Condolences to Kevin McHale and his family

TheMartian · Post #22 » by **TheMartian** » Mon Nov 26, 2012 5:12 am

exculpatory wrote:Tragic & absolutely heartbreaking beyond all comprehension.

There are many forms of the autoimmune inflammatory disease, lupus - much more common in women, including sadly young women. '"Malignant" = "rapidly progressive" systemic lupus erythematosus (SLE) whacks the kidneys, heart & brain - aside from skin, joints, polyserositis, eyes etc. Patients require chronic protracted therapy with large amounts of prednisone & immunosuppressives - drugs with potentially devastating adverse effects in & of themselves.

Truth will lead us to #18 in June 2013!

Wow. Didn't know lupus was that serious. I know someone who has the disease, but I don't think too much of it since she acts as if she doesn't have it.

Condolences to Mr. McHale and his family. Very sad news indeed.

cnv2855 · Post #23 » by **cnv2855** » Mon Nov 26, 2012 7:34 am

TheMartian · Post #24 » by **TheMartian** » Mon Nov 26, 2012 7:59 am

cnv2855 wrote:Lupus, not serious?

Well, if considering even mild lupus is absolutely debilitating and will prevent just about anyone from having a normal life well...

Years back, it used to be a death sentence. Now if it's properly diagnosed and treated it's very rarely fatal, that's why this is so surprising.

It differs in individuals. Some people with Lupus will have myositis (I have this) which is inflammation of the muscles. This leads to erosion of the muscles fibers, eventually leading to the weakening of the heart and heart failure after many, many years. Some people have skin involvement, some have joint involvement (arthritis), some people have lung involvement (pulmonary fibrosis - also very serious), and so forth. In each individual the severity and organs targeted differ greatly.

In my case, I have muscle involvement (i.e. muscle pain/weakness), salivary and sweat gland involvement (dry mouth/eyes), and... so forth. I'm able to live a semi-normal life and prednisone has been an absolute godsend.

It still sucks and these illnesses hurt not only the person with them but the entire family. If anyone wants to ask any question, I know TONS about autoimmune illnesses and would be happy to answer. I was a very good basketball player throughout high school before I became ill and it basically turned my life upside down.

Sorry to hear that man.

Glad to see you're holding up well.

cnv2855 · Post #25 » by **cnv2855** » Mon Nov 26, 2012 9:02 am

Thank you.

I wish people would take a moment out of their day and really be grateful for the small things in life; being able to walk when there are people who are wheelchair bound, being able to see, when there are people who can't.

I may have had misfortune in my life but I was at least able to live a very great 18 years completely healthy, and I don't have it nearly as bad as say a patient at St. Judes. No matter what you go through in life, there are people who have had it far worse.

Do not take your health for granted, take care of your body, and enjoy life because there are a lot of people out there who don't have that luxury. I'm may have a chronic illness but I am grateful to be alive, a luxury this young girl no longer has unfortunately.

Also, these illnesses are often considered invisible illness because with exception of erythematous rashes and skin involvement, you really don't understand how absolutely horrible a person with an autoimmune disease will feel on their inside. Their body is literally trying to kill them.

This girl was beautiful:

Kefa461 · Post #26 » by **Kefa461** » Mon Nov 26, 2012 12:23 pm

Heart felt condolences to the McHale family.......

exculpatory · Post #27 » by **exculpatory** » Mon Nov 26, 2012 8:52 pm

cnv2855 · Post #28 » by **cnv2855** » Tue Nov 27, 2012 6:00 pm

exculpatory wrote:
cnv2855 wrote:Lupus, not serious?

Well, if considering even mild lupus is absolutely debilitating and will prevent just about anyone from having a normal life well...

Years back, it used to be a death sentence. Now if it's properly diagnosed and treated, it's very rarely fatal, that's why this is so surprising.

It differs in individuals. Some people with lupus will have myositis (I have this) which is inflammation of the muscles. This leads to erosion of the muscles fibers, eventually leading to the weakening of the heart and heart failure after many, many years. Some people have skin involvement, some have joint involvement (arthritis), some people have lung involvement (pulmonary fibrosis - also very serious), and so forth. In each individual, the severity and organs targeted differ greatly.

In my case, I have muscle involvement (i.e. muscle pain/weakness), salivary and sweat gland involvement (dry mouth/eyes), and... so forth. I'm able to live a semi-normal life and prednisone has been an absolute godsend.

