Please help.. what do you think?

[Aylasnan]

How likely is it that I have Wegener's disease? After coughing up blood for 2 months I've just found out I have nodules on both lungs through CT scans. The nodules looked large 2-3 cm and white to me. I can tell from the blood tests Doctor ran he suspects this disease. Awaiting results and a biopsy. I have a 3 year history of year round "non allergic rhinitis". Each year being awful from Feb to Sept mainly due to horrid cough and loss of voice in July and August. I have noticed multiple hard lumps under the skin all over my body. I have had sore red eyes for years and have joint pain. Still coughing up blood and would do anything for a nights sleep. Have random pains all over body that come and go. Would really appreciate your thoughts..

[Debbie C]

SURE sounds like wgs to me. First thing ( maybe its just me ) but if I started coughing up blood , I would be at the e.r. in about 10 minutes. Why are you waiting ???? I also have lung involvement and had several nodules, a couple about the same size. Your dr., if he has any knowledge of wg can find out a lot from the blood tests. The sed rate and crp as well as your urine should be checked ( for your kidneys ) but you can have the results the next day so if I were you ,I would go get a copy of the bloodwork. I get mine done at the hosp. so I have access to them 24/7,but if the dr. did it you may have to wait until Monday, unless you get your butt to the er ,which I think you should do since this has been going on for so long. The dr should have cked your Anca in your blood but that isn't a for sure test. Mine kept coming back neg. but my biopsy was positive. The aches and pains and red eyes are also symtems of wg, I personally have never had lumps under my skin, just a rash, but that doesn't mean that anything,since this does effect everyone different. I don't know where you live but I URGE you to get an expert in this field, since you can go downhill very quickly with this if gone untreated which it sounds like you are. You should have a reumy, and ent and also a pulmy for starters checking you out. Aylanan, I honestly think the best place for you NOW is in the hosp. where you can get cked by all this drs now instead of having to wait for appts and they can get you started on some much needed meds. Please keep us posted.

[Aylasnan]

Thank you Debra. I'm in the UK. I'm sorry I didn't make it clear, the doctor who ran the blood tests and who is arranging the biopsy is the lead respiratory doctor at the hospital. He ran ANCA and ANA tests as well as a heap of others. The reason I didn't go to the doctors early was that every year during July and August I lose my voice due to "allergies" and I was sure this was something to do with a sore throat etc. I had an appointment with the allergist coming up so I waited to ask them. They sent me straight to the GP, who referred me to the chest clinic at the hospital. I am not sure if the hospital would give me the blood test results but I will give it a go now.

[Dirty Don]

Welcome Ayla, sorry you HAD to find us, but you're at the right place now for info & understanding. Without being medical, yes, you have WG or some form of an AI at the least. I have rhinitis also, bled thru nose & coughing, had the rashes, roving pains...and I 'toughed' it all out until one nite I simply dropped and ended up in ICU & hospital for 17 days. Get this addressed asap. GP doesn't wait for docs & patients to agree - it keeps attacking until you're under a good protocol of drugs, doc appts, and your persistence is UP! Best to you...get the drugs in your body NOW!

[Aylasnan]

Thank you Don :) Side effects of the meds sound awful. Do you actually feel any better once medicated?

[Aylasnan]

Also what does AI stand for please?

[Birdie]

Aylasnan,

You asked for advice and it's the easiest advice I've ever been asked to provide.

Listen to Debra. She nailed it.

You don't know what's wrong and you HAVE TO FIND OUT as soon as possible.

Oh, and that doesn't mean you should panic. Don't panic. Think of a fire in a movie theater. Nobody panics and everybody walks out unharmed. Panic causes a different outcome. But you can't just sit there for years waiting for the end of the movie.

Best to you,
Gary

[Aylasnan]

Thank you Gary :)

[Debbie C]

Aylasnan, AI stands for an Auto-immune disease in which the body is fighting against itself. Yes all meds have side effects,many more than others BUT if you are not on something,at least prednisone, to help with the inflammation and also the joint pain you are only going to get worse. They usually start you out with that and also ctx ( cytoxon ) SP ? (you would think I would know after all this time ! ) You will see that prednisone is a necessary evil,it will make you feel better and horrible at the same time. There are many people on here from the UK and I am sure they will chime in soon. Please take care and do not wait much longer to get some answers and some meds

[Birdie]

Thank you Gary :)

No need to thank me, just get help with the issues.

To be more precise than telling you to listen to Debra...

If you have Wegeners Granulomatosis (WG), also called Granulomatosis with Polyangitis (GPA), it can very quickly cause irreversible organ damage. Your symptoms sound very Weggie but could be something similar... Whatever is causing the problems, you need to get treated for it RIGHT NOW. Kick your doctors in the bum and get it going.

