Hi From Oz

[Mark76]

I have yet to be diagnosed with GPA however several doctors now suspect after a sinus infection that won't go away (4 months now) with the standard treatment of antibiotics and looking at my nose and sinuses the left side only (right side is ok) looks very inflamed. I have some conductive hearing loss on the left side as well. Given this, my ENT specialist sent me off for blood tests and a chest CT. The blood tests showed nothing remarkable except slightly elevated white blood cells (neutrophils) and a raised CRP. The chest CT showed 4 small (4 to 10mm) nodules on my left upper lobe of my lung. My ANCA's (repeated twice) are negative. All my kidney and liver functionality is fine and have no other signs or symptoms. Ive been put on 25mg of prednisone since however my ENT wants to start weaning me off the pred for some reason!?

I wanted to hear from people familiar with this disease what their thoughts are on whether it sounds like Weg's or possibly something else? Has anyone else only had it on one side of the body?

One of the Drs wants to repeat the chest CT to see if the nodules have resolved or not. If they haven't he is looking at possibly getting a biopsy to confirm once and for all.

I very much look forward in hearing from you all.

[debra]

Mark, hi, I'll be the welcome wagon, since I just came on, looking for new posts. Good thatyou have a doctor already suspecting wegeners, and looking into it. Well not great in all, but you know what I mean. Some docs, think no, its rare so...I don't believe its that rare, just undiagnosed. Canca,can be negative, so means little. I'm also negative. These symptoms sound all to familiar, but no one here can say, for sure as you know. I think its great that you're docs are already on top of things. Some, like me, not so much. Mark, others will chime in here, so hold tight. Mark, please get used to;my typos, as if you plan on staying a while, you're gonna have to! Best of luck, and hope to see you around... Deb.

[debra]

Oh and Mark, if it turns out to be wegeners, you're gonna think you are in oz! Wizard of Oz... Little joke, Mark. Not very funny, but.... Deb.

[Pete]

Hi Mark,

Since I'm not a doctor, I won't speculate on a diagnosis. I suggest you find a doctor who specializes in treating Vasculitis. Some of the other Aussies will be able to give you suggestions. I think it would be good to stay on the prednisone until you're diagnosed. That will keep the inflammation down.

Keep us informed about your progress. Welcome to the club and good luck.

[Birdie]

sounds like Weg's or possibly something else?

Yes it sounds like Wegener's, and could also be something else. With the lung nodules I would be concerned because they can grow quickly. If it's Wegener's then you need proper treatment for it right away, before it gets seriously out of control. Wegener's can do a vast amount of damage in a very short time so don't delay, get an appointment with a Wegener's specialist. Tell us where you are and someone is likely to have a suggestion for a good doctor.

If it's Wegener's then you don't want to taper the prednisone. Initial prednisone treatment for Wegener's is usually a much higher dose. At 25 mg it might be preventing severe damage. It is also critical in helping your body repair the damage that has already been done. Tapering prednisone usually starts after improvement of the issues, or when side effects become intolerable.

[me2]

Everything you have mentioned fits within the possibilities of Wg. The gold standard for diagnosis is biopsy. I think your doctors have thoroughly checked the woods for horses and should now test for a zebra.
(this is from a saying in medicine "When you hear hoofbeats in the forest , think horses , not zebras". It means that it is always best to check for the most obvious causes first before checking for more exotic causes of symptoms)
Since you have sinus inflammation I would think you would be pretty confident that a biopsy rules Wg in or rules it out. The biopsy is done in the doc office with local aneasthesia and is not any worse than a visit to the dentist.
Given the symptoms you list and as long as they have lasted I wouldn't taper the prednisone until getting biopsy results. As Birdie mentions things can go worse very quickly if it does happen to be Wg.
The risk of being on pred a little longer is nothing compared to possible damage from tapering too soon.
I think biopsy would give valuable information and peace of mind no matter what the diagnosis.
If you do have Wg you will not be seeing the ENT anymore. You should be sent to a Rheumatologist for treatment. ENTs do not manage WG treatment.

[kaysee]

Welcome Mark, I hope you do not have WG but it is a good thing you have a Dr that is somewhat suspicious. It took two years or more for Dr to figure out my diagnosis and by that time I had kidney damage. Now I have only about 30-35% function. Go ahead with the lung biopsy to confirm it if necessary so you can start treatment if indeed it is WG. You don't want to delay treatment with this disease.

[Mark76]

Yes Im currently seeing an Immunologist too. Since reducing even from 25mg to 10 Ive noticed pain return. Is it possible its a rebound effect of pred? Yeah not entirely sure why he wants me to reduce before the repeat scan...I see him next week and if biopsy proves weg he wants to start me on methotrexate...is the prognosis good? I must admit im a little scared especially after reading lots on internet.

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[me2]

It is possible that the pain is a rebound effect of the prednisone. This is something very hard to differentiate. If you don't have Wg it is very possible that it is rebound. If you do have Wg then it is most certainly not rebound since the Wg has not had primary treatment with another medication. Treatment with prednisone is really not treatment of Wg at all but buys time for treatment to start working. In our Wg world 25mg is really not that big of a dose. I myself would be in no hurry to reduce before getting diagnosis. If you are diagnosed with Wg you will stay at 25mg or higher for some time. 10 mg is not enough to deal with Wg that has not been treated with heavier medication.
Once treatment is working you can start to reduce the prednisone. I would say the prognosis is great.

It sounds like you are getting good treatment and are headed in the right direction.
Reading on the internet in the early stages of diagnosis is a double edge sword that mostly cuts the wrong way in the beginning. What I mean by this is even if you have Wg you will never experience most of the things you read about. The treatment for Wg nowdays makes it a very managable condition. I know because I was diagnosed about 37 years ago before the internet, before lots of docs were educated and before some of the really great treatments that are available right now. Plus there is a very good chance of even better, less toxic treatments in the future.

I've had the illness for a long time. I'm on methotrexate right now and tolerate it very well. I also get Rituxan infusions every 6 months.

Oh, and I shouldn't forget to tell a possible newbie that I also had drug free remission for twenty years. Hang in there Mark. Keep us posted. Keep asking questions, of us, and the docs. Knowledge helps tremendously.

[Mark76]

That is so so comforting to hear. Will kerp you updated. Has anyone started with one side of the body particularly sinus?

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[me2]

I've not heard of it being in just one sinus but then even after all of these years I'm amazed at the different ways the illness can manifest. I read of a case once where it presented in a mans prostate.
I've certainly had it affect one ear or one eye.
I had one elbow swell up. In the very beginning I had nose bleeds that were on one side or the other. It's a small point to be on one side I think. I think you have some other very good symptoms to evaluate.

Have you had a chance to check out the Vasculitis Foundation Website? Here is a page on Wg: Vasculitis Foundation » Granulomatosis with Polyangiitis (GPA/Wegener?s) (http://www.vasculitisfoundation.org/education/forms/granulomatosis-with-polyangiitis-gpa-wegeners/)

[Mark76]

I have very interesting read

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[mishb]

Hi Mark and welcome, from another Aussie.

I hope you don't have wegeners. Fortunately, just because you have these symptoms, doesn't always mean that you have the crappy disease, so that is good news.

In regards to your question about only being on one side, for me my sinus is totally stuffed (yes pun intended) on the right side, my ear was also death on the right side only, however, my eyes and joints were not too fussed on which side they wanted :wink1:

Unfortunately, one of the ways to tell for sure if you have WG, is to have a biopsy of the affected area.
Your ENT can do a biopsy of your sinuses, however, unless they get the correct piece, it is very common to get a false biopsy, or inconclusive.
In regards to the pred, I was never put on it, until they did a biopsy to confirm, so you are lucky, however pred alone, does not help clear the infections and the stuffed sinus.

