I'm so sorry you're both going through this! I can understand from both sides and I think you're right to vent.
I'd also recommend talking with your husband and then taking a trip with him to the Dr.
IMHO, I don't think that prednisone is evil; it can work incredibly well when other drugs can't. I think most people aren't aware of just
how powerful a drug it is. It can save your life, kill you, or do both at the same time. It's
that powerful! Few things in life are all good or all bad and prednisone is a prime example of that. Aspirin isn't even in the same league, in my opinion.
I am allergic to poison ivy and take it for limited amounts of time, knowing it will make me grouchy. Nothing else readily available and affordable will take care of that problem quickly. I've also had the occasional asthma attack and it worked well then, too. I also know that I can
severely screw up my metabolism by not taking it correctly, abusing it, or taking large doses for long periods.
This next part can be really scary, but keep in mind that a LOT of new drugs and treatments have come out since then and my mother's case was different than your husband's (and possibly more severe, in addition)!
I saw my mother slowly die from prednisone.
She and all of us in the family knew what what happening but with her it was a case of frying pan or fire. A lot of new drugs have come out since then, but until relatively recently, prednisone was pretty much the primary drug effective for really severe arthritis.
My mother had a severe case of a very rare form of arthritis that primarily attacks the lung tissue. It basically created scar tissue from the inflammation reaction, which then blocked the flow of gases from the air in her lungs to her blood stream. It also made it incredibly easy for her to get pneumonia. Only large doses of Prednisone in combination with other drugs such as Enbrel kept her from dying within days or weeks from a single flare. The arthritis also hit her joints so she was having that "fun" in addition. For many years, prednisone was the only thing that kept her alive and functioning pretty well for most of that time. She was able to keep working and saving others' lives when without it she was fighting for her life in a hospital bed.
My mother was an incredibly bright person, a medical doctor, psychiatrist, and pioneer in a totally new field of medicine. She knew what she was doing by taking large doses of prednisone long term, but did it to make sure her kids were all okay and that she did as much as she could before she died.
By the time she died of congestive heart failure (due to the long-term prednisone use), she had very, very little short term memory left. The person who used to be able to talk complex medical issues while doing very complex crochet or knitting patterns could no longer remember which stitch she'd used 3 stitches back while knitting. Her osteoporosis was so bad that her artificial hip joint had punched through the hip socket but was inoperable due to the prednisone side effects. She also had less than 30% of her lung capacity left. Just brushing against something hard could peel off skin because of connective tissue deterioration. She'd lost most of the feeling in her fingertips and kept dropping and breaking things very precious to her. She knew she was sometimes an absolute witch (spelled with a capital B) and sometimes so depressed she needed antidepressants, and she knew the damage that was being done, but she kept taking it because she had no choice of drugs.
She hated it almost as much as the arthritis and I sure had to walk out of the room a lot of times when she went on a rampage and took a few slaps, too, from her.
She'd never once slapped me in my entire life except when she thought I'd socked a much smaller sibling (another story for another time). Definite mood swings that were also definitely not fun!
Personally, I think you did a very good thing to vent! I had taken prednisone, knew what it was and would do, and still had some real "do I REALLY want to kill my mother?" moments! And that despite the fact that I had really severe osteoarthritis (bone-on-bone for years at that point) and new just how bad she was hurting! You can also check around online for support for both you and your husband during flares and venting periods. I used both a LOT!
It sounds
like your husband has a really severe case, too, so he's got to have something really strong, but I'd definitely check with the doc to see what else is available. My mom died almost a decade ago and some new drugs were coming out then but she couldn't afford one of the new ones that did work and she had severe side effects with it, too.
Warn your husband that long-term use of prednisone (not sure about other corticoids) will not only cause severe mood swings but also will slowly and progressively "eat" his brain and just about any connective tissue, too. Doctors sometimes forget to warn people about that and it all happens so slowly that they can't always pick it up very quickly.
The nerve tissue just dies. Permanently. Progressively. In the fingers, in the toes, in the brain. Slowly, but inevitably. Tell him about my mother if he needs a reminder about the bad as well as the good. It may give him the needed motivation to try other drugs. Believe me, having been for long terms at the level of pain he's in, that's a real tough leap to make.
MOST of all: Hang in there!! Your husband's story isn't going to be as bad as my mothers!
My arthritic knees go so bad I was on the highest level of narcotics and that still didn't kill the pain. Now I have new knees, and NO knee pain (unless I fall on the surgery scar).
Oh, yea, forgot to pass on some other info earlier. I had the same nghtly crash-and-burn symptoms your husband is having and found out from others a way to deal with it.
When I was going through a period of severe pain, even with drugs that knocked the pain level way down, my body was still subconciously be very stressed and I would get as exhausted and grumpy as your husband. For some weird reason, at some point the body just decides it is suddenly time to shut down, regardless of anyone's plans or where you are. When it happened to me, I immediately got really, really tired and also at one point it just felt to me like whatever means my body used to block out the pain just vamoosed. (Ouch time!) When that hit, I couldn't get up to walk 10 feet from the living room to the kitchen to get a drink of water! Many's the time I got home from work, went 3 feet to a couch, and collapsed for a few hours. There were a few times I had to stop driving home, take my "cure", and wait for it to kick in before continuing. Thankfully my dog would fetch and carry for me once I got home, but even she knew also to support from a distance until I'd drunk some Coke and eaten a chocolate bar!
Chocolate (large doses) and caffeine (moderate) helped me and a lot of people with severe arthritis. The chocolate not only tastes good, it gets the little ol' brain to pump out some of those wonderful endorphins that are running dry. The carbs also give a short-term energy boost and (if still needed) with the right amount of caffeine, it got me two or three hours more time before I had to crash into bed. It let me keep on a time schedule that synched with work.
No guarantee it'd work for your husband, but it's an option to try to keep running for a little longer than 7. Wouldn't recommend it for any situation other than this, though, and you have to be extra careful with nutrition the rest of the time, for obvious reasons, but it let me get up after work and go get groceries, feed the critters, and eat dinner before I went to sleep!
It was a running joke on the arthritis email list that I was on that if someone was having a flair, they immediately needed a block of chocolate! We sent each other cyber chocolates!
Come to think of it, you can always share the chocolate part and it may make you both feel better!
So, I'm sending you both a 1lb. box of cyber chocolates and best wishes for making it through this tough period with some humor intact! I am also awed by how well you've taken all of this so far; NOT an easy thing to do!
I'm rooting for both of you!
Ann
in Central Texas with one wonderful Border Collie (who can bring sheep, chickens, dropped crutches, the comfy shoes, socks, and/or sodas on command), a BR, BO, Golden Sex-Link, and 6 new Americauna (or EE?) chicks.
I'm a patient, let me say, a VERY patient person. I think he's just super frustrated with his vision getting foggy. Can't blame him for that, but don't take it out on me!
