PDA

View Full Version : Because my family didn't have enough health problems.



Noclevername
2013-Sep-21, 10:58 PM
My father has recently been diagnosed with pretty severe rheumatoid arthritis. His previous injury related pain had apparently masked the symptoms for years. Since the disease is thought to have a large genetic component, he recommended I get tested for it as well.

My father is in his 70s, and having done some amateur studying of RA I'm worried about him. The earlier it's diagnosed the better, and it went unnoticed for who knows how long. It can contribute to a lot worse problems than joint pain; having already lost my great-aunt to RA-related health problems and having seen her suffer great pain for over 20 years prior to her death, it has me really shaken up.

I also have what may be early symptoms of RA, and I'm only in my 40s. For years I've had intermittent joint and spinal pain (sometimes quite severe), necrotic tissue forming around my finger and toe nail beds, and nerve related coordination problems. I have a doc's appointment next week, and should get tested for it then. I have a therapist appointment the day before that, so I'll have a lot to talk about in therapy.

My sister has had the test and is clear, which is a relief.

EDIT: I was wrong, my mom's side of the family had a different form of arthritis.

SECOND EDIT: My therapist is on vacation next week, totally forgot.

JustAFriend
2013-Sep-22, 02:03 AM
Wish mine had come on late.

I've been dealing with it for nearly 40 years since my early 20s.

Noclevername
2013-Sep-22, 06:46 AM
Wish mine had come on late.

I've been dealing with it for nearly 40 years since my early 20s.

Man, that sucks.

Perikles
2013-Sep-22, 09:57 AM
I'm sorry to hear of the problem. Rheumatoid arthritis can be debilitating, but there is a large spectrum from mild to severe, so a positive diagnosis does not necessarily mean really bad news. My wife (55) was diagnosed with it 20 years ago and her condition has deteriorated very slowly. (She is also somewhere on the Asperger's spectrum by the way, if we are still allowed to use the expression. As far as I know, even though I know of others, there is no correlation between the two issues.) This was one reason for moving from a cold damp climate to a warm sunny one - the positive effect on RA is quite remarkable, although not many have that choice. But it does restrict her ability to get regular exercise, which has knock-on health problems.

Hlafordlaes
2013-Sep-22, 01:52 PM
As an auto-immune (A.S.) sufferer, I hear you. But as already said, each case is different.

I'd insist on the minimum treatment, in terms of dosage and type of medication, that your doctor might suggest. Since you are comparatively 'old,' you do not have to worry as much about the long term effects of taking NSAIDs, but over decades, the problem for us folks with auto-immune diseases is the damage to the digestive system over time. I have found that striving for a balance of some pain and less medication is about the right combo, as it takes way too much to make me pain-free. Many people take omeprazol or a similar drug to counter the effects on the stomach of the meds.

COX-2 drugs are both marvelous and have some drawbacks, so if those are prescribed, give it a thought first. My cousin also has A.S., and takes a COX-2 med, and reports a vastly improved condition. I don't take them because I deal with the public, and with the reduction in immune response from a COX-2, could catch something nasty, such as TB.

Things like omeprazol, apparently innocuous, do have side effects, such as decreased libido. My wife thought I didn't like her for a while there. Thankfully, that effect seems to go away once the body adjusts, so no prob.

Don't know about R.A., but one issue with S.A. is that you look normal, and though others at first (a week or two) will take things into consideration, over time they forget and you are expected to act and feel like everyone else. That takes a toll, so support group networking is the choice of many.

JustAFriend
2013-Sep-23, 02:59 AM
Absolutely, look carefully at the long-term effects of medication.
Doctors tend to not tell you the little game of "hmmm.... will the meds kill the patient before the statistical end-of-lifespan".
Luckily I had friends who were pharmacists and had all the info (in the pre-internet days).
Many groups of 'wonder medications' in the '80s and '90s slowly destroyed internal organs over 5, 10 and 20 year periods and were pulled off the market.
There were numbers of lawsuits, but that's no solace if you're cold in the ground.