What part of Oz are you from?

If you do have WG and if you are on facebook, we have a group of Aussies and Kiwi's with WG.
You could join us to try and get an overview of the condition, that you may (or hopefully not) have.

Me2 has given some great information and he is correct - with the proper treatment, WG is a disease that you can live with and hopefully be lucky enough to find remission.

Below is a link to our fb group.

Best of luck for your next appointments and I hope you don't have WG, but you do need an answer to why you are feeling so crap.

https://www.facebook.com/groups/516643745050360/

[Mark76]

Im in brisbane and yes just not knowing is hardest part. Hopefully ive got good ent and immunologists. I will check out fb page thanks. Yes thats what my immunologist said about biopsy in nose being nonspecific which is why looking at lung. I must admit im a little scared about getting s biopsy there especially ridk of pneomothorax etc

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[Mark76]

I also meant to ask with treatment how quickly does aigns and symptoms resolve such as sinuses and hearing?

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[mishb]

Depending on the treatment of course, but I am in medicated remission, with prednisolone down to only 2mg now. and that too me 5 years.
For others it can take 6 to 12 month, and others are still on medication (maintenance dose) after 20 years.

Brisbane is a great place for treatment, and you may find others in the fb group, that go to the same specialists.
I actually travelled up there in August 2015 and had lunch with about 12 WG patients. It was awesome. We will do that catch up again, this year.

My hearing resolved after about 6 months, from hearing nothing at all in my right ear, to only having issues with hearing, in a crowded room or where other noises are going on. As for the sinuses, well mine still haven't come good. Are you doing washes and sprays to keep the big crusts/snots away?

[Mark76]

Sinuses still haven't come good...oh no....sorry to hear! Thats really the main thing causing me the greatest grief. Some nights even on endone the pain especially in sinus and teeth is insane. I can't imagine living with that for rest of my life. Yes routinely wash with saline just bought a new machine called sinupulse which Ive heard good reviews. Also oral steroids. I find, well I did when on at least 20mg pred it kept pain away nicely and didnt need pain relief at all.

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[mishb]

I don't have any pain in my sinuses, that stopped about a month after starting treatment, and touch wood, the infection has not come back either but did take a while to go, maybe 6 to 12 months. However, I cannot smell, and I can't breathe through my nose at all mainly due to scar tissue for the inflammation and infections, and possibly also the biopsy. A sinus biopsy, by the way, is very easy and not painful at all.

The sinupulse machine is terrific.

I wouldn't be inclined to reduce the pred too quickly while you still have issues going on. This is the little white pill that we all hate, but is a life saver to us.

[Mark76]

Right that makes more sense. Oh theyre looking at lung biopsy by the way hence greater concern. Yeah to be honest I havent had too many side effects from pred prob because max ive been on for 4 days was 50mg initially apart from a racing resting heart rate

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[mishb]

30mg was the highest I have been on, but I was taking other anti inflammatories, for RA, before then.

50mg is a medium type dose and the hunger pains should start soon :flapper:

Yes a lung biopsy would be a concern, but I'm sure many on here can tell you how they survived it. Unfortunately others, have not been so lucky and ended up with complications :crying: I hope someone comes along and lets you know what to expect for a lung one.

[Debbie C]

Hi Mark,glad you found this group but sorry you had to. By the signs of it sure sounds like wg. I also have nodules in my lungs. They tried to do 2 needle biopsies but they could not get enough tissue to confirm it so I had to have a partial right middle lobectomy which came back positive. I was put on cytoxin and pred and bactim for 6 months before I went into remission. I am one of those who can not tolerate meds so I have been on 5 mg pred for about 4 1/2 years now and they consider me in remission. I think the pains you are having from the reduction might be due to wg being active. Pred seems to hide issues. I would mention it to your dr. and maybe he will raise it again. Best of luck to you and keep us updated.

[Birdie]

Since reducing even from 25mg to 10 Ive noticed pain return. Is it possible its a rebound effect of pred? Yeah not entirely sure why he wants me to reduce before the repeat scan...I see him next week and if biopsy proves weg he wants to start me on methotrexate...is the prognosis good? I must admit im a little scared especially after reading lots on internet.

Reducing prednisone can, all by itself, cause many problems including various pains and muscle cramps. Reducing it can also allow issues to return, which the prednisone had been suppressing. It's only a guess which is happening.

The odds are way in your favor with proper treatment. Timing is the important part. Many people spend years being treated for incorrect diagnosis, which probably helps to control their Wegener's, but still allows a lot of damage like kaysee mentioned. Always keep in mind that you are your health care manager. You need to learn as much as your brain can hold, and use that knowledge as your guide.

[Middlesista]

If you have to have a lung biopsy make sure that the person that does it is experienced and not someone in training. I had a needle biopsy and I am not sure how they determine the best method of getting to the tissue but worth asking.

I later found out out I did not need the fool biopsy because my CANCA and Pr3 were positive.

I also ended up with a chest tube but that was not too uncomfortable

take care

[Mark76]

I have read a fair bit on wg like im sure most of you have. One thing that comes up a lot is about obtaining a culture. Is it possible to obtain a culture without surgery (fess)? And if it turns out to be an infection eg staph with treatment with correct antibiotics does the wg resolve or not?

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[jlove]

Hi Mark! I'm chiming in regarding having symptoms on only one side of your body. The majority of my symptoms are on the right side of my body although I had tracheal stenosis, which is in the esophagus, and so I consider it exempt from being on one side of the body or another. I also have a lot of nasal congestion in both nostrils but my right side is always a little worse. I had an orbital pseudotumor as well, which was above my right eye, and my right ear tends to have more problems than my left.

As others have said, only your doctor can diagnose you, but it sounds like you're doing all of the right things in seeing your specialists and following through with tests. I do believe, at least for me, that Wegs can prefer one side of the body to another. I've had symptoms of this for about 10 years now (WOW - hadn't done the math until now, I've hit a milestone!) so I've had plenty of time to develop symptoms in various places. I don't think your symptoms being on just one side of the body really means too much. If you do have Wegs, your one-sided version would be just another beautiful butterfly wing pattern in our little group of natural wonders. It's a much nicer way to visualize the varied way we all experience Wegs, in my opinion.

Good luck to you with your biopsy and keep us posted!

[annekat]

Welcome, Mark. People have given a lot of good advice. I'd like to chime in with my own experience on biopsies, which won't be the same as everyone's.. I think since one side of your sinuses is seriously inflamed, it would be beneficial to go for a sinus biopsy, since as Michelle said, it is not a difficult or very painful procedure, and doesn't have the possible complications you mentioned, nor any time in the hospital.. That's how I was diagnosed, right in my ENT's examining chair, a little bleeding and pain, but no big deal. Then, if that is positive, you will know, and if it is negative, they will still want to consider a lung biopsy, since sinus biopsies are not always conclusive. And others on here have mentioned biopsy samples taken from the gums, skin, or any other area that appears to be affected. Good luck, and keep us posted!

[Mark76]

Good advice I think ill suggest that

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[Dirty Don]

Mark, a culture can be obtained anywhere in the body the WG is presenting itself. Avoiding surgery, on the lungs, is predicated on the usefulness of the samples obtained in gums, nasal, etc. I had the lung surgery; it wasn't painful until afterwards when I couldn't move my arm very well as the surgeons had thrown it over my head in order to get to the spot of surgery! As for getting antibiotics, they only work on the bacteria, they do not work on WG. Docs gave me heavy duty antibiotics thinking I had an infection like pneumonia or similar. They did nothing to the WG at all. Best to you, follow protocols & you will get to where you want to be.

[Birdie]

I later found out out I did not need the fool biopsy because my CANCA and Pr3 were positive.

