Cold, flu or flare

[John S]

The last 3-4 days I have been feeling terrible. Sore throat, congested sinuses, run down, loss of appetite, For the last two days I've brought up those big old nasal crusts that remind me of caterpillars or a Dr. Who villain. Today I'm feeling better. More alert but still feel very depleted.
Every time I feel bad, I start thinking that it is related to Wegs. I try to watch out for those thought patterns but the presence of the big crusts have got me concerned.

[Masha]

Hi John,
I just went through this. If you refer to the thread ‘moves fast’ You will see where Alysia refers to difference between infection from immune suppressed vs Wegeners flare. Since mine was in my chest I saw my ENT. It was bronchitis, and he said if it had gone into pneumonia that would have been a flare. Fortunately we caught it in time. If you are concerned, go see your ENT ASAP. Both my husband and I now have miserable head colds and we are staying in, not just to take care of ourselves, but to prevent the spread to others. Remember, seniors have a very high probability of fatalities from cold and flu, now couple that with an autoimmune disease and we will not throw caution to the wind.
Masha

[annekat]

The last 3-4 days I have been feeling terrible. Sore throat, congested sinuses, run down, loss of appetite, For the last two days I've brought up those big old nasal crusts that remind me of caterpillars or a Dr. Who villain. Today I'm feeling better. More alert but still feel very depleted.
Every time I feel bad, I start thinking that it is related to Wegs. I try to watch out for those thought patterns but the presence of the big crusts have got me concerned.Hi, John,
I can see why you are concerned, especially with the nasal crusts... How were you feeling before all this? What were your symptoms when first diagnosed? Not that they'd necessarily be the same for each flare, and everyone is different. I've only had two moderate flares since diagnosis in April, 2011, after getting things under control with treatment. I remember the warning signs as night sweats and a moderate fever, along with extra fatigue and maybe some joint pain. I, too, had the crusts, but not just during flares; it took a few years for those to wind down. So maybe by now you have a better sense of whether this feels like a flare or some other common malady. Actually, one of my flares seemed to be triggered by a cold that was fairly mild but sort of dragged on, and the flare-like feelings eventually crept in. So watch out for that. And I would watch for blood in the crusts, as that is likely a sign of a flare if it appears regularly. It might be time to get your blood checked for inflammation markers and other Wegs related tests . If it's a flare, you might just need a little adjustment in meds.



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[John S]

I went to an Urgent Care doctor this morning. He said that my lungs didn't sound like bronchitis, when he looked into my sinus he could see it was inflamed. He recommended Mucinex with Sudafed and prescribed an antibiotic just in case.

[annekat]

I'm glad you got some help. Sometimes the gunk dripping from your sinuses can get into the windpipe and make it sound like asthma or bronchitis. What he prescribed is standard for a sinus infection but my ENT always included a short run of Prednisone as well, which really helped. This was before he or anyone realized I might have Wegs. Another good thing that thins the mucus is NAC, or N-Acetyl-L-Cysteine, an amino acid available at vitamin and supplement shops. It won't say anything on the label about thinning mucus, and it may take a week or two to work, but I find it better than Mucinex, and I take 600mg twice a day. It makes it easier to cough things up so you can breathe better. But it's just something to keep in mind if the stuff you were prescribed doesn't work. Best of luck, and I hope the antibiotics work.

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[[email protected]]

All this discussion regarding nasal crusts and flares is too familiar. It appears from this thread that we all have to be wary of the opinions of Vasculitis-ignorant physicians - and from personal experience there are too many of them. If you read the ANCA-related vasculitis literature it becomes apparent that each of our relapses must be accessed individually by an expert. Some of us will begin with only these pesky nasal crusts. FYI, Mucinex makes my nose drip like a faucet instead of helping the situation & worsens my cough. ANCA levels or other disease markers cannot reliably be use as reliable relapse indicators - these are often not elevated once we've been treated with immune suppressants. Anyone can gain access to the Birmingham Vasculitis Activity Score online and enter in current symptoms to gain somewhat of an objective idea. But treating early relapses fast cannot be overemphasized in order to prevent further complications. How many of us visit urgent care & inadequately trained physicians for our care? Too many of us! Not that we can't get colds like anyone else but relapse symptoms change over time & if we think it might be a relapse, it may be. One of the number one important things for our ongoing care is to be seen regularly at a leading known Vasculitis center.

[John S]

On Jan 23 I had a blood draw and my SED rate was 11. I really think that I am experiencing a flu rather than a flare. I do have some Prednisone handy so I took 5 mg this morning, despite that fact that I hate the stuff.

[[email protected]]

Unfortunately sed rates don’t reliably go up in relapses (although you would think they would!). Also, take it from experience, to treat ourselves with prednisone is both potentially dangerous and it confuses our clinical picture no end. What is the usual medication you’re treated with for relapses?

[John S]

I appreciate your input. I saw the rheumatologist at Loyola in Chicago on the same day as my recent blood draw. I'll see my specialist in Cleveland Clinic in March. If my current symptoms continue, Ill be calling both of them.

