXp_aMiU&index=3&list=PLr6Bwau6uSmvDyKmH7Eo0jVz2t6ICzUEI

My mom has also sent me little presents over the last year (I live on the other side of the country), just to show that she is thinking of me and she cares. Those little things really mean a lot!

My mom also has done things that I found less helpful, like contacting doctors and the vasculitis foundation directly. In my experience this felt disempowering, but that might not be the same for everyone.

I think how you can best help is by putting yourself in his shoes to figure out what he needs (or just ask him!). I think more than medical advice, he likely just needs someone to listen, suport him and be on his "team."

[MaxD]

Joni, As a parent myself, I sympathize deeply with your worries. You and your son should definitely look at the Vasculitis Foundation (http://www.vasculitisfoundation.org) website for more information and pointers, especially the list of vasculitis centers and specialists. Your son will benefit by consulting with one of the center specialists, and his physician/rheumatologist should be willing to work in consultation with a specialist, especially since the disease is rare, and it is important to keep abreast of the latest advances and trials.

As your son is treated with prednisone to start with, he will feel much better right away. Prednisone is very effective in subduing the symptoms (but is not a cure), but can have many side effects - ranging from weight gain to sleeplessness and mood changes, to bone density loss and acid reflux and high blood sugar (hopefully not all of them simutaneously). It is important that he exercise mildly regularly. His doctors may suggest supplements for calcium and vitamins B-complex and D. Also, if your son is prone to gain weight, he should maintain a healthy, low-carb diet.

Along with prednisone, the doctor will prescribe immunosuppressants - of which there are a few choices, protonics (for acid reflux symptoms), and Bactrim. If his doctor puts him on cytoxan, that has its side effects that need precaution. If he is on Rituximab, side effects are rare but the drug takes longer (several months) to alleviate symptoms and get into remission.

The last part is the time it takes to recover from prednisone withdrawal symptoms - and that can take a few months. But your son is young and will bounce back in short order.

The main thing is for him to be patient through this process, and for you to know that he will recover. It is a manageable disease, and with regular checkups he will lead a good long life.

Stay strong, and all the best to you and your son.

[Birdie]

Hi Forum members, I'm Joni from Kansas, and my son 30, just got diagnosed with Wegeners. I know nothing about it.

Don't feel bad, everybody knows nothing about it when they're diagnosed. ER doctors have told me they never heard of it.

I'd have to look up the terms to get all technical, but there are degrees of Wegeners. Some people linger with it for a while before symptoms become severe. Others, like me, get hit hard in a few months. Not to feed natural denial tendencies, but there is also the possibility of incorrect diagnosis which is quite common since it's rare and hard to pin down. If he was not diagnosed properly then time could be wasted which he could have used getting treatment for something else, or suffer unecessary side effects from the wrong treatment. Uh Oh, I'm getting scary here, better tone it down.

First, get the best confirmation possible on his diagnosis. Combination of tissue biopsy and blood test for C-ANCA are one method of confirmation. With that you are assured of the diagnosis, but not everyone with WG can be diagnosed this way.

Second, Wegeners can quickly damage... well anything in your body. So get every inch tested.

Third, be a bit of a goofball, it works for me!

[Jaha]

Joni,
It is so great that you are trying to understand this complicated disease to be supportive to you son. This forum has so many great people to answer questions or just vent to. The really hard part about Wegener's is that just about every case is a bit different, so what happens to one may not happen to another. The best thing you can do is to understand and listen to your son about how he feels. Wishing your son all the best.

[Joni]

Thank you Geoff, I also hope he has a good medical team, since they are the ones who are hopefully working together to make him better. While he was in the hospital, it seemed one Dr. wouldn't know what another Dr. was doing. It was one of the most whirl wind hospital stays I had ever witnessed! I also hopes he posts In a forum, all the things that have lead up to where he is now, so he can get support and advice from others.

[Joni]

Thanks for the advice morningsunshine! I am sorry your far away from your mom, I cant imagine being that far away from my children, especially when they are sick. Thank you for the video, although I have no watched it but I will..I could or would not contact his Dr.s, I hope he knows he can discuss anything with me and I will be there to listen and do what I can to help him feel better...

[Joni]

MaxD, I will pass this information on.. I am not 100% positive but, a lot of the medicine you mentioned above he is taking. Yes, Cytoxin is one, which I am not found of, but maybe he will not have to take if for long??? Thank you for the encouraging words!

