Already posted some of my story, but I figure I'd post in the Newbie section

Welcome Greetings and Introductions
1

Hi all,

I'm 50 and was diagnosed when I was 45. I was always very active and athletic; I was teaching kids in our scouting group how to do walk-overs and cartwheels, and that was at 45, LOL. I was better than the 12-15 yos. Just saying this to show that I was doing okay at the time.

I worked over the weekend on a yard sale for our youth group and over did it, like usual, so when I woke up on Monday and couldn't move I assumed it was strain for over doing things.

(FYI: I learned from the doc much later that arthritis often comes on an individual after an injury or stress; its like a catalyst that sets it off...)

Anyway, it got worse and worse until I was unable to go to the bathroom without help, or dress myself without help, etc. When I drove to the doctor, my teenaged daughter had to help me get my legs out of the car and hobble into the office. Obviously it wasn't just over-doing it.

It took them 6 mths to figure out what was going on. I had no skin problems, for example, and in the meantime I was downing 4-6 advil at a time for the pain, which wasn't good.

The pain was all over: Both hips, both shoulders, knees, neck and lower back. Fun....

(FYI: I also learned later that PsA is diagnosed using the process of elimination. There are tests for the other forms of arthritis, but not for PsA. I also learned that its often inherited from a close relative. My father had psoriasis and arthritis, for example. )

So they found out by giving me Prednisone, which I reacted to badly. I had halucinations (just like my dad did on Steroids and some pain killers...) So they took me off after 2 days, but they said it was good news that the pain went away, and concluded from that that it was definitely some kind of arthritis.

FWIW, I was also being tested for Lymes disease, which kept coming back negative.

From Predisone we went to Methatrexate (sp?), which I kept throwing up, so I had to give my self injections in the gut for 3 mths. But it worked; I was mostly pain free between the Methatrexate and my favorite pain killer: Tramadol/Ultracet.

Along with exercise 3-4 times at the gym ea week, I took the Tramadlol 24 x 7, and was doing really well and even lost some extra pounds I'd gained through all of this.

I learned that when you can't move much and hurt constantly and food is the only pleasure in your life, you pick up the pounds, certainly.

This past year hasn't been going that great, however. I'm still just on Tramadol, but can no longer go to the gym. Its hurting more than helping. so now I'm trying to take regular walks and hikes, which is next to impossible in the winter and through major rain storms and ticks and you name it...WV is supposed to be Wild and Wonderful, but I find it weedy, rocky, windy, buggie and generally unpleasant...

The pain is getting worse and its in one foot a bit, and in my hands, now. The doc seems convinced that I have RA on top of the PsA. How he could tell the difference is anyone's guess, LOL.

I've had to up the Tramadol dosage and I'm wondering if its just a matter of time that I'll have to go on something stronger. Tramadol isn't all that strong is my guess since the Doc is pretty free with it and I can double it whenever I need to. ??

That's my story for now. My hips are the worst area on me. I am more affected by the WEATHER than anything else!!! I'm a walking barometer, LOL. And its bad here in WV; the pressure changes constantly. The doc says I should live near the ocean/beach.

So, as soon as I inherit my first million, I'm out of here. (Go figure...)

Kim

2

Welcome, Kim and thank you for sharing your story with us. Tramadol certainly isn't a permanent answer, but better medication management certainly is. The good thing is that with RA and PsA, the treatments are the same, so no worries there. Your persistence with walking is one of the best things that you can do for yourself, even if it hurts some days.

It may be time to discuss adding a biologic. The methotrexate alone doesn't seem to be cutting it now (not all that uncommon). With the right medications, you just might be able to get some of your life back. If you aren't doing well, please go see your rheumaologist and ask for some help. You do not have to live like this. It can be better, and I am a walking, working, functioning billboard for that statement!

Talk to your doc about your symptoms, but also (and more importantly) talk about how it is affecting your life and your ability to do basic activities of daily living, like work, house work, cooking, self-care. Ask what the next steps are for your treatment and to help abate the progression of the disease. Be persistent and be your best advocate.

I am so glad you made it to our page.Welcome again!

3

FYI, I goofed up. Its been a while since I was on an antirheumatic. The doc did put me on Arava after the Methotrexate. Of course they had to take me off of it because it'll fry your liver. (You remember all the blood tests, LOL. How I forgot about Arava, I'll never know. I hated the stuff...)

4

Did you end up with abnormal liver enzymes? Is that why they took you off of MTX?

5

Possibly. I just know it made me sick so he finally took me off since I was exercising regularly. I've always been athletic. And as everyone knows (or should know), exercise keeps your joints from deteriorating just as effectively as those liver-killing drugs everyone one takes.

Its only lately that I've been out of the gym, and low and behold, now things are getting worse. Not a coincidence, IMHO.

6

Actually, though exercise is beneficial, the only proven way to stop the progression of PsA is WITH bios or dmards. Without them, eventually, there will be irreversible damage done to the joints. Unfortunately, PsA is not something that can be treated with a healthy lifestyle alone. That’s why we have been so concerned reading your story.

