Support Group Meeting Tonight

The Santa Maria Lupus and Rheumatic Diseases Group is meeting tonight at 7:00 PM.  Anyone with an interest in any rheumatic/autoimmune disease is welcome to attend.  Email smlupus@gmail.com for more information.  FYI, this will be our last meeting in 2009.  Happy and healthy holidays to you all :)

First blog award!

I never thought I'd get to put up one of those cool images that link to a site which likes my blog!!!

I've seen them all over other people's blogs, of course. But I didn't expect to see one on any of my blogs. I've never been the type which gets much recognition for anything I do, or even very many "thank you"s or other positive feedback stuffs like that. What I get instead is the criticism whenever anything goes wrong! Something about me just seems to silently say "Complaint Dept."

Anyway this award thing came out of the blue and could not have been better timed for a much-needed lifting of my spirits. Thank you, disease.com !!!

I didn't know anyone even knew I was here, all alone, blogging my heart out, to tell you the truth. When I think about what I've been through with diseases, treatments, and what these have done to my life, the phrase "In space no one hears you scream" comes to my mind a lot.  Where does that come from, anyway? Wasn't that from an ad for the movie Alien?

 Ugh. What made me think of THAT film. I was up half the night last night, again, having a special relationship with The Porcelain God thanks to the vomiting my hiatal hernia sometimes likes to induce when I am trying to sleep, and the scene I suddenly thought of from the film--well, if you saw it, you understand what flashed through my mind. I'm a bit queasy now.

I just want to stay happy about my award, so time for some thought re-direction. I saw a great sunset the other night.  I'll try to share it with you below, if various technology gods are not too cranky.  And very soon after this sunset, I saw a shooting star on my drive home!  It doesn't get much better than that :)

SSRI Discontinuation Syndrome

Oh, this topic is so interesting...just felt like blogging about it for no particular reason...riiiiight!

A few people I know have been wondering where the hell I have been the past 2 weeks or so. Let's just say that where I've been, you don't want to go.

I've been trying to function, despite having my brain basically in need of a long vacation at a hotel with padded-wall rooms, but I am certain I didn't fool everybody. At least 4 people let me know I was not acting like myself...which I appreciated, as it was done tactfully and gently.

The frustration was that I was not sure if I was believed, when I assured them I had contacted my doctor and asked for help. I actually did so twice. Now that I am doing somewhat better I intend to follow up and find out just what went wrong--that is, why I didn't receive help, and what system I could set up so that if I ever need help again while perhaps not being able to communicate so well, something would still be done for me...

A lot of you know what withdrawal from prednisone can be like. I personally have a bad history of being miserable from prednisone, in the myriad ways that drug notoriously has for making one wonder why God would put the cure for too much inflammation, along with intolerable, even potentially deadly side effects, together in one place.

Please don't be frightened of short-term courses of steroids, but those of us who have had to deal with them long-term (and remember, many of the medications for autoimmune disease used right now just weren't THERE when some of us where diagnosed somewhere back in the Bronze Age) can probably point to a part of our body and describe how prednisone or an equivalent somehow messed it up! Anyway, for me, the emotional lability and depression triggered by steroids is significant, and withdrawal from them is mixed with both physical and psychiatric symptom exacerbations. Lots of fun, NOT!

I recently had to go up on prednisone for my notorious post-respiratory-infection cough (when I was 7 I had the thing the entire winter which had my mother being told I would simply not live long), a treatment new to me for this miserable cough but which actually works. But then I was coming off of the high-dose prednisone just AT THE SAME TIME as when I had to:

(cue sinister music) withdraw from the drug Effexor.

This was just one of life's little coincidences that help one understand what "perfect storm" and "failure theory" are all about! (cue dark clouds moving in, now.)

Well, two weeks of hell, and not quite over. Just over enough so that I think I might actually sleep tonight. I also think I am speaking English and am doing so without pissing anybody off at the moment...and without babbling nonsense. I think. I think. I hope this is the case.

But my dose of this drug was only cut, albeit too sharply for me, in half. That means I'm still taking it. Oh my freaking God.