[Kvincent13]

MaxD, I will pass this information on.. I am not 100% positive but, a lot of the medicine you mentioned above he is taking. Yes, Cytoxin is one, which I am not found of, but maybe he will not have to take if for long??? Thank you for the encouraging words!
Cytoxin (150mg daily)
prednisone (50mg daily)
prenisolone eye drops
restasis eye drops (only taking this because it was very expensive, I won't be renewing this one)
levoflaxim (750mg daily)
bactrim (2 daily, for the bacteria that has grew in the cavity in my lung)
Citrical
Oxycodone

got a pretty full pill sorter

[Birdie]

got a pretty full pill sorter

Do you know your C-ANCA level? Get it included in blood tests so you find out if it's an indicator in your case. It could get you safetly off the cytoxin, much sooner.

[Joni]

Kvincent13, I'm so happy you joined! Thank you!! Maybe we can learn a few things or two? :hug1:

[annekat]

Joni, there is lots of valuable info in what has already been written here. So I mainly want to say welcome to the forum, and I hope you and your son will give us a few more details on the progression of his WG and the treatment he is getting. And I hope you will check in with the forum and other WG resources daily; this has saved my sanity and sense of well-being since my dx. And as someone said on another thread, don't believe everything that comes up in a Google search! We on the forum can help sort some of that out, and you also may search things here on the forum. Ask as many questions as you want, any time, share anything, and feel free to vent and complain whenever you want! We are here for all of that. Best wishes and good luck!

[MaxD]

Cytoxin (150mg daily)
prednisone (50mg daily)
prenisolone eye drops
restasis eye drops (only taking this because it was very expensive, I won't be renewing this one)
levoflaxim (750mg daily)
bactrim (2 daily, for the bacteria that has grew in the cavity in my lung)
Citrical
Oxycodone

got a pretty full pill sorter

That's quite a list you have going! Is it levofloxacin (levaquin) or levoflaxim that you're on? The only reason I ask is that the former is a quinolone and is known to increase the risk of tendonitis and/or cause tendon rupture. Some of us on this forum suffer tendonitis from the disease even without being on quinolones. The oxycodone indicates you must be in a fair amount of pain. Stay strong!

[mishb]

Hi Joni and welcome to you and your son.


Everyone else has said all of the great stuff that you need to know.

I hope things come good, really quickly.
Keep up the great work that you are doing for him.
Our carers, loved ones and friends are an important part of a weggie lifeline. Thankyou for being here.

[Joni]

That's quite a list you have going! Is it levofloxacin (levaquin) or levoflaxim that you're on? The only reason I ask is that the former is a quinolone and is known to increase the risk of tendonitis and/or cause tendon rupture. Some of us on this forum suffer tendonitis from the disease even without being on quinolones. The oxycodone indicates you must be in a fair amount of pain. Stay strong!




Hi MaxD.. Are the quinolones a type of drug? Also how long had you been diagnosed before you got tendinitis? Just wondering how many, if more, problems Kyle is going to have and the length of time it takes the problems to come along? I pray no more!! I'm sure once again it's the individual. Kyle is having an eye issue, would you recommend an optomitrist or ophthalmologist? I read something somewhere he should ask one of the Dr.s on his team for a referral to the later..
Thanks..

[annekat]

Hi MaxD.. Are the quinolones a type of drug? Also how long had you been diagnosed before you got tendinitis? Just wondering how many, if more, problems Kyle is going to have and the length of time it takes the problems to come along? I pray no more!! I'm sure once again it's the individual. Kyle is having an eye issue, would you recommend an optomitrist or ophthalmologist? I read something somewhere he should ask one of the Dr.s on his team for a referral to the later..
Thanks.. The quinolones are a type of antibiotic. Levaquin is among the strongest of them. I took it and did get some twinges in my tendons when going up and down stairs, as well as some overall weakness in my legs and difficulty getting around, just for the week or so I was on the drug. Prednisone is also known for tendon issues, so if you are taking both, as I was, you need to be extra careful and pay attention to any of these symptoms, and maybe stop taking it if they are bad. Some people have had delayed reactions to these, too. Others have had no side effects. I took Cipro, another quinolone, probably a lighter-weight one, (and I know a lot less expensive than Levaquin), and had no problems. Docs have a way of just not mentioning these things, so it pays to be well informed. You can research the quinolones on the web, and the problems they can cause. But first make sure that was indeed what you were taking. I think it probably was, since I can't find "levoflaxim" in a Google search. Ask your doc about it.

