Facing a Steep Learning Curve...and Temporarily Losing

General
1

I bet y'all see this a lot, so I apologize - in advance:

I was diagnosed PsA with Secondary Sjogren's in Oct. 2012. It's a wonder it happened then, because the route that landed me there didn't seem to make sense for most doctors. My chief complaint after a few months home from Basic Training (I'm in the National Guard) was (is) that I was incredibly tired. No matter how much regular, "good" sleep I got, I just felt endlessly fatigued physically and mentally. Finally, my GP referred me to a sleep specialist for potential narcolepsy. I performed the night-time and MSLT tests. I didn't hit all the criteria for narcolepsy (although I did fall asleep in 4/5 naps after sleeping "solid" for 7 hrs and 15 min the night before. But what was strange - and unexplainable - was that I had 167 "spontaneous arousals" during that 7 hrs and 15 mins. That's an average of 23/hr, and the norm for humans is <5 of these an hour. So the sleep dr was perplexed. He started me out on Nuvigil, which only made me more tired (and somehow depressed feeling?). So I nixed that and the sleep dr. started me on Adderall IR (which helped, and hurt...alot). My body seemed to be metabolizing any kind of amphetamine (both IR and XR) 3x faster than the average person, and I built a tolerance to everything on the market so fast that my dosages were getting through the roof. I knew that wasn't a long-term solution for the fatigue, but a temporary bandaid.

While addressing this fatigue, it seemed like I had a host of weird things popping up on me. My eyes began feeling eternally "uncomfortable"...like I just wanted to (and still do) keep a hot or cold compress on them all the time. So I went to an ophthalmologist who started me on Restasis. I then started having hand pain, especially my "mouse" hand. Then my fingers started buzzing like someone hit my funny bone. Then I got diagnosed with asthma (mind you I was a Div. I cross country runner not long ago). Then one of my feet started buzzing and everything - especially my hands - seemed to hurt ALL the time. My allergist was perplexed and referred me to a physiatrist. At my first visit with the physiatrist, I was only two minutes into explaining this exact "story" when the Dr. said, "There's no doubt you have a major autoimmune thing doing this to you. You need to see a rheumatologist for that."

After a 2 month wait to get into this rheumatologist, I was sad and relieved to FINALLY have someone put the whole picture together for me. His initial impressions were PsA and Sjogrens, and likely fibro and CFS. Blood tests came back negative for R factor, but my hands clearly met the PsA criteria (DIP joints affected). This all said, I don't have psoriasis. At least not yet...

I told the rheumy I didn't want to have to resort to amphetamines for fatigue and hydrocodone for pain bc I know those things just aren't sustainable. I expressed that fatigue was my main concern bc it was affecting my life so much. So he started me on oral MTX 10mg/wk. Well, three months of that adding to my fatigue and creating nausea out of nothing, and I wanted off. I had to bring up to my rheumatologist at my 1st 3-mo follow-up that if he was going to keep me on MTX, I wanted to inject it. So he agreed and upped it to 15mg/wk self-injected. So I did that for the next 3 months, and didn't see much - if any improvement. All this time, I'm having an inner struggle trying to maintain a normal life as my fatigue seemed to worsen, flares got crazy painful...y'all know the story. I ended up leaving my desk job because typing, mousing, and staring at a screen all day was more than my hands and eyes were able to handle anymore. I decided to go back to school (I have an MBA) and pursue a different career field that didn't include typing for the rest of my life.

At my 6 month follow-up, my rheumatologist added Humira, 2x a month, and kept me on the 15mg MTX (which I begged to get off of). I've been on Humira for a month now. I don't see any drastic changes, but moreso in a month than 6 months of MTX. Sidenote: in his first notes from my first visit, this rheumy wrote that I likely had fibro and cfs, and that he believed Savella would be a good treatment for me at some point. That was 8 months ago. Despite me asking him bluntly - and explaining to him that my physiatrist and psychologist (a cognitive behavioral therapy expert) both think I need to be on Savella (or something like it) NOW, he says it needs to wait. If he had it his way, I'd just be on MTX and Humira, and the sides and additional fatigue they cause...well, it's not his life that is falling by the wayside as I feel like I'm clawing just trying to make a simple living.

