Feel worse after treatment?

[Mark76]

I have had 3 infusions of cytoxan and ritiximab 2 weeks apart. That is all the immunologist wants for me at this stage. My last infusion was 3 weeks ago. Compared to pretreatment Im a million times better and I dont have any pain but is it usual to start feeling tired this long after treatment. My bloody sinuses are still playing up too. I can hear them making noises whenever I lie down. I still have this annoying productive cough too with pink phlegm. I just would have thought that this far along I would be symptom free? ?

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[Middlesista]

Hi Mark - fatigue seemed to last months for me, got better but still have days when I am pretty tired I had last RTX in December and now on MTX and 15mg of Prednisone

[Dirty Don]

Those drugs take a while, up to 3 mos, to become fully effective. Hang in there, they will do their job. Keep an eye on the blood; it should start reducing soon. Best to you.

[Mark76]

Those drugs take a while, up to 3 mos, to become fully effective. Hang in there, they will do their job. Keep an eye on the blood; it should start reducing soon. Best to you.
My white blood cells should start reducing soon? Or the symptoms?

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[drz]

I have had 3 infusions of cytoxan and ritiximab 2 weeks apart. That is all the immunologist wants for me at this stage. My last infusion was 3 weeks ago. Compared to pretreatment Im a million times better and I dont have any pain but is it usual to start feeling tired this long after treatment. My bloody sinuses are still playing up too. I can hear them making noises whenever I lie down. I still have this annoying productive cough too with pink phlegm. I just would have thought that this far along I would be symptom free? ?

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Treatment does not necessary mean complete recovery from all damage of Wegs. Residual symptoms can and usually do persist even when you are considered in a drug induced remission. These can fluctuate in intensity and cause things that feel like mini flares.

Recovery from Active Wegs can be a long term process and usually relates to severity of your attack,your age, general health, and reaction to the treatment meds. Most people do generally show great improvement but seldom as quickly as desired. Fatigue is probably the norm for most people with Wegs even after in remission but some people do amazing physically demanding things after their Wegs attack. Sinus damage is probably the most difficult area or organ thing to get under good control and is often the most likely to flare up and show increased symptoms. Damage in sinuses from Wegs usually causes long term residual effects like excess mucous causing coughing but frequent rines and taking something to thin the mucous can make these symptoms minimal.

[Mark76]

Is it likely that my hearing will return? Again I can hear it popping intermittently. I am 40 and otherwise good health and diagnosed relatively early although quickly progressed to my lungs. Thankfully no blood

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[Pete]

Is it likely that my hearing will return? Again I can hear it popping intermittently. I am 40 and otherwise good health and diagnosed relatively early although quickly progressed to my lungs. Thankfully no blood

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I think you'll get some hearing back. I had/have a lot of tinnitus from pre-wegs exposure to gun fire (army) and loud noise at work (steel mill). Wegs left me with about a 40% hearing loss. I also could not hear high or low frequencies very well. It was kinda like listening to a mid-range only stereo. I wear hearing aids in both ears now. I'm ok in quieter environments, but it's very difficult in noisy places. I have a fuller frequency response now.

[Mark76]

Thankfully only one ear is affected but hearing aid not really an option if I wish to pursue my occupation. Is grommets an option?

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[Pete]

Thankfully only one ear is affected but hearing aid not really an option if I wish to pursue my occupation. Is grommets an option?

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I had grommets put in twice. They each lasted about six weeks before falling out. The ear eventually stabilized with almost all of the stuffy feeling going away. It took awhile, but the ear feels normal now.

[Mark76]

Hmm ok..for some reason my ent specialist doesn't want to put them in.

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[annekat]

Hmm ok..for some reason my ent specialist doesn't want to put them in.

Sent from my SM-G900I using Tapatalk My ENT didn't want to try putting in grommets because my eardrums had thickened so much from the scar tissue caused by a severe infection in both ears. Now one eardrum is eroded away and that ear can't really even be helped with a hearing aid. The other ear, everything is intact and it hears fine with an aid. But many people do get their hearing back, especially if they were diagnosed early. For me it all started 2.5 years before dx, so a lot of damage was underway before I even had a clue about WG. Popping noises in your ears, while not desirable, at least say to me that your eustachian tubes are trying to work and are therefore potentially functional in draining the ears of excess fluids. As for the other stuff you asked, I don't have all the answers, but yes, it is normal to feel a lot of fatigue for a long time and for the sinus stuff to take a long time to improve. The important thing is that you are getting good treatment with effective meds, and things are bound to improve in time.