I Think I Have A Flareup

[beeinformed]

Hi!

Since the end of November, I've had increased nasal symptoms (sinus pain, stuffy nose, nasal drip) and ear symptoms (fullness in ears, high pitched tinnitus sound (in addition to my daily tinnitus sounds) ,ear popping and some hearing loss). I've also had increased joint pain and fatigue, as well.

In the past, when I experienced the above symptoms, for me, that meant I was having a flareup. I recently saw my ENT specialist, who tested my hearing and have lost some hearing in my left ear (affecting the low and high frequencies). I also had a positive tympanometry, which showed I had pressure in both ears (mild).

Unfortunately, at my last office visit with him, I was too fixated on my hearing problems and did not discuss with him, the nasal symptoms I was experiencing as well. So now I have an appointment with him next week and he will use an endoscopy to examine my nose.

Since I also had for the past month some pain in my eyes, as well, I've scheduled an office visit with my eye doctor in two weeks.

At my last office visit with my rheumatologist, he said that he would increase my medrol medication and/or add an additional immunosuppressant, if both find doctors find evidence of inflammation

I've had a long history of vasculitis involvement besides the eyes, ears and nasal symptoms (including other goodies such as
central nervous system involvement, skin rashes, etc, etc), so I am a bit reticent in increasing the medrol and/or adding an additional immunosuppressant as I've had alot of intravenous cytoxan given to me in the past for the CNS involvement I had, so hopefully this flareup can be managed with minimal additional medication.

I also wanted to add that prior to this current flareup, back in September, my hearing had improved (which showed up in the audiometry tests I took in Oct) and in general, I was feeling better back then, so I am a bit frustrated over this setback.

I am just wondering if anyone has had similar symptoms such as what I am experiencing and what did your doctor recommend for treatment, if any and also how do your cope with this illness, when you are having a flareup? Thanks! :smile1:

[Jaha]

Yes, I too am in a flare. I just went from 6months of cytoxan to cellcept in Nov and was down to 10mg preds. About the first week in Dec I got really bad joint pain, ear pain,nerve pain,and a fever of 102. I went to the ER and I had a UTI ( which is due to suppressed immune system). They gave me antibioditics and sent me home because of what I could caught in the hospital,per my doc at CC. My sed rate was at 82 and all my #s were a bit off. After six days of the meds they called me and said that med was resistant to the bacteria, so went on 1000mg of cipro. Meanwhile the joint pain increased to hardly being able to walk and it was Christmas time, with 27 people coming to my house. Anyway my sed rate was at 87 and C reactive protein at 7.3 on 12/19 called my doc a she raised my preds to 30mg and it was a Christmas Miracle. I really am feeling much better but once again it is a set back to treatment. I have a hard time coping some days, but thoughs days that I'm up, I'm up!
Jana

[Trudy]

So I wonder how many others are having a 'December' flare. My doctor wanted me to lower my pred (20 mg pred, 100 mg Imuran) and I said I'd wait till January. This month I have had increased sinus problems, eye pain, ear pain, joint and tendon problems. On the bright side my breathing has been fine! I think the added stress of so much to do with the holidays really can cause a flare, and no matter how well you try to prepare it sometimes still sneaks up on us. I did take an extra 5 mg of pred midday a few times, otherwise I would have ditched my company and headed to bed. New year is coming and hopefully better health for all of us.

Anyone else had to fight a holiday flare????

[Thakator]

Yes, Trudy, I too am experiencing a holiday time flare. But, not from the stress of the holidays. It's from finally getting my pred. taper down to under 10mgs. and finding that the Wegs is tearing at the door again as a consequence. Was hospitalized for it but at least not in the intensive care unit as was the case with all my other past hospitalizings for Wegs and at least I got out before Christmas itself.

Beeinformed, I can't speak to your question regarding your symptoms since I am primarily a lung guy in this Wegs world. However, in answer to your question regarding a flare, I'd say I handle it by being ever vigilant (not paranoid or overly consumed, just vigilant) to the onset of one. (We each learn our own symptoms and bodily warnings in this regard.) And, when the vigilance fails or the Wegs breaks through too quickly, I usually handle a flare in a hospital bed. So, my answer to your question would be to simply take no symptom lightly, to not hesitate in contacting your doctor and to not try and tough it out. After all, a flare can become a raging inferno if not attended too in a timely manner! Good luck, Ron

[Al]

With your history, I am rather surprised that the rheumy did not jack up the steroids immediately. Your ear issues sound like classic granulomas in the tubes. This would be detectable by the scope. What did the ENT find?