I also ended up with a chest tube but that was not too uncomfortable

Sissy, if I recall correctly you had something called a needle biopsy? And it resulted in much bleeding?

My lung biopsy was done with a camera down my throat, and a tool on the end which removed the tissue (I was sound asleep at the time). It also resulted in bleeding in my lung, but caused no real issue. In hindsight, I would not have done it since there was already a Weg positive biopsy of gum tissue. They did the lung biopsy to rule out cancer, which would most likely have been indicated in blood tests. The lung biopsy came back as Wegener's. The lung nodules healed very quickly on 150 mg cytoxin and 80 mg prednisone.

[Middlesista]

Sissy, if I recall correctly you had something called a needle biopsy? And it resulted in much bleeding? .

Birdie - Yes, needle biopsy done with conscious sedation so I was awake and all was well till they accidentally cut into my intercoastal artery and they had to put a coil in the bleed but not until after I bled into my pleural space and thought I would not make it -pretty intense with severe chest pan and not being able to breathe. They thought they took care of the problem and sent me home but I later was re-admitted with over 1 liter of blood in my pleural space requiring chest tube and home oxygen Granted - this does not happen to everyone- but it is why I suggest to folks to ask about lung biopsy and if there is another way to make the diagnosis I would look in that direction

[Birdie]

Birdie - Yes, needle biopsy done with conscious sedation

Thanks for the recap, seems this is an appropriate time and place to give Mark a heads up on the subject. It's all scarey and has to be managed with wise choices, not emotion.

[drz]

Everything you have mentioned fits within the possibilities of Wg. The gold standard for diagnosis is biopsy. I think your doctors have thoroughly checked the woods for horses and should now test for a zebra.
(this is from a saying in medicine "When you hear hoofbeats in the forest , think horses , not zebras". It means that it is always best to check for the most obvious causes first before checking for more exotic causes of symptoms)


Use the "find a zebra" website to see what it kicks out for possible diagnosis. I used it several times and Wegs always came out one or two depending upon what symptoms I listed.

I know there are are very rare and not nice diseases or problems that often defy diagnosis. i was talking with a former co-worker today a (RN) who has some kind of auto immune disorder but not even Mayo could diagnose it with any certainty but the treatment is for the symptoms so she often uses Prednisone but has had bad reactions to it with side effects. She got serous cataracts after six weeks of moderate dosage and needed surgery.

[Mark76]

Interesting is there a link for that website?

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[debra]

Drz, hello. Hey Drz,I forgot about that sight from a few years back, can you post it, please, or tell me the name? I can't remember... Thanks in advance Drz! Nice seeing you, Drz..... Debra.

[drz]

Drz, hello. Hey Drz,I forgot about that sight from a few years back, can you post it, please, or tell me the name? I can't remember... Thanks in advance Drz! Nice seeing you, Drz..... Debra.

You can find it with a search here or google on internet.

[debra]

Drz, hi. Got it. Just curious, are we not supposed to mention links? I apologize if were not? Anyway, thanks Drz... Debra.

[annekat]

Drz, hi. Got it. Just curious, are we not supposed to mention links? I apologize if were not? Anyway, thanks Drz... Debra. I think it's OK to mention links as long as we are not blatantly trying to sell something, or the link focuses too much on selling something. I don't think the link drz is referring to would be a problem that way.

[Mark76]

Its ok I found it thanks by good old google 😊. Im curious also if anyone with conductive hearing loss has had ventilation tubes inserted? Im keen to give that a go and possibly culture the fluid which I firmly still believe is a bacteria that is causing all this that hasn't responded to antibiotics. Although the lung nodules are suspicious.

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[annekat]

Its ok I found it thanks by good old google . Im curious also if anyone with conductive hearing loss has had ventilation tubes inserted? Im keen to give that a go and possibly culture the fluid which I firmly still believe is a bacteria that is causing all this that hasn't responded to antibiotics. Although the lung nodules are suspicious.

Sent from my SM-G900I using Tapatalk My eardrums burst on their own before tubes could be inserted. The tubes are for drainage and release of pressure. My ear infection was also antibiotic resistant and my ENT was unable to get a culture to grow.... maybe he waited too long or there wasn't really much bacteria in there, since Wegs can mimic these things. However, Wegs had not been thought of as a possible cause, and the infection did clear up after using the big-gun antibiotic Levaquin. But this WAS, no doubt, the start of significant Wegener's activity in my body, and a big antibiotic-resistant ear infection at the beginning is not at all uncommon. DX was delayed while I went through 2.5 years of what appeared to be sinus infections, allergies, and both conductive and neurosensory hearing loss. BTW, the holes in the burst eardrums did heal quite nicely on their own, though since then, one of them has been destroyed by erosion from WG disease activity. So I'm getting by with one ear with a hearing aid, which hears quite well even though it started out to be the worse, nerve-damaged ear. What a weird disease.

[Mark76]

Weird indeed...yeah I just cant help but think theres still an infection going on but none of the drs really wants to listen to me.

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[annekat]

Weird indeed...yeah I just cant help but think theres still an infection going on but none of the drs really wants to listen to me.

Sent from my SM-G900I using Tapatalk There still could be an infection going on. If you have Wegs, it doesn't mean you can't have an infection, too. Wegs can create the conditions, for example, in your ear, for an infection to start and take hold and be hard to get rid of. In my case, it finally cleared up with the strongest antibiotics, combined with pred, and my ENT called it a "really weird bug" and tried to culture it, unsuccessfully, I think after the strong antibiotic had already slowed it down. Whether these are actual infections or Wegs mimicking them, it seems the conditions in the ear from the WG somehow make them antibiotic resistant. In my case, and in subsequent sinus infections, it seemed the antibiotics combined with pred would eventually work, making it seem there was indeed an infection, but then I kept getting recurring ones, which wasn't typical for me, and was blamed on allergies. It took WG going into my lungs, a couple years later, for me to get a dx via lung CT scan and nasal biopsy. Plus my nose collapsed right around that time, pretty much a dead giveaway.

[Mark76]

Very interesting all of this thanks everyone

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[Birdie]

I just cant help but think theres still an infection going on but none of the drs really wants to listen to me.

Ironic that your ear issue is met by doctors with listening disorders. Don't let their issues delay your treatment.

Time is critical with Wegener's. Far more for some patients than for others, but still critical either way. One person after another on this forum, tells the same story of delays and incorrect diagnosis while the damage gets worser and worser... That's about the only thing we all have in common.

I went seven months and six times in the hospital before they finally treated the infections, and that was AFTER getting a clear Weg diagnosis. Treatment for the infections only happened when I yelled at the ER doctor "You're not listening to me." Had to yell it several times before he listened, with a fever of 105 degrees and after six or eight hours in the ER, half of the time unconscious and delirious. They were about to send me home again, without treating the numerous infections. Instead, being forceful finally resulted in ten days of infectious disease doc camped in my hospital room.

Sorry to be a broken record, oh wait, no I'm not. Good doctors don't have to be told that patients need to be heard.

[debra]

Birdie, great post. Gotta say, the er experiance just doesn't surprise me, even with these symptoms... Pretty amazing... Deb. P.m.s. I'm glad you're ok, and here! Xo

[Mark76]

Indeed....so many good posts and so good to know others that are or have gone through similar experiences. This sinus pain is getting pretty old I can tell you. Its odd last month I didnt need any pain meds just my pred and sleeping through night. This month Im lucky to get 4 hrs sleep because of discomfort and pain in sinus and congestion. Dont particularly want to take ibuprofen as I find I get nose bleeds. So rely on panadol or endone.

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[Pete]

Hey Mark,

Are you rinsing your sinuses with saline at all? If not, you may want to consider it as a way to rinse out crusts and clots. You can get a Neti-pot and a box of 100 pre-measured salt packets for about $20.

