Intro and a few questions ~ Dazed and Confused!

General
1

Hi folks :

I am happy to meet you, though sorry it is under these circumstances.

About 3 years ago I began having terrible pain in my hips, bilaterally. Predisone was a miracle drug for flares, but the pain always returned when I weaned down to 10 mg and lower.

At the recommendation of my GP, I began seeing an otho who xrayed my hips and said they had "some signs of arthritis" but not severe, and he was of the opinion that I had trochanteric bursitis. For two years, every three moths I would go for injections and sometimes they would help and other times the effect would only last a few weeks. Then, I started having pain in my feet and ankles, and now one knee is TERRIBLE. I have had spine surgery, an L4, L5 fusion in 2003, and I wonder if it is all connected. My bloodwork is all normal.

After two years of hip injections, the ortho recommended I see a rheumy, and so I have started down that road. he redid my bloodwork, and again, it is all within normal limits. Some of my joint pain is bilateral, some only on one side. I also have terrible fatigue :P

I have no family hx or signs of psoriasis other than some mild onycholysis on two of my nails and a scaly patch behind my ear and other nail bumps and lines. My nails used to be beautiful. I saw a dermatologist who just briefly looked at my nails and the patch behind my ear and said "I'm not ready to give you that label yet". Great.

My rheumy wanted me to see a derm before he started me on plaquinel, which I have been on for a month with no results but I understand it can take between 3 and 6 months to see any results. Two weeks ago I BEGGED for a prednisone burst, and got it, and it bought me two weeks of functionality, but now I am on the downward slide to 5mg and will be off next week.

I saw the rheumy yesterday and he wants me to give the plaquenil another six weeks before we move up to methotrexate and/or possibly Remicade. I wanted him to give me hip injections, but he said it would mask what we are trying to observe with the Plaquinel. I had a bit of a meltdown and said "I don't CARE, I just want to function!"

And he calmly said "Well I do care, because this is going to be a long term battle and I am trying to help you with the least possible toxicity with regard to medications before we move up the ladder. Please give this six more weeks and if you are not better we will get out the big guns."

He also said that while he was not going to be quick to totally discount the opinion of a dermatologist, he agreed that her assessment might not have been as thorough as it should have been, seeing as how she did not ask me to undress and did not give me a look over. I do have some irritation in my natal cleft that I have attributed to possible yeast, even though I never get yeast infections. It could be psoriatic, no ?

He said that the label ( or name of the arthritis ) is not as important as finding a treatment that works. My question is how do you fight what you have not named ? Maybe he is right, what do you think ?

Please pardon the disjointed thoughts I am throwing out here. I am just dazed and confused. I am a perinatal health educator and used to navigating people through the health care maze with regard to obstetrics and early parenting, but rheumatology is apparently very complicated.

I don't even know what questions to ask at this point. I would like to know what this is so we can kick it in the keester before it finishes kicking mine, because right now I feel pretty whooped.

Thanks for listening, and I really appreciate any thoughts or comments some of you more experienced PsAers have to offer.

2

There probably is no easier or more difficult medical specialty than rheumatolgy. On one hand you have three classes of drugs that can handle most of it on the other you have autoimmune disease which is nearly undefinable - each persons immune system is unique to them.

Sounds like you have a great doc. (whether you believe it or not.) Rheumys become rheumys because it is a specialty where they can actually make people feel better. However it depends on the PATIENT as much as the doc. A rheumy will put you into one of two classes almost immediately. One who is looking for pain controlcure or one who wants to get better. If you are in the former you won't get there. Everything you do has an effect on your immune system. When he says he calmly said "Well I do care, because this is going to be a long term battle and I am trying to help you with the least possible toxicity with regard to medications before we move up the ladder." he means it. A quick Predi taper will possibly control your pain. Several years of predi tapers will kill you (slowly) There are other ways of controlling inflammation. Getting a narco from your PCP can screw up everything.

I know the two seem related but really they are not. When you get control of the disease EVERTHING gets easier. Thats the exact reason the world economy is in a mess. We keep trying to treat the results of the problem. We can loan money print money all we wan't but unless governments and preople quit spending the money, we'll get no where, Once we stop spending THEN we can do a lot.

