What would you do if in a similar circumstance?

[Palmyra]

Hola to the group,

I have a question to pose to the group experience. (Note: I am a support/caregiver to my daughter. She was originally diagnosed w/ Weg in 2006. Prior to that she was dealing with refractory Crohn's disease. Her primary drug to address Weg has been Rituximab and occasional oral prednisone. Her last RTX infusion was a series of two, more than six months ago. Involvement has been principally pulmonary and upper respiratory.)

That said, approximately 10 days ago she came down with a respiratory virus that was making its rounds within her group of friends and family. Her symptoms came on in the same fashion as her husband's and my own.

She soon developed unilateral ear pain, which in her past (frequent ear infections) has been associated otitis media infection. She put a call in to her local ENT
and without requesting an appointment they called in an antibiotic to her pharmacy. It was for moxofloxicin (avelox) which is in the fluoroquinolone family. My understanding is this is a rather heavy hitting antibiotic, and not one to be messed with. Please note her history of Crohn's...and I will await group discussion regarding this drug, its side effects and the manner in which it was prescribed.

Many thanks,
Jane

[annekat]

All I know is that I have used two of the flouroquinolones, Levaquin and Cipro. Levaquin was used on the third try to knock out my original severe bilateral ear infection after trying more commonly used drugs. The Levaquin worked. I took Cipro later for sinus infections, and some other antibiotics, too.

My main concern with the flouroquinolones was when I looked them up online and found that some people had had bad reactions to them, in the form of extreme joint pain, ruptured tendons, things like that, and that sometimes it would crop up months after taking the drug. A friend told me this had happened to her cousin and that I should stay away from those drugs. In fact, I did have pretty severe joint pain during the week after taking Levaquin. Then I had joint pain recurring a couple of times months later. HOWEVER, all that time I did not know I had Wegs, and in retrospect, it may have been Wegs joint pain, and in the later incidences, most certainly was. So I will never know for sure whether that drug caused the pain. I had no problem that way with Cipro. I never used Avelox. But it might be worth bringing this up with the doc who prescribed it or the pharmacist, and doing some research online.

I hope someone else can shed more light, and can address the issue of the Crohn's history.

[pberggren1]

Yes, Avelox is fairly potent and hard hitting but certainly not considered one of the big guns. I have been on it a few times in the past and it seemed to work okay. I used it for sinus infections. Back in 2009 and 2010 I had a long recurring sinus infection that just strung itself a long for over a year. It finally did clear up.

I am more concerned with her respiratory symptoms. Does Alison have previous damage to her lungs from Wegs or another infection? Like cavitating nodules that would be a perfect spot for bacteria or fungus to hide out and grow?

Is she on any pred right now? Usually with ear pain like that pred is prescribed as well, usually 50mg for a few days or 2 weeks.

Please keep us posted. Both the lung and ear stuff could be related. It could easily be Wegs.

As soon as I have any symptoms pop up I go to the lab right away for a poke and pee to see what my numbers are. Has she been to the lab recently?

[Palmyra]

Thanks Phil and Anne,

Phil,

You are very experienced in such matters, so I am glad to hear from you that you do not consider Avelox to be a big gun. That said, it does concern me that it was prescribed over the phone, and with no warnings as to its possible side effects or consideration of her pre-existing Crohn's.

My father had a very bad experience w/ levaquin (near death), and I know of two other weggies that have had ruptured tendons as a side effect. She had to have bilateral carpal tunnel surgery after prolonged prednisone exposure and stress on her wrists. Her joints are simply not in great shape and very reactive to both Weg and meds. The colitis as an added feature only makes stronger antibiotics more of a hazard for her gut.

To answer Phil's questions, she has difficulty seeing docs quickly. Part of that is her own reluctance and part is the sickness within the US medical system itself. She lives in a fairly large sized (1 million +) city, and getting in to see any of her docs for a quick 'poke and pee' can mean waiting two weeks for that appointment. I am sure that is why the Avelox was simply phoned in. She could go to a 'regional clinic', but they would be staffed by GP's or worse and be clueless as to what tests to administer, and will have never seen a Weggie before.