[MaxD]

Hi MaxD.. Are the quinolones a type of drug? Also how long had you been diagnosed before you got tendinitis? Just wondering how many, if more, problems Kyle is going to have and the length of time it takes the problems to come along? I pray no more!! I'm sure once again it's the individual. Kyle is having an eye issue, would you recommend an optomitrist or ophthalmologist? I read something somewhere he should ask one of the Dr.s on his team for a referral to the later..
Thanks..

Joni,

Anne wrote about quinolones. I had swelling and pain in my ankles before I was diagnosed. The prednisone hid that until I tapered down, then the pain and stiffness came back - at this point I was in remission so it was the result of prior damage and/or who-knows-what-else. Now it is manageable. Also, I was never on any quinolone, thankfully.

As for Kyle's eye issues - he MUST see an ophthalmologist. (Optometrists are not MDs.) In fact, depending on his condition, the ophthalmologist may refer Kyle to a uveitis specialist if needed. I had red, scratchy eyes prior to diagnosis and the ophthalmologist gave me some steroid drops which took care of the problem. Fortunately it was a mild case and treated early.

As long as Kyle sees his doctors and has regular checkups and follows instructions, it's very unlikely new symptoms will develop. Most likely he will feel progressively better and stronger.

[WG mom]

Hi Joni,
I am also a "WG Mom." My daughter was diagnosed about 18 months ago. She just turned 26. This forum has been extremely helpful to me in understanding both the disease itself and the personal toll it can take. You've already received helpful and important information here. What I can add is the parent perspective. I think for my daughter one of the most important ways I support her is to continue to see her as who she is and not a victim of this blasted disease. Initially, I was constantly asking her how she was feeling. I think she began to wonder if this was now how she would be defined. I quickly learned to stop asking all the time. She will share the ups and downs as she needs to and not on demand from me ( so to speak). You will become sensitive to your son's moods over time and learn how best to respond to his needs. Interestingly, my daughter wants nothing to do with this forum, although she knows I log in and follow it from time to time. Again, for her it's a matter of not letting WG take her over. Your son may experience this differently than my daughter, but my advice is to take your cues from him. Let him know you are always available to be a sounding board or to support in any other way he needs. Just always remember the disease is not who he is.
Best wishes to you all.

[Pierre42]

Speaking as a patient the strongest advice I can give is to read up on the medications prescribed and their side effects, prepare yourself to be on the receiving end of the results, don't take it personally, etc.

Prednisone is a steroid, we get 'roid rage' , mood swings, depression, cognitive failings, depression (and so-on). For the most part patients may not even realise their behaviour is abnormal (until perhaps after the've tapered down to a mild dose, or off it entirely).

Also, eventually, the realisation that your life has changed forever strikes home - and that in itself may trigger anxiety, paranoia (unclean! out, out damn spot!), and depression.

Remember that WG/GPA is an inflammatory disease, so things which trigger inflammation are likely to "make things worse" (yes, I mean "may possibly induce a flare").

High Sugar (or at least, High GI) food "is killing you" (literally), it (temporarily) causes an inflammatory response, best to at least TRY to avoid them as much as possible.

Long Distance flights REALLY (really really really) knock your immune system around, flaring after a flight does happen. (been there, done that)

Any surgery you may have will almost certainly trigger a flare, post surgery (or accident/trauma) your immune system revs into overdrive (which is perfectly normal) but the problem is that WG _also_ kicks in and tries to kill you all over again. (but I had ONLY JUST FINISHED getting off pred ENTIRELY, and now you tell me I need MASSIVE doses again?)

Remember that every body is unique, every case of WG is different. Treatment is more art than science. It's a delicate balancing act between a disease trying to kill you QUICKLY and drugs with side-effects which will probably kill you eventually. (or side effects which are worse than the disease, or "just" leave you feeling like death-slightly-warmed-up)

Flares happen - Like The Spanish Inquisition.

The Price Of Freedom Is Eternal Vigilance.

For the record let me repeat myself: WG/GPA is an inflammatory disease so by definition that means your fitness and diet will have a large impact on your symptoms.

https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/

Low GI foods are good, high fibre foods are good, "processed food" is bad, "preservatives" aren't just bad - they're evil, fermented foods (kimchi, kefir, probiotic yoghurt, pickles, certain spices, etc) are awesome, not-quite-all "immune boosting superfoods" are literally poison.

Exercise works WONDERS , also if you're overweight now is the time to drop several notches from your belt - it'll probably save your life.

I've previously posted many and various nuggets-of-wisdom I have learned as a result of becoming a patient.