It still sucks and these illnesses hurt not only the person with them but the entire family. If anyone wants to ask any question, I know TONS about autoimmune illnesses and would be happy to answer. I was a very good basketball player throughout high school before I became ill and it basically turned my life upside down.

I am very very sorry you have secondary Sjogren's syndrome associated with lupus, especially at age 26. Most secondary SS occurs in people with RA.

Sounds like you are coping well with the kc sicca affecting your eyes & the sialadenitis resulting in xerostomia.

I am also glad to hear that Prednisone 15 mg/day (+ Mycophenolate) is controlling your lupus-induced myositis, & that your lupus has apparently not impacted your kidneys, heart, brain, joints & skin.

You are new to us & you do not know. Aside from being a fanatic, lifelong Celtic fan, I am a Professor of Medicine, an endocrinologist & a very well rounded internist. I am sure you have an excellent rheumatologist. Make sure you get meticulous & regular F/U. Also, even Prednisone 15 mg/day (approx. 2X the physiologic replacement dose) MAY have consequences if you must ingest that dose long enough. My advice to you is to ask your rheumatologist to occasionally consult with his/her preferred endocrinologist.

My best wishes & best of luck to you.

Kevin's daughter almost assuredly did have a rapidly progressive form of lupus which probably did impact her kidneys (and/or heart and/or brain). My very sincerest condolences to the family. So tragic.

Truth will lead us to #18 in June 2013!

Want to know something interesting? Mayo clinic keeps blood banks, and they tested a bunch of blood from the 40-50's and compared antibodies to blood today and they said autoimmunity has increased over 5-fold in 50 years, so theyve gone from obscure illnesses to something very common.

the5ivealive · Post #29 » by **the5ivealive** » Tue Nov 27, 2012 6:15 pm

Very sad news, may she rest in peace, I'm around her age so seeing someone like her go now is just too young and too soon. My condolences go out to Kevin Mchale and his family.

exculpatory · Post #30 » by **exculpatory** » Tue Nov 27, 2012 7:40 pm

Regarding potential adverse effects of even 15 mg of Prednisone ingested chronically:

Aside from many many stigmata of iatrogenic Cushing syndrome - DM, osteoporosis, hypertension, central/centripetal obesity etc etc etc, ask your rheumatologist about an endocrinology consultation re possible steroid-induced suppression of the hypothalamic-pituitary-adrenal (HPA) axis = central/secondary hypoadrenalism. This is important. Endocrinologists are routinely consulted for this by other subspecialists who are obliged to use supraphysiologic amounts of prednisone to treat patients with non-endocrine diseases.

When you see the endocrinologist, you absolutely should also have a DEXA scan to R/O steroid-induced secondary osteoporosis.

exculpatory · Post #31 » by **exculpatory** » Wed Nov 28, 2012 3:47 am

Fencer reregistered wrote:Sad, sad news.

And yes -- if you have to mess with Prednisone, there's a significant chance of bad side effects. I was lucky with my ulcerative colitis in that I could tolerate ANOTHER often bad-side-effect drug, which was a big issue until Asacol replaced what replaced the (ob)noxious Azulfidine, 20-25 years ago. But Prednisone and I didn't get along well at all.

Fencer, missed ya!

It is great that Asacol covers you, & you have been able to avoid prednisone.

Truth will lead us to #18 in June 2013!

cnv2855 · Post #32 » by **cnv2855** » Wed Nov 28, 2012 5:43 am

And thank you for discussing this with me. It's so nice to have an outside opinion. There's no point discussing a lot of this with friends and family because it's not something many people are educated with.

I apologize to everyone for the de-rail & this exchange, I don't mean to cheapen her memory in fact I feel tremendously sorry what she went through, as someone who has experienced it. I'm trying to use PMs & they aren't working. This is an opportunity I don't get very often.

---------------------------------

exculpatory · Post #33 » by **exculpatory** » Wed Nov 28, 2012 6:52 am

cnv2855 · Post #34 » by **cnv2855** » Wed Nov 28, 2012 6:53 am

N/T, I replied with my e-mail if you feel like discussing any further. Up to you though... it would be purely educational. Deleted my post.

cnv2855 · Post #35 » by **cnv2855** » Wed Nov 28, 2012 7:19 am

exculpatory · Post #36 » by **exculpatory** » Wed Nov 28, 2012 10:14 am

^^^^
CNV

1. I just deleted almost all of the 3 responses that I previously sent to you - for YOUR privacy. The only information I left behind for you to reread (if you wish) was my endocrinology advice regarding possible prednisone-induced suppression of the HPA axis/secondary hypoadrenalism, & possible prednisone-induced secondary osteoporosis.