While I'm being treated as a lab rat to isolate the medicine variables, I am unemployed, spending less time with friends and family (mainly bc of low energy and can't drink even a few beers). I basically feel worse than I did when I started the MTX. And I don't want to let everything slip away while I have to spend what little energy I have left on nursing myself every day. Wah wah, I know. Most of you definitely know what I'm talking about, but probably much worse... I'm 29 and have no permanent joint damage (yet)...and I "look" healthy. I just feel like I'm 95 years old on the inside.

Right now, my "status" is as such:

Eyes still bother me (6 months of restasis didn't work, so it's Gel Tears all day, and PM gel at night)

Hands and Feet still buzz (confirmed bilateral carpal and cubital tunnel)

My muscles and tendons hurt all the time, only thing that helps is hydrocodone and I refuse to take it.

Despite Provigil (which is an "ok" answer for me), I'm still gassed most all the time

I can't run at all without serious backlash in the form of fliud on my patella tendons, burning achilles, and days of leg and hip pain down to the bone

I don't know what type of work to seek that doesn't somehow cause me pain

The list goes on... hahaha

So I think my endless rambling should make this simple point clear: I am new to this and have NO idea how to live my best life with this. I'm looking for all the "secrets" of living with PsA, fibro, CFS, etc. I'd like to do so with minimal medication (if possible). I wish I knew what tricks help with the pain and fatigue. I wish I knew whether or not I really need MTX, or if it's making me "dumb" (brain fog). I wish I knew how bad (or good) this disease truly is. I have a million questions, but don't seem to find answers from doctors (because they don't have what they're treating!). So I would be majorly grateful for any input in the following areas (or even beyond):

Biologics: are they a must?

MTX: Can I please get off this stuff that doesn't seem to be doing anything good...

Addressing Fatigue Medicinally and otherwise

Controlling pain: what are most of you doing for this?

Vitamins/Supplements?

Diet: is it critical to the point that it's actually a game changer for anyone?

Careers/Support/Disability (btw I am facing a medical discharge, which will probably take 15 years)

Exercise: just 1.5 years ago I was killing P90X, now a push-up is not an option. Any chance of getting back in "fighting shape"?

Best AD for PsA/CFS/Fibro?

In case it's of any use to anyone who is willing to share some input, here are the medications I'm currently taking, followed by a list of medications drs have tried on me for various things, but discontinued for lack of efficacy or intolerable sides:

Current: MTX 15mg/wk, Humira 40mg 2x/mo, doxepin 10mg at night for sleep, Provigil 200mg 2x/day for fatigue (not the wonder drug the internet and tv sensationalize it to be), Tylenol and Advil for pain

Discontinued: Hydrocodone 10/325 2x/day (only got this twice and don't want to risk all the sides and dependency issues just in case), Tramadol (didn't do anything), Wellbutrin SR 150 2x/day for fatigue (wasn't bad or good, just got to where I didn't have any emotion), Adderall IR/XR, Vyvanse, Dexedrine IR (discontinued all amphetamine stimulants due to negative apersonal affect, weight loss, and unavoidable crashes), Lexapro (put me straight to sleep), Mobic (didn't touch pain), Restasis (still no tears), benzo-based sleeping aids (just don't think they're the answer for me). That's all I can think of for now, aren't you glad?

Anyways, thanks for reading this rant and shedding any light you can for a newbie. I'll pay it forward one day!

Brother in buzzing arms and feet,

Spencer

2

Hi Spencer! There is lots of great information in the forums, and they are searchable. Seeing that you're so young, I completely understand your concerns about getting back in shape. While it's important to keep moving, you may find that your exercise needs to change. When I was first diagnosed, taking walks was really hard. I felt like I was moving through water, and everything hurt. It's gotten better.

You were asking about MTX. . . .You can talk to your doctor about alternatives. I was on it for 6 months, it did nothing for me except make me nauseous. I got switched to leflunomide, and it works much better. Also regarding diet, there are people in this group who swear by it. There certainly are people who are sensitive to specific foods, but there really are no hard and fast rules. Overall, eating a healthy diet will support your health. You can try out different diets and eliminations, but it won't cure you. It may simply support you.

Fatigue may be an ongoing problem. That said, it may improve as the disease gets under better control. But keep in mind, you have quite a few different issues going on. As some health issues get under control, you'll better be able to address others.

You may never go back to how you were, but you should be able to find a new normal that is manageable.

