Nasonex: Is it the CAUSE of my immune deficiency?

[elained]

Dear PID angels and friends,

Can it be that my 15 year (plus) twice daily use of Nasonex is the cause of my suppressed immune system?

This is from Drugs.com, about Nasonex

Immunologic
Immunologic side effects may have included the danger of infections from immune suppression. No conclusive evidence is available to support an increase in tuberculosis or viral infections in patients receiving nasal mometasone. The use of mometasone nasal (the active ingredient contained in Nasonex) in patients with these conditions is not recommended by the manufacturer.

My husband, the retired research Immunologist suggested this to me today.

My Google research shows 'some evidence'.

I can't stop it immediately: I would have to taper off. And my night time breathing problem from chronic rhinitis would become a nightmare.

But better that nightmare than a lifetime of infusions, all the while undoing my immune system with one little spray in each nostril twice a day!

This is from rxlist.com

Systemic and local corticosteroid use may result in the following:

Epistaxis, ulcerations, Candida albicans infection, impaired wound healing [seeWARNINGS AND PRECAUTIONS]
Cataracts and glaucoma [see WARNINGS AND PRECAUTIONS]
Immunosuppression [see WARNINGS AND PRECAUTIONS]
Hypothalamic-pituitary-adrenal (HPA) axis effects, including growth reduction [seeWARNINGS AND PRECAUTIONS, Use In Specific Populations]


I continue to be amazed at my husband's training as an immunologist and his a abiity to make connections.

In 2011 I hoped it was a drug I was taking that is known to suppress immune systems. I stopped and after a year, my numbers didn't change except to go down a tiny bit.

Now I'm banking on the Nasonex effect.

I'll keep you all posted.

It's ALWAYS SOMETHING. (my new mantra)

Elaine elained

[john]

Hi Elaine,
I've been thinking about this post for a few days and not really known what to say!!!
Most of us with Pids spray something or other up our noses on a daily basis, because it seems to me that the sinuses are where most of us end up with our pains.
However, speaking for myself, I never used a nasal spray until after I was diagnosed, and when I started to get excruciating sinusitis.
So is this a chicken and egg situation you're dealing with, like maybe you didn't know you had CVID when you started spraying, and are pointing the finger of blame at a med that helped you through undiagnosed pid, and didn't cause it??

[s162216]

Elaine, as I detailed in your other thread CVID is a genetic condition, nothing that you're taking/taken is going to have caused it. If it immune suppressed people to that degree then that nasal spray nor any other corticosteroid or glucocorticoid based medicine would be allowed to passed by the regulatory authorities and your not even taking it systemically (i.e as an oral medication) because the nasal spray will be rapidly absorbed onto the nasal passages (I am using my professional knowledge as a soon to graduate [2 months] pharmacologist) and would be unlikely to get into the circulation in any great amount unlike if your taking prednisone for instance which does cause immune suppression as it designed is taken to be systemically distributed throughout the body to act systemically.

Sorry but thats the sad truth of the matter, its your own genetics.

Sam

[elained]

Thanks Sam,

I rather guessed this. In fact, I think now that another condition I have previously attributed to medications (not this one) probably is more related to my autoimmune condition of Sjogren's Syndrome.

My Rheumatologist, the one that found the immune deficiencies in 2011, postulated that my extended use of Macrobid, for chronic UTI's, may have caused my profound Peripheral Neuropathy.

During the chronic UTI's, Interstitial Cystitis was diagnosed, as well. Another auto immune condition, very frequently connected to Sjogren's Syndrome.

My genetics are bizarre, I guess.

This part, CVID, really didn't kick in until fairly recently, at least I surely haven't had the severe and frequent infections that have been the primary feature for so many others.

I doubt if my immune factors were ever tested before, or if they were, no mention was made, so I guess they were normal.

How odd to first have them tested at age 69. And find several factors to be rather low.

Perhaps the fact that my IgA is in the normal range is part of the reason for fewer infections?

I honestly cannot understand the varieties of combinations of factors and how they affect people. perhaps this is still not well understood.

At this point I'm having more blood work done tomorrow. And my meeting with the Research Immunologist at Duke Medical Center who specializes in CVID is scheduled for the end of May.

At that point her advice will determine my course of action.

I have been sick far more frequently in the past two years, about 3 weeks out of every two months, but not hospitalizations, and only once did I think to ask for an antibiotic. My usual course is to assume that it's viral and won't respond to an antibiotic.

It was the increase in infections, after two sets of blood work, a year apart, confirmed that my immune system is indeed below normal, that prompted me to finally follow up on the idea that my immune system 'problem' might be affecting me.

