Lost in space!

General
1

Well, I don’t even know if I belong here anymore. Was diagnosed a year ago today with pSa. Saw a new rheumatologist tonight & she’s not convinced I have pSa yet. I have no inflamation, no swelling, no psoriasis…just rapidly decreasing movement in joints, extreme pain, & sleeplessness. She’s sending me for bone scan, then tests for ciliac disease & irritable bowel syndrome. My new pain med is Gabapentin (1-3x at night / 100mg). Not what I expected today…thought I’d start biological injections after 4 months of no improvement on MTX and Plaquinil.

So confused…

2

What a tough place to be in! It sounds like this totally caught you off guard. You are definitely welcome to hang out here, ask questions, etc until you find out one way or another.

3

Hey guido,

I'm with Sybil. It is entirely conceivable you have PSA but some (not all) of your symptoms have been reduced by the meds. My blood work is always normal and you'd be hard pressed to find ANY psoriasis on my skin (even before biologics) but when I answer the questions that are used to determine PSA...booyah! My fatigue was and sometimes is unbearable and I didn't sleep much last night because my hips have decided to flare up making it hard to walk today. In December I had to go to physical therapy because walking was getting almost impossible. If you respond to biologics there would be a lot of weight behind the PSA diagnosis!! Hang in there.

4

I am sorry you do not have a clearer picture of what is going on. I know how frustrating that can be. On the positive side, your doc is sending you for testing as opposed to dismissing your symptoms altogether. So she seems to want to run some things down. A PsA diagnosis can be something of a process of elimination. The phrase I key in on is that you new rheumy is not convinced "yet". Better a thorough assessment that arrives at the correct diagnosis and brings you to an effective treatment than floundering with an incorrect diagnosis and going untreated as a result. I hope you testing brings some clarity and wish you luck in finding an effective course of treatment.

5

New Rheumatologist jumps out at me too. I don’t have a lot of PsA symptoms because I am well managed. My rheumatologist is not the same on that diagnosed me, and he has asked me if I was definitely diagnosed and if if had symptoms at any point. I have reassured him on a number of occasions that I do indeed have PsA and that I had classic symptoms: sausage fingers and toes, joint swelling, swelling at tendon insertion sites, etc.

If you aren’t having as many symptoms now, it may be because the meds that you are taking are working some. If her plan is to take you off of those drugs, you will likely begin to have some of the symptoms that got you diagnosed in the first place. A lot of people don’t realize how much the dmards help until they stop taking them. Keep a log and document your symptom changes. It you have any obvious physical changes, take pictures too.

Getting where you need to be with meds for PsA can feel like an unending roller coaster ride. I can imagine your frustration. On the bright side, gabapentin can help with some of the pain and fatigue.

6

Thank you for all of your responses - I appreciate it.

I had my bone scan done and these are the results: Impression:
1. Increased uptake of bilateral wrists in a distribution suspicious for inflammatory arthropathy. Recommend clinical correlation.

I am happy that I finally have an answer that I have some type of Inflammatory Arthritis….now we begin to find out what type it is. I've asked my doctor if it only showed up in my wrists why do I hurt all over…maybe it still isn't showing up yet everywhere else - odd how the body works. How do rheumatologists even begin to pinpoint what type of RA people have - aren't there like 100's?

My RA doc wants to start me back on MTX pills, however, I am cautious - I always felt like it made my stomach upset. Is it true that MTX injections don't have those side effects? I was really hoping to start some form of biological injections. After almost 2 years of feeling terrible, not being able to move, not sleeping…I want a fresh start with meds to try something new.

Happy to have a partial diagnosis & happy I slept 6.5 HRS last night…thanks to Neurontin and percocet!

7

Hi guidob222, I am with ya. It took 6 mths for the various specialists to decide I had Psoriatic Arthritis, because I had no skin issues, either. Short story long, I woke up 5 years ago and couldn't move. Since I've always been pretty active/athletic, I assumed I over=done it working. But it got worse, so I went to a doc and they couldn't figure it out. Finally after 6 mths they started me on Prednisone which gave me halucinations, but at least the pain disappeared. Doc was happy, LOL. Mean't it was PA.