I know what I'm about to say is not comforting (I think it is) Most of us by the time we get to a rheumy have been hurting for YEARS. I'm not sure why we should act surprised when they don't fix it the first month. When the doc understands we want to get better, that means he can work through all the pieces. When what we want is treatment for the symptoms, he can never get there. (Everyday brings something new)

I like how he told you it doesn't matter what we call it if we treat it. There are folks who are so obsessive about Dx that they have a "disease" of the hour/day and a list as long as your arm. Naming it doesn't control it. We have a small group of deer living below the house. My wife has everyone of them named and looks forward to each years fawns. But despite all of that the damn things still eat my roses....... I don't care which one of the ate 'em, If a catch 'em..............


Sounds like you have a keeper, work with him. You have been hurting so long now........ Aaa bit more won't make a huge difference and could be the begiing of control.

3

Hello,

I have always found that at least if you know the name of something you can #1. Do research and learn what you need to know that Drs may not tell you! #2. It does help you emotionally to have a name for what ails you, it helps to make peace with it and not feel like maybe you are being overly sensitive. I know for me with a few forms of arthritis including PA and FMS in the begining I thought I was going crazy! nice to know I wasn't and that I was not alone

4

I'm thinking they will. A response to Predi is a good thing. It means it IS inflammation.

Why the fear of MTX and Remicade? (especially Remicade?) The side effects (long term) are less AND less harmful than those of drugs we think nothing of taking? Sometimes I think the internet is not a good place for info. While the original studies are there, and the follow up studies are there, we don't don't read those. Sorta reminds me of the dihydromonoxide hoax of a few years back. BAN IT after all 100% of people who come in contact with it die!!!!

http://www.youtube.com/watch?v=yi3erdgVVTw

Best of luck, You have a great attitude. But take it from a guy who does numbers for living (and numbers for sport) given a choice between taking a Biologic (ie remicade) a DMRD (ie MTX) or an NSAID (ie naproxyn) for the next 20 years thats exactly the order I'd take them in: Biologic, DMRD, NSAID

5

I get the Gomer/Goober thing....... (BTW Gomer has a "cabin" just up the road from us, hasn't been there in quite a while though) All of us are different. I kind of have an informal spread sheet going on one end are the folks who fear the drugs and worry about stares from passerbys if they need their "bluecard" on the other end are the folks like me who don't fear the drugs much at all and peruse the internet on how to supercharge their power scooters for races. In any event you don't need a two tailed probability, t test, or a regression coeficient. to see that AGE is related to fear of drugs vs. disease.

I'm on a biologic, I prefer Enbrel as it is effective as a monotherapy. We tend to burn through these so I keep Humira on the back burner because of all the eye stuff that can happen enbrel isn't effective but others are. I avoid MTX or any drug that uses MTX as co therapy like the plague. I have few passions left as I can no longer carve, so I drink. Used to cook but gotta watch the weight so i drink. I like micro brews fine wines and single malt scotch and collect the latter. I refuse to use any narco's. Not that I haven't had occasion, but just like some of the biologicals, I'm saving them knowing that can actually cause more pain than control it. I use a lot of nsaid topicals both flector and compounded, once a month - I allow myself 2 days of predi (20mg/day) if I'm flaring. I exercise EVERY day and stretch 3 times a day and never fail to play several times a week with my wife of almost 40 years. (there is always a way and if you have stopped for any reason START, it makes a huge difference) I fly fish nearly every night after supper April through October. The cold water is WONDERFUL. I have found hot packs moist heat (I like nuked rice in an old sock) and/or ice packs sometimes at the same time are as good as anything. I have tens unit that I use often I have my golf buddies on speed dial (One is an anethesiologist and the other a chirocracker) and collect a few bets. I avoid surgeons, ablations and surgeons (notice I said surgeons twice) I like injections, but it take several before the guy knows your back. I have massage chair and table both in my office. I have two of those girls on speed dial (much more effective than muscle relaxents)

I work hard and push my self every day, I do the same at home with exercise, play and stretching. I refuse to compromises Are there days I can't? The answer is NO. I can always do PART of my routine.. Are there days I don't want to? Yes nearly every Day. Do have patience for fellow sufferers who have the gall to tell me I don't understand? not much. I have been so debilitated I couldn't move so dependent on pain management drugs I would scream if one of my kids touched me wrong. However, I have an a academic career, speaking career, writing to do, consulting, 10 kids, a couple of businesses, a bunch of grandkids, a few great grandkids, (We adopted so they don't have the genes) I have a big bucket list and refuse to let a bent gene screw it up.

