Psoriatic Arthritis Continues Despite Biologics, MTX ... - NRAS

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Psoriatic Arthritis Continues Despite Biologics, MTX and Leflunomide

lorann profile image
23 Replies

Well, much to my chagrin, this last week has been full of the disheartening news following the MRI I had last Thurs. I admit I have not been to my "happy place", couldn't even get in!

Besides Dental appt, Podiatrist appt. and Study Club meeting, I had the MRI of lower spine, hips and S-I joints. on Thurs. On Friday my GP's nurse called and said he wanted me to make an appt with my Orthopedic Surgeon. Guess that answered the question alright.

Well I haven't gotten the appointment yet. The reason I had the MRI in the firstplace was because my right leg was getting numb every time I stand, and also there has been a really nagging pain in my left hip and swelling in surrounding tissues, which has spread around to my back. I was pretty sure I knew what to expect, having had 8 spinal surgeries, with fusions, bone transplant, supportive titanium rods, plates and screws. Might even be some twist-ties in there too.

I asked the nurse to send me a copy of the report, which she did, and Doug called my GP, who is also his neighbor and asked him to fax a copy of the report. Then he called me and said something to the effect, it wasn't the worst it could be, but it isn't good., and "we'll get you fixed up".

It's a mess. There are 7 areas on the spine that would need attention.

Then, yesterday I went to the Physical Therapist appt at the hospital. Spent 2 hours with the Doctor, as he evaluated every inch of me for whatever. Showed I have alot of limitations, besides the continuing pain and numbness. My GP had asked him to give me some exercises to strengthen my legs. After several of his trial exercises, he determined my legs were not very strong. You know what straight leg lifts are. Ha..can't budge the right one.

So he said there really isn't much of any strengthening exercises I can give you that won't aggravate these conditions in your spine.

He asked how long I had had the arthritis. I noted that I have had Psoriasis since I was 2 yrs. old, have had 8 spine surgeries since 1986. And to further complicate the issues, I now have RA.

What really depresses me is that I have taken all these chemicals for over 20 years, tried some that failed, others seemed to help for a while. Presently am taking MTX, Leflunomide and Simponi, the biologic. But the inflammation and pain goes on.

I have had several good summers, able to do what I wanted and needed to do, but admit the Winters in northern OHIo are not so kind.

I feel like a hypocrit, encouraging our newbies and others, to go along with the drugs, have faith and things will get better. But they didn't. Or maybe this is as good as it gets.

What I have to consider is, how much longer can I stay here by myself, or how much longer will my legs allow me? Ias there any surgical technique left to fix what's wrong/ Part of one problem is lumbar level 4 and 5 are right in the middle of where there is a titanium rod and screws. Did this come loose?

So, plan is to have Radiology put my MRI films on a CD that I will send to the Surgeon and let him review them before I get up to Cleveland to see him.

Probably won't get an appt until after the first of Jan.

So , we'll have turkey and dressing, mashed potatoes whipped with cream cheese and butter, cranberry relish and cranberry sauce, pumpkin pies, apple pies and whatever other parts of the family bring alaong.

The day after all that we will have our next, festive Porch Party, which may have to be moved inside! So don't forget Nov. 29 at your 3:00pm

Sorry I kept you reading so long, but that's how it is. Now as you all are getting up, I'm about to get to bed.

Loretxx

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lorann
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23 Replies
allanah profile image
allanah

Oh lovely lloret, I am so sorry and am just hoping against hope their will be something they can suggest that will make the difference to you when u see the surgeon. It's so unfair you had all those problems since childhood, I was so lucky not having many till my 50s.

Keep fingers crossed that the trial injections you showed us on fb are successful sooner than later and will help. Or maybe they can re grow sections of spine soon?