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3092-i-m-not-doctor-i-just-suffer-incurable-life-threatening-disease.html

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3895-long-term-steroid-use-weakens-tendons-so-careful.html

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4874-food-thought.html

http://www.wegeners-granulomatosis.com/forum/medication/4732-azathioprine-necessary-evil.html

[annekat]

Really excellent post, Pierre! So good that I bookmarked it. :thumbup: That is, I bookmarked this page of the thread.

[Birdie]

You can research the quinolones on the web, and the problems they can cause. But first make sure that was indeed what you were taking. I think it probably was, since I can't find "levoflaxim" in a Google search.

Try "Levoflaoxacin"

It's a broad spectrum antibiotic of the fluoroquinolone drug class, according to Wikki.

One of many, many, many antibiotics from my past.

[Birdie]

Flares happen - Like The Spanish Inquisition.

Nuf said...

[annekat]

Try "Levoflaoxacin"

It's a broad spectrum antibiotic of the fluoroquinolone drug class, according to Wikki.

One of many, many, many antibiotics from my past. Levaquin is the brand name for levofloxacin. It can easily be researched under either name. At the time I took it, no generic was available and that may still be the case. It is fairly expensive. Back in 2008, after having joint, muscle, and tendon problems, apparently from taking it, I researched it and found that many have reported even worse problems than I had. Others, I presume, are not affected in that way. As I said above, I later took Cipro, or ciprofloxacin, another fluoroquinolone, and had no problem. It is probably not as strong as Levaquin, though, which is considered a "big gun".

[Joni]

Thank you WG Mom, I as you were asking almost daily, how he is doing.. Somedays I still do.. If I didn't hear from him, I texted him. I never want him to think this is how I define him. He is so much more than that! I seem to be letting this blasted disease influence my learning, reading, watching and shopping for anything to make it go away! My ears perk up like a puppy when I hear the words.. Autoimmune, Inflammation, GPA, all the words associated with this.. It gets so overwhelming sometimes, I just lay down and cry, then I start wondering if there was anything I could have done to prevent him from having it. Even today on Public TV there was a show on Immune Deficiancy, I was glued to TV with my paper and pen waiting to jot anything down with reference.. I will TRY and take your advice and slow down, I hope he knows that if he wants to share with me, I am and always have been there to listen.. I really needed to hear your advice.. Thanks from one Mom to another!!

[Joni]

Pierre 42, you sound very wise! I have a question.. There are vitamins, 'out there' (stores), that claim to build your immune system.. If one is taking medicine to destroy your immune system, should you take these vitamins or eat and drink foods that are suppose to build it up? Aren't you fighting one against the other? Sorry if this is a dumb question, I really do not understand.. Sorry and thanks...

[annekat]

Pierre 42, you sound very wise! I have a question.. There are vitamins, 'out there' (stores), that claim to build your immune system.. If one is taking medicine to destroy your immune system, should you take these vitamins or eat and drink foods that are suppose to build it up? Aren't you fighting one against the other? Sorry if this is a dumb question, I really do not understand.. Sorry and thanks... Not a dumb question, and sorry it missed getting answered until now. Your logic is right, we should not be taking things that tend, or claim, to boost or build our immune systems that are malfunctioning. We aren't quite trying to "destroy" them, as we will die with no immune system at all. But we are trying to suppress them so that the damage they are doing will be minimized. By taking the meds, we are aiming to slow down and stop the progress of the disease yet still be able to fight off infections and other bugs, and allow healing of tissue. Immune system boosters would just ramp up the level of what we are trying to control. Things to avoid include echinacea, too much garlic, too much vitamin C, etc.; I'm sure there are other common ones I'm not thinking of. I think it is OK to eat some garlic, just not large quantities, and many of us do take vitamin C but limit it to 1000mg./day. That is my understanding of this, and others may have more to add.

[Pierre42]

Not a dumb question, and sorry it missed getting answered until now. Your logic is right, we should not be taking things that tend, or claim, to boost or build our immune systems that are malfunctioning. We aren't quite trying to "destroy" them, as we will die with no immune system at all. But we are trying to suppress them so that the damage they are doing will be minimized. By taking the meds, we are aiming to slow down and stop the progress of the disease yet still be able to fight off infections and other bugs, and allow healing of tissue. Immune system boosters would just ramp up the level of what we are trying to control. Things to avoid include echinacea, too much garlic, too much vitamin C, etc.; I'm sure there are other common ones I'm not thinking of. I think it is OK to eat some garlic, just not large quantities, and many of us do take vitamin C but limit it to 1000mg./day. That is my understanding of this, and others may have more to add.