[Masha]

John,
Sounds like you are in great hands. Hope the Chicagoland weather warms up for you.
Masha

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Best to you Masha and John. Let me know if I may be of support. One Rituxan infusion down, 1 to go. The. First time i’Ve had 1 gram every 2 weeks. No one qualified is following my care locally. May have to move.

[drz]

Unfortunately sed rates don’t reliably go up in relapses (although you would think they would!). Also, take it from experience, to treat ourselves with prednisone is both potentially dangerous and it confuses our clinical picture no end. What is the usual medication you’re treated with for relapses?

I am on a pred booster taper down half way back to my normal maintenance of 5 mg daily. It has been a while (few years) since I needed some extra pred for my GPA symptoms. I also had a minor increase in my AZA maintenance meds for a few days too.I was surprised about how fast the pred boost of 3x regular dosage seemed to reduce my GPA flare symptoms. In the past my labs often followed my symptoms but not this time even though some symptoms like frequent nosebleeds seemed worse than in the past. My local lab has proven to be very erratic on doing the ESR test correctly since it requires accurate manual timing and they only get it correct about one third of the time, depending upon the skill of person doing the test. They do the CRP test OK so my doctors and i use that to assess whether there is any inflammation. In the past I was lucky that my ANCA scores mirrored my symptoms but not this time, probably from being on maintenance meds and in drug induced remission for several years.

I gave upon on seeing a world renown GPA expert since I found out I get better and faster service from the rheumatologist who initially treated me and he consulted with the GPA expert that I later saw, mainly for their research study and follow up evaluation. He can and would consult with the"experts" if we felt it necessary.

I think the main thing is to trust and have confidence in your treating team and to replace any doctors that don't seem to warrant your trust. Local ER doctors have often helped me in two ways. Some times they find another problem causing my symptoms and stress, like the flu or bronchitis or sinus infection etc. Some doctors have asked for my thoughts on what might be best way to address my presenting issues and have often followed my suggestions. This works fine if I have assessed my situation correctly and know what treatment is needed but is dangerous if I misdiagnose my problem but often we know our body and symptoms of GPA better than anyone else. And if we have been through a similar situation several times our guesses are usually very good.

[Masha]

If you have the freedom to move, then by all means put your health first. Is it back to California for you?
Be safe.
Masha

[Masha]

drz,
Sounds like you are good at staying on top of things. I never gave thought to the labs not doing the work properly.
For many of us it is impossible, due to travel and distance, to see the very finest Rheumatologist. As long as we stay knowledgeable about the treatment of this disease and are aware of what our bodies are telling us, we respond. I now see a specialist for everything. No one stop shopping. As you say you must TRUST those treating you. Just like in a marriage, trust is everything. And who was it that said ‘trust but verify’? It is late and I am sleepless.
Masha

[John S]

Update, no giant crust today. Feeling a bit more energy. The throat is not quite as sore. Think I'm coming out of it.

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I appreciate your input. I saw the rheumatologist at Loyola in Chicago on the same day as my recent blood draw. I'll see my specialist in Cleveland Clinic in March. If my current symptoms continue, Ill be calling both of them.
Lucky you! Two major heavy hitter specialists! We have no one to call. I’m in touch with Dr. Calabrese at Cleveland but he has “suggested” we see a Vanderbilt Rheumatologist who appears to be unavailable to us. Oh well. I tried.

[John S]

Lucky you! Two major heavy hitter specialists! We have no one to call. I’m in touch with Dr. Calabrese at Cleveland but he has “suggested” we see a Vanderbilt Rheumatologist who appears to be unavailable to us. Oh well. I tried.

‘Contact Dr. VillaForte at. The Cleveland Clinic

[richard052018]

John: glad to hear you are feeling better, and not to hijack your thread, but it is nice to see a post from drz, and that things are improving for you as well. I read a few week back you were having a flare and got concerned. Hope you are both doing well.

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‘Contact Dr. VillaForte at. The Cleveland Clinic

Thanks John.
I was unable to get appts with Dr. Calabrese or Dr. Langford so made appts with Dr. Villa-Forte. What is she like? How should we prepare for the culture shock of appearing in Cleveland later this month from Nashville for possible extended medical visits, tests, care? Cold weather gear, I would expect.

[annekat]

KWNorton, I have heard nothing but good about Dr. Villa Forte. I'm sure Pete in Ohio will be chiming in soon.

Anne

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[John S]

Thanks John.
I was unable to get appts with Dr. Calabrese or Dr. Langford so made appts with Dr. Villa-Forte. What is she like? How should we prepare for the culture shock of appearing in Cleveland later this month from Nashville for possible extended medical visits, tests, care? Cold weather gear, I would expect.

She is the best! An angel! You will love her.

I usually stay at the Intercontinental Suites. Be sure to ask for the Cleveland Clinic patient rate if you stay there. They have a shuttle bus that will take you to the Crile building. Check the weather listings before you go and know that conditions around the Great Lakes change quickly and often .