Coughing up blood is not a good thing... EVER! It's very common for WG to smolder waiting for someone to yell "FIRE" ( :) theater reference :) ) while damage is being done slowly... but then with no warning, it escalates quickly. Many of us here have been in exactly your situation and the replies you get will all be the same: DON'T WAIT ANOTHER SECOND! That's me... yelling fire... The rest of us are all near the exit headed for the coffee shop. Please join us.

To answer you concern about medication. Yes, the side effects are awful, no way to gloss over that one. At first a high dose of prednisone is like nothing you can imagine, feels great, massive energy and many WG symptoms go away immediately (20 minutes)... It pumps up your metabolism so high you don't have to climb mountains you just jump over them. It doesn't last long, days or weeks, depends on your body and the dose. Other medications (prednisone is only one part of most treatment options) also have nasty side effects. The treatment is the method by which you calmly walk out of the burning theater.

[Dirty Don]

Sorry...AI = Auto Immune. Yes, you will feel better after a while. Most of the drugs used seem to take some time to be fully effective. Once there, the symptoms subside...then it's kind of what's going on with the individual. Pred has its own issues, as do many of them, but without it one doesn't get thru the symptoms as easily. A tradeoff as it were...get those docs going!!!

[Aylasnan]

That's very helpful. Thank you. I don't know what else to do.. the lead respiratory doctor at the hospital has ordered a biopsy which I'm waiting for. I assume I'll be medicated after the biopsy results. Worried as I do feel worse every day but can I really order a consultant to medicate me NOW? I really am trying to wait calmly in the theater but it's horrid knowing I'm going down hill. Small thing, but sometimes feel if I cough or blow my nose again I'm going to scream.

[Debbie C]

It all depends if they will sedate you when you get your biopsy. I had 2 needle biopsies of my lungs, and I was not sedated, but they could not get enough of the nodule ( where it was located ) to test it.So I had to have a partial right middle lobectomy done. In which I was in the hosp for almost a week with a chest tube in me. I don't know how things are in the UK but here you will not get the results right away,they have to send the sample to be tested which could take some time. I know you said your Dr. was head of the resp. unit at the hosp. BUT is he an expert on wg because that is what you need. I still think you should go to the hosp where you can get things moving more quickly than waiting.

[Aylasnan]

In my experience here in the UK nothing further will be done if I go to the hospital. I'm going to ring tomorrow and ask to speak regarding the blood results and try and find out what the plan is. I was told it would be a CT guided biopsy whatever that means.

[Birdie]

I really am trying to wait calmly in the theater but it's horrid knowing I'm going down hill.

Ice cream. Does the UK have Klondike bars? I call em vitamin Klondike. Some vitamins are for good bones, vitamin Klondike is for good outlook. BTW, it's not a one a day vitamin, you can take more, two or three even. :)

If you absolutely can't go to the hospital, be admitted, get help now... I'm very surprised. There are options, symptoms can be treated without proof of the cause/diagnosis. Every time I was in the emergency room they started treatments to stabilize my condition, whatever it was, immediately, even before test results told them exactly what was wrong. Within hours I was in a hospital bed and doing much better. With test results on the following day they were able to be more precise in the treatment (for whatever it was that time).

You have said one thing that worries me, coughing up blood. If not for that I would urge you to have a Klondike bar and relax, wait and check on the test results tomorrow. If you're not actively coughing up blood? Maybe it was a little bit a few days ago? I would have big banna split and play with the birds until I could get the test results.

[Aylasnan]

Been coughing up blood for 10 weeks mainly at night. Sometimes fresh, usually in yellow phlegm. Have had no voice for that time also. They have found white nodules in both lungs. I'm taking a multi vit/min, vit d and omega 3 fish oil. Icecream sounds good :)

[LCL2013]

It's disappointing that they are letting you sit a wait until they get a biopsy scheduled, etc. I went to an ENT for my "sinusitis" who only suspected WG and referred me to a Rheumatologist. But, before I left his office the ENT wrote me a script for high dose prednisone, with a taper plan. He didn't just send me home to wait until my Rheumy appointment. I just don't understand it.

[Aylasnan]

Neither do I... unless they think it's cancer :(

[drz]

Neither do I... unless they think it's cancer :(

It sounds like a horrible stressful situation for you. Sorry your health care system is not more responsive. It makes me feel very fortunate that my health care providers have assured me several times they will respond quickly to any serious symptoms and they have generally been very responsive to addressing my concerns and reducing my anxiety when ever a symptom develops or an issue of concern comes up. I hope you get some appropriate response soon. I know when I was coughing up blood I was in patient in the hospital and they were ordering all kinds of tests to try determine what was wrong. I too suspected I had terminal cancer or maybe TB and when they were ruled out, they consulted with Mayo who analyzed my blood samples and pointed them in the right direction. I was transfer the same day when the results came back to a larger University Hospital and had my biopsy the next morning to confirm my diagnosis and start treatment for Wegs immediately. I doubt I would have survived without this timely intervention.