VitaminC is fine to take, the only downside I'm aware of is that truly STUPENDOUS doses (think tens of grams) will tend to have a laxative effect.

Often the recommendation (eg to slamdunk a cold) is to take enough to reach that point, then back off a little. The phrase "dose to bowel saturation" has been used.

As far as Garlic goes, the ONLY sites warning about garlic are saying "garlic boosts your immune system" (ie snappy soundbyte with zero real content - amazing how much of that there is).
Everything even vaguely scientific talking about Garlic talks about the many and various ways garlic kills bacteria, thins the blood, etc but nothing concrete about any "interaction" with your immune system itself.
Sure it has "drug interaction warnings" but they're mostly due to that "thins the blood" (because eg Warfarin or NSAIDs).

I suspect the above "boost" soundbyte is in reality "does good things so your immune system doesn't have to" in the same sense that VitaminC does.

Personally I fall on the "eat lots of garlic" side of the fence. I do, and I'm in remission.

Echinacea, Goldenseal, and friends (however) are seriously toxic, don't take them ever unless you like staying in ICU.

[annekat]

Pierre, I tend to agree that garlic is a healthful and delicious thing to eat lots of. That and the Vit C and echinacea are just things I've heard said on here. These things do tend to get exaggerated. I wish I could think of better examples. I would definitely avoid buying supplements especially designed to strengthen the immune system when we are trying to suppress it. Echinacea may be an example of that, and I have no idea what vitamins, or possibly herbs, were in the things Joni saw "out there".

Do you mean echinacea and goldenseal are toxic to everyone or just to people with misbehaving immune systems? I don't take them now but have occasionally in the past, before WG dx, and not in large doses or on a regular basis. They had no negative effect that I was aware of.

[MaxD]

The immune system is a complex beast. It's simplistic to say that X or Y "strengthen the immune system and therefore we (GPA souls) should not take them because we are trying to suppress it." First off, "strengthening the immune system" is a very ambiguous claim - exactly what aspect of the immune system does X or Y change? Second, it's not that we are trying to suppress our immune system - all that our doctors are trying to do is get rid of the ANCA. But the only way we have to do that right now is to eliminate the peripheral B-cells (RTX) or pretty much anything in its way with CTX. Unless X or Y specifically increases the production of ANCA, there should, in principle, be no harm in ingesting it. For example, we're all told to get flu vaccines (just not the live ones) - simply to build immunity (aka strengthening our immune system).

So, take your Vitamins and whatever else - BUT, just don't take mega doses of anything. This applies for healthy non-GPA people as well.

[Pierre42]

Do you mean echinacea and goldenseal are toxic to everyone or just to people with misbehaving immune systems? I don't take them now but have occasionally in the past, before WG dx, and not in large doses or on a regular basis. They had no negative effect that I was aware of.

Goldenseal, Astragalus, Echinacea and Spirulina (and friends) are toxic to autoimmune-patients because they actually increase the activity or efficiency of your immune system (although this is perfectly OK for most healthy people, these foods are likely to induce a flare of your symptoms).

Foods/herbs/Spices (etc) which are anti-inflammatory will most likely be safe and even helpful to us.

Cloves
Ginger
Rosemary
Turmeric
Saffron
Cinnamon
Oregano
Marjoram
Sage
Thyme
Blueberries
Kefir
Natto
Kimchee
Miso
Tempeh
Sauerkraut
Pickles
Olives
Shiitake Mushrooms
Green Tea
Leafy Green Vegetables


Who knew that suffering a potentially fatal condition could be so delicious? :drool:

[annekat]

Thanks, Pierre, that is good info. The one thing about turmeric is that in the literature that comes with CTX, there is some sort of caution about using them together. Since I like to use curry, I thought about that while on CTX, but did not let it stop me from using a little curry. Nothing happened. The rest of your list is intriguing, and I'm going to bookmark the page so I'll have it! :)

[mishb]

Please make sure that any supplements that you do take, do not interact with your medication. The same as with different herbs, as Anne mentioned above about turmeric and CTX

For example, you should not take a multivitamin if it has folate in it, on the day that you take your MTX.

I also cannot have multivitamin tablets, or something within them, because it causes my LFT levels to increase to a point of doctors thinking that my liver is being affected by WG. I stopped taking the vitamins, and then levels went back to normal.