LUPUS UK
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Myco + increased sinus symptoms anyone?

Am posting this question because I'm beginning to realise that since starting myco in jan 2014 I've had an even more constant tendency than usual to sinus stuffiness, runny nose and post nasal drip (down the throat)....But I haven't had more than one session of heavy duty feverish blocked sinuses & headache. So, I'm wondering: has anyone here on forum noticed daily myco resulting in increased sinus symptoms?

all my 61 year old life I've had chronic sinus probs. Sinusitis is is one of the conditions my rheumatologist has kept listed in that top section of the clinic reports titled 'diagnosis' (there are several other conditions listed there inc SLE).

Of course, as my lupus is infant onset, this sinus trouble could well be a key secondary to my version of lupus...I do know my rheumatologist is particularly concerned re everything oral about me and seems to include the sinuses, upper GI & upper respiratory tract in this pkg of concern. Some here may remember that my sinusitis flared badly along with the long term upper jawbone osteomyelitis & a triple + nasal passage staph infection only 3 or so months after my lupus rediagnosis when my first systemic lupus treatment finally began with hydroxy in 2011....this sinusitis etc flare came on immediately after getting a flu jab

That was the beginning of multiple clinic investigations & long term high dose antibiotic treatment (maxillo facial + ENT etc) during which ENT got me doing daily neilmed sinus rinses (if you don't know this stuff already check it out - Amazon does it....it has helped me a lot ever since. I only use it daily when extra poorly, otherwise just weekly. no doubt everyone knows that OTC sinus sprays are only for vvvv short term usage as frequent usage can cause the symptoms they're meant to cure). I also do the dietary & lifestyle management routines recommended for chronic sinus probs. So, I'm kind of 'sinus aware', and doing my best to minimise this stuff

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Very common in autoimmune folks...I don't get it myself but I've known a few with similar symptoms: you could be reacting to something. Seasonal change? Or if you think it's myco, must be myco.

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Yes, thanks omega...I too get the impression sinusitis is common with us....over the years I've been tested re allergies but the nhs has never identified my sinusitis as allergic...and it's much the same regardless of weather & season

I don't dare let myself actually think myco is implicated in my sinus symptoms having become a bit worse as of January 2014 when I started daily myco...this worsening may just be coincidence....but myco certainly doesn't seem to be clearing my sinusitis up....whereas myco has definitely minimised most of my other conditions & symptoms (those that hydroxy hadn't helped much)...I totally love myco (even if it is aggravating my sinuses)

so, I'm just curious whether anyone on forum has linked an increase in their version of sinus symptoms to starting up on myco

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Have you looked up on its side effects profile yet, Barnclown? I looked it up. It looks like a very beafy drug. Infection of sinus is listed at the top. As you know toxicity is a real problem. If you're worried about it, may be worth phoning your consultant?

I have relatives with sinusitis (severe) with polyps. It's autoimmune which runs in our family lines, I think.

Side Effects

List CellCept side effects by likelihood and severity.

The following side effects are associated with CellCept:

Common side effects of CellCept:

Acute Infection of the Nose, Throat or SinusSevere

AnemiaSevere

Bloody UrineSevere

Chest PainSevere

CoughSevere

Decreased White Blood CellsSevere

Fluid Retention in the Legs, Feet, Arms or HandsSevere

High Blood PressureSevere

InfectionSevere

ThrushSevere

AnxiousLess Severe

DiarrheaLess Severe

DizzyLess Severe

Fast HeartbeatLess Severe

Feel Like Throwing UpLess Severe

Head PainLess Severe

Incomplete or Infrequent Bowel MovementsLess Severe

IndigestionLess Severe

Stomach CrampsLess Severe

Throwing UpLess Severe

Trouble BreathingLess Severe

Urinary Tract InfectionLess Severe

Infrequent side effects of CellCept:

Bleeding of the Stomach or IntestinesSevere

Decreased Neutrophils a Type of White Blood CellSevere

FeverSevere

Inflammation of the Large IntestineSevere

Joint PainSevere

Overgrowth of Gums Onto TeethSevere

Underactive ThyroidSevere

AcneLess Severe

BackacheLess Severe

Chronic Trouble SleepingLess Severe

Disease of the NervesLess Severe

Leg CrampsLess Severe

Problems with EyesightLess Severe

RashLess Severe

Ringing in the EarsLess Severe

Swelling of the AbdomenLess Severe

Throat IrritationLess Severe

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Thanks omega

Severe sinusitis with polyps is dreadful. I feel v lucky ENT hasn't found polyps in my case...so far. I hope your relatives are getting good monitoring + treatment that helps

Yes, back in December & jan, before I decided to start myco, I did read this myco info & noticed the sinusitis along with other side effects...then I checked with my drs for the most common probs their patients experience + asked others who are taking myco how they've done. no one expressed concern about my chronic sinus issues. No one mentioned experiencing an increase in the intensity of persistent sinus probs.

Now, 10 months after starting myco, i'm feeling better than I have since my 20s and am experiencing LOADS of myco benefits, and I had been feeling relieved I haven't noticed any persistent side effects...BUT because I'm trying to systematically review my condition in preparation for my next rheumatology clinic appt, it's dawned on me that this relative increase in my sinus symptoms intensity could be down to myco.....

So, I'm not feeling worried yet, but I am interested in whether anyone on forum has experienced sinus symptoms persistently increasing when they started myco.....and, so far, it's looking as if our forum members haven't had sinus probs brought on by myco....but we'll see what replies turn up in time

meanwhile, am v grateful for your help looking at this.....

Take care

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Hi Barnclown I know this is an old posting but I was searching for something on sinus problems and this came up. I have never in all my 48 years had any sinus problems whatsoever, until now just 6 months after starting on Myco. I'm completely miserable with them, awful stuffiness, unable to breath properly, painful burning sensation in my nose and of course impossible to get a nights sleep. My Sjögren's seems to have worsened also. I have read all your postings on this and picked up some good tips but was wondering how you are now, has there been any improvement?

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V glad you posted! Sorry you're living with this too. Since this thread began, I've found a few others who wonder what part myco maybe playing in sinus symptoms flaring this way.

Who really knows what this is about...could be pure coincidence, but?

I've had chronic sinusitis pretty much from my earliest years. Sometimes it needs antibiotics, but usually I manage with OTCs. Since a big bad infected flare in 2011-12, I've managed to slightly damp my sinusitis down by conscientious Neil med sinus rinsing 2x daily. But this year I got a bad head cold which made me resort to sudafed spray 3x daily for a week. And then I had to increase the rate of neilmed rising. Right now I'm back on 2x daily rinses...just accepting that sinusitis is normal for me, and feeling v glad it's not worse all the time

BUT when rheumatology discovered I had hypogammaglobulinaemia in February during blood tests prior to beginning IV biphosphonates for osteoporosis, our head of rheumatology asked me to stop daily hydroxy and referred me to immunology. I had my first immunology consultation last week inc loads of blood tests. The immunologist asked a lot about my chronic sinusitis. He & my head of rheumatology say that neither hydroxy nor myco rarely cause hypogammaglobulinaemia...and my gammaglobulins were already low before starting these meds. These consultants say they suspect I have a chronic immunodeficiency pre existing my lupus treatment, and my SLE is secondary to that. But we'll see what these investigations turn up. I am being "watched" for Vasculitis...but at 61, after a lifetime of lupus & plenty for years with sjogrens, my feeling is: bring it on

hope you figure out what your version of this is about...hope you'll let me know when you do....

Wishing you all the best

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