Unlike anything I have ever experienced

General
21

Hi Folks,

Been struggling with periodic pain related to psoriatic arthritis. Mostly feeling incredibly fatigued. I am a teacher, and by 3:30 I am ready to lean against a wall and just fall asleep. This is highly unusual for me, as I've always had immense amounts of energy. Tried several weeks on Humira, but had numerous side effects, largely contracting one upper resp infection after another. Now on week 6 of Embrel, and although the pain is greater on this biologic, I am not having many of the side effects I had on Humira.

Spent a night in the ER with what they thought was pneumonia. Wrote this poem while hanging out at the hospital...

Ode to Humira

By Marianne

  1. This drug

Makes me sweat behind my knees

Ooze in places I didn’t know

Contained pores.

I am wet behind the ears,

Not girlish naiveté

But the glut of this biologic

That seems to have taken up

Residence

In the grit of muscle and bone.

I touch the back of my neck,

And my fingers emerge dripping

With what keeps escaping.

My body leaks

And shines onto my fingertips.

There is nowhere I can touch

That is not wet with

The insides of me.

  1. My ankles and feet

Have become slivers

Of disconnected muscle,

Tissue shattered,

Unwilling to support this body

That danced on pointe at age six.

I am betrayed by my own feet,

Study though they may appear,

They harbor no foundational illusions.

I am my grandmother now,

Craving a supportive arm

To brace me, through those first few steps.

I reach out into empty air.

  1. Flares of rash now populate

My skin. I remember

Stretching mornings,

Running my hands down my thighs,

Gently pulling knees to chest,

One at a time,

Sinking into the smoothness of my own skin.

Now my fingers stutter along bumps,

Patches of protrusions that I want to

Claw away

But don’t because I worry

They will erupt into infection sites,

Throaty volcanoes on my body

Announcing their coup of my flesh.

I do not know this skin

Beneath my fingers.

  1. My hands are an altar of scrubbed hygiene

And I remember Sister Marie Charlene’s mantra

“cleanliness is next to godliness”

And I wonder where the sacredness is

In all this scouring,

This daily gouging and purging of day dust

Out of my fingernails,

This sloughing off of self.

My hands are shields of purity

I don’t want to think about what bacteria

Could ingest through my pores

And I still want to embrace everyone, fearless

And unafraid.

  1. My hair gathers in my brush

Handfuls I pull out, toss into the toilet.

The wad of hair separates

And becomes a broken spider’s web, floating, drifting.

There is an ephemeral grace to this water dance,

A human hair lily pad

Minus the flowers.

A whole row of eyelashes, too,

Has disappeared.

I apply three or four layers of mascara,

Painting on that which

Has smeared off

The canvas of my eyes.

Namaste,

Marianne

22

Grumpy, I'm sorry I'm late to the thread, but I, too, are so very sorry you are having such a tough time. Sometimes it feels like we finally figure out something that works, and the next day it doesn't anymore, and that is so frustrating. Keep at it. You will make it through. Rely on your husband to know when to draw a line in the sand, and don't fight him. He's got your back, and that is such an awesome thing to have - someone who loves us even on days when we have trouble loving ourselves. Keep finding things to look forward to, and it will help to get through those days when everything is falling apart. I'll be sending warm, fuzzy thoughts your way.

K

23

Bummer Grumpy Sorry to hear it. I am new to all this, so I can't offer advice, but I can send a huge virtual hug xx

24

:slight_smile:



janeatiu said:



GrumpyCat said:

:slight_smile: love NdGT… One of my faves… Thanks for putting a smile on my face.

25

Hi Grumpy,

I'm so sorry about your pain. I had pain like that in the hospital last July when the wonderful staff at my wonderful hospital decided that I "did not need'" my 60 mg of Morphine twice a day. I woke up screaming then too... Pain like that is indescribable....and unless you've experienced it (Lke if you had major surgery without anesthetic) you shouldn't talk about pain)

I know there is not too much I can do for you....but what I can do, I will do. And that is I will pray for you.

Do you have a pain management doc? My life was a living hell until I got on the right pain meds. Those meds are heavy duty and I hate that I have to take them...but honestly, I would be long gone if I did not have them to help...And even WITH those meds, I still have very significant pain...but it' s tolerable. PLease try to get a decent pain management doc.