As a part of that picture, yes, she has had lung involvement from Weg. She has not had pulmonary infection of a fungal or serious bacterial nature, but she has had plenty of Weg damage (lower right lobe is compromised). She does have episodic lung pain, that is either due to a partial lobectomy or as one of her early symptoms of a flare. She has had aspergillous infection of her sinuses that required several debridements and surgeries to treat associated structures (turbinates opened, tonsil and adenoidectomy). Her ears, sinuses, lungs and joints are usually symptomatic when the weg dog starts to bark.

Sounds like its time to see if current problems are Weg related, and make sure there are no creepy opportunistic infections lurking in hidden necessary organs. I don't know when her most recent chest CT was, but it has been awhile.

JT

[drz]

On my last flare I had both ear drums rupture from infection and soon was put on similar antibiotic. The pharmacist warned me about the tendon risk. My local lab two blocks away has several orders on file for various lab tests and I usually go in and tell them what tests I wanted done for what doctors and let them figure out the paper work and get any orders if needed so the results can be sent to my doctors elsewhere.

My Wegs doctors are familiar with my history and previous lab numbers and after he reviews the results he can order any treatment or make recommendations to my local internist who could then issue the script for whatever meds I should get. Also my treating doctor for Wegs and Wegs consultant have both reassured me that if I flare they will see me quickly after I get down to their clinics if I am able to do so. On my last flare I went into local hospital and was treated by proxy and it worked well. This was also done when I was recovering in a nursing home after my first major hospital stay.

Last week I noticed some sensitive areas near my BAHA incision area and had some symptoms that gave me concern about possible infection. My regular ENT doctor saw me next day and reassured me it did not look like infection but offered to give me an antibiotic if I thought it necessary to prevent an infection which cause a flare. I declined since I have already developed allergies to several antibiotics and want to save them for times I really need them.

Generally too I have found ER doctors and Walk in clinic doctors willing to run the tests needed if I explain my concerns to them. They know they don't know much about about treating Wegs so seem to appreciate any advice they receive and have consulted with my treating doctors when necessary. The usually run the lab work for inflammation markers and infections, check my lungs and ears and nose for signs of infections and give me feedback on what they see and think. They don't always bat a 100% as one time the local ER doctor didn't think my ear drums were infected or likely to rupture but they did a few hours later but he was not an ENT specialist.

People like Vdub who travel a lot also gets lab work done around the country and has results sent to his treating doctor so he must have orders he carries with him or has his doctor fax the such orders to local clinic where ever he happens to be at the time. Getting the necessary lab work should be possible without too much difficulty although it may take a little effort.

Best wishes for better health and hope you can get whatever evaluation and treatment appears appropriate for situation.

[Palmyra]

Many thanks DRZ and Phil,

I appreciate your input knowing that you have both had significant hearing damage due to Weg. Her hearing is impaired, but I do not know to what degree. It has never been tested! I hope she is willing to make an appointment and get into see someone and address all these issues in a much more comprehensive manner, including tests to determine current immune status and presence of any lurking infection.

Best regards,
Jane

[pberggren1]

I have had Avelox prescribed over the phone twice. I just told my ENT what my symptoms were and he phoned it in to the pharmacy. My symptoms were extreme sinus pain.

I can certainly understand your concern of Avelox and Chron's. With Chron's diet is a big deal and of course with anyone on any antibiotic taking a good quality supplement of probiotics is in order as well.

I have a standing order at my local lab and can go in any time for a poke and pee. Don't you guys down there have it set up like that as well?

I hope the Avelox helps Alison but I think a jump in pred may be in order as well.

[annekat]

I, too, would be wary about Avelox phoned in for someone who'd never taken that sort of drug. Probably it will be OK, but I think doctors are very remiss in not going over the possible ill effects of such drugs. Pharmacists have usually been the ones to fill me in on those things, and I always read the paper info that comes with the meds. My ENT actually drew a blank when I told him of my pains after taking Levaquin, and just said "we'll remember that for next time". I was debilitated enough that I had to have someone drive me to my appt.