I was conservative about the medications I took, realizing that putting up with some pain
far outweighed liver failure, kidney failure and death (actual printed side-effects on the meds, btw)

Its tough to find a rheumatologist that won't treat you like a child or piece of meat, but keep looking... they are out there.

Swift
2013-Sep-23, 01:09 PM
I'll echo the "that stinks". I hope you have luck managing it.


As an auto-immune (A.S.) sufferer, I hear you. But as already said, each case is different.
Yes. My wife has Crohn's disease, an auto-immune disease of the GI tract, and yes, also has some mild arthritis (common for people with Crohn's), though the arthritis is very mild.

PetersCreek
2013-Sep-23, 05:58 PM
I also have what may be early symptoms of RA, and I'm only in my 40s. For years I've had intermittent joint and spinal pain (sometimes quite severe), necrotic tissue forming around my finger and toe nail beds, and nerve related coordination problems. I have a doc's appointment next week, and should get tested for it then. I have a therapist appointment the day before that, so I'll have a lot to talk about in therapy.

I went through years of migratory joint pain (sometimes debilitating) before finally being diagnosed with RA. My problem was that rheumatoid factor tests didn't return levels that were considered diagnostic. After several courses of ineffecive NSAIDs, I gave up on treatment for a long time until a couple of years ago, when I decided to give it another go. While I was away, a new test came into more common use: the Cyclic Citrullinated Peptide (CCP) antibody test.

While it's not usually diagnostic by itself, it can be used in combination with symptomology and other testing to make a diagnosis...and it can strongly indicate whether patients with subclinical symptons or an undifferentiated diagnosis will develop RA in the future. It was among the first round of tests ordered when I gave the docs another chance. A normal, negative result is <20 ELISA units/ml (EU/ml). >60 EU/ml is considered strongly positive. My result was 249 EU/ml. Bingo. Even though my RF test was still subclinical, the CCP test was enough for my rheumatologist to treat for RA and it's made a world of difference.

I started off on Plaquenil but didn't tolerate the side effects well. Humira didn't seem to make much of a difference. These days, I self-inject Methotrexate once per week and receive an injection of Cimzia during my monthly visits to the rheumatologist. I also take folic acid daily because long term Methotrexate use can result in deficiency.

I've read that symptoms of Psoriatic Arthritis can involve finger/toenails but I'm unaware of similar symptoms in RA. I'm also not familiar with nerve-related coordination problems being among RA's symptoms. I did have one odd symptom that I didn't tell the doc about for a while. I would occasionally get get pain and reduced range of motion in my right TMJ, sometimes with a feeling of fullness in my ear. I thought I was possibly coming down with TMJD. It didn't occur to me that it was associated with RA until I began to associate it with the patterns of my flareups.

publius
2013-Sep-25, 03:35 AM
I've got RA as well. Wouldn't wish it on my worst enemy. It's the reason my right hip had to be replaced, and likely my right knee in a couple of years. It gets in the hands in many cases, but luckily I've been spared that, although I've a lone knuckle or two flare up, and I do notice some pain and "dragging" when do a lot of work with hand tools and similiar.

If I get too ambitious, though, I'll get tendonitis-like flares in my wrists. Docs just say "Don't do that!". :lol: RA can affect any joint, even the ones they usually consider rare. And yep, I've had the TMJ symptoms, but never in both sides at once. It can even get in the top of your neck, which can really cause trouble. A good dose (but relatively low) of Prednisone will usually kill the tendonitis like symptoms, but I don't like to take that crap unless I absolutely have to, and then I won't take more than 15 mg in a day and for no more than 3 days.

Noclevername
2013-Sep-25, 06:21 AM
Ugh, Prednisone is definitely a last resort for me, my mother has taken it and the side effects are nearly worse than the problems it treats.


WWTSD — When things are at their darkest, ask yourself this question: What would Tony Stark do?

Build his own replacement parts by hand out of old weapons components. In a cave! With a box of scraps!