I'm so sorry that you are hurting. I believe you---that your pain is indescribable....You need to get a doctor to also believe you.

HUGS and Healing prayers

Cynthia

26

I have been to PM. I was not at all happy with his treatment the last time I saw him. He upped the drugs I was taking which made me stuporous. I refused to continue at that dose. And asked for a different treatment. He gave me another drug, but before taking it, did the conversions and realized it was also a much higher dose. I kept trying to tell him what I wanted, not something stronger, but something different, and he ended up telling me I needed psych help. He really was not hearing me. He thought that I was taking double the amount of drugs that I was, and I kept correcting him, but her kept repeating the same high doses. No wonder he thought I was “seeking”. Anyway, I don’t want any more narcs than the ones I take until someone says that is the only option. I should see the Hopkins docs in December. I can limp through until then. I will be seeing a colleague who is a PM specialist (also in December). I hope he doesn’t have as much ear wax impacted in his canals as the last guy.

27

You are so blessed to have a treasure of a husband. MY husband, if I tell him I'm hurting badly he says "so what is new?" He doesn' t understand that it never gets "OLD"....Pain is fresh and each experience of it is like the first pain you've ever had. You never"get used to it" to the point where you can just suck it up and function ignoring the fact that rats are chewing your legs off.

How wonderful to have a "doting " concerned husband.

28

Sorry you are in such a crappy place at the moment.

Thankfully, you have a loving partner to help.

I hope you get some help with this soon.

Take care. Xo

29

My husband is one of the best things that has ever happened to me. I get the "woe-is-me's" and tell him how sorry I am that he is experiencing this too. I know it sucks for him as well, just in a different way. He tells me over and over that there is never a day or even a moment when he isn't thankful that he married me. I can not imagine going through this with out his support. I would be a hot mess.

30

Prayers for you!! =D

31

My faith in God is what helps me. This is an everyday fight for our lives and our quality of life. May God guide the doctors on your behalf! You can do it!

32

There is one thing that you can count on...As I prepared for Oral surgery last Friday, I stopped my MTX and Enbrel 10 days earlier. I did pretty good for several days. I thought that maybe I could do without. I have until Wednesday of next week before I can start them back up. I did not need any pain medication for the Oral surgery which included removing a 18 year old implant that had become infected. It required a bone grate which was completed. Now post surgery I feel that I am over the surgery to a large degree. But my other pain in coming back so hard and fast. There is a storm coming in that has me fearing that I am going to be curled up in a blank with a heating pad. I do take Gabapentin every day but most day it takes the edge off of the normal everyday pain. I am now discovering that I feel like screaming. I had an injection in my knee as I went off the MTX to help me walk. It is now starting to leave me with the pain....So to continue you can count on the pain. It may not be every day, but you can count on it...You said that you do not have faith...I can tell you that your prayers will be answered. This I know with the same surety that the pain will come back. He has lessened my pain.

33

The last time I had oral surgery, I recall appreciating the PsA pain....... BUT I do love the drugs the oral surgeons use. I have always said if you want the good stuff see a dentist :-)

I have a huge dislike for narcos and refuse to use them for the "disease" but certainly recognize there is a time and place for them (anyone who says otherwise has a day reckoning coming when the disease really takes off) BUT I will tell you this.Grumpy There are time's for a very few people, and you are one of them as I have gotten to know you, that have Cowboyed up with the pain and disease so long that their pain system gets so wacked out it needs a major reset. They wake up one morning literally screaming as did you because nothing (physiologically) is working. (I'm not talking about the hysterical ones. We know lots of those.....) These are almost always the young ones with active disease, usually men but often high performing women.

Tricyclics would be the first step and MAYBE a couple days hospital bed rest and a short course of IV pain meds in the hope your own body will go back to work after). But you have got to get the endorphins flowing NATURALLY somehow. I have also seen AMAZING results with LDN therapy (Low dose Naltrexone) and certainly would look into it. (ND is the OPPOSITE of narcos)

By reset I'm not referring to those folks who have been laid out by pain, but strictly those who have pushed through their disease despite the pain.