I don't know how your system works in the UK but here if you went to an ER with those symptoms the tests would be done right away to determine a tentative diagnosis and any biopsy or surgery needed would be done the next morning. I took a 90 year old friend to ER a month ago and after several tests in three hours they determined he had appendicitis and operated early in the morning after they determined it was safe for him to wait that long which was 10 hours after he entered the facility and he is now recovered from his surgery.

[annekat]

Thank you Don :) Side effects of the meds sound awful. Do you actually feel any better once medicated? Welcome!
People's reactions to the drugs vary, and it will depend on which ones you are prescribed, as there are several alternatives. We all pretty much take prednisone, or in the UK, prednisolone, pretty much the same thing, which is an anti-inflammatory. And we take one of several immunosuppressants; some are a form of chemotherapy in oral or infusion form. It is a weaker dose of chemo than cancer patients get, but goes on for longer and may post some risks. Don't worry, though, just do it, get the best advice you can that feel you can trust, and find other people here from the UK who can advise you. I found the meds I took to be unpleasant at first, but I got used to them, for the most part. The pred seems to be the one people complain about the most, because it is long term. But it can have the benefits of giving you energy and really zapping the inflammation in your body in pretty short order, and keeping it under control. It will also enhance your appetite.... be careful of that one. In any case, the drugs are a blessing in disguise, will stop the progress of the disease, and are a lot better than just letting it get worse and worse. And YES, you will feel better once medicated; it may take awhile to notice the difference, but you will, and will be glad you got treatment.

I agree with the others that you should be getting help a lot faster, and if you don't think the hospital will admit you, just lean on your docs for more decisive action. The one doc who you feel thinks you have WG should be able to prescribe suitable meds anyway, even without knowing for sure. Push to get the biopsy ASAP. Ultimately, if it's decided you have WG, you should try to get in to a vasculitis specialty center like the one at Addenbrooke's in Cambridge, which is held in high esteem by our other UK members. Whatever treatment is started now can always be changed if a place like that recommends something different. The doctor that I hear about the most is Dr. Jayne in the rheumatology department. We have a map linked in blue at top of page where you can add yourself and see who else near you has done so. Any of them would not mind a private message, I am sure, asking for how they handled the health care system, etc. Best of luck to you, and keep us posted.

[Aylasnan]

Thank you so much Annekat very helpful :) I am lucky enough to be within an hours drive of Addenbrooks. I'm waiting for the biopsy at Papworth in Cambridge at the moment then hopefully, it will be all systems go!

Is there hair loss with the oral chemotherapy drugs? I'm 5 foot tall and in January of this year I weighed 19 stone. I'm down to 15 stone 7 and not looking forward to the prednisone weight gain.

Have you ever come across anyone that has multiple clumps of hard small lumps under the skin? You can't see them, just feel them. They seem to be all over but mainly arms and legs. I feel like elephant woman

[Pete]

Is there hair loss with the oral chemotherapy drugs?

There can be with methotrexate. You can take folic acid (my doc rxed 1 mg/day) to counteract hair loss. It worked well for me.

[annekat]

Thank you so much Annekat very helpful :) I am lucky enough to be within an hours drive of Addenbrooks. I'm waiting for the biopsy at Papworth in Cambridge at the moment then hopefully, it will be all systems go!

Is there hair loss with the oral chemotherapy drugs? I'm 5 foot tall and in January of this year I weighed 19 stone. I'm down to 15 stone 7 and not looking forward to the prednisone weight gain.

Have you ever come across anyone that has multiple clumps of hard small lumps under the skin? You can't see them, just feel them. They seem to be all over but mainly arms and legs. I feel like elephant woman There is a fair amount of hair loss with cyclophosphamide (Cytoxan, CTX). But since it is a much lower dose per day than cancer patients get, the loss is not complete, you will just see a lot of hair on your hairbrush and in the shower drain. Could be different for others, I suppose, but that's how it was for me. Then I stopped CTX and started methotrexate (MTX) along with folic acid, and the hair loss diminished greatly... at my age , it is thinning anyway. I haven't heard that folic acid works with CTX for hair loss, but it would be worth a try. I have heard of it a lot with MTX, and it does appear to work. I think there are other reasons for taking it with MTX but I'm not sure what they are. With your coughing up of blood and all, I'd think it more likely that they'd put you on CTX than MTX for starters. There is also RTX, which is a little different, and you will hear more about it; it is very expensive, so they might try the CTX first, and will likely keep you on it for as short a time as possible. MTX is a little milder and would be for keeping your disease activity at a reduced level, once you had shown improvement.