Do you take any meds to relieve sinus congestion? I've been taking 10 mg/day of loratidiene and two 10 mg tabs of Phenylephrine daily. They're both OTC here in the states. This has helped me keep my head clear.

[Mark76]

Yeah i just bought a sinupulse so will see how that goes. I haven't been using a decongestant no. You find it helps?? Im on pred and dymista i think its called. Spray steroid.

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[Debbie C]

pretty intense with severe chest pan and not being able to breathe. They thought they took care of the problem and sent me home but I later was re-admitted with over 1 liter of blood in my pleural space requiring chest tube and home oxygen

Wow that was intense !!!!!!!
Birdie,they also told me they thought I had lung cancer,so the state I was in..scared.. the surgeon gave me in option to take a sample or the whole nodule, and I thought if its cancer than I want it all taken out. In hide sight had I'd known what it was and that the meds would shrink them I would have never had it done.

[Pete]

Yeah i just bought a sinupulse so will see how that goes. I haven't been using a decongestant no. You find it helps?? Im on pred and dymista i think its called. Spray steroid.

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I think the rinsing will definitely help.

Pre-wegs, I had some seasonal allergies and used loratidiene to treat them. The pulmonologist who dxed me suggested pseudofed. I can't take that because it gives me insomnia. He then suggested Phenylephrine, which has helped keep sinus congestion away.

[Middlesista]

Debra C - I probably would have told them to take the whole nodule also if it was put that way to me. Hindsight ...

[Birdie]

Birdie,they also told me they thought I had lung cancer,so the state I was in..scared.. the surgeon gave me in option to take a sample or the whole nodule, and I thought if its cancer than I want it all taken out. In hide sight had I'd known what it was and that the meds would shrink them I would have never had it done.

Same situation as me, except I didn't have the option of removing it all at that time. I now understand that Weg nodules are likely to clear up on their own, and it was extremely likely that it was Wegs, unlikely that it was cancer, etc... Up front you don't know or really understand all of the possibilities or the odds of one situation over another. Wish I'd found this forum first.

[Middlesista]

Same situation as me, except I didn't have the option of removing it all at that time. I now understand that Weg nodules are likely to clear up on their own, and it was extremely likely that it was Wegs, .

Hmmm- I didn't know that Wegs nodules are likely to clear up on their own.

[Birdie]

Hmmm- I didn't know that Wegs nodules are likely to clear up on their own.

Sorry for the confusion Sissy. On their own meant without surgery to remove them. Not likely they will go away, just get bigger until treatment starts and Wegener's is suppressed. My lung nodules got lots bigger, whole lots bigger in a short time, like a few weeks. Only took a couple months for them be nearly gone with treatment, six months completely gone.

[annekat]

Sorry for the confusion Sissy. On their own meant without surgery to remove them. Not likely they will go away, just get bigger until treatment starts and Wegener's is suppressed. My lung nodules got lots bigger, whole lots bigger in a short time, like a few weeks. Only took a couple months for them be nearly gone with treatment, six months completely gone. I'm a little unclear on the definition of "nodule" as opposed to any other abnormal growth, mass, lesion, etc. I had numerous scattered, smallish "cavitary lesions" shown on a CT scan at dx, which shrunk or "went away" quickly with treatment by CTX and prednisone, though I think there may be scarring and remnants. Recently, a "nodule" which was known about in an xray 3 years ago, has grown in size since then from about 2.5cm to 3 cm. That is kind of big. They say it isn't cancer and looks like an air-filled sac, with "lucency", and I'm not clear on whether it is one of the original WG cavitary lesions. I don't feel a thing and it doesn't seem to be causing any problems. It's been 4 months since the last xray and I'm hoping to get another one this spring to see if it's gotten any bigger. My doc seems pretty lackadaisical about it. I've noticed docs seem to be that way until they think something is wrong. The turkeys. But I'm not too worried about it at this point.

[Middlesista]

Sorry for the confusion Sissy. On their own meant without surgery to remove them. Not likely they will go away, just get bigger until treatment starts and Wegener's is suppressed. My lung nodules got lots bigger, whole lots bigger in a short time, like a few weeks. Only took a couple months for them be nearly gone with treatment, six months completely gone.


i ask because many years ago I had a cat scan which showed a nodule which my doctor told me not to worry about -this was before diagnosis. A few years later had another Cat Scan which did not show any nodules and then the most recent where there were multiple nodules. Nodule vs lesion not sure of the correct term or the exact differences Anne - just known seem to be common

[Birdie]

I'm a little unclear on the definition of "nodule" as opposed to any other abnormal growth, mass, lesion, etc. I had numerous scattered, smallish "cavitary lesions" shown on a CT scan at dx, which shrunk or "went away" quickly with treatment by CTX and prednisone, though I think there may be scarring and remnants. Recently, a "nodule" which was known about in an xray 3 years ago, has grown in size since then from about 2.5cm to 3 cm. That is kind of big. They say it isn't cancer and looks like an air-filled sac, with "lucency", and I'm not clear on whether it is one of the original WG cavitary lesions. I don't feel a thing and it doesn't seem to be causing any problems. It's been 4 months since the last xray and I'm hoping to get another one this spring to see if it's gotten any bigger. My doc seems pretty lackadaisical about it. I've noticed docs seem to be that way until they think something is wrong. The turkeys. But I'm not too worried about it at this point.

I was given an explanation of the difference between mass and nodule. Nodule is hard and well defined while mass... not so much hard and well defined. I'd be concerned Anne, since it doesn't sound like your, whatever it is, has been investigated well enough to give it a solid name. If it's granuloma and you flair a bit... my experience indicates it can grow quickly.

[annekat]

I was given an explanation of the difference between mass and nodule. Nodule is hard and well defined while mass... not so much hard and well defined. I'd be concerned Anne, since it doesn't sound like your, whatever it is, has been investigated well enough to give it a solid name. If it's granuloma and you flair a bit... my experience indicates it can grow quickly.
Under "findings" it is called an "enlarging mass lesion" in the upper right lobe, measuring 3cm medial laterally. That's 1/2cm growth in 3 years. "there is some lucency along the superior aspect of the with small air-fluid level. This probably represents a small amount of cavitation." Under "impression" it says, "Pulmonary nodule right upper lobe is larger with evidence of a small air-fluid level suggesting cavitation." My doc sees it as slowly growing over 3 years, though from my point of view, we don't know when that growth happened. I did have a couple of flares during that time. I won't say I'm not concerned, but as long as I'm not flaring, I'm not going to worry about it much.

[Mark76]

Interesting....so what does non cavitated and non calcified with soft tissue attenuation mean? More or less likely Wegener’s?

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[annekat]

Interesting....so what does non cavitated and non calcified with soft tissue attenuation mean? More or less likely Wegener’s?

Sent from my SM-G900I using Tapatalk Unfortunately I haven't a clue. My lesions at time of dx were described as cavitated, but I don't think that means they have to be so in order to be WG. I hope someone else can comment on the second part of your question.

[Mark76]

Ok so had repeat chest ct...nodules have increased in size over 2 months so having a bronoscopy and biopsy to confirm. Immunologist is more certain its Wegners now 😢. Pain in sinus has increased too...wish something would take pain away

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[mishb]

Hasn't prednisolone taken the pain away for you Mark :confused1:

I think it as 2 0r 3 days after I started on pred, that I felt the most comfortable.