I've now gone from not understanding why a med that was working for my long-term problem with either lupus-induced or steroid-induced or mixed-caused (at this point I'm not sure the origin matters so much) major depression was being changed in dosage...to being grimly and absolutely convinced I should get off of the drug entirely. And I wonder just how that is going to be safely accomplished. And hope my doctor agrees with me! Because I'm going off of it, somehow. I clearly overreact to it or something, or that withdrawal wouldn't have been the hell on earth that is was. And still sort of is. It's not over. I still feel rotten, just more manageably rotten.

Admittedly, reading Wikipedia is not like reading peer-reviewed medical journals (then again who can afford access to those any more) but I found this, at http://en.wikipedia.org/wiki/SSRI_discontinuation_syndrome , to be very interesting re Effexor:

"Venlafaxine

Sudden discontinuation of venlafaxine has a high risk of causing potentially severe withdrawal symptoms. Even missing a single dose can cause symptoms of withdrawal.[25][26] The high risk of withdrawal symptoms reflects venlafaxine's short half-life as well as its effect as a dual uptake inhibitor.[20] Discontinuations have a tendency to be significantly stronger than the withdrawal effects of other antidepressants including the tricyclic antidepressants, but are similar in nature to those of SSRIs with a short half-life such as paroxetine.

Symptoms of discontinuation are similar to other antidepressants including irritability, restlessness, headache, nausea, fatigue, excessive sweating, dysphoria, tremor, vertigo, irregularities in blood pressure, dizziness, visual and auditory hallucinations, feelings of abdominal distension, and paresthesia. Other non-specific mental symptoms may include impaired concentration, bizarre dreams, delirium, cataplexy, agitation, hostility and worsening of depressive symptoms. Online help groups consistently mention withdrawal from Effexor as triggering dreams of a particularly distressing and hellish quality.[20][25][26][27][28][29][30]

Electric shock sensations have also been reported[26][29] with many patients describing the symptoms as "brain zaps". It has been suggested the sensations may represent an alteration of neuronal activity in the central nervous system.[31]

Studies by Wyeth-Ayerst, the maker of venlafaxine, and others have reported severe withdrawal cases, including withdrawal as the presentation of a stroke, as well as neonatal withdrawal (neonatal withdrawal has also been reported with paroxetine, fluoxetine, sertraline, and citalopram). In some venlafaxine withdrawal cases, successful discontinuation was eventually achieved by the addition of fluoxetine, which was later discontinued itself without difficulty."

It is easier to say which of the above symptoms I did NOT have, since I suffered most of them and pretty severely.

1.
I do not know about my blood pressure.
My heart rate was noted by a doc as being too fast during this time: 110

2. I did not have auditory hallucinations.

3. No stroke.

4. No neonatal effects; didn't deliver a baby to have them.


--

I've gone off of SSRIs before and did not have anything like this happen, but I believe they were ones with a much longer half-life. I discontinued Prozac (fluoxetine) years ago due to headaches and then later went off of the replacement, Zoloft, due to diarrhea, exacerbation of restless leg syndrome and nervousness. I still take trazodone at bedtime for sleep betterment (although now I'm wondering about getting rid of it as well on general principles!) I discontinued Celexa, which had worked for me for many years, simply because it no longer worked, and replaced it with Effexor.

It took me a long time to find the dose of Effexor which seemed best for me and that turned out to be a bit high at 300 mg. But I had some prior symptoms while on Effexor of going oddly rapidly into depressive states, which led my doc to believe that this was not the best drug for me and that it could even be dangerous.

And I now totally agree with him! because a withdrawal like that means that I would be in big trouble every time Medicare Part D played its usual little game with my med renewals! ("Oh, your insurance isn't covering that on third Tuesdays...you'll have to fight for it...oh you'll be out of it soon? So sorry")

Right now I am completely exhausted, mildly depressed, mildly nauseated, and a bit scared. I also feel very alone. I'm not sure why the latter.

And I feel kind of like I'm drowning...because I don't know as much about psychiatry as I do about rheumatology, and I am somewhat overwhelmed now that it appears I had better start learning.