2. I suggest that you totally delete your posts containing your personal medical history.

3. I am a very experienced endocrinologist. The endocrinology information/direction that I gave you was totally expert. You absolutely need an endocrinology referral by your rheumatologist.

4. As a very well rounded internist as well, I know a bunch of rheumatology, but I am NOT a rheumatologist. The therapeutic decision as to whether your systemic connective tissue disease (associated with profound polymyositis) should be treated with drugs other than prednisone + mycophenolate is WAY WAY WAY out of my expertise. If you want a second opinion on this, you need to physically see a second, highly trained, excellent rheumatologist - after you next see your primary rheumatologist.

5. The pilocarpine-like drug you take to increase salivation is a cholinergic agonist/parasympathomimetic - in one of your posts, you incorrectly stated it was anti-parasympathetic.

Good luck & best wishes!

Truth will lead us to #18 in June 2013!

cnv2855 · Post #37 » by **cnv2855** » Wed Nov 28, 2012 10:57 am

5. The pilocarpine-like drug you take to increase salivation is a cholinergic agonist/parasympathomimetic - in one of your posts, you incorrectly stated it was anti-parasympathetic.

Cevimeline, the compound I take in Evoxac, is in fact a parasympathetic agonist and I only likened the chemical pilocarpine to it. This was based upon pilocarpine having very similar functions and being more openly recognizable amongst the medical profession, due to abundant presence, and other uses. This was also due to the relative obscurity of cevimeline, which was patented sometime in the last ten years.

I believe pilocarpine is also used for the treatment of Sjogren's under the name Salagen... but has many other uses, the chemical having been around for over a century.

...or wait, I must have said antagonist? If so...definitely my mistake.

Sorry for the confusion.

Cevimeline (Evoxac) is a parasympathomimetic and muscarinic agonist,[1] with particular effect on M3 receptors. It is used in the treatment of dry mouth associated with Sjögren's syndrome.

exculpatory · Post #38 » by **exculpatory** » Wed Nov 28, 2012 11:12 am

cnv2855 wrote:
5. The pilocarpine-like drug you take to increase salivation is a cholinergic agonist/parasympathomimetic - in one of your posts, you incorrectly stated it was anti-parasympathetic.

Cevimeline, the compound I take, is in fact a parasympathetic agonist and I only likened the compound pilocarpine to it. This was based upon pilocarpine having very similar functions and being more openly recognizable amongst the medical profession due to abundance, and the relative obscurity of cevimeline, which was patented sometime in the last ten years.

Sorry for the confusion.

Cevimeline (Evoxac) is a parasympathomimetic and muscarinic agonist [1], with particular effect on M3 receptors. It is used in the treatment of dry mouth associated with Sjögren's syndrome.

You said it perfectly this time! :0)

Are you OK with Numbers 1-4 in my last post?

Hope I was helpful overall.

*****Get the endocrinology consult. I will explain prednisone-induced secondary hypoadrenalism another time. It is very real, very important & must be ruled out in someone who has been treated with prednisone 15 mg/day for 18 months.

Delete your previous personal posts!

Best

Truth will lead us to #18 in June 2013!

cnv2855 · Post #39 » by **cnv2855** » Wed Nov 28, 2012 11:14 am

Lol, I thought I did? I think I may have missed the first post, I'll go back and grab it. Edit: Got it. Thx.

And yeah I'm Ok with everything. I'll check out an endo...

Only downside is that I live in Louisiana, and we aren't exactly known for our education, or healthcare. So I have to travel a few hours to Houston to see the decent physicians. Anyway, thanks again. Good luck.

exculpatory · Post #40 » by **exculpatory** » Wed Nov 28, 2012 11:30 am

cnv2855 wrote:LOL. I thought I did? I think I may have missed the first post, I'll go back and grab it. Edit: Got it. Thx.

And yeah I'm OK with everything. I'll check out an endo...

Only downside is that I live in Louisiana, and we aren't exactly known for our education, or healthcare. So I have to travel a few hours to Houston to see the decent physicians. Anyway, thanks again. Good luck.

Ochsner Clinic in Nawlins & MD Anderson in Houston are your best semi-local choices for super Rheum docs, & super Endo docs (like me).

Delete all of your personal posts in this thread!

PS Rondo getting all the hype these days, & he is blossoming. Truth is our best scorer/closer by light years, & still HIS team. Read my post at the end of the Magic VC thread & click on links.

Truth will lead us to #18 in June 2013!