Allergies?

[NikkiNicole]

Question: OK wait ... backstory first.

I've never had allergies in 37 years. Never. I can dance around outside in the spring and breathe in the sweet smelling flowers and love that it's windy, etc.
Ever since the beginning of the week, my eyes have been itching and hurt REALLY bad. Last night, my sinuses got angry and I couldn't open my eyes, and my head hurt. Today, my left eye feels like I was punched HARD and is a little red but I am not as itchy. My ears feel like they are stuffed with cotton, my throat hurts, and my body aches and feels hard to move. Like, I can't even summon energy to put one foot in front of the other.

Here's my question ...

Allergies are an immune response. I had two infusions of RTX in February. Would I be able to suddenly have adult onset seasonal allergies after RTX?

I am not as bad off as I've seen some people with allergies. And, I can still go outside and have a great time. I honestly don't feel any difference being outside and the wind is lightly blowing crap around right now.

ANother question ... should I just chalk this up to some sort of allergy and deal with it or ... should I be upset that perhaps my RTX didn't do as well as I thought it did. Because, I've felt off for a lot longer than this. I've felt like I am going to get sick for weeks. It never gets past this feeling so I've been going about life, working out, etc.

Could I just be getting a cold/flu?

I'm so terrible at being a good Wegener's patient since I never know anything and spend most of my life living like I am perfectly normal.

*sigh*

[Pete]

For what it's worth, the answer to all three questions is maybe.

Interestingly enough, in my pre-wegs life, I had seasonal allergies to grasses, especially goldenrod and ragweed. I was also allergic to animal dander, especially dogs and horses. My reaction to allergens was similar to yours. Once I was diagnosed, my pulmonologist suggested that I take a 10 mg loratidiene tablet and two 10 mg phenylephrine tabs daily. I take a phenylephrine at breakfast and supper. This was to keep my sinuses dry and free of inflammation. The result is that I haven't had hay fever nor any reaction to my son's dog in years.

i haven't seen any progress reports on your weight loss. At last report, you were minus 80. Hope all is well on that front.

[NikkiNicole]

Thanks for always being a helpful dude Pete.
I am still at -80 lbs. I am starting tomorrow down another phase of this journey. I'll be back to eating just meat, vegetables, and fruits. Super clean, very strict (ok ... 80/20 strict). I've been doing CrossFit 3x a week and walking (and some running) on the other 4 days. I know I whine about how awful I feel but until I physically can't do these things, I am going to keep going. The working out has kept me from gaining weight during this break I"ve taken from being so strict with myself.
Tomorrow changes all that though. I call it a lifestyle phase ... how I need to be for life. Not a diet, just a way of being healthy. I think it will help all around.

I just want to feel normal.

[Pete]

Thanks for the update. Glad to hear you're doing well. I'm proud of you!!!

[mishb]

I always got hayfever so can relate to what you are going through.
What I didn't have, until diagnosed with WG,, was food allergies. Now there are so many foods that I cannot eat and that also includes fruits and vegetables that I always ate prior to this.

I would presume, since RTX is supposed to erase the immune system memory, that your system is making new memories, with one of them being allergies to the outside world at this time of the year.

We may need to pop you into a bubble :tongue1:

I hope it clears soon.
I guess if you take some benedryl or some other anti histamine, you will soon know the answer

[NikkiNicole]

Update: Its 05/08/17 ... I am even more miserable.

I went to the general doctor last Friday and then went to the Opthamologist. Both of them were like "Your eye is just inflamed". I was given some drops and sent on my merry little way. I started dropping the drops into my eye as instructed and while the redness went away, the pain has only intensified. It's spread across my face. My whole forehead, nose, both eyes, my cheeks and all my teeth feel like they are rattling around in my head.

Unfortunately, this is all very reminiscent of my journey to diagnosis. The constant feeling of having the worst sinus infection and yet ... I am not congested. I can breathe fine. I'm not snively or runny ... I am not coughing or sneezing. My face/head just hurts BAD and has for days on end. Days. Literally. Nothing is helping.

800mg of Ibuprofen? NOPE
Sudafed? (sinus relief medications) NOPE.

I have emailed my rheumatologist, and I have emailed my actual family doctor. The family doc has deferred to Dr. Belek because she believes it's could be disease related. If it's that ... well, I'm up shit creek. I am on RTX which means I have to wait it out until August before I can try anything else.

If I have to deal with this pain for 2.5 more months ... ugh.

[Alysia]

Nikki, what about taking more pred ?

[Pete]

I was on mtx and rtx together for about 18 months. The only issue I had was mild fatigue with mtx for 24-48 hours after taking it.

Assuming your symptoms are disease related, adding a med to your rtx regimen is worth asking about.

[mishb]

The pain certainly sounds like some form or neuralgia, or a sinus infection or WG :crying:

Have you had a head or sinus scan recently? This could show inflammation.

Have you tried putting your symptoms into Find Zebra, maybe you will find an answer.
If you do find something similar, the hard part would be to get your specialist to listen.

I sure hope something helps you soon