Low WBC, fevers, night sweats, and so on

[genko_b]

Still feverish, still night sweats, shortness of breath, dry cough, and no clue what is causing the lung problem. Now I'm working with a pulmonologist who focuses on rheumatological lung problems and my rheumy has been consulting with an infectious disease specialist who has give us a couple new lines of inquiry. So hopefully next week we'll have some more information.

I'm still off the methotrexate and the CellCept until this is solved, and also quarantined at home (it feels like the 1950's). One of the likeliest diagnoses at this point is methotrexate lung disease. I'm hoping that does not turn out to be the case.

Take care,

Genko

[Bucky]

((Genko)) . . sorry you still are feeling poorly and are under home quarantine.   

I hope this coming week will bring you some answers and some relief.

Take care,
Bucky

[ashbones]

i always have a dry cough and it's frustrating! i also heat up during the night...while i'm sleeping i'm told i'm like a hot water bottle..not so good in summer! i have no idea why though!

[Chickpea]

Hi Genko

It's good to hear that you've been referred to a pulmonologist who specialises in rheumatological lung problems.  Did you get the impression that he/she is well informed about Sjogren's?  Be careful not to watch too much TV or you'll imagine you're in an episode of House!

Have you noticed any changes from coming off both Methotrexate and CellCept?

Being quarantined at home must feel very strange especially for you when you have such a busy and fulfilling life.  Having got to know you a little over the past few years I'm sure you'll be making the most of the good bits - eg the Weather Channel - and learning from the challenging times.

Thinking of you - Chickpea

[genko_b]

It has been warm and sunny here for the last few days, and it is all I can do not to go out into the garden and "just do a little clean-up." All my bulbs are coming up, except the tulips! Don't imagine I'd last very long with this shortness of breath.

Chickpea - In response to your question, I truly have not noticed a difference coming off the methotrexate and CellCept for this past month. I also went off of them both for the month my husband and I were in Vietnam and Cambodia, figuring I needed whatever immune system I could muster while traveling. To be honest I didn't notice a difference then, either.

One of the conversations I want to have when this is over is whether or not to resume either or both of these meds.

I met with the neurologist today for my annual check, and he is a bit nervous about my being off the CellCept for so long. The only times I've been out since the beginning of the year are to go to the doctors.

As soon as I learn anything I'll pass it on.

Genko

[jazzlover]

Also get checked for babesiosis. Can cause shortness of breath and fevers.

hugs!!!!

[genko_b]

Today I had a chest CT scan and a Quantiferon TB Gold test, which is a much more sensitive test for TB, from the blood.

Tomorrow I'm having a bunch more blood drawn (good luck to them finding a working vein!) and then a bronchoscopy, when the pulmonologist will be taking a number of samples and checking for a number of possibilities. I'm not looking forward to the bronchoscopy but it is the best way to find out some of this stuff.

Irish, the reason they had not yet done an acid sputum culture is they can't get enough sputum, with my cough being so dry. But they will collect samples tomorrow and be able to run all sorts of tests. Once I know something I'll give you all a report.

At least my fever is somewhat lower, but I'm still dealing with night sweats every night.

Take care,

Genko

[Bucky]

Genko - wishing you all the best on all your procedures tomorrow - I hope the results will give the doctors some answers as to why you are feeling so bad.

I hope things will improve for you ASAP, Genko.

Hang in there.

Take care,
Bucky

[irish]

My gosh, I had forgotten that you had been in Vietnam and Cambodia. I hope they are checking your for all the diseases that one can catch in that part of the country. I imagine there is a long list of diseases and some probably arn't seen that much in the US. Good luck. Irish

[genko_b]

I'm back from the bronchoscopy but don't have any results yet. The doctor said my chest CT scan yesterday was "very very abnormal," which doesn't sound good. No results from the TB test either, or the other blood work. They did yet one more chest x-ray before I left, to see if the interstitial effusion is still spreading.

They did take numerous tissue samples for biopsy, as well as a bronchial lavage to grab whatever they could in the way of possible clues.

My fever is better, and the cough less persistent. Except for the fact that the lungs appear to be getting worse, everything points to me getting better. So it is a deep mystery.

The infectious disease doc who always checks us prior to traveling is right downstairs from my rheumatologist and hopefully he will be helping with any potential exotic diseases.

Take care,

Genko

[irish]

Genko, Boy, this is really a mystery isn't it. I will keep you in my prayers.

At least it sounds like they are pulling out all the stops in order to get a diagnosis.You certainly have something going on that is most likely infectious and could be affecting your fibosis. Hurry, is all I can think to pray to the Heavens so that they come up with an answer. Good luck. Irish

[Bucky]

((Genko)) - hugs to you, dear friend.  I hope the doctors get their reports back quickly so they can get you feeling better again.

I know I don't like the "waiting game" for test results - as I'm sure you don't either.

You're our Master Gardener here and I'm sure you are anxious to get out in the gardens and give some TLC to your plants.

Have a restful weekend and we'll keep praying they find some answers for you.

Hugs,
Bucky

[genko_b]

I just came back after spending the morning at the pulmonologist and rheumatologist's office. The short version is that a number of the cultures are not done growing out. The jury is still out on TB of various sorts, MAC, and fungal infection. So far everything else has come back negative. It may well be that whatever started this will not be detectable at this point, so we may never know.

The rheumatologist did confirm that the damage in the lungs appears to be an infectious process and also that the very high C-RP and sed rates I have been seeing this month are beyond what one would expect for auto-immune activity alone.

I mention all this because I think it is important if you begin to have lung difficulties that you take it seriously and not let the diagnosis drag out. If I had it to do over, I would have insisted on a pulmonology consult at least a week earlier.

The rheumatologist reminded me also that even when we are not on immunosuppressants, anyone with Sjogren's or lupus is more susceptible to infection such as this simply because our immune systems are out of whack.

Take care,

Genko

[genko_b]

Just learned that I do not have tuberculosis - very good news. It means I'm out of respiratory isolation, so I can move around and visit more.

The doc also sent samples out to an infectious disease specialty lab to test for all sorts of exotic possibilities, and some of those won't be back until next week. But it will cover any possible bugs picked up in southeast Asia last year.

Genko

[irish]

I hope that they are also looking for and checking for any parasites/worms, etc that can be deep in tissues. Hate to even think about it, but after watching the Mystery Diagnosis you see all sorts of things that you never heard about. Hope this all goes well.

Glad you don't have TB and are out of isolation. Irish