[Birdie]

Ok so had repeat chest ct...nodules have increased in size over 2 months so having a bronoscopy and biopsy to confirm. Immunologist is more certain its Wegners now . Pain in sinus has increased too...wish something would take pain away

Mark, the broken record returns... suppose I could be supportive, tell you it'll all be OK, pat on the head, etc... the real issue here is to be pushy, don't let time slip by waiting for doctors appointments and tests, force the time issue at every step. That's the best advice anyone can give you, it's the most critical until you're accurately diagnosed and start treatment, regardless of the diagnosis. It's more critical if it's Wegener's than if many other possibilities. Treatment for Wegener's is effective but needs to start as soon as possible to stop additional damage.

Go kick some health care ass.

[me2]

I agree with Birdie. I have suffered many times because of waiting for doctors to do their job, expecting them to do their job. Expecting them to believe me when I told them once clearly that I was suffering and in pain. Well, reality is they respond to pressure and complaints as much as to the requirements of practicing good medicine.

One time I was told that I could not be seen for two weeks. I was suffering horribly and knew that treatment was the only thing that would address it.
I went to the doctors office without an appointment and sat and waited to be seen. I told them I would just wait there until someone could see me. If not today then tomorrow- waiting two weeks was not an option. I was seen that day and given proper treatment. My suffering was not really a problem to that doctor- my sitting in his waiting room was.

Of course there are things you can do to ease your suffering but number one is diagnosis. Quickly followed by treatment. This will get you back in good shape.

[Birdie]

I agree with Birdie. I have suffered many times because of waiting for doctors to do their job, expecting them to do their job. Expecting them to believe me when I told them once clearly that I was suffering and in pain. Well, reality is they respond to pressure and complaints as much as to the requirements of practicing good medicine.

One time I was told that I could not be seen for two weeks. I was suffering horribly and knew that treatment was the only thing that would address it.
I went to the doctors office without an appointment and sat and waited to be seen. I told them I would just wait there until someone could see me. If not today then tomorrow- waiting two weeks was not an option. I was seen that day and given proper treatment. My suffering was not really a problem to that doctor- my sitting in his waiting room was.

Of course there are things you can do to ease your suffering but number one is diagnosis. Quickly followed by treatment. This will get you back in good shape.

Welcome to the choir me2. :) :) :)

[Lilly]

Hi Mark, welcome, sorry on the terms you are here, but you will get top notch info. from people here! Personally, it sounds like wegeners. Wegeners can be so different in each individual. Same area of problems, but different ways of acting....like yours seeming to be on one side. I was diagnosed 25yrs ago. 4 specialist doctors were all consulting together, because they like to have 3 positive symptoms before they diagnose. I was sick with sinus infections, ear infections, cough, that nothing would help, for a YEAR! By the time I could not walk from flaring joints and was in so much pain, some damage had been done. BUT, they only got a biopsy of my nose, and a needle biopsy of my lung. They decided against messing with my kidneys, because I was not having any issues with them. I have "limited Wegeners" which is very low kidney involvement. So, if you could be diagnosed NOW, it will save your body a lot of damage. Maybe the doctor is taking you down from prednisone to see if you start showing signs (like positive ANKA) when lowering the dose. Best Wishes, Prayers and Blessings, .....

[Mark76]

Lilly...i spoke with immunologist today...yep you are spot on. He wanted to reduce pred for those exact reasons. He suspects I have limited Wegners too. Biopsy scheduled for tomorrow apparently fairly straight forward. The only thing immunologist has wondered if not wegners is other signs and symptoms, neg anca and nodule size increase from 1.1cm to 3cm for largest. I have 4. He said normally that sort of increase is a result of an infection not Wegener's?? I also found it odd no further nodules just increase in size. He said the key will be biopsy to determine if weg or infection. So finally after pushing them (thanks birdie) theyre moving into action.

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[Birdie]

He said normally that sort of increase is a result of an infection not Wegener's??

Mine did the same thing and then biopsy result showed Wegs granuloma. Lets hope your doc is right.

[Lilly]

Hi Mark, glad things are moving on. I personally feel that the way your lungs are acting could still be wegeners. Its just such a crazy unpredictable dz. Nothing can really be "certain" or "exactly normal for wegeners"......I'm glad you are getting bx of lung tumor. I had a needle bx of mine. That's how they ended up diagnosing me. Nose and lung. All my tumors shrunk up to size of little rasins on the Cytoxan treatment given when first diag. They had to be very aggressive, I was pretty bad off. But my lungs have always had one granuloma tumor in my left upper lobe, has never changed. Never gotten bigger or smaller. It actually aches a little sometimes, but it never changes. So that's why I say, you just never know! Doctors have a hard time! I wouldn't want to be in their shoes........I am thinking about you, and ill be checking in to your progress. Take care!

[Mark76]

So with treatment how quickly do you typically see an improvement in signs and symptoms. My sinuses are the main offender?

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[me2]

My sinus symptoms started to improve the first day.

[Birdie]

So with treatment how quickly do you typically see an improvement in signs and symptoms. My sinuses are the main offender?

Really high dose of prednisone starts working in hours, really high dose (80 mg), not the 25 mg you've been on. At 80 mg I felt 30 years younger in a few hours, with most of the bothersome Wegener's symptoms nearly gone. But... that is extremely misleading.

High dose of prednisone pumps up your metabolism so it can handle the other meds and repair damage much faster. Eat a lot, watch your weight. Weight gain is better than weight loss at that point. Within a week you start to crash from the strain, it's down hill from there until reducing the dose.

The treatment is better than the other option...

[Mark76]

Indeed...really makes you think about life and what's important hey...hoping with treatment prognosis is good...i keep seeing statistics of 80 to 90%. What happend to the 10 to 20%? 😢

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[Birdie]

seeing statistics of 80 to 90%. What happend to the 10 to 20%?

Many were not diagnosed in time, while many more would be far better off if diagnosed sooner... hence the broken record...

[annekat]

Most of us that I've read of on here started at more like 50-60mg pred a day along with whatever immunosuppressant like CTX or MTX. I didn't notice quite so dramatic an improvement right away, but did start eating like there was no tomorrow, which was a good sign! I had lung involvement as well as the sinus stuff, and I felt a quicker improvement in the lung stuff. But then I'd had sinus stuff dragging on for a couple of years before my diagnosis, so it had become more established and permanent damage had already been done. The lung stuff came on within a month or two of dx, so maybe wasn't as far progressed. I can only speculate. I have read of others on here whose sinus stuff tended to drag on and on after they otherwise felt pretty well recovered. I'd say I was one of those, but now, 5 years later, I have very little sinus stuff, since my sinuses were pretty well eradicated by bone erosion. It's not as bad as it sounds.... I'm now no longer subject to sinus infections because the places for mucus to collect and fester are pretty much gone. I'm hoping you are one of those for whom it was caught early (I'd have to leave this page to look back), with little damage done, and who will bounce back very quickly with maybe a stronger dose of pred and your immunosuppressant. True, 25mg. isn't very much to start with, but I haven't looked back at your whole history. I did read it all originally, but have forgotten the details!

[mishb]

30mg pred was the highest that I was ever on, but I was taking some Mobic tablets prior to then.
However this dose was good enough to stop those massive garden slugs from forming in my sinus and making their way out into the world.
Another however, this then dried those slimy slugs up, and turned them into hard crusts that then couldn't be dislodged.
Not sure which I prefer :unsure:
Pain and slugs were gone within 2-3 days, and life felt great.

All the best for your biopsy Mark. Hopefully it gets some answers

[Mark76]

Interested to know how many on here have had relapses abd if so was treatment as long and severe as first. Do many have more than one relapse?

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[annekat]

Interested to know how many on here have had relapses abd if so was treatment as long and severe as first. Do many have more than one relapse?

