Concerned newbie

[Gab122]

Hi all,

I am a bit worried today - I suffered with terrible ear pain all summer until the GPA diagnosis on aug 1. The pain subsided the first week I was on prednisone 60. Still on pred 60.

I've had occasional very minor ear pain today for the first time in about 4 weeks. Just my left ear. The last couple days I felt a new weird sensation in my ear.

I don't understand why or how the ear pain could return while I'm on such high pred and had 2 ritux infusions in August.

I know from labs that my B cells are virtually 0 from the ritux and I know from a ct scan on 8/26/16 that the granulomas in my lungs are shrinking significantly.

Is it possible that part of my involved organs (lungs) would improve while other organs (ears) suddenly worsen with disease activity while on these meds? I don't know that it's disease activity. I just am concerned. I assumed once the ears stopped hurting that they wouldn't have pain again til long from now in a potential relapse.

The only thing I'm doing differently this week is that I started taking apple cider vinegar (2-3 tsp) with each meal or carb (so a total of 3-4x per day) I'm doing that because lab results showed high blood sugar at my last infusion 245 and I just started monitoring my blood sugar a week ago. I read apple cider vin helps lower BS (and I've found its true!)

Also I'm clenching my teeth lately. My dentist told me (and I catch myself doing it.) Should I just assume that is the cause? I'd love it if it was just that.

I happen to have my next RA appt on Friday. Perfect timing. But I wanted to run it by all of you as well.

A bit scared,
Gab

[Middlesista]

Hi Gab - I truly identify with how you are feeling. So hard to know what is something to be concerned about and what is residual or from another cause. Even after treatment and with 0 B cells I had on and off vision issues - I think the eye doc got tired of hearing from me but I could not afford to lose my vision again. My concerns were residual damage to optic nerve but I can see again which is all I wanted Funny how we sometimes settle for less than optimal because we realize how bad things could be.

As as my lungs improved I still had an occ bloody and/ or runny nose and funky little rashes - what was from meds , another cause or disease hard to say. I keep a sx diary - helps me to look for trends. I am thinking my B cells should start populating again and the docs said it is not unusual for initial sx to present again but reading folks posts that does not seem totally universal.

Keep in touch with your docs, you have assembled a great team - my RA is great and he calls me back quickly. Any good RA knows we are folks that need to be monitored and watched closely.

[drz]

Pain in the ear often comes with Wegs. Usually it is an ear infection or from pressure caused by blocked Eustachian tube. Infections often related to our suppressed immune system. blocked Eustachion tubes can relate to damage to our sinuses which create excess mucous drainage which tend to create problems for us. In my experience it takes a good ENT to tell the difference since other doctors like usual ER or Walkin Clinic doctors often fail to assess these problems correctly. But after having a few of each it gets easier to tell the difference and to know what treatment is needed.

Any ear pain usually warrants a trip to an ENT for assessment. Loss of hearing often follows Wegs but this damage usually happens without any pain or other symptoms.

[Gab122]

Thank you for both your replies middlesista and Drz!

Drz - can you tell me more about why there is hearing loss without any symptoms? I lost 30% over the summer but the ENT I saw 3x in aug thought it was from fluid and that it had already returned by the end of Aug (based on some tuning fork type test) I think it's mostly returned. I have a full hearing test and follow up in Nov. He's at Mass Eye and Ear. So are you saying that over the years, even if I stay on top of all symptoms and go for treatment , or even without symptoms, I'm likely to lose my hearing?

I'll call tomorrow to report the pain in case they want me to come in on Friday when I'm going to Boston already. I had not thought of a possible ear infection. You may be right!

Middlesista - I like your idea about a symptom diary. I'm going to start one! I appreciate you sharing that you felt concerned and confused too. Makes me feel I'm not alone.

All You guys out there on this site are the best!

Thank you!
Gab

[blu4runner]

I have had ear issues as well My ENT has put tubes in my ears to relieve the fluid and pressure. Unfortunately my left ear refusws to keep the tube and the eardrum is attached to the bone so I now have a hearing aid for my left ear. Wishing you the best as you go down the recovery road.

[Alias]

I have frequent eustahcian tube issues, occasional minor pain in one or both ears, and severe hearing loss on one side. In my case this is just "damage done" and not indicative of any active disease. There's no progression of hearing loss in my case to date.

[Titus3:2]

Gab,my ENT has said I might as well be walking around with my fingers in my ears.Due to the damage GPA has done.When my hearing problems started abruptly years ago.The ENT doctor in charge,believed it was swimmers ear.LOL.I do not remember ever experiencing pain then or now,and I never had ear aches when I was young.Very crazy disease,but as others have stated it is easy to blame all problems on WG.Keith.

[Gab122]

Thank you for sharing your experiences Blu, Tom and Keith! I put a call into my RA this morning and I just heard back while at hair salon. She's going to check my ears carefully at my appt tomorrow but since it is fleeting and minor pain AND because my lungs have responded Soooo positively to treatment she is inclined to think it's something other than GPA activity. I don't have any fever (tho I know pred can mask that) and don't feel sick at all. (i.e. run down) - she said I could call ENT and run it by them but now that I'm home it's 5pm here- so I'm just going to see what she thinks at appt first.

To top it all off. I forgot to put wax in my ears or cover them when she washed my hair and I have tubes also. I do have drops the ENT gave me for just such an accident.
I typically don't have any facial hair but felt a little extra peach fuzz was growing on my lip so I had that waxed. What I didn't know was that my skin would over-react (cuz of pred?) and became bright as Santa's suit. I'm off to a parents night at my daughter's school tonight. See what magic I can work with makeup.

I'm learning humility.

Gab
PS. Learn from me!
DO NOT WAX while on high Pred in case that's it!