Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Purpura - vasculitic?

Well, from the top of my neck to the hips I am stiff, stiff, stiff and sore, sore, sore. The muscles in the neck are so bad that I get botox injected into them to loosen them up. It helps some but I need industrial strength. The neck crunches, pops, snaps - disc hernitations, straightening of the c-spine etc, etc. Which all feeds/causes Occipital Neuralgia - which is a terrible, DAILY lancing, shooting, electrical headache (again rare). Headache neuro thinks it's from the neck and muscle problems that I have. So she's the one who gives me botox injections and nerve blocks - I'm lucky - she's a very sweet, proactive doctor. Wish I could find a rheumy like her.

So, what are you on for meds? Sweetie if you've got PsA, then you need to be proactive with the meds. I truly think that if the docs would have left me on the Humira, metho and then added just a bit of pred I would have been good, but my doc left and this other doc just took me off stuff - he's a crazy SOB. (sorry I swore but that's exactly what he is!)

Hugs~
Jewelz

my daughter had Henochschoenlein Purpura ...a form of vasculitis on her lower body. It attacked her intestines & kidney as well, causing nephrotic syndrome. This type is common in kids aged 3-6 and she was 4 at the time.

She had a couple 'blood-blister-like' spots on her legs, one on her hand & one on her lip as well as petekia (little red spots)all over her legs.

A couple weeks later, a friend's husband developed vasculitis which showed up as a HUGE blood-blister spot that covered half his leg! The docs said vasculitis is NOT contagious and 'usually' non-threatening.

That's my only experience with vasculitis.

oh I am sorry to hear about that with your neck also. OK, I have multi level HNPS and bone spurs at C2-3-4, the same awful neck muscle tightness from my neck down into my shoulders and trapeziod muscles too. i was offered neck nerve blocks but felt the doctors down here are not worth their salt and make too many mistakes so this is not an area i want any more mistakes made on me, they messed up the operation once already on my posterior neck fusion which left me with lots of pain that doesnt go away, so i research every doc who wants to do work on me and see if there have been any closed med mal suits on them and for what. I have some serious trust issues here. I will not deny that. You would be surprised but down here in florida, docs can practice medicine with out having ins, all they have to do is put a 10x8 sign in the patient's waiting room stating they do not carry ins, that is giving notice to people.
i went to my pm doc, he wanted to install a tens unit subcuetanously and put in leads into my neck & shoulders and have a battery at my waist that gets recharged from the outside. it is made by medtronic the same people who make the spinal pain pump.
this guy told me he has only done 50 of them. sorry, if he told me he has done hundreds i would have said ok.
i am not going to be a ginea pig for anymore docs to get their practice on and then have a uh oh....
so for while i considered that but then rejected that idea. now, i never heard about botox injections in the muscles before so i may inquire about that, i was wondering why they dont bring this stuff up to me. they like to push the expensive stuff so they can make some money.

so for now it is meds and some PT here and there. Tomorrow I am having an MRI C spine done with contrast to check the status on the bones in my neck.
then i have an appt with a top level surgeon Oct 1 to have him look at it all and see if they can take out some of this metal posterior and fill it in with bone cement instead.
if they can do this, and take off some of the bone spurs, maybe i can get some relief. it is a major op, i would have to go to rehab after as i have no one here to help me.
but i feel at this point i have to try to do something, just want it done by someone top level is all. which he is, he worked on James Brown the former black entertainer pop singer, and has installed artifical disc in the lumbar region. I may take a chance on him. I have to get over some of these trust issues i have that could be holding me back for better treatment. This is part of my problem also.
I just dont have the supports available to me family wise which hurts.
AND i do not want to made WORSE either. These are my choices i ahve to live with. But i am not getting any younger, so i feel time is marching on, and having an op now VS. in 3-5 yrs from now, maybe i ought to get going and do it now rather than later when my recovery might be worse.

Jewel, the rhuemy wants to put me on arava, 20 mg every day. not sure if i want to go there, was on predisone shots and in the tendons also. helped for about a week.
tried PT, helps for as long as i am there, when it is over, my relief is over. docs dont like poor patients.
and i have no advocates, no family members to hepl me. i got a cousin in Cally we are close but she is too far away. cant sell my home to be near her, as the market for real estate is bad here. am stuck here with out ANYONE no FAMILY whatsoever.

Well, badbacky....

I would definately get yourself on a DMARD. DMARD stands for Disease Modifying Anti-Rheumatic Drug. Nothing will cure these disease, they will just get worse and worse until you can't care for yourself anymore. My Mother is like that from RA and it's terrible. Arava is quite good for PsA (from what my friend has said) she was on it for years. But then liver values came back funky and she went to methotrexate. She's also on Humira. Prednisone will take away the inflammation but you need a drug to slow the course of the disease too. You may need both, pred+DMARD. And maybe even a biologic drug like Enbrel or Hurmira. My old PT has PsA and Enbrel really works well for him. You can get financial help for the biologics too. My girlfriend is only paying 15 a month for Humira!

For botox injections you need to see a neuro or pain mgmt person. Someone who can get it approved by your ins company (hard to get approved). It has to be listed as, ugh I forgot the word, but it means muscle that is unable to uncontract. And that it causes pain and damage etc.. Seeing that it isnt' being injected into your face for cosmetic reasons it's usually approved. But the doctor has to send in for approval and they don't like to do that - you know too much work for them

I really do think you could get some marked improvement in your situation. I think you need to really sit down and discuss what DMARD to go on and maybe a biologic, with your doctor? You need to be able to care for yourself and you DESERVE not to suffer.

Sweetie, I'll tell ya. I've got the sweetest guy in the world for a husband. Does't care if I stay in bed all day, understands when I'm crabby etc, etc. And he goes on DR appts with me. HOWEVER, no one advocates for you except you. Hubby doesn't understand the disease (no matter how much I explain it) and doesn't understand doctors either or insurance. God forbid I'm ever unconscious.... So, don't feel bad, you have to do for you. No one will ever do it for you. So don't feel bad for your situation. It was your Ex's problem, not yours when he left. Anyone who would leave anyone while they are sick just isn't even human and has some major issues. Karma will get him in the end, you truly are better off without him.

big HUG to you!
Jewelz

Thanks Jewel!
I have a script for the arava.
my rhuemy wanted to see how well i did on that first before going on to MTX and the dmards.
thank you so much for your help and concern! I like coming to this place cause it gives me hope!
it is sad and lonely to be alone. which is part of my problem.
but i wanted to say thanks to you and to everyone else who wrote any responses to me.
TC, and have a great day!!