Honestly, I'd rather be at the movies or something. I kinda sorta remember going to movies, back in the day. I want to see a Disney cartoon or maybe a musical. Something really really retro and safe.

Benlysta

I was myself involved in a trial two years ago of a different medication, not this new Benlysta.

My med has helped some lupus patients who have tried it but it didn't make the primary endpoint in the study...although the drug is being used for rheumatoid arthritis and non-Hodgkin's lymphoma. The problem with it not being approved for lupus is that insurance often then won't pay for it for anyone with lupus...and it is very expensive...this is a common problem with other meds that are being used for lupus if they haven't gone generic, or if the patient takes enough meds so that even prices for generics can be a problem (how would I know about this financial quandary? don't ask!)

Although I am WAY WAY more than ok with the trade, I have to admit that in my case, I swapped nasty evil rotten kind of intense lupus for something else: a merely annoying case of catching-every-bug-that-goes-around-all-freaking-year-round. Well, usually merely annoying. I've not had great experiences when I've caught the flu...

...however, the people who say "lupus is like having the flu" forget to add "or actually it can be like having the flu, or not. Or can be like having the flu with someone also having split your head and every single one of your joints open with a hammer. Or can be like having the flu with a huge ball of fluid where your heart should be and while losing 1/3 of your own blood volume in a week, oh, and Alzheimer's, and did you know even your eyebrows can seem to hurt when every hair follicle is inflammed and ..." Well, I won't go on, but I COULD go on. Every lupus case is different and for each of us our individual flares of the disease can be very different. No simple summary will do here.

Jumping around from topic to nowhere back to topic again (because I have a fever and because it is after 3 am): as far as the I-now-know-I-will-SO-catch-your-cold thing...I learned recently that my B cells (component of immune system deliberately reduced by the med I tried) are not exactly quite bounced back yet. Low normal is 80. My level is: 2.

And I was very grateful for this medication and still am. But I hope this gives an idea of what some of us are willing to put up with, and with joy in our hearts, to reduce lupus activity...I consider the drug I took to be no less than a miracle for me! Even though it didn't make it out of the study. And even though if I needed more I was up a creek w/out a paddle because I could never have found the $$$ for it.

So, you may understand why there is a lot of interest in this "Benlysta™ (belimumab)" which has actually shown effectiveness in Phase III trials. For reals.

For us lupies, BIG news. GO, Benlysta!

Why is it sometimes so hard to sleep with a fever?

You would think not feeling well would be enough to MAKE us sleep! But it doesn't work that way. And since good old fibromyalgia nails me to an invisible crucifix of pain every time lupus makes me miss a night's sleep...oh not that I'm complaining, or anything...

I know there are some ppl with autoimmune illness who are concerned about having children

...and so here's the stuff on the health care bill and abortion rights.

Historic Health Care Bill Passes The US House Of Representatives...

and wears out one lupus patient.

I couldn't leave something this important undone, but it has been very hard to try and sift through all of the information, opinions, and passions.

Here's what I've come up with as being as representative as I could get over the past two days on The Bill:

http://donaldburr.com/healthcare.pdf

This health care reform campaign has been very much of a rollercoaster ride and I do not for one minute think it is over.

It is especially important that those of us who live in the U.S. and are coping with autoimmune disease in ourselves or our loves ones inform ourselves on how the bill might affect us and to let our representatives in the federal government know what we think about what is happening.

If you wish to contact your Senator about the bill quickly (the Senate has not yet voted on it) you are advised to phone or to fax. Email has been sent in large enough volumes that it may not all be being read quickly, and I'm told that mail to the Senators at their Washington addresses is still subject to the delay of search for anthrax or other dangerous substances.

My lupus is supposedly "fine"

But I've had some very hard times with health recently. I feel like all of my "diseases and conditions" are now on some kind of collision course with the side effects of the medications and of the enforced poverty and maybe even having to deal with being a bit older while still having to cope with All This Stuff...I don't know. I'm just incredibly tired! Like I could sit down and close my eyes and maybe feel like I'd had enough rest and be able to open them again after...a year.