You see, unlike the other types of Arthritis, there is no blood test or anything to figure out PA. They use the process of elimination. Then he asked about my personal history; I never considered this, but my dad had Psoriasis (skin issues) and Arthritis! He just smiled and said, Well, PA is often inherited and said that clinched it. Figures, I am just like him in a lot of areas...

Now, if by MTX you mean Methotrexate (sp?), I couldn't do the pills, either. I'd throw up. I ended up taking self-injections in the fatty area of the stomach. Don't freak, it isn't as bad as you thing it is. Just pinch an inch (LOL) and do it. It isn't bad, really. Kinda makes you feel like a doctor... (Right....). And yes, the injections do not make you sick. It did the trick until they had to take me off of it. You can't stay on it forever; bad for your liver, etc.

For me after that, they just put me on Ultracet (Tramadol is the generic) and that's how I've been able to deal with it. The Tramadol works....usually. Its bad that you're suffering so much; they need to do something soon., Before I was dosing myself with 4-6 advil at a time, which will also fry your liver, etc. Not good. The Tramadol will make you a bit sleepy but after a while, that doesn't affect you. You just feel better and you can be your old self again, at least until you take your next one. Pain pills 24x7 is my life, now. I had to up the dosage after 3-4 years, I take 1 1/2 pill every 6 hrs and 2 at a time during bad periods.

Pergocet? Is that it? Or Percocet? My dad took that and had halucinations (altho it might have been Prednisone...) He and I are *so* much alike... Glad its helping you, tho.

At least with the Tramadol I don't see Elvis, LOL.

Again, lots of types of arthritis, unfortunately. PA is one they just guess at after all the others have been ruled out. Stinks, I know.

Kim

8

One other thing you might want to consider, once they get the pain under control. Exercise. For the first few years exercise did help me. I don't know if you are or ever have been a jock, but I went to the gym and did a workout 3 times a week and it really helped with getting myself back into my old life.

Unfortunately lately that's not been the case. The Doc has moved me to going on hikes regularly. Good thing I like ot walk and love hiking...however...it isn't as convenient as the gym. Sigh. But its cheaper. I actually had to kill my gym membership because I've been going but feeling worse afterward, instead of better. Which is odd. I backed off on the routine, told my hubby that if I go any lighter I might as well not go. So now I'm looking into finding places to hike.

He said to stay off of the pavement and sidewalks. I've got it bad in my hips. My main trouble. Also have it in my shoulders and neck a bit. I am numb A LOT. Stinks. You should see my driving down the road beating my hands against the steering wheel trying to get some feeling back into them. Weird...

Kim

9

YES! Luckily, the treatment will be the same whether its RA or PsA, so that shouldn't delay anything. And YES, YES , YES the MTX injections are MUCH easier to handle. Make sure to ask the doc for a folic acid Rx as well. It really helps with side effects. I started MTX with the injections and skipped the oral meds entirely, at my insistence. After reading everyone's experiences here, I was convinced that the injections were the way to go for me. I had very minimal side effects with the injections. The evening of, I had a little GI upset and ate a very bland dinner which made things much better. The next am, a little lower GI upset that passed by noon. Neither of these had a huge effect on me and I was able to continue with my usual activities without interruption.

Hopefully, the bios are in your near future as well.

guidob2222 said:

Thank you for all of your responses - I appreciate it.

I had my bone scan done and these are the results: Impression:
1. Increased uptake of bilateral wrists in a distribution suspicious for inflammatory arthropathy. Recommend clinical correlation.

I am happy that I finally have an answer that I have some type of Inflammatory Arthritis….now we begin to find out what type it is. I've asked my doctor if it only showed up in my wrists why do I hurt all over…maybe it still isn't showing up yet everywhere else - odd how the body works. How do rheumatologists even begin to pinpoint what type of RA people have - aren't there like 100's?

My RA doc wants to start me back on MTX pills, however, I am cautious - I always felt like it made my stomach upset. Is it true that MTX injections don't have those side effects? I was really hoping to start some form of biological injections. After almost 2 years of feeling terrible, not being able to move, not sleeping…I want a fresh start with meds to try something new.

Happy to have a partial diagnosis & happy I slept 6.5 HRS last night…thanks to Neurontin and percocet!