As for the hard lumps under the skin, the only thing I had that was analogous was hard nodules on my elbow that you could see and feel. I haven't heard of those that you describe, but there are a multitude of possible WG symptoms that not everyone gets. I hope someone can shed some light. I hope you find out soon whether you have a diagnosis, and let us know!

[drz]

Weg research indicates most Weg patients (over 50%) patients develop some kind of skin problem within a few years. A dermatologist can usually sort these out and offer diagnosis and treatment if needed. Some of this is reaction to our suppressed immune system, or related to various meds we take.

[Birdie]

Is there hair loss with the oral chemotherapy drugs? I'm 5 foot tall and in January of this year I weighed 19 stone. I'm down to 15 stone 7 and not looking forward to the prednisone weight gain.

Have you ever come across anyone that has multiple clumps of hard small lumps under the skin? You can't see them, just feel them. They seem to be all over but mainly arms and legs. I feel like elephant woman

I was on 150gm of cytoxin for a year and a half. Nobody even noticed that my hair thinned a bit. Oddly, I completely lost the hair on my arms and legs. It grew back.

I was given all sorts of warning about the common prednisone side effects. Mainly weight gain and moon face (swelling). I had neither and I believe it was because I managed it well. I check my weight every morning and decide what I can eat that day based on what the scale say's. I drink vast amounts of water, much more than suggested. You don't have to gain weight, it's just that it takes a lot of determination not to gain weight. Prednisone makes you VERY hungry and you need to eat more while taking it because your body is using more. It's manageable.

So, Elephant Woman... All of your symptoms, including the lumps, match so closely with mine... Three years ago I could have written most of what you've written here. I don't know how much a stone weighs but I lost 20 pounds in the four months before I was diagnosed. That was a bad thing and I worked hard to get it back.

[annekat]

Oddly, I completely lost the hair on my arms and legs.

I think this happened to me, too, though my hair had already thinned in those areas. It hasn't grown back appreciably. I no longer even think about shaving my legs! (Women are supposed to do that, right?) Whatever hair is on them is a miniscule amount and barely visible up close. There is some, but not much, on my arms. We don't shave those.

[Dirty Don]

This is repetitive, but my hair thinned appreciably at first on mtx...doc upped my folic acid to triple, my hair came back, not only came back but came in curly...you have to understand that I've never had a curl before on my head...it only lasted about 6 mos then hair returned completely to normal growth.

[txrepub4God]

Thank you so much Annekat very helpful :) I am lucky enough to be within an hours drive of Addenbrooks. I'm waiting for the biopsy at Papworth in Cambridge at the moment then hopefully, it will be all systems go!

Is there hair loss with the oral chemotherapy drugs? I'm 5 foot tall and in January of this year I weighed 19 stone. I'm down to 15 stone 7 and not looking forward to the prednisone weight gain.

Have you ever come across anyone that has multiple clumps of hard small lumps under the skin? You can't see them, just feel them. They seem to be all over but mainly arms and legs. I feel like elephant woman

I started treatment for WG in May 2015, so I've been on prednisone, Cytoxan & Bactrim for 3 months now. I noticed alot of hair shedding started about a month after I started the Cytoxan, but I had a ton of hair so it wasn't that big a deal. However, my C-reative protein shot way up, so my rheumatologist increased my Cytoxan dosage last month to 150 mg a day. I am now experiencing ALOT more hair loss every day, as well as severely painful areas on my scalp to where just the weight of my hair (it's past shoulder-length) is excrutiating & touching my scalp is out of the question. The pain is leaving me in tears to where I pray my hair falls out in clumps here soon so I can justify whacking it all off to my husband, who rather likes my long hair.

My only other real issue with the chemo was severe nausea. I have meds to help with that now, but honestly I have absolutely no appetite & have been living on nothing but popsicles for months now. Thankfully this chemo nausea beat out the prednisone crazy-munchies, so I haven't had the urge to eat the furniture this time around with the steroids.

[LCL2013]

txrepub4God,

:sad:

[Birdie]

I have absolutely no appetite & have been living on nothing but popsicles for months now.

Oh boy, popsicle phase. My wife did that with breast cancer treatment. We got her every type of popsicle we could find, settled on one that was low sugar and came in a box of a hundred at Costco. No stick, just a plastic bag. Everbody else had to eat the flavors she didn't like.

[MikeG-2012]

"Looks like a duck, walks like a duck, sounds like a duck, has to be a duck!" This is what my rheumy said to me in the hospital when I had all the symptoms you just listed.