3

When I was first diagnosed my rheumy had me on MTX only. I tried to deal with it for a couple of months but it just was not for me. I am not a napper by any means. MTX had me in bed sleeping after work every day. He took me off and now has me on Remicade. Not perfect by any means but now I can function. Sure there are daily aches and pains, but nothing I can't deal with. Had a couple of nasty mornings last week and looked into getting some pain meds. Decided to nix that idea and just worked my way through. I still have tired days but just write that up to PsA/Spondy. BTW, I'm in IT and type ALOT. Remicade has surely helped with DIP joint issues.

4

Thanks for the responses, guys. I may be a little trigger happy, but I'm all for going to big guns to point myself towards remission. The big guns being Remicade and Savella. Good for you for passing up the pain meds. I know it may not always happen. I'll have times when I have to turn to them, too. But anything that plays with your neurotransmitters like opiates do, I'd like to avoid (personally).

Wow, IT... I can't imagine. I was an auditor which was 100% typing and mousing. It got to be so bad I just couldn't do it anymore. Glad to hear there's hope for my fingers... and yours!

As for the fatigue issue, I'm hopeful it's all part of inflammation that a biologic will eventually control. The more I read about autoimmune fatigue and the prevailing theories as to what causes it and how to treat it, the more perplexed I become. I've seen a good bit of info about treating CFS with anti-virals/anti-malarials (which seems way out there and pretty bizarre). But I don't hear any of my doctors ever talk about anything "cutting-edge" like that.

Looking forward to learning more from the pros!

5

Hmm. You mentioned anti-malarials for CFS. Haven't heard of it used specifically for that, but I've been on plaquenil for 5 years now. It is often not used with PsA because it can increase psoriasis, but I have never had more than a few spots. . . knees and elbows, nothing too bad. For now, if you're hands are bothering you when you're typing and mousing,you may want to try using arthritis gloves, that give support and warmth. A lot of people find them helpful. I also switch hands that I use the mouse with. Hope that helps.

6

UNDER NO CIRCUMSTANCES AT YOUR AGE SHOULD YOU BE TAKING MTX' ADVIL& TYLENOL!!! If you doctor told you too, RUN to a different one. If your pharmacist knows and didn't qyuestion the Doctor, you need a new pharmacist. You only have ONE liver, new ones are hard to come by and VERY expensive. That combo will kill you.

A track ball mouse works well for me......

n your list of meds I didn't see any FOLIC acid mentioned... The OTC stuff is near worthless most of us on MTX have a script anywhere from 1 - 5mg/day to avoid side effects. Shooting your MTX im - instead of sub-q - instead of pills will not only make it work better but elimintae a lot of side effects.

Fatique is a COMMON component of PsA (perhaps the most common) When the inflammation gets under control it will slowly get better (until it comes back. It isn't real BTW, it only feels real because its systemic not neuro. YOU CAN work through it without ill effect in other words you won't get any MORE fatigued. Its matter of training yourself to do it

It takes a year or better to get a good combo. Its highly unlikley you have all the disease you are mentioning, but thats fine for now getting things under control is what matters. The Dx's will sort themselves out. Your NSAID should taken, every day, it simply won't work on chronic inflammation taken willy nilly.

You need to have a sit down with your doc's and figure out who's doing what. Your treatment plan is a mess and very unclear 9from what you said here anywuya

7

Definitely have to keep moving no matter how hard it is. I’m still not perfectly managed on MTX and Remicade, but I am much better. I still have that week before my infusion where I feel like death warmed over. Now that I am finally back at work, that is where I want to stay. I am an RN with a lovely desk job and a wonderful group of supportive colleagues and managers. I am incredibly lucky because this is a job that I can continue to do and still be a nurse. When I was off work, I couldn’t imagine getting back and slugging through 40 hours, but I did it. And even when I feel like crap and have to have good, crying, snot feat siting on the toilet lid while the shower warms up, I still get my ask in gear and get moving. (Thanks, Lamb!)

If I hadn’t followed the advice of others, I think I would be waiting to get denied for disability at this point. Please, don’t think that I am minimizing those that do; this disease sucks and takes more out of people that we can foresee.

I say this over and over, but for me it is so true. The first year after diagnosis is the worst. Now, you know what it is and someone should fix it! I’m here! Treat me! Give me the best you’ve got! Unfortunately, that’s not how it works. Most people have to get started on MTX. I was lucky to start Remicade right away, but I was already on (and failing with) Humira. I had great results for over a year, then, POOF! Followed shortly by, OWWW! You will get there, to your Big Gun drugs. It takes time, and that is what makes this year the worst. But, you will slowly see improvement, and you will gradually work your way up the stairway to perfect biologic heaven and find your match.

