Anyone Have PsA of the Spine?

General
1

Hi everyone, the new(er) guy asking another question. My main area of pain has been from the right SI joint and the lumbar portion of my spine. Since 2007 I've had problems at the C5,6,+7 which I'm going to discuss with my Rheumy this Friday. My tests have also shown that my L5 + S1 are naturally fusing together.

So with all of that being said (typed), is anyone else experiencing any of these symptoms or have PsA of the spine? I understand that everyone is different, however kinda wondering what life has been like with PsA of the spine. Also how long can a period of remission last?

As a side note, if someone does have PsA of the spine, do you use a TENS unit as part of the therapy?

Hope that you guys and gals aren't getting sick of my questions. I am just hurting and nervous about what the rest of my life is going to be like.

2

Hi BuickBoy! I have fibromyalgia and I'm told by many people on the boards that it may eventually morph into PsA. Like you, I have a lot of pain in the SI joint area. For me it's been non-stop for 5 years. Very painful, very exhausting. No remission for me but I think that may be a bit unusual, so don't use me as any sort of a measuring guide.

Are you on any meds to stop any further fusing of the spine? I hope so. It's good that you're in treatment and getting help for this disease, BuickBoy, and this is a great place to come for support.

I myself have never gotten relief from a Tens machine but quite a few people on here and another board swear by them. I know you can get them very inexpensively so I think it's definitely worth a try.

What is life like with a disease like fibro or PsA affecting our SI joints and spines? Very difficult at times. In fact, I got a cane (one with cool designs on it) to help with getting up and down stairs and retaining my balance, for occasional use. Ice is my best friend. Sometimes the pain is so intense that I daren't even move on the couch or breath or sleep or think. I can almost feel the pain emanating from the SI joint, as if it were a radiator letting off red hot, painful steam. I feel like the most vital area of my body has been shut down, so I can't stand or sit properly, sleep well, twist, bend, stretch, etc.

That's my story, now how about yours?

3

yes I have Axial PsA and all my large joints and some small joints just for giggles. I have enthisitis too. It seems like everywhere some days I have perpetual enthesitis in my sacral tuberous ligament (read pain in the ass with that one). My right SI and ileac crest are a huge problem. I have DDD in my lumbar spine but my rheum says it is all PsA so hey I believe him. I have Tspine issues at T 7 I think and C spine issues too.

Humira has addressed most of my pains but not all of them. I don't know what you would like to know. Will it get easier, well yes it will. Will it get worse well yes if left untreated. I believe that although some, and I mean very very few go into remission . No kind of PsA is good. PsA is a very aggressive disease. I have a friend with RA. She is diagnosed longer thatn I am and is in better shape.

You already have fusion happening at L5/S1 so your disease has been around for awhile. A tens unit may be helpful if you have alot of muscle spasm.

Please do not hesitate to ask questions. Ask as many as you like nothing is to trivial to ask if it will help you understand this disease or alleviate you fears. Believe me when I say we have all been where you are. We will never be sick of your questions.One of the answers may be to a queston we need to ask ourselves.

4

Hi BuickBoy,

Welcome to the forum!

I have spinal PsA, and it shows all over my x-rays (cervical, thoracic, lumbar, pelvic changes, iliac crest, SI changes, spurs, spondylosis, etc, and also have DDD). I use a tens unit when flaring. It does help a bunch! If you decide to try a tens unit, get the medical batteries with longer life, so you don't have to carry batteries around with you. I also like the stick-on, single-use heat patches you can get at any drug store. They help with the spazzies. I also use Flexoril for spasms. Voltaren gel is useful. Talk to your doc about which of these can and cannot be used together. Physical therapy, with the right therapist, can be extremely helpful, too! Although my PT ALWAYS advises ice, I confess I just can't warm up to it. (Pun intended!)

I'm taking methotrexate and plaquenil. Just had a couple of weeks off from my meds, and I didn't realize how much they were helping me until I had time away from them. Treatment makes all the difference in the world. I still have pain with the meds, but, without them, I cannot function. For example, no meds=15-20 minutes on feet. With meds, I can stay on my feet long enough to do a load of laundry and cook dinner!

This board is for information and support. Use it! Questions are always welcome.