So MY MOTTO is if you ain't feeling any pain, your either drunk or dead. I'm not dead, and except for a little accident with Margaritas last Cinco demayo (never trust the auto shot on 1800 Respodo Tequila. haven't been drunk in 30 years or so.

6

Wow, well, our stories are quite similar except I have had raw, red elbows in the past and a bit of a hint of it again, instead of anything on the nail. Unlike you, I'm being treated for fibro, so in a way dx does matter (if you're being treated for fibro if more is involved.) But I did want to let you know that there are others out there who just don't know what's going on yet, other than experiencing lots and lots of pain that jumps around.

I know that what tntlamb says makes sense. In the long run, it's the proper treatment that matters. But on the other hand, the pain we experience over the years is certainly difficult to handle. I do feel for you and hope that a more definitive answer is forthcoming and, more importantly, you get pain relief and treatment for this nasty illness.

Petunia

7

I wouldn't be too worried about MTX. The dose for PsA is very low. As long as you are being monitored with regular blood tests you should be fine. I have taken MTX for about 10 years and had no problems with it at all. The drug I love and hate is prednisolone. Its side effects are awful, but it is a wonder drug short term. I only use it now when I am having a bad flare up and then use it for as short a time as possible.

8

Welcome (again!) mimi!!! I'm glad to see you posting and getting such great info from everyone.

When we're in pain it's difficult to patiently wait out the months it takes to see if a treatment is working - we want the pain gone and the ability to function back NOW! Unfortunately, that's not how it works with autoimmune diseases. People ask me why I'm not on pain meds constantly - why I choose to live most of my day in pain. My answer is simple - I need to know how well my current treatment is working, and the only way to know is to be aware of my pain levels, where the pain is, and my joint mobility.

Anyway - it's long past my bedtime and I have a big day tomorrow, so I better get to bed.

Wishing you patience on your journey to find a treatment that works for you! :)

9

Once its determined which "family" of rheumatic diseases you are a member of, meaning something is controlling inflammation, that is about as far as you need to worry yourself for Dx. This is an immune system disease.meaning each persons disease id determined by their own DNA. Considering there is virtually NO two people with the same DNA, there are no two similar "diseases" Consequently most meds are "shot gun" There are new facets being determined all the time. But giving a "disease" name which by and large are really "adjectives" won't change much.

I actually get more amused than involved when discussion gets "serious" about different treatments (usually wholistic types" ie "I got a huge differenc when I quit gluten, this is a a disease of the gut blah blah blah" well I would think you would get difference if you were gluten sensitive, but I if I quit gluten the result would be a near maniacal craving for a cheese burger with big fluffy bun. (my wife IS GF therefor unbeknownst to her I fulfill that craving at Five Guys Often, as proud as she is of her GF bread and Buns they still taste like heavy biscuits to me, but after theses many years I won't tell her - no way))

We have an OVER ACTIVE immune system not a compromised one. The little ol' tnf's floating around on a a search and destroy mission are programmed by our DNA some like different things than others. One of my favorite dinners is liver and onions. The rest of the family leaves even the general facility when I'm fixing it. Why is that

Why does a shot of enbrel every 5 days keep me fixed up and going, but does NOTHING for my sister, who is back to sulfazine with great results (did nothing for me?)

I understand "wanting to know" but I also see an awful lot of people become so consumed with it, that they are distracted from doing what they need (attitude is important) thinking one more piece of information will be the key. THERE IS NO CURE therfore all there is, is treatment, and that will change frequently. Our immune system is designed to do its job no matter what we throw at it.

10

Mimi - I take tramadol to be able to sleep, get through important events, and on days when I'm wrangling 8-10 kids and need to carry the 11 month old around half the day. Other days I get by by balancing activity and rest and applying cold/heat as needed.

A healthier lifestyle is definitely helpful. I was diagnosed with celiac soon after being diagnosed with PsA, so it's been quite a change for me - both in eating habits (I already ate organic/local/humane food, minimal processed foods, etc, but completely gluten-free is definitely a lifestyle change!!!) and in my physical abilities (hiking 7 miles through the hills of CT to a wheelchair or canes in three months!).

Unfortunately, dealing with the treatment of PsA is a bit of a crap shoot - some things work for some of us, while others find different treatments effective. My hope is that we all find something that has us feeling good SOON!!!