7

No doubt. I didn't say its a cure, just that it goes a long way to build up the muscle tissue and joints, which will obviously retard deterioration.

what I did say is too many people don't ever bother to exercise and rely solely on drugs, as if they're the only answer.

8

Titian mom- when joints aren’t moving properly it can be very painful and speed deterioration because the joint may not be properly aligned. In those cases, physical therapy can be a good way to start the exercising process.

9

Its very easy to tell the difference in RA and PsA. And yes they can coexist. sadly neither disease should be allowed to progress to that point. A quick look at an X-ray is all it takes. pencil in cup vs erosions. There are still docs out there who choose to treat symptoms and not the disease. Fortunatley they are dying of old age, retiring, getting fired, uninvited to hospital based physicians groups, and otherwise leaving practice. Now if we could educate PCPs, we would really make progress. Seenie isn't here to recommend the Gladman book there is a new version. Its a good read

Also you mentioned in PM you werevtaking ultracet as opposed to ultram. This could explain why it isn't working as it once did. I thought ultracetc had been banned back in 2012, with the other tylenol based narcotics. Low and behold it wasn't, they merely lowered the tylenol to 325mg/tab from 500. Cruising the internet something I rearely do, I found a lot of complaints similar to yours. 3000mg a day of tylenol will eliminate a lot of pain (6 tabs ofbultracet a day) It of course is eventually a lethal dose because of the liver toxicity. More likley the cause of your increased pain is that you now have permanent damage from a disease that continues no matter what. Hopefullly by contolling inflammation some of that pain can be controlled.

10

Last night I read a *very* technical manual on PsA and it said some folks have very slow progression. It said milder cases of PsA *can* lead to progressive deterioration not definitely WILL lead to it, so its all dependant upon severity of PsA.

This was the guildline used by physicians, so I'm taking it seriously.

Another source:

Statement to patients from the American Academy of Dermatology:

"Treatment for psoriatic arthritis includes physical therapy, arthritis-friendly exercise, and medicine. A few medicines can prevent psoriatic arthritis from worsening and damaging your joints. Not everyone needs this medicine."

Just FYI. Also, I'm not taking 3000mg a day of tylenol (from Ultracet pills). Never have taken that much, so not sure where you're getting 6 tabs a day...might want to check the math. Perhaps you misunderstood, when I say doubling I mean once during a day every now and then. (I'm doing more of that than I like lately.) I'm Not doubling every dosage all day every day. Shewww! That would be a killer, LOL. I can't take that many pills; I hate pills, LOL.

Kim

11

You are perfectly capable of making your choices. The old 500mg were per tab a common prescription was 1- 2 25mg every 4 hours. I'm sorry I took at your word that you were taking the pills 24 - 7 (which would be 6 tabs/24 hours( but they were no longer working and doctor told you to double your prescription which would be as many as 12 tabs per day.. You also said you were wondering what the next step or something stronger would be.

I have never been to a dermatologist to treat arthritis any more than I would go to a proctologist for a sore throat. Althought the dermies use the smae meds much more aggresivley for Psoriasis when they can't get it under control) The standard of care is early and aggressive (at least for rheumatologists:) This matrix used of current PsA treatment and definitely the one our residents and fellows use We haven't had one YET who could predict who would and who would not progress an get damage Like the one who said not to worry about my shoulder, I sent him the bill for the new one, but he hasn't responded, Seenie has billed the doc who told her she mild disease for her new hips they haven't responded either:


Hopefully as your physician(s) evaluate what needs to happen with you, you are consistent in your reporting to them. best of luck to you. While everyone won't need treatment they only way to find out is when its too late. And don't worry about pills, most of the treatment is shots

12

Did I hear someone mention my name? Make that a hip, and two feet with severe damage that makes walking very difficult. I had serious doubts about that “mild” diagnosis, and I did seek a second opinion. Eventually. Unfortunately, the second opinion was that my disease was severe. At that point, the aggressive treatment couldn’t prevent the damage that had already been done. I regret not getting the second opinion a year before I did.
Titanmom, which very technical manual did you read? Gladman and Chandran?

13

Now that's what i need to know. I've made appts but have to wait, so we'll see. I'm not doubting that something is going on, just wondering why some days are really good and I don't need much help at all, and others I hurt all day. Is it just a less severe case and I'm okay, or Is it the weather, or is it more damage or what? If I am more damaged, then I wouldn't have "good" days where I feel pretty normal all day IMO. But then, I'm not a doctor. So its circular logic here.

What aggravates me is, I shouldn't have to have a medical degree to make sure I'm getting the care I need.

I know doctors make mistakes, and there are incompetent ones out there. My mother is dead because she went to a quack for a year who gave her only vitamins when she was actually dying of colon cancer, for ex. So I know they're out there. But my poor mom assumed he knew what he was doing. What's sad is, no one deals with these people unless you sue. Where's the medical boards and who is supposed to deal with making sure people are doing their jobs correctly?

I've also had very good doctors. But in the end who is "good"? The one who catches a disease? If that's so, then the Rheumie who I' working with now is good, because after 6 mths and several docs, he's the only one who figured out I had arthritis. Go figure.