BTW--My bro and SIL are Buick fanatics and belong to a car club with their 1968 Buick California Special. Luv going to the car shows with them. I take a lawn chair and binoculars. :-)

5

You are in Luck Buick Boy! The hottest trend in "medicine for profit back center surgery" is called the iFuse Implant System. For only 20 grand or so they will drill 2 holes and screw your L5 to the SI. You are getting it for free, cool HUH??. Okay so I'm a surgical skeptic. Yes a TENS is helpful but get a medical one and learn to use it from a good PT otherwise you might just as well tape a 9 volt battery to your self (rember testing them with your tongue when you were a kid. . With spinal involvement much of the pain is reffered. so it isn't coming from where it hurts thats where the PT comes in. I've been temped to tattoo an X where the electrodes go

About 20% of PsA is the spondylitis type so welcome to the exclusive club with in the exclusive club.

If you start to fuses PT becomes very important. you want to fuse in a good position. They also make an SI belt to help. Most people actually report a significant reduction in pain after fusion. Unfortunatly complete fusion is rare (or slow) so treatment (its that Huira stuff again) is critical.

6

In other words . . . I'm screwed (sorry, just used the word for emphasis) along with the rest of this exclusive club? Too bad I can't get kicked out :~{

The TENS unit was given to me by a PT. Only saw him 4 times, at the beginning of this journey, before he figured out that there wasn't mush he could do for me at that time. I do wear the "shock therapy" daily at work. Otherwise I'm in the recliner iceing. My life has been pretty boreing the last 7 months! I actually even gained weight (20lb's) since November. Always been slim and active. Hope and pray that I can still go hiking and camping with my family this summer.

By the way tntlamb, don't say "I was born on a pirate ship" while sticking the battery to your tongue!

7

I'm in that club too, BuickBoy! L5 seems to be a favorite spot! Mine is Spondy with a spinal stenosis kicker, which means the tail bone is closing up and curling in! Tens is very irritatiing to me, but I'm strange that way, it sets me through the ceilling. The only person that seems to be able to use a tens with me was the acupuncturist, it was hooked onto the needles. I really just would rather have heat.

You know it's all what works for you, ice is OUT for me in genereal, though I have done the 10 minutes of strong heat followed by 10 minutes of ice trick used by DC. Just don't get the heat too strong that it burns you.

My entire spine is inflamed but the SI and tail bone are the absolute worst, have degeneratove facet and disc disease too. You look so hard and long for a diagnosis, and when it starts to come it knocks you flat!!

I encourage you to take the biologics, the only thing so far that has given any relief without being Opana'ed out!!You are young, with dear little kids, you don't want to have to start riding on that train if the tens works for you, I only recommend narcotics when the pain is intractable, not as a way of life, but that may come to pass eventually too.

I have been to 3 surgeons, a local, Johns Hopkins, Univ of MD, saw the top guy each time, and these surgeons told me that surgery would only ever make me worse, if I kept looking, would eventually find one and be in real trouble. There are cases and exceptions to the rule, but unless surgery is your only means, stay away from it. It only weekens 2 other spots where the screws will go, this wisdom is from my DC, he only recommends for the worst spines he has ever seen!

Like lamb and Rich have told me stay away from the quick fix shops. No such thing, yes, I had hoped too, but was straightened out about that. There is no magic pill or fix.

The biologics are the drug of the future, take a look at them, they work differently than the usual chemical medicine. They are really quite amazing, they target where they need to go right to the very cell, and many are going through long waits of trial and error chemical drugs to get to these, they are considered the life changers.

Good luck to you my friend, ask away, we will all help you in any way we can, as much as we can, and wish you the very best always.

SK

8

I take some time off from mine now and again or use 4 leads if I'm flaring as opposed to just miserable. We sound to be pretty close to the same spot in this journey except the Biologics have sorta put things in stasis for me.

You know your own back, and I have always been an ice fan, but my Rheumy suggested that for the SI stuff to try "moist heat". I always assumed it increased the inflammation so avoided. she said a lot of the pain was actually from spasm and the heat was the best way of controlling it. Might try it. She also has me alternating (I'm not a fan of either muscle relaxants or opiads except once a year before our Glacier back packing trip I treat myself with a little valium)

You can still do the camping trust me. I haven't missed a year yet. Just camp at a higher elevation..... A cold creek (or lake) can cure most any pain. Or in our case I know a lot of natural hot springs.