Aside from the joint pain, the possibility of ruptured tendons is a big deal. With both Levaquin and Cipro, I had read the literature so knew about this, and with both drugs, I could feel twinges in my tendons going up and down the stairs. I was just very careful and avoided injury.

Then again, I assume many people take these drugs with no problems. I just don't think docs should be so lackadaisical about prescribing them unless they know the patient tolerates them well.

BTW, Jane, I also have pretty significant hearing loss and wear aids. It is mainly conductive hearing loss due to dysfunctional e-tubes, though one ear incurred a moderate amount of nerve damage, too. My ENT does not think the e-tubes will become functional again or that putting tubes in the drums will help. I think I have "glue ear", so there is no room for any air in the middle ear. That is my uneducated understanding of it. Best of luck to your daughter in getting her hearing loss evaluated, and I hope it turns out not to be permanent.

[Palmyra]

Many, many thanks. Once again I will echo the sentiments of many on this site...this forum is such an invaluable tool! There is so much collective knowledge here, all focused on the same condition and its baffling possibilities.

She stopped taking the avelox after 5 doses due to muscle pain, extreme fatigue and GI symptoms. Could be the Weg dog talking at the same time. The sad news is that her sinus and ear were on their way to feeling better. She still feels mild pressure/pain in her right ear. Phil, I do believe you are right about a short burst of pred to consider along with treating any infection.
She also has on her things to do list today. Get in to actually see/talk to and touch a doc that is familiar with her, (call and make an appointment for the future w/ a new ENT that a fellow member on this board recommended) and call her rheumy.

Many thanks for the comments, and I will keep the group posted on updates.

Hugs to all for better health,
Jane

[annekat]

I will say in retrospect that I'm glad I took the Levaquin since it was able to knock out the ear infection after 2 others failed. But that would be a personal decision, whether to risk possible long term muscle and tendon problems. I wonder if there are any equally strong antibiotics not in the flouroquinolone family that might have worked? I also forgot to mention my doc followed this with 5 days of half hour IV infusions of Rocephin (not sure spelling or name), a strong one only available in IV, to guard against the possibility of mastoiditis following such a long and severe ear infection. No thought of Wegs at that point, of course! 2.5 years before my dx.

I was also prescribed "pred bursts" during this time along with the antibiotics, and later with subsequent sinus infections that cropped up. But at some point the ENT started backing off on the pred, thinking I'd had too much. Little did he know!

[drz]

I will say in retrospect that I'm glad I took the Levaquin since it was able to knock out the ear infection after 2 others failed. But that would be a personal decision, whether to risk possible long term muscle and tendon problems. I wonder if there are any equally strong antibiotics not in the flouroquinolone family that might have worked? I also forgot to mention my doc followed this with 5 days of half hour IV infusions of Rocephin (not sure spelling or name), a strong one only available in IV, to guard against the possibility of mastoiditis following such a long and severe ear infection. No thought of Wegs at that point, of course! 2.5 years before my dx.

I was also prescribed "pred bursts" during this time along with the antibiotics, and later with subsequent sinus infections that cropped up. But at some point the ENT started backing off on the pred, thinking I'd had too much. Little did he know!


My Wegs consultant said my years of ear and sinus infections probably set the stage for the Wegs to develop later. So maybe?????

[annekat]

My Wegs consultant said my years of ear and sinus infections probably set the stage for the Wegs to develop later. So maybe????? Oh, yes. But I'd never had an ear or sinus infection in my 58 years until this happened. The subsequent sinus infections were blamed on allergies. But I think I may have had Wegs the whole time, or most of it, so either the ear infection triggered it or was a symptom of it... my ENT thinks along the same lines, and seems like a common story on here. But if I'd been having ear and sinus infections for a long time, like you, without necessarily having Wegs, I think it sounds plausible that they'd set the stage for it!

[mishb]

My Wegs consultant said my years of ear and sinus infections probably set the stage for the Wegs to develop later. So maybe?????

I think everyone has different ideas.

I have had ear and throat infections since the 1960's and sinus infections since the 80's or 90's and wegs didn't come on until 2009.
Not once did my ENT's say that they could be related.........it's crazy