As far as supplements, I take vitamin D, a B12 complex, ginseng, a multi, extra calcium, folic acid, COQ10, and I am still hunting a glucosamine gummy or small tablet, acidophilus, and melatonin.
B12 and ginseng for energy
Calcium, COQ10, D, and glucosamine for mah joints and bones
Acidophilus for mah tummy
And 10mg of Melatonin to knock me out

I know that’s a lot, but I am getting to where I can feel a difference if I don’t take them and the melatonin works better than Ambien. The folic acid is super for helping prevent the side effects from MTX. (I stopped for a week, and man, does MTX do weird thing to me with out the folic acid!) I was taking 5mg of that by just mega dosing the 800mcg tabs from the pharmacy. I got an rx this week, but its just for 2mg. We will see how it works.

For pain, I take ibuprofen Lidoderm patches and Cymbalta, I love Lidoderm. I have two patches smacked on my back and one on my wrist. All I can honestly say is, aaaahhhhhhhhhhh! I also take some other Rx’d meds that I don’t like admitting to. But, I’ve tried life without them, and I’m not strong enough to cope with that much pain on my own. You seem like the kind of guy that would REALLY benefit from physical therapy. It feels sooooooo gooooood! Warm water therapy, TENS machines, heat packs (I prefer moist heat), ice packs, Pilates balls, heated blankets and throws, stretching, yoga, Pilates, walking, biking are all wonderful methods of pain control. Changing tasks when you hurt also helps me. If I’m vegging and I have pain I get up and move, if I’m standing, I lay down, or sit, or stretch. It helps distract me from the pain for some reason. I also spend time with my animals. That will actually reduce the pain for me. My kitties like to lay on whatever body part hurts. They’re weird. My dog likes to pretend he’s a lap dog. He’s not very bright. But they always perk me up.

There is so much change and loss occurring in the first year, and it is a lot to manage. But, you will learn how to do this and still be you. Even if you took away ALL of the things that you think define you, you are still the same person and they are just things. You said it best, you ARE facing a steep learning curve and if you spend this time investing in yourself you will find that you can still manage to live a whole and full life. The more you research, ask questions, learn your new limits and advocate for yourself the more power and control you will have over PsA and your life.

Good luck to you, my friend!

8

So hey. We all have really long thoughts here. We are all here to offer our thoughs and suggestions and what works for us. It may not work for you, but it does for us. Find a doctor who helps you. Find somone who helps you, find someone who listens to you. find somebody who gets it. Keep on, I did. She has worked with me to find a cure - not there yet but we are wokring on it. Do not give up, I am not! This disease is not going to beat me, don't let it you!

9

Waiting for the meds to get just right does take a long time, but it may not be that long before things start to get more bearable.



Spammy said:

I’m newly diagnosed with PsA and still waiting for meds and/or supplements to kick in.

Rx: Prednisone 10mg, Methotrexate 10mg, folic acid 1mg

Supplements: glucosamine, chondroitin, probiotics, vit A, calcium, zinc. For inflammation - papain, bromelain, turmeric (curcumin)

I’m allergic to NSAIDS and have had constant pain for 5+ months. It recently started to intensify, so rheumy doubled prednisone. It’s hard to hear that it may take a year or longer to get the right combo of meds. I don’t think I can last that long with pain.

10

Thanks, GrumpyCat!

GrumpyCat said:

Waiting for the meds to get just right does take a long time, but it may not be that long before things start to get more bearable.
11

You wrote:

Biologics: are they a must?

MTX: Can I please get off this stuff that doesn't seem to be doing anything good...

Addressing Fatigue Medicinally and otherwise

Controlling pain: what are most of you doing for this?

Vitamins/Supplements?

Diet: is it critical to the point that it's actually a game changer for anyone?

Careers/Support/Disability (btw I am facing a medical discharge, which will probably take 15 years)

Exercise: just 1.5 years ago I was killing P90X, now a push-up is not an option. Any chance of getting back in "fighting shape"?

Best AD for PsA/CFS/Fibro?

Answers:

Biologics are a must. They're the only thing that really works.

MTX can help the biologics work better, but on it's own, it's not very good.

Diet: Well eating better never hurts

Supplements: Ask your rheum, I would NOT take any supplements not cleared by your rheum.

Exercise: Don't hurt yourself, but when you can exercise again, do it.

It looks like you have other biologic options such as using more Humira, or using Enbrel, Remicade or Simponi.