34

Lamb,

I've missed you. You know me, I'm still trucking through. And it suuuuucks. I am putting everything I have into my patients because it helps. If I am working, I am living. I am contemplating longer term steroids, at least until I can get the Hopkins docs going on me, so until early or mid December. You know I have no time for bed rest, such a kidder you are! I would love to go to the ER right now, but that will have to wait until December as well. What do you think about 10-20 of pred a day until then? I have to live. I shot an email to the GP today begging for imipramine (tricyclic). I was on it as a kid and mom recalls that it was pretty amazing as long as I was compliant with it, Here's my thoughts: 10 or 20 of pred. Add in the imipramine. Are there any faster acting anti-depressants? I can't think of any, but I feel like I need a bolus. A steroid bolus wouldn't hurt either, but again must wait until December. I did get some Toradol for emergency only use from the GP. She gave me 9 and said to use them sparingly and that I'd better not damage my kidneys and that she can't believe I talked her into this and some other things. It makes the screaming pain go away so quickly. I wish it weren't so nephrotoxic! It is the best drug for my pain. I'm the whack-a-do who gos to the ER and begs for Toradol instead of Dilaudid. I love the expressions on their faces! I wonder if I could get the GP to order a cheap steroid soln that I could have the hubs IM inject for me? There's a thought too.

35

If it were me......

I'd do what you are doing Except instead of imipramine (unless you also have a bed wetting problem) I'd start with 25 mg amitriptyline at bed time as you have more dose control. But I'm thinking pain control and decent sleep not so much anti-depressant. But then I'm also really cheap.....

As far as the oral steroids 3 days on @20mg and 6 days off seems to be the new trend It avoids a long painful taper and the psoriasis that always follows predi.

I know you understood I was joking about zoning out high on Dilauid for a couple of days. I'm not sure anyone else caught it..... FWIW I have a standing order for Torodol (and a written script in my wallet) welcome to the wackadoos

36

Lol! I used the imipramine as an anti-depressant as a teen. No bed-wetting....I don't think. I got the Rx for that. I have a call in to the Rheum now. I will ask for more steroids to be called in and try the 20x3days then 6 off. I do feel like an IM might help though. I'll ask how he feels about that.

What about adding the Amitriptyline too? Too much? I know I have read somewhere about taking two tricyclics without issue.

37

Thats over may pay grade, but I don't think it should be a problem as a bedtime med. Amitriptyline is a pretty pure drug.

38



tntlamb said:

The last time I had oral surgery, I recall appreciating the PsA pain....... BUT I do love the drugs the oral surgeons use. I have always said if you want the good stuff see a dentist :-)

I have a huge dislike for narcos and refuse to use them for the "disease" but certainly recognize there is a time and place for them (anyone who says otherwise has a day reckoning coming when the disease really takes off) BUT I will tell you this.Grumpy There are time's for a very few people, and you are one of them as I have gotten to know you, that have Cowboyed up with the pain and disease so long that their pain system gets so wacked out it needs a major reset. They wake up one morning literally screaming as did you because nothing (physiologically) is working. (I'm not talking about the hysterical ones. We know lots of those.....) These are almost always the young ones with active disease, usually men but often high performing women.

Tricyclics would be the first step and MAYBE a couple days hospital bed rest and a short course of IV pain meds in the hope your own body will go back to work after). But you have got to get the endorphins flowing NATURALLY somehow. I have also seen AMAZING results with LDN therapy (Low dose Naltrexone) and certainly would look into it. (ND is the OPPOSITE of narcos)

By reset I'm not referring to those folks who have been laid out by pain, but strictly those who have pushed through their disease despite the pain.

I agree with you and the thought of a reset. I was really bad with pain and was taking 180 mg morphine every day. It got to a point that it was not working. My whole attitude was different. I elected to stop taking the drug. Not by choice but by mistake. I ended up take a ride in a ambulance, to the hospital. They put me on a I.V. gave me some drugs to stop the pain. I rested...slept in bed for 3 days. I left the hospital a new man. I avoid narcotics now. But a side note is that steroids increase your blood sugar. I am now border line diabetic. Be careful with the steroids. I love them because I feel somewhat human for a week or so then reality set back in.

TLamb you are great...you are spot on.