Sent from my SM-G900I using Tapatalk I have had a couple of what I'd call moderate flares, which were less severe than my original onset at dx, and I might be more likely to call them relapses if I'd ever actually been declared in remission and/or these were close to the same severity as my original event. But flares are serious, too, they are more than just a couple of a days of not feeling so hot, they should show up in the bloodwork as increased inflammation level and there will be some of the classic signs like night sweats, fevers, extra fatigue, blood in mucus. Mine have usually lasted a few weeks and required an adjustment or change in meds to get over them. But I could still go on with my life, no hospital stays or anything. I think my first one was a result of being undermedicated in the first place, and my MTX was increased to a more therapeutic level. The second one was lighter, more from me just being run down, stressed, and maybe having tapered pred a little fast. So the pred was increased and I'm still in the process of tapering down from that one. Trying to taper or get off the meds , before one is really ready, is a pretty common reason for flares to happen, I think. The terminology is all somewhat subjective, but going through these things makes us very in tune with our bodies and how we are dealing with Wegs, and we become pretty good at distinguishing a flare from a cold or something else..

[Mark76]

Very interesting read....i hope my prognosis is good and live to a rightful age 😢

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[mishb]

Very interesting read....i hope my prognosis is good and live to a rightful age 




There is certainly no reason why you can't, with the correct treatment :thumbsup:

[Birdie]

Very interesting read....i hope my prognosis is good and live to a rightful age

It doesn't sound like your case is too bad. Just concentrate on understanding everything so that you can make wise choices, then keep on top of it once it's controlled.

[Mark76]

Still waiting on results but dr wasnt able to access main granuloma due to inflammation so bad grrrr...hopefully with the samples near the granuloma and brushings and washings something can be made from though. Dont want to go through that again particularly. In a good note told i can now up my pred to 50mg...oh i feel alive again no pain ahhhh

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[debra]

Mark, not sure what to say here? Except,hope he can get something for ya, and as far as the pred upping, well ok, since you're pleased, that's really all that matters! Good luck, Mark... Debra...

[mishb]

I'm glad you finally had it done. Fingers crossed that the samples taken give an answer.
Pain free, high on pred, is a great outcome from this little adventure - for the moment.

[Birdie]

In a good note told i can now up my pred to 50mg...oh i feel alive again no pain ahhhh

Be aware the pred high is short term, it results in a hard crash within a few days to a few weeks. Hopefully it will reduce inflamation, and if you have Wegener's it will slow or maybe even halt that damage. You can't stay at 50 mg forever so take advantage of it, get bitchy... get diagnosed...

[theredhead]

I also have nasal issues. My nose is always crusty. I have been on prednisone for about 14 years. I can't seem to hit remission. Thank goodness I don't have lung or kidney involvement. Try to see a rheumy.

[Mark76]

Finally been diagnosed with Wegner’s and starting treatment today with cyclo and rutiximab. Slight saddle nose i noticed today. Do most ppl leave the nose or does it get worse?

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[annekat]

Finally been diagnosed with Wegner’s and starting treatment today with cyclo and rutiximab. Slight saddle nose i noticed today. Do most ppl leave the nose or does it get worse?

Sent from my SM-G900I using Tapatalk It's always been my intuition that cyclo given along with RTX might be a good idea, for starters. I'm glad your treatment is beginning. As for the saddle nose, it seems every case its a little different. If it is slight, I'd ignore it for now, see if the treatment will stop it from progressing. Some happen gradually, mine happened all at once and never got any worse. I may never get it fixed, although I'd like to.

[Mark76]

Yeah im glad ive started treatment too...yeah the nose is only just noticeable. First things first to get better...how soon after treatment do you feel better? Do many feel side effects from cyclo?

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[jlove]

Hi Mark,

It's hard to know if there was some placebo effect involved but I felt better about a week after my first Rtx infusion. After about 3 weeks, I notice a lot of improvement and I'm a big fan of Rituximab for this reason. I would imagine starting treatment ASAP should minimize new damage in your nose and prevent the saddle nose from worsening but, as we know, nothing is guaranteed. The most important thing is you're getting the treatment now so you're doing the best possible thing for yourself!

[annekat]

I think people vary in how fast they respond to RTX, for some it is quite fast and for others it could take months. That could be a reason for giving some cyclo at the beginning, to give things a kick start. It would make a difference, too, whether you have an infusion of cyclo or take it orally in pills. I never had RTX, and had cyclo in 100mg pills (determined by body weight), along with prednisone, of course, starting at 50 or 60mg/day, I forget. I split the daily dose of cyclo and it it caused some nausea and dizziness, which I got used to little by littlre , and was sleeping a lot anyway, so didn't notice it all that much. The prednisone provided some energy and a big appetite, and it didn't keep me from sleeping or make me feel too manic or hyped up as it does for some. Later, as I got to lower doses and had it been on it longer, I found the pred making me irritable sometimes. As for the cyclo, if you get it by infusion, it may be an entirely different experience. I did find the oral cyclo shutting down the disease activity and making me feel better within a few weeks. Some damage had already been done which was irreversible, due to a delayed diagnosis. Best of luck to you.

[Middlesista]

Finished last Rituxin Mid December and some improvements but fatigue , although better, still lingers. Improvement in lungs but I just saw the report and although pulm made it sound like nodules and lesions were gone report mentions subcentimeter nodes but cavitary lesions are not mentioned as being present. Like Anne mentioned - every one seems to respond at different time lines to treatment.

Take care Mark - sound like your plan is in place and you can move forward to a healthier you.

[renidrag]

Been almost seven years since remission, not to be a downer. fatigue still lingers. WG drug free.
Dale

[Pete]

Hey, Dale! Are you getting much exercise? I know the immediate aftermath is even more fatigue, but as you feel stronger, the fatigue decreases.

[drz]

Been almost seven years since remission, not to be a downer. fatigue still lingers. WG drug free.
Dale

Seven years is great for a drug free remission, fatigue or no fatigue. Is fatigue related to organ damage like to kidneys or lungs?

[Jaha]

I am wishing you all the best with your treatments. It does take a while for the treatments to kick in, everyone is different. My Doc always said to remember that sometimes it takes baby steps, meaning that it goes slow sometimes. You are on your way now, to the road of recovery, it maybe quickly or slowly but you will get there. Take care of yourself!

[Birdie]

Seven years is great for a drug free remission, fatigue or no fatigue. Is fatigue related to organ damage like to kidneys or lungs?

Unlike some of you, I study a subject without really memorizing the details, just enough for a simple comprehenison of the issue.

What I got from studying fatigue is that it's the result of a deficiency in the chemical reactions within muscles. It's such a complex subject that I couldn't begin to fully understand it all, there are many potential bottlenecks in the transmission of those chemicals throughout the system. All I know is that they haven't found anything that will help my fatigue. For me, a good day is several hours on my feet, mildly active, in fifteen minute intervals with at least an hour of rest between each fifteen minutes of activity. That's a big improvement from my condition six months ago.

[Pete]

Keep on improving a little at a time.

[Mark76]

Day 3 after CYC treatment. Some improvement in hearing and sinuses finally. But I feel like crap as in low energy and light headed from treatment. Is this normal? How long before these side effects wear off? All to go through it again in 2 weeks time. Yay!.....oh god i hope it goes into remission permanently

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[Mark76]

Ive still got this annoying cough thats keeping me up at night....or maybe im still thinking about the fact that ive been diagnosed with this terrible disease

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[Pete]

Ive still got this annoying cough thats keeping me up at night....or maybe im still thinking about the fact that ive been diagnosed with this terrible disease

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You might want to ask your doc to Rx tessalon perles for your cough. I got relief from them.

[Dirty Don]

Mark, I took simple old Ricola cough drops...doc said fine, they had tried OTC cough meds on me...didn't work, too much mucous. The cough drops have helped, mostly they keep my throat damp so the mucous slides away...gross, but true. My sinuses were pretty much wiped out, so mucous caused coughs continue, I just control them better. Best to you.