Do have a wonderful thanksgiving, me, I will be buying CHRISTMAS presents on Amazon as apparently there will be a big sale to encourage all us non thanks givers to spend whilst u all celebrate !

lorann profile image
lorann in reply to allanah

Thanks sweetie, I reaslly appreciate that. Hey there will be plenty of people on Amazon and everywhere else online shopping Thurs to beat those sales. Watch the systems crash!! "See" you Friday, my Porch @ your 3pm :)

in reply to allanah

Arrrgh I didn't know this thing. I've just spent my money. Darn it!

Look after yourself Loret, I've PM'd you :-}

Cece x

lorann profile image
lorann in reply to

Thank you sweet lady! Catch ya Friday your 3pm!

LouLouxxx profile image
LouLouxxx in reply to lorann

This might seem line a silly question, but how do you know it's my 3pm?

Poppymichael7 profile image
Poppymichael7

Take care Lorann, so sorry to hear of all your problems. I do hope they can help you in some way to make you more comfortable, you so deserve it. All the best for thanksgiving and Xmas xxx

lorann profile image
lorann in reply to Poppymichael7

Aw, thanks, Poppy and thanks for the holiday wishes. Back to you for Christmas best wishes. Don't forget the Porch Party Friday @ your 3pm!!

miss profile image
miss

. Oh i am so very sorry to hear this news. life is so unfair for some, Really hope you get some relief soon you really deserve to have some hugs xxx

lorann profile image
lorann in reply to miss

Thanks Misss...I'm always open to hugs :) Don't forget Porch Party Friday @ your 3pm

miss profile image
miss in reply to lorann

Hi Lorann i will be later in joining in coz i am working so see you on friday xxx

LouLouxxx profile image
LouLouxxx in reply to lorann

What is a Porch Party??

Luthien66 profile image
Luthien66

Oh Loret.....my heart goes out to you.....I wish I could wave a magic wand & give you a pain free Christmas and a New Year free of all these ailments you are suffering with. I think you should be called "Bionic Lorann" now with all that titanium inside you....lol"!

I'm sure your wonderful family will make sure you have a brilliant Christmas and thank you so much for your 'Porch' invites.....I must put this one in my diary as missed the last one....brain like a sieve at the moment and don't know if I'm coming or going!!

Have a wonderful thanksgiving and Christmas and lets hope the New Year brings all of us a new dose of hope and sunshine to keep us going. Lots of love xxx

lorann profile image
lorann in reply to Luthien66

Well said, Lucien. I am so looking forward to Firday and everybody! Maybe we should warn the NRAS system that it will be overwhelmed again!! Thank you for all the well-wishes. HUgs, Loretxx

sciqueen profile image
sciqueen

Thinking of you

(((X)))

Joanne x

lorann profile image
lorann in reply to sciqueen

Joanne! Seems haven't seen much of you lately ...please do join the party on my front porch Friday, your 3pm !!

francherry profile image
francherry

Hello Loret,

Sorry to hear you are having such a tough time. Take care, Fran x

Hi Loret,Oh so sorry to hear of your ongoing problems.

Thinking of you

Love

Carolyn xx

LouLouxxx profile image
LouLouxxx

Omg, I have just read your sun post took me a while to find it :-) you poor poor Lady my heart really does go out to u! You reall have been through it! And I thought I had it bad. But for me at least there is a lesson to be learned in this I don't mean any offence when I say " there is always someone somewhere worse off then me"

Take care. xxx

Loret,

You are a marvellous woman and an example to us all. Thank you. You give me strength. Corny I know, but true. xx

lorann profile image
lorann in reply to

Oh my goodness, you are far too flattering! Hugs to you! xxx

Oh dear loret, I am so sorry to hear of your continued suffering and you are too far away for me to come and give you a hug. I will have to send you cyber hugs and hope they will reach you. I hope I can make it to your party, I'll be the one under the table with a manky eye and only one boob. Take care my lovely. Kath xxx

lorann profile image
lorann in reply to

I will be sure to look for you under there :) Cyber hugs are just great too!!

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