Sjogren's + Vasculitis

Hi Jennifer,

Just revisiting your post to stress to anyone out there who might misunderstand that I wasn't suggesting a completely DIY approach to handling our condition. Totally agree that we all need to be under some kind of medical supervision because SS can occasionally turn ugly.

I gave up on rheumatologists years ago as both the ones I saw were only interested in pushing powerful medications (and neither even mentioned, let alone diagnosed, SS). I really struck oil when I moved house and changed GP three years ago. The current one is very knowledgeable - dare I say unusually knowledgeable? - about SS and auto-immune conditions in general. Every six months I get a 45-minute consultation with him plus full blood work - the results run to at least four pages - so I always know where I am. And it goes without saying that I see my dentist and ophthalmologist regularly too.

Like you, I think the best approach is the belt-and-braces one - managing our own condition and retaining the option of evaluating suggested treatments for ourselves, while being monitored by a medical team we trust.

Actually, a rash doesn't have to itch - the definition is any kind of skin eruption, itchy or not.

Oops! ... proving once again that my own personal definition of a word is useless when it leaves me unable to communicate with others. Thank you, Lily.

(And the entire world - almost - now knows that I must get a lot of itchy rashes, lol)

Sounds nasty, aitarg. Are your rashes down to candida? I've had intermittent outbreaks of this all over my body all my adult life. I've had two long courses of systemic anti-fungals in the past, but even they only worked for about three months. Anecdotally there seems to be a strong link between candida and SS. In fact my oh-so-conventional GP even goes so far as to state that candida is the root cause of SS and many other auto-immune conditions. If anyone is wondering how that works, please PM me rather than discussing it in open forum. We've already had an entire thread deleted over that one!

At the moment, I just apply an anti-fungal/steroid cream as necessary, but never for more than four or five consecutive days per month. I find this works just as well as the long-term approach that is normally recommended, and without overloading my body with steroids.

Unfortunately on the latter point, my GP has just diagnosed late-onset asthma, possibly with early stage COPD, as the result of an unprogrammed coughing fit I had during a recent consultation. I'm supposed to use a steroid inhaler twice a day from now on. Hmm... Only on day 5 so far, and already the side-effects are far worse than the asthmatic cough. Methinks I'm going to push for a specialist referral for a proper assessment of lung capacity, rather than the quickie test my GP did. I want to be sensible and do the right thing if I'm really at risk of COPD but I don't want to be stuck on steroids for life (albeit low dose) if it's not necessary.

Nope, never had Candida per se in my 61 yrs. I accidentally sensitized myself in both skin and sinuses back in the '80s by using most every cleaning product made (& overly perfumed) in the States, helping a friend clean a vast house in a humid part if the country. So I have occasional bouts of whole body itchiness. Mosquito bites drive me nuts. Bites or stings from other bugs to which I am not allergic always lead to cellulitis. There are worse things in life.

As to COPD, I have the chronic bronchitis form. Have a doctor other than your GP interpret results on any lung tests you have. One coughing fit does not equal COPD. Even for me, some coughing fits are solely about things in the air (including pollen, dust & perfumes) and not really about COPD.

What side effects are you having from the inhaler?

I sympathise over the allergy thing. I have that as well as candida. As a teenager back in the early 60s I worked for three years as a lab assistant in the customer service lab of a company that supplied electroplating equipment solutions and equipment. We did test platings using samples sent in by customers in the open lab, with air bubbling through the solutions in the test baths and no fume extraction. Wouldn't be allowed these days - particularly with kids working in that environment. It was the constant exposure to nickel salt spray that sensitised me for life.

Yes, I will indeed get the asthma/COPD thing checked out properly before sentencing myself to lifelong use of a steroid inhaler, much as I trust my GP. Side-effects of the inhaler aren't too dire, but since I only get half a dozen attacks of asthmatic cough per week in the tree pollen season and in exceptionally cold weather, and maximum three actual asthma attacks per year on average, it seems crazy to subject myself to a "cure" that's worse than the disease.

The most annoying is a sudden rush of inaccessible itching in my mouth, throat, eustachian tubes and lungs. Same as I get if I try to eat hazel nuts, pears or yellow apples (I have oral allergy syndrome) so I'm clearly allergic to something in the inhaler too! This is followed by an inevitable attack of wheezing, which only lasts about five mins but is uncomfortable. Since the asthma itself rarely causes wheezing attacks every single day this seems a bit much. For several hours after this I have an annoying (non-asthmatic) cough of the kind I get if I take expectorant medicines for too long in my rare attacks of bronchitis.

I think I'm going to over-rule the lovely Dr. V on this one!

Yikes, Lily! Yeah, I'd stop that stuff right away. When you said side effects, I expected to hear some of the standard stuff, but man alive, it sounds to me like you're allergic to the inhaler. I assume you rinse with water after each use and do not swallow the rinse? Myself, I can inhale steroids for lung treatments and I can use a little topical steroid cream if necessary, but I can't have steroid shots nor can I take steroid tablets.

Pollen and molds are terrible here in Texas. Something awful is always in the air. We even name certain periods after the prevalent irritant to which everyone reacts after living here for 2-7 yrs. Guess that's true most everywhere.

Thanks for the feedback, aitarg. Oh yes, I do rinse thoroughly and spit after each use, as I can't stand the terrible dry feeling it gives me in my mouth. It reminds me of my early days of SS! But the stuff makes me cough so much, each time I cough it feels like another dose comes up into my mouth and I have to rinse again. I doubt whether I absorb much of it anyway - I just cough it straight back again.

This is my first-ever experience of steroids other than for topical use. As mentioned above, I've used a miconazole/hydrocortisone cream on a few consecutive days per month for years now, to keep my candida eruptions under control, and I tolerate that very well. But I guess that's not the same as snorting the stuff!

Hi aitarg - is that your name backwards btw?

Hope your symptoms are still under control.

Revisiting the question of the inhaler... I actually didn't stop using it, but cut use to once per day. I cope better with the side-effects in the morning than at night. That means I'm getting just 100mcg betametasone per day, which I don't think is enough to do any harm. Main reason for continuing was I didn't want to disappoint my doctor. I realise I tend to bully the poor man (makes a refreshing change!) so I thought it would be nice if when I go back to him in September I could show him I really had given it a fair trial, as the inhaler has a dose meter on it.

I still get the itching immediately after use but it's not getting worse. However, I must say it's made a big difference to the persistent productive cough I always get during the tree pollen season, so maybe it is protecting my lungs from potentially dangerous inflammation, as the doc said. I think I'll stay with it till my allergy season is over, then see how I go. Next week I'll be spending a few days 500 miles south of here, in a region I've never visited before, so I'll certainly be taking it with me - just in case there's something nasty lurking in the air down there!

The only real downside is that the short-lived mouth dryness I was getting after each use is starting to last longer as time goes on, in spite of careful rinsing after use, and the corners of my mouth are starting to feel sore, like the bad old days. I'll watch that. I don't want to go back there again.

Hi Lily

Yes but I don't broadcast that, here or anywhere else.

Sounds as tho you may have found as good a workaround as is possible. I understand about the doc. Just pay attention in case anything worse happens. Perhaps for your mouth you might try some of the things used by Sjogren's sufferers. When all else fails, there's always olive oil!

Hope your trip goes well and that the distance takes you to a place with all different pollen. If you're not there for a couple of years, no allergies. What is that distance, Edinburgh to Cornwall?

Aitarg

Sorry Lily, I was thinking we were in the COPD discussions when I made that reference to trying things we SS sufferers use. You know all about that. Brain fog much???

Don't worry about the brain fog, I think I must have invented it!