[annekat]

Day 3 after CYC treatment. Some improvement in hearing and sinuses finally. But I feel like crap as in low energy and light headed from treatment. Is this normal? How long before these side effects wear off? All to go through it again in 2 weeks time. Yay!.....oh god i hope it goes into remission permanently

Sent from my SM-G900I using Tapatalk That's a pretty quick response. With the infusions, you won't have to feel the side effects on a daily basis like we did with the pills. Maybe you'll only need to go through that a couple more times and then they'll just stick with the RTX. Just a guess based on no experience... you probably know your projected treatment schedule. Did you get the two together, or just the CTX for starters? I seem to remember you were slated to get both, could be remembering wrong...

[annekat]

Ive still got this annoying cough thats keeping me up at night....or maybe im still thinking about the fact that ive been diagnosed with this terrible disease

Sent from my SM-G900I using Tapatalk That cough comes and goes with me according to the weather and my stress level. OTC cough syrups usually have dextromethorphan (DM) in them as a suppressant, which I avoid because it has a rebound effect and can make your cough worse. If you can find the plain guaifenesin syrup, usually called Tussin, or expectorant, without the DM, it is better, as it loosens the mucus and makes it easier to cough up, without the rebound effect. Can be hard to find, is in most big drug stores under standard or house brands, just read the label carefully. Ricola is good, too, and would like to have known about the stuff Pete was prescribed, too.

[debra]

Hey guys, raw honey, has to be raw for health benefits, is real good for stopping coughing... The one I have is raw organic unprocessed, so not heated enough to destroy the enzymes... It does work well, and its packed with natural probiotic bacteria, as well as prebiotic bacteria, to feed the probiotics... Debra...

[debra]

Forgot to add, the raw organic honey contains the bee propolis, and adds an enormous amount of health benefits... If you're interested, and it does work, go to tropical traditions website, they have it, and it rocks... If you order, there's a woman named jolie, who is awesome, not sure if she's still there, as I haven't ordered lately, but she's been there for years, and is real sweet... The site is reputable and I've ordered from them for years, and never once a disappointment... They have everything... Deb...

[debra]

Forgot to mention, and Anne will like this, crushed black, yup, pepper... If you can stand adding it, to fairly hot water, it will take the cough away pretty quick. Maybe it scares it away! Cayenne is awesome, but of coarse a lot stronger... The black pepper rocks because it also helps vertigo, and helps a lot with heartburn, and overall digestion... There's a lot, including turmeric, ect. But the black pepper is probably right in you're cabinet... Debra...

[Mark76]

Did anyone lose their voice upon starting treatment? Im hoping its temporary

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[me2]

I've had voice trouble many times over the years because of this illness and its treatments. My voice is still normal. I would bet you will see improvement within a couple of weeks and eventually be back to normal

[annekat]

Forgot to mention, and Anne will like this, crushed black, yup, pepper... If you can stand adding it, to fairly hot water, it will take the cough away pretty quick. Maybe it scares it away! Cayenne is awesome, but of coarse a lot stronger... The black pepper rocks because it also helps vertigo, and helps a lot with heartburn, and overall digestion... There's a lot, including turmeric, ect. But the black pepper is probably right in you're cabinet... Debra... This is worth a try, as is honey, but some of us get an unrelenting cough from thickened mucus that is way down in our bronchial tubes and very hard to dislodge. I rarely get this anymore but had it a couple of nights ago, it kept me awake, and no amount of honey or black pepper will touch that kind of a cough. That's why I recommended a mucus thinner like guaifenesin, a natural product made from a tree bark, used in OTC expectorants, and I advised to read the label and see that there's no DM or anything else in it but guaifenesin (maybe some sweetener added, can't help that). There are other kinds of mucus thinners, such as NA-C, which I haven't tried, but others have had good results with. I am more likely to get these nasty coughs at the end of the day when I'm tired and stressed out, and if the weather is cold and damp.

On the other hand, if the cough just won't stop and is keeping you awake, it would be OK to use some expectorant with
DM (dextromethorphan), a cough suppressant, but only temporarily! Using it for more than a few times, within a couple of days, has a rebound effect and will make your cough worse. I found this out from experience.

[annekat]

Did anyone lose their voice upon starting treatment? Im hoping its temporary

Sent from my SM-G900I using Tapatalk My main voice problems were in the 2.5 years before dx and treatment, but yes, voice problems have come and gone at different times, and definitely improved with treatment. Just give it some time. I doubt the treatment is causing the problems, it's just coincidental and would be happening without the treatment. That's my guess, though everyone is different.

[Mark76]

Does anyone know if they are any closer to a cure for this dsease? I know Mayo clinic etc are doing continual research but would be interesting to see if they are making inroads

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[Dirty Don]

No real cures yet...just newer protocols at this point. Protocol seems to be the best bet...keep at it no matter which drugs they give you...give them time to work & condition your responses to the disease. Wish there was a cure, but wishing gets us nowhere...

[Mark76]

Ok what about swollen lymph glands? Ive got swollen lymph glands on the left side where my wegeners is behind my ear. Ive just started treatment so im hoping it will go down before too long. Just curious if anyone else had swollen lymph glands though

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[debra]

Hello, Mark! That would be a yes for me, though I'm not sure why, as of yet! May hopefully know more after next week, as I have an appointment the end of the week... This has been just another mystery that came on, with all the rest of the crap. If I find out, I'll give ya a heads up, who knows, could be something more simplistic, like the thyroid? Debra...

[annekat]

Ok what about swollen lymph glands? Ive got swollen lymph glands on the left side where my wegeners is behind my ear. Ive just started treatment so im hoping it will go down before too long. Just curious if anyone else had swollen lymph glands though

Sent from my SM-G900I using Tapatalk I know I had a swollen parotid gland, which is sort of in front of the ear, near some of the lymphs.... My ENT got a successfully positive WG sample from my nose and the parotid gland, too..... Soon after initial treatment, the gland went down immediately... I think the parotid has something to do with salivation, I'm not sure, but I had no issues with that, it was just a lump and needed to be biopsied while we were there, to make sure it wasn't cancerous or something... The procedure with lymph glands might be different.

[Mark76]

Yeah not sure if lymph or parotid...hoping it goes down soon

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[debra]

Anne, interesting... Mark, even the common cold could be a cause. In my case, I have autoimmune hashimoto thyroiditis, so was thinking it may be this, as its pretty common with this... Sounds like the number five dinner at the local Chinese food take out, doesn't it? Debra...

[annekat]

Yeah not sure if lymph or parotid...hoping it goes down soon

Sent from my SM-G900I using Tapatalk If it's behind your ear, I'd say lymph, but I'm no expert. Your doc should be able to shed some light on it.

[Mark76]

Immunologist isnt too concerned he said its reactionary to the wg sinus inflammation and should subside

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[annekat]

Immunologist isnt too concerned he said its reactionary to the wg sinus inflammation and should subside

Sent from my SM-G900I using Tapatalk Sounds reasonable to me....

[Mark76]

That's a pretty quick response. With the infusions, you won't have to feel the side effects on a daily basis like we did with the pills. Maybe you'll only need to go through that a couple more times and then they'll just stick with the RTX. Just a guess based on no experience... you probably know your projected treatment schedule. Did you get the two together, or just the CTX for starters? I seem to remember you were slated to get both, could be remembering wrong...
Yeah 2 more treatments with cyc and rtx together...heres hoping it works...sinuses are still bit full but then its only day 6 after first treatment. Im guessing itll take another week or so to improve?

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[annekat]

Yeah 2 more treatments with cyc and rtx together...heres hoping it works...sinuses are still bit full but then its only day 6 after first treatment. Im guessing itll take another week or so to improve?