As for the holiday business, I would point out that there are a lot of infectious agents around that could annoy the immune system into a tizzy, and this is a time of year that, for many reasons, we may be at a low ebb anyway. Both my main flares started in January....

Al

[drz]

My last flare was in March and my symptoms were sinus infection, ear infection, eye infection, and bronchitis. I had lots of large blood clots in my nasal passages when blowing nose or doing sinus rinses. I wasn't sure if the infections caused the flare or if the flare caused the infections. My treatment was lots of antibiotics for a month, adding some nasal prednisone, and increasing my azathioprine 50 mg for six weeks. Eventually after several weeks things returned to normal with no such symptoms and lab work back in normal range.

This month I had another sinus infection and bronchitis but got an early start on the antibiotics and so far have managed to avoid any flare.

[Sangye]

Beeinformed, are you on any other meds for Wegs?

Jaha, Trudy and Ron-- I'm sorry to hear you're all flaring. I hope the Wegs dog goes back to sleep with a short lullaby. Take it easy. :sad:

[beeinformed]

Hi Sangye,

I just take 8 mg. of medrol and it seems it might not be enough for me at this moment. I hope this current flareup resolves on it's own without having to take additional immunosuppressants.

I hope I don't seem like I am jumping the gun about whether or not I may need additional immunosuppressants but I am just a little curious, have you ever heard of rheumys prescribing sub-theraraputic doses of immunosuppressants for their patients such as 50 mg. of immuran and/or 7.5 to 10 mg. of methotrexate, for example, in addition to being on a low maintenance dose of steroids? Thanks! :smile1:

[drz]

Hi Sangye,

I just take 8 mg. of medrol and it seems it might not be enough for me at this moment. I hope this current flareup resolves on it's own without having to take additional immunosuppressants.

I hope I don't seem like I am jumping the gun about whether or not I may need additional immunosuppressants but I am just a little curious, have you ever heard of rheumys prescribing sub-theraraputic doses of immunosuppressants for their patients such as 50 mg. of immuran and/or 7.5 to 10 mg. of methotrexate, for example, in addition to being on a low maintenance dose of steroids? Thanks! :smile1:

These are often the starting dosages but are usually increased to a therapeutic level if the patient can tolerate the meds.

[Sangye]

I've seen people kept on low doses even after the intro period. There's probably a time and place for it for certain people, but as a whole I don't think it's a good plan. Docs do it to avoid using larger doses, but the person winds up staying on it longer and with disease that is only partially-controlled. Then they use occasional spikes in pred to control flares instead of using the immunosuppressant as the main engine. I've never seen a Wegs specialist do this. It's common with docs who don't see much Wegs.

[Al]

I've seen people kept on low doses even after the intro period. There's probably a time and place for it for certain people, but as a whole I don't think it's a good plan. Docs do it to avoid using larger doses, but the person winds up staying on it longer and with disease that is only partially-controlled. Then they use occasional spikes in pred to control flares instead of using the immunosuppressant as the main engine. I've never seen a Wegs specialist do this. It's common with docs who don't see much Wegs.

I think this is because most docs do not fully integrate whatever they know about the immune system (if, indeed, they learned all that much in med school). In part, I blame the specialist system for this, which does a couple of bad things: It encourages the Big Fish in a Small Pond syndrome--a demigod in a very small universe; and it discourages cross-specialty assessment of the situation. Wegs is, almost by definition, a kind of meta-specialty. A good wegs doc is, of course, a specialist, but also far more of a generalist, in an important sense: willing to integrate many fields and overlapping symptoms.

Al

[pberggren1]

This is true Al about a Wegs doc being able to integrate many fields and overlpping symtoms.

[Al]

This is true Al about a Wegs doc being able to integrate many fields and overlpping symtoms. Thanks, Phil--I forgot the all-important word, "able".

Al