[richard052018]

If you have any concern about Dr. Villa Forte, you need to check out who wrote the Merck Manual for GPA:

https://www.merckmanuals.com/professional/musculoskeletal-and-connective-tissue-disorders/vasculitis/granulomatosis-with-polyangiitis-gpa

FWIW: don't get concerned if on your first visit if one of the residents does your initial interview, Dr. Villa Forte will make her grand appearance, and you will be blown away by her knowledge. Biggest thing I like about seeing her/talking to her is she has literally seen it all, and was able to quickly mitigate some issues for which my local Rheumy really had no clue. Not to take away from my local Rheumy, who is great, and I'm satisfied with her care, it is just surreal though to go see a doctor that can make a legitimate claim of being one of the best in the world.

[Pete]

Dr Villa Forte is awesome!! My first appointment with her was in 2012. It was supposed to be an hour and 40 minutes. Two hours and 10 minutes later, she had all the information she needed. She sent me downstairs for labs (the only time I know I was tested for c-ANCA, p-ANCA, and PR-3) — all were still positive. She put me on mtx. According to her, I’ve had my lifetime allotment of ctx.

I suggest you establish a myChart account with Cleveland Clinic. This will give you an e-mail connection to her and will allow you to see your records.

She responds to e-mail within 3 working days. If it’s urgent, I’ve called her and she responds that day. It may be as late as 10:00 pm.

In summary, she’s thorough, she listens, and she’s generous with her time.

[Alysia]

Considering the difference between flu/ cold or flare - if one has the flu he will get better in 7-10 days without any treatment. If its wg flare he will get worse in time without adding wg treatment.

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Considering the difference between flu/ cold or flare - if one has the flu he will get better in 7-10 days without any treatment. If its wg flare he will get worse in time without adding wg treatment.

This is true! But oh those interminable 7-10 days waiting and feeling as if the world may be coming to an end.

Oh well, most of us are so accustomed to the return of suffering again and again that we just get tougher with time.
Not fun! Finished with 7th RTX infusions but feeling ICU sick. Won’t go to hospital of course- who would?

[Alysia]

This is true! But oh those interminable 7-10 days waiting and feeling as if the world may be coming to an end.

Oh well, most of us are so accustomed to the return of suffering again and again that we just get tougher with time.
Not fun! Finished with 7th RTX infusions but feeling ICU sick. Won’t go to hospital of course- who would?

How sick are you after rtx ? When did you get it ? Do you have fever ? In some cases you should go to the hospital.

[[email protected]]

How sick are you after rtx ? When did you get it ? Do you have fever ? In some cases you should go to the hospital.

Nowhere to go here in Nashville Medical people are so clueless here would not submit to a useless ER visit although I would likely qualify for ICU sick Have to make it until visit at Cleveland clinic a week from Tuesday. No fever. GI involvement. Tachycardia, high BP on Beta Blockers & Ace inhibitor. Thanks for asking!

[Pete]

Nowhere to go here in Nashville Medical people are so clueless here would not submit to a useless ER visit although I would likely qualify for ICU sick Have to make it until visit at Cleveland clinic a week from Tuesday. No fever. GI involvement. Tachycardia, high BP on Beta Blockers & Ace inhibitor. Thanks for asking!
[email protected]

Found this doc on the Vasculitis Foundation website:

CAPIZZI, STEPHEN A., M.D.
Mid State Pulmonary Associates
(http://www.healthgrades.com/group-directory/tennessee-tn/nashville/mid-state-pulmonary-assocs-2d3f4463)300 20th Avenue N. #503
Nashville, Tennessee 37203
Phone: 615.284.5098 (tel:615.284.5098) Fax: 615.284.5385 (tel:615.284.5385)

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Thanks so much for thinking of me & sending info on Dr. Stephen Capizzi. I actually ran across his info myself and called for an appointment. Found out he limits his practice to Pulmonary vasculitis and doesn't deal with systemic disease. We will need to move and soon!

[Pete]

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Rats!!!

[Masha]

Is this all as a result of your infusion? Did you have any of these things happen in LA? Sorry you are going through all of this. Just had my infusion Friday and was able to do an all out shopping trip to Costco today.
Maybe after you meet with Dr. Villa Forte you will decide Cleveland will be your new home. I grew up not far from there. My only complaint BRRR, Lake Erie winters are cold. Sending prayers to you in Nashville.
Masha

[Alysia]

Nowhere to go here in Nashville Medical people are so clueless here would not submit to a useless ER visit although I would likely qualify for ICU sick Have to make it until visit at Cleveland clinic a week from Tuesday. No fever. GI involvement. Tachycardia, high BP on Beta Blockers & Ace inhibitor. Thanks for asking!

Can I ask what is your GI involvement ?
Since the end of 2016 I have developped also collagenous colitis and after almost every rtx IV I get a week of crazy diarrhea. I checked in my colitis group and another lady who gets rtx for another disease also has this reaction.

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Can I ask what is your GI involvement ?
Since the end of 2016 I have developped also collagenous colitis and after almost every rtx IV I get a week of crazy diarrhea. I checked in my colitis group and another lady who gets rtx for another disease also has this reaction.

No frank Colitis or symptoms. Abdominal pain, suspected liver involevment (based on past scans, labs). Also now suspect kidneys, as having severe colicky pain over both kidneys. Happy I will be in Cleveland this week!