Here's the exact title:

"Guidelines of care for the management of psoriasis and psoriatic arthritis" by a medical board, slew of doctors from all over the country. Dated 2008.

Kim

14

New development: I'm basically screwed so far. The doctors I contacted, now one says they are no longer taking new patients, and the other says I'd have to be referred by my current doctor to them before they'll see me. ?? So if I don't like what he says, I'm hosed, basically.

Otherwise I'd have to drive all the way to Balt-Wash to see someone. 2 hrs one way. Nice, huh? And there's no guarantee that any of them will see me, either. :(

I bet with Obamacare it'll only get worse and worse, too. Enjoy...

15

Kim,

the disease by its nature tends to give you good days, bad days, and in between days. Most of us think we're ding OK if we have more good than bad days. This has NOTHING to do with the damage being done inside our bodies. Most practitioners now COMMONLY treat PsA VERY aggressively just because, as in Seenie's case, what may appear mild on the outside is not mild at all.

Also, the disease is complicated to diagnose because many of us have active disease in our bodies but our blood work appears normal and, if caught VERY early, our X-rays show little damage at diagnosis. Again, this has NOTHING to do with how aggressive the disease may get. As you may have heard before, many of us operate in fear of the disease but NOT in fear of the DMARD and biologic medications which arrest the progression of the disease.

One last point, the disease, unlike RA, is progressive. This means it continues to progress over time. Unlike RA which tends to reach a point at which a sufferer has the maximum amount of symptoms, in PsA the disease will not stop getting worse. Which is why we want it treated, treated quickly and treated aggressively so we can put the maximum amount of time and distance between now and the full expression of the disease. If your doctor isn't talking to you about DMARDs and biologics and is only offering pain killers I would say look for a new doctor. Diagnosing a disease and treating it are different animals.

16

Just be thankful you can see Rheumies. Looks like the only way I'll see anyone is if I move, possibly. But the year is still young...maybe I'll find someone who can see me, yet.

I think what I'm going to do is wait until I see my current doc in June, then if it goes bad I'll have to keep trawling until I find someone, but you see I went through this when I was initially sick and I know what's out there already. But Lord willing I'll find another doctor this time, hopefully.

Its one of the reasons I'm with the one I have now. He's the only one who would see me as a new patient. And he was the one who said I definitely had PsA. I had been sent to a Neurologist (who wondered why the heck I was there...) and he said it might be arthritis, so I started looking for a doctor and couldn't get in literally anywhere else but with the one in my own area. I thought it was a blessing at the time, now I'm not so sure, LOL. By that time I was on Tramadol, BTW. That's all they would give me. That was in 2007...

Kim

17

Hi Kim, it just occurred to me that when a few of us in the UK were looking for specialist PsA rheumies in case we needed second opinions we got a thread going on here listing the people we found ...... so I've had a look through the discussions under the 'Recommend a doctor' section and found a great post about a rheumy in Martinsburg WV.

Google maps tells me that Martinsburg to Hedgesville is 8 miles. I'm sure you've maybe already looked him up but I thought I'd post just in case you hadn't found these discussions.

This disease is a thief and a robber and as others have indicated you don't always see what its stealing until its gone, never to return. So even if you do have to make a longer journey than to Martinsburg to see some one, do it before its too late.

18

LOL, that's him; he's the *only* doctor in the area, believe me...that *is* my current Rheumie (Dr. Rezaian), the one everyone here thinks is putting me in a wheelchair...interesting, isn't it? Just goes to show you, we have a mystery on our hands.

My hubby gave me a few ideas to try. He said i could try going to my Primary Care physician and ask about the Tramadol and get a referral from him, possibly to the one in Maryland that said he needs a referral. That might work.

Also, he said I should corner the pharmacist and find out what he thinks about my being on Tramadol, at least. He may not have anything to add about whether or not I should have been taking something for the actual disease these past couple of years, since he's not a doctor, though.

This entire thing is just gettin' weirder and weirder, IMO.

Kim

19

The pharmacist has a doctorate and many more years of training in pharmacology than the doc. Pharm D is 6 years opposed to 4 for MD. We just don't call them Doctor.

Not much of a mystery. People like docs for a lot of reasons. Medical skill isn't always at the top of the list. Being a good listener is. One of the most popular docs in the valley here is doing a Hard 10 in a Colorado Federal Pen for over-prescribing. (He apparently didn't get the memo) he was great listener and super sympathetic. There was honest to god people picketing the state board when they yanked his license after several local pharmacy refused to fill his scripts. people tend to not only like each other but professionals as well if they hear what they want to.

20

Wow, titianmom - you're going through a lot trying to figure this out and get the care you need! Going through your GP may be your best bet - many rheumys / insurance companies require referrals.

As for treating aggressively - I've lived with PsA for most of my life. I didn't get a diagnosis until I was 36. I went from hiking for miles and miles through the hills of CT with a 3 year old on my back to needing a wheelchair, crutches, or canes in three months. There was damage to joints seen via x-ray in February, significantly more damage seen via x-ray in April, and even more come September. It took from Feb to April to go from seeing my GP to seeing a rheumy, and then until December before figuring out other medical issues and getting me on biologics.