Also if its really bad start a list of State and National parks nearby. Most have a handicapped trails at least they can get you out without calling search and rescue (embarrasing trust me.) There is also horses and my favorite alternative a Mountain bike.


And for my deepest darkest secret A Brinkman smoker. They are only 50 bucks. When you are out, and don't want to spend the day on the trail, you can always decided to do some ribs, a pork butt, or a couple of chickens. Its a 4 -6 hour cooking /smoking time. Turns out delicious (even the little ones like it) and of course you are doing something special and have to stay with the smoker or burn the forest down. The kids don't have to be entertained just rerouting a creek, getting muddy, finding cat tails etc. or building a fort can be a lot of fun....

A blow-up mattress like they sell for guest rooms is perfect. Its like a sleep number bed only 1000 bucks cheaper.

9

Search and rescue, huh? At least they found you, Army Ranger! I am sure you were more than a litte embarrased! We all have our 'off moments'!!

BTW, thank you for your service to our country, lamb, means a lot to me! My husband has some ranger training too, but he still gets lost once in a great while. Sounds like you are a fabulous Dad and Pap too!

10

Wasn't lost just had a bad flare an couldn't get out. At least I didn't have to listen to a temperance lecture like I did when the ski patrol gave me a ride course I was college then and just got a new botta bag for Christmas. (For Seenie it was Mateus Rose')

11

OOPS! Sorry to imply that you were lost, either way, I am sure you entertained them!

12

I guess I have to close my eyes now. Not looking forward to the morning. Mornings are getting worse every day! How many shots of Humira does it take to start getting some relief?

13

Stay strong, BuickBoy, I have not taken that biologic but I take Enbrel, the very first one to my knowledge, and it works differently on everyone. I wanted to respond in case you are still up and around, but there will be others that are more qualified to talk to you more personally about their experience. Got to be strong, Dad, come talk to us when ever you need to!

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Hi BuickBoy! I'm also pretty new to the PsA thing. My back, hands, hips, knees and feet have been quite bad. I started Enbrel about 10 weeks ago and am now noticing a change. My back is finally pain free all day and I can even bend over and touch my toes! My knees and hips are also doing great! I'm a bit confused about my hands and feet, though. So far, my feet are still horribly painful and my hands are a little bit better. My rheumy hasn't said I have Ank. Spond. yet. I can't figure out why some joints aren't (yet?) responding. But I'm extremely thankful it's helped my back so much. There's hope for you, BuickBoy!!! I've become a huge Enbrel fan! Hang in there and keep asking questions.

15

I don't know why Don, but that peripheral stuff can be tough...... (My doc gave me a long drawn out explanation) The boiled down version is the feet are related to the si's and the Hands to the C 6-7 which also is where anklylosis usually starts. They also are the joints most effected by day to day movement. At this point the Doc may start playing with some NSAIDS. Normally you can tell in days whether they are any good or not. Some pretty expensive so I suggest instead of getting the whole script filled (depending on your insurance and pharmacy) doing a week at time till you land on one that works. There are a couple of dozen, Always check the online Walmart 4.00 list, there are some listed there that are on the expensive order elswhere (makes no sense) Even my "price Matching" pharmacy won't match them

Depending on your Rheumys training she may or may not do some injections or refer you to someone who will. You might aske her about spilints or arthritis gloves they seem to help with the hands ( I sleep with them or use them when doing physical work I also use a gel wrist support when doing any computer work (as well as just punching the keys with my right index finger and left middle finger seems to help) these two joint areas take a lot of stress so it doesn't take a lot of inflamation to set them off. I've avoided most of the feet problems so there are others who have advice there. I did get a set of walmart (the Dr. Schulls booth) "custom " orthotics and they DID help so who knows the Podiatrist version may be better (for 300 bucks they better)

16

Only half way through the work day and I just want to SCREAM! I guess that some days I'm not as tough as others:-( just want to go home and pass out.

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What kind of work do you do? For me it doesn't matter what I do ( I vary from puter to physical (if i want) if I don't break the routine with a short walk and a few stretches every 20-30 minutes, I DO need to scream (and have been known to go outside to do so.