Van Rijn
2013-Sep-25, 08:14 AM
Yes, autoimmune diseases are fun, and unfortunately they seem to be common in my family as well, at least on my mother's side. My aunt had crippling RA, though it wasn't that painful for her. My mother has had psoriatic arthritis for a long time and that has caused a great deal of joint damage. Even better, a few years back she developed Wegener's granulomatosis. To give you an idea of what that's like, here's what it says in Wikipedia:

Before steroid treatment became available, mortality within one year was over 90%, with average survival being 5 months. Steroids prolonged average survival to 8 months. The introduction of cyclophosphamide (CYC) in the 1970s was a major breakthrough. Five-year survival is now 87%.

Luckily, they caught it early, and it wasn't hitting her major organs too hard, so aggressive immune suppression medication worked (now she's on a lower maintenance dose).

Oh, and I have Crohn's disease, and I have migratory joint pain (like PetersCreek above) that follows attack/remission of the Crohn's. During an attack, the joint pain can be very bad, though I haven't had a major attack for some years.

I would say at least that things look better today for autoimmune diseases than they used to - moderate levels of immune suppression drugs (imuran is a common one for Crohn's, methotrexate common for RA) work well for a lot of people. Anti-TNF alpha drugs (like humera and remicade) are expensive but can be very helpful - remicade helped me, and some people with RA literally get out of their wheelchairs after treatment.

Noclevername
2013-Sep-25, 10:58 PM
Well, my doctor's appointment was today, and I definitely don't have RA.

One less thing to worry about.

Hlafordlaes
2013-Sep-25, 11:51 PM
Good to know! Congratulations. Now go make a wish for us to corrupt in FnG.

Swift
2013-Sep-26, 01:52 PM
Well, my doctor's appointment was today, and I definitely don't have RA.

One less thing to worry about.
Congrats

Noclevername
2013-Nov-10, 10:46 AM
"Just for a minute, let's all do the Bump." ---MC Hammer, Can't Touch This

Just a quick update, my father has needed shoulder surgery for a rotator cuff injury for some time. The surgery was scheduled to have been over by now, but because of the RA he's had to delay it until well into next year. He's been complaining about how bad the shoulder pain is recently, which means it must be severe because his usual response to any physical problem is to say "Oh, I'm fine", or downplay any problem he admits to. You could light his head on fire and he'd say "It's been a little warm lately."

publiusr
2013-Nov-10, 08:28 PM
High blood pressure for me--palpitations every so often--flat feel colorblindness...I recently turned 47 last Sept., so I'm really starting to feel everything these days...

Noclevername
2013-Nov-10, 10:49 PM
flat feel colorblindness...
I've never heard of that. My brother in law has a blue/purple color blindness.


I recently turned 47 last Sept., so I'm really starting to feel everything these days...

That's not old enough for that many problems. At your age, your biggest worry should be "is it still warm enough outside to use the grill?"

NoChoice
2013-Nov-10, 11:59 PM
... lost my great-aunt to RA-related health problems and having seen her suffer great pain for over 20 years prior to her death...

20 years of great pain!?
I just can't comprehend why anybody would want to endure that!

I told my family that if I get one of those nasty diseases that I will take the early exit.

I've spent more than 50 years on this planet and if I look at the sum-total of pleasant and great experiences compared to the difficult and nasty ones, for me the scale is about even or tips slightly to the negative, especially considering the stupidity and violence of the human race, which is simply built into our genetic and psychological makeup and is not gonna change, except for a serious evolutionary intervention.

I am not depressed and quite healthy (exercise regularly and have been a health-conscious vegetarian for 30+ years) but I just can't find this place attractive enough to want to endure some of the health problems depicted in this thread. No way!

What makes one go through with it and endure it for sometimes decades?

Noclevername
2013-Nov-11, 12:15 AM
What makes one go through with it and endure it for sometimes decades?

Yes, death ends pain. It also ends pleasure, and my great-aunt took great pleasure in life even at the end.