Sent from my SM-G900I using Tapatalk I've read on here, and it was true for me, that sinuses seem to be the slowest to clear up. It can be just like having an ongoing head cold or sinus infection for months, except worse, with all the crusting and stuff collecting in there that needs flushing out every day.. But that might not be true for everyone. For me, the lungs cleared up very fast with oral CTX and prednisone, along with Bactrim, the prophylactic antibiotic, though you might call it something else down under.....Anyway, it sounds like things are going pretty well. I think you should feel some more improvement soon.

[Mark76]

Yep bactrim here too...yeah itll be interesting to see my next chest ct...i think itll be in a few weeks time. Yeah just one day at a time I suppose...its the cough that drives me insane...causes a gagging reflex every now and then. Just noticed today acne on my back too...prob from pred...might have to get some phisohex for it

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[annekat]

Yep bactrim here too...yeah itll be interesting to see my next chest ct...i think itll be in a few weeks time. Yeah just one day at a time I suppose...its the cough that drives me insane...causes a gagging reflex every now and then. Just noticed today acne on my back too...prob from pred...might have to get some phisohex for it

Sent from my SM-G900I using Tapatalk Phisohex! I used that as a teenager in the 1960's and hadn't thought of it for 40 years or more! i don't really get acne from pred but I know some do. I remember the relentless cough, it went on for awhile and I still get it in damp or cold weather and if really stressed or sleep deprived. A mucus thinner like guaifenesin, preferably the liquid, non DM, would help. It's the same drug as in Mucinex, made from a tree bark. This would be sold as tussin or expectorant in the cough syrup aisle. This has been discussed recently, maybe on this thread, not sure. Another thing that helps bring up the stuff you are trying to cough up is inhaling steam from a bowl of hot water, towel over head, herbs like peppermint of eucalyptus added. That can help the nasal and sinus stuff, too. Best of luck in your recovery.

[MikeG-2012]

Just noticed today acne on my back too...prob from pred...might have to get some phisohex for it

Thanks for this one Mark!! I still have some lingering acne on my back too, even though I am off the pred. I wonder if this would work for me? I'll ask about it!!

Thanks for the tip!!

Mike

[debra]

Ok, so here comes helouise with a house hold tip! Apple cider vinegar, like braggs, or even reg. ,white vinegar, will heal a breakout... Vinigar is antviral, antibacterial, ect... And if you don't mind smelling like a salad, then hey... White vinegar also cleans well, and its cheap... Also for those susceptible to fungas, due to lack of immunity, vinigar does this job also... Debra...

[Mark76]

So day 9 aftet first treatment....is it normal to take backward steps??? As in had some sinus pain and sweats come back....noooooo.....nothing too bad but just wondering if its normal this early on in treatment...as in i thought it would continue to improve not take a step back

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[Middlesista]

Don't get discouraged Mark - although. I wanted things to clear up quickly after Rituxin I learned I could not force a fast heal. Eat healthy, stay as active as you can and be sure to have follow-up diagnostics

folks will say they have good days and bad days.

[me2]

One of the confounding things about this illness is the fact that it is never linear. Getting worse is not linear, getting better is not linear. I don't get too excited if in a short time I think I am getting better, nor do I get too discouraged if I seem to be going backwards a little. Expect a general trend upward from treatment and just ride out the bumps. Early on in treatment is where you expect the bigger bumps.

[debra]

Mark, these are great replies! Me2, perfect explanation! Mark, try hard to be patient, easier said than done, I know! I learn patience, more and more everyday... This sucky sickness, seems to have a brain! He's tricky, but you'll nail em!!! All the best Mark! Deb...

[annekat]

Mark, as I remember, you had an infusion of CTX along with the RTX, and since the CTX usually acts faster, you may have experienced the feeling of a pretty quick response. Now that injection may have worn off somewhat, but the RTX is still there in the background doing its work, which could take longer. I'm speculating that a little resurgence in symptoms could happen at this time, and when you get your next infusion of both CTX and RTX, you could experience another period of great improvement. Eventually, the RTX will ramp up its positive effect and you will maintain the improved feeling for longer periods of time. That is my theory, worth a couple of pennies, as I'm not a doc nor have I used RTX or anything but the oral version of CTX. I suppose that could be an advantage to the pills; it doesn't wear off as long as you keep taking it every day.

[Mark76]

Thanks all for your support...i get alot of that and answers from here so glad i found this forum

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[Mark76]

Ok so got 1st week blood results crp hone from 120 to 8 which is great but interestingly my white blood cells are still elevated. I thought the role of cyc was to reduce the wbc to put it into remission??? Immunologist said pred could elevate the wbc so could it be that my inflammation just gone down cause of the pred and because my wbc are still elevated not treating the disease?

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[Middlesista]

Your CRP was 120 and went to 8 - that is progress!! I see Prednisone increasing WBC frequently - did they do a differential ? That shows the breakdown of the different WBCs. The fact that your CRP is down indicates that the inflammation has decreased.

[Mark76]

Yeah neutrophils still slightly elevated too

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[JBee]

Mark, like you I can remember feeling so frustrated with my slow progress in the first weeks and months after diagnosis. My rheumy reminded me that this is a serious illness and I would need some patience to let the drugs do their work. I'm on methotrexate and prednisolone, so different to you, but my lung nodules did clear and the other issues improved. Now 11 months later and some fatigue is still with me most days but very much improved, and my blood tests are all within normal range. I was told that the pred causes an increase in WBCs but that they should come back to normal as the dose reduces.

[Mark76]

Oh thats all good news....yeah i guess i keep thinking its like any other illness where you get medication and clears up pretty much straight away....i need to learn patience 😊

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[Mark76]

Quick update ive got my 3rd round of cytoxan and ritiximab this week...yay time for like crap again...haha...as long as it works thats the main thing...anyway question for you....i lost partial hearing in the left and when i received high dose 3x 500mg of prednisone it cleared up next day. About 4 weeks later its gone back to partial loss again 😕. Has anyone experienced this or had hearing loss and its returned back to normal after treatment and if so how long did it take to return?

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[annekat]

Mark, sounds like things are moving along for you.... As for the hearing loss coming and going with high doses of prednisone, that is a good sign that the loss isn't going to be permanent....I'd guess that your eustachian tubes are inflamed, which is allowing fluid to build up in your ear, thus the loss, and the pred relieves enough of the inflammation to open them back up again and release the fluid, allowing hearing to return. I suppose there are other possible scenarios, as the hearing mechanisms are complicated. Just be glad they have caught it early enough to treat you in time to likely avoid permanent hearing loss. As for the amount of time it takes for hearing to return, I can't say, as my loss is permanent, and everyone's case is a little different. Best of luck in all of it!

[Mark76]

Thanks annekat...one further question with the treatment does this improve the sinus fluid. I thankfully have no more pain or inflammation and bleeding since starting treatment but should the treatment fix the sinus fluid also with time or will that need to be managed by decongestants etc??

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[annekat]

Thanks annekat...one further question with the treatment does this improve the sinus fluid. I thankfully have no more pain or inflammation and bleeding since starting treatment but should the treatment fix the sinus fluid also with time or will that need to be managed by decongestants etc??

Sent from my SM-G900I using Tapatalk The treatment should help the sinus fluid over time, and daily rinsing, also called irrigation, with a saline solution via the NeilMed squeeze bottle, a neti pot, or a water pik with nasal attachment is highly recommended to keep the stuff loosened up, hydrated, and ready to be flushed out. There are mucus thinners such as Mucinex (guaifenesin) and others, and use of decongestants shouldn't hurt, I don't think. Some use steroid sprays to minimize inflammation in the area. I think Nasocort is one that is OTC. Drink lots of fluids! Best of luck with everything.