As far as I can tell, just having an immune deficiency isn't 'bad', only the infections that set in and wreck havoc with your body. And the treatment only puts in the immune factors that are missing, at least a part of them.

I really appreciate the time and care that you have shown in responding to my concerns.

My husband had come up with the idea that Nasonex my exacerbate problems with my immune system, so I put it out there for those 'in the know' to consider.

Thanks so MUCH!

Hugs

Elaine

[s162216]

Elaine I can identify with you not having the frequent infections etc, I was diagnosed completely by surprise about 3 years ago as I kept getting an inconclusive result from the ceoliac disease blood test which works on the presence of IgA antibodies against gluten and obviously if you don't have the IgA itself then the test doesn't work! They decided to test all of my immunoglobulin levels and all of them were lowered compared to the normal range, the IgG being low enough for them to pretty much immediately start me on IVIG. I didn't think I had had too many infections (about 3 chest, upper respiratory tract and skin [from my insulin pump cannula]) in the past 2 years but my new immunologist was concerned I had that many and started me at once. The reason why some people with CVID, XLA etc have recurrent, severe infections throughout their life and others might only have a few more before it all suddenly goes downhill is unknown but its likely there is some sort of activating factor and there are about an estimated 40 different subtypes of CVID (of which only 6 quite rare types have the genetic mutations known) so thats a likely factor.

Sam

[elained]

Thanks, Sam.

I had the most recent blood work drawn today.

The HUMORAL IMMUNOCOMPETANCE PROF. and the Streptococcus pneumoniae IgG Ab(23 serotypes)
were ordered to be done.

So I guess these will be the defining tests!

How low was your IgG? Mine is pretty good I think, at 328 in Fall 2011.

I'll let you all know what is found.

Hugs

Elaine

[s162216]

Mine was 3.00 g/l (same as 300 mg/dl), the normal range is 5.5 to about 12 but it should ideally be above about 8.00; 3.28 g/l is quite low so I can fully understand why your doctor wants to start you off on IVIG/SCIG as soon as possible. I imagine that you'll have/had a vaccine response test at some point as that is the major defining test for immunodeficiency, if you can't form a response against the vaccine then your immune system is obviously not working.

Sam

[elained]

The second test yesterday was to see if I have antibodies to the Pneumonia vaccine I had in 2006.

So we'll know soon!

Thanks, Sam.

Elaine

[marie]

Hii Elaine! I have used Nasonex in the past and it caused nosebleeds for me. I changed to Oxymetazoline HCl 0.05%. I use generic but I think it is Afrin. I live in Illinois. Dr said not to "overdo" it.
Best regards, Marie

[elained]

Dear Marie,

I don't think that Nasonex is the source of my immune problems. I really never did, but I thought perhaps I should at least explore it. It was my husband's idea.

I don't get nosebleeds, and it works quite well for me. If I stop using it for an extended time, my chronic rhinitis causes congestion and that is a problem for me.

I have a dryness syndrome (Sjogren's) and if I have to breathe through my mouth at night, my mouth turns into something totally alien, rather like sandpaper. Nothing even feels like my mouth.

All of my recent tests continue to establish that for some completely bizarre reason I have moderate immune deficiency, which probably developed over the past 10 + years.

In that time I have acquired a couple of autoimmune conditions, as well as Peripheral neuropathy, deafness (Meniere's) and anemia, along with preexisiting Coronary Artery Disease and Severe Osteoarthritis.

I see my specialist on May 29, and will go from there with whatever she recommends.

Thanks for your care in answering my post.

Hugs

Elaine

[mothergoose]

Elaine

I too have Interstitial Cystitis, I have been immunodeficient all my life, and I believe I have had IC all my life as well.
For me I assume it is all genetics.

[gillie]

Hi Elaine. My CVID was picked up when I hit the menopause, aged 52. By the time I was tested, my IgG was 0.04g/l so I was put on to infusions straight away! I hadn't had a lifetime of infections, but the one that put me in hospital and got me diagnosed was a shocker and I completely lost my hearing for a while. I still wear 2 hearing aids, but I manage very well. My trough levels are pretty good at the moment, around 11g/l so I was a bit disappointed recently to pick up a chest infection for which I'm currently taking the third type of antibiotic! Still, fingers crossed, I think that this one's working. With reference to your daughter, a test would be advisable. Both my daughters were tested when I was diagnosed. the younger one was fine, but my elder daughter was told that her IgA was well below normal levels. She's since had two strapping sons, so I don't worry about her very much!I hope that everything works out well for you. Please keep us posted.