No love, not laughter, no joy, no discovery, no more me... Plus making my family mourn. I can't imagine ever choosing that option, and don't understand people who do. I guess it's just a personal thing, everyone's different.

NoChoice
2013-Nov-11, 12:37 AM
Yes, death ends pain. It also ends pleasure, and my great-aunt took great pleasure in life even at the end.

No love, not laughter, no joy, no discovery, no more me... Plus making my family mourn. I can't imagine ever choosing that option, and don't understand people who do. I guess it's just a personal thing, everyone's different.

Yes, I get that and I certainly considered that. I consider myself very lucky in having a wonderful wife and a stable and fulfilling relationship with her. There is a lot of joy and lots of laughter in our house.

And yes, there is the mourning of the family. On the other hand, that is inevitable anyways. We're all going to die. Sooner or later. I just insist on the right and the freedom to come to my own conclusions about it. What is more personal than one's own life?

We talk about this topic often, both getting older and quite aware of our bodies' slow (but sure) deterioration.
She doesn't agree with my decision but she accepts it and understands it on some level.

I am just curious what makes people endure such hardships for such long times...

Noclevername
2013-Nov-11, 12:51 AM
I am just curious what makes people endure such hardships for such long times...

I don't know; but many people endure hardships as bad and worse every day, all over the world. Sometimes lifelong suffering that includes intense physical, mental and emotional pain, ranging from medical ailments to slavery. Yet most find a reason to go on. The reasons vary from one individual to another, so there's no one answer that can cover all cases.

Noclevername
2014-Feb-08, 12:22 AM
So now it's 2014, and my family has a whole new set of health problems.

My sister had to have tendon surgery on her foot, and so won't be able to walk or drive for months. My brother-in-law's dad has 70% kidney failure on top of a whole host of existing problems; diabetes, major heart trouble, a colostomy. My stepmother is recovering from weeks in the hospital with H1N1 flu and resulting double pneumonia, and now all the antibiotics she was on for her lung infections have led to killing off much of her gut bacteria and let opportunistic C-Diff (http://en.wikipedia.org/wiki/Clostridium_difficile) bloom.

Cougar
2014-Feb-08, 03:09 PM
My sister had to have tendon surgery on her foot, and so won't be able to walk or drive for months.

Hmm. My wife managed to rupture her Achilles. I was surprised at the size of the incision. It'll be a while before she goes rollerblading again.


My stepmother is recovering from weeks in the hospital with H1N1 flu...

Be happy she's recovering. My office is currently involved in a jury trial where a lady went to an emergency room with H1N1, the doctor didn't do any tests, just gave her some tylenol and sent her home, where she died. Yes, be happy she's recovering, even with complications....

publiusr
2014-Feb-08, 07:48 PM
My Dad died exactly 10 years ago this month. My Mom outlived him only four months.

Noclevername
2014-Feb-08, 07:54 PM
Oh, and my Dad's shoulder surgery is finally going forward, in March. That's half a year after it was supposed to happen.

starcanuck64
2014-Feb-08, 11:02 PM
So now it's 2014, and my family has a whole new set of health problems.

My sister had to have tendon surgery on her foot, and so won't be able to walk or drive for months. My brother-in-law's dad has 70% kidney failure on top of a whole host of existing problems; diabetes, major heart trouble, a colostomy. My stepmother is recovering from weeks in the hospital with H1N1 flu and resulting double pneumonia, and now all the antibiotics she was on for her lung infections have led to killing off much of her gut bacteria and let opportunistic C-Diff (http://en.wikipedia.org/wiki/Clostridium_difficile) bloom.

Two years ago while in hospital for knee surgery my step-dad came down with C-diff and just about died. It killed off most of his lower bowel and they had him in an induced coma for a week.

He has to watch infections but he's doing much better now, he even goes out hunting and fishing.

Noclevername
2014-Feb-08, 11:29 PM
My stepmother already had part of her intestine removed because a blood clot blocked off an artery.