Step one to starting my 1st Biologic in a month is done.

DebbieT

Hello everyone,

Its been a while .... Personal stuff I won't bore you with again!! I'll start with a refresher;

I saw a Rheumy registrar on Xmas Eve, she was lovely & decided to give me a steroid injection 'to help me over Xmas & the new year'. It helped a little but not as much as they have in the past wen they've been targeted. She decided she didn't like the 'clunking' noises from my hips & was puzzled as my xrays show no real amount damage to the joints that say I need replacements but the noise & feel of them disagree so she wanted an mri. Wen I received her letter she has stated she's checking for 'Inflammatory protocol to assess for sacroilitis/spondyltitis'. I originally thought this was AS but I don't think I've understood it correctly, ideas? I know ure not Drs.
The appointment has arrived, 17th Feb for 'whole spine & pelvis'!! :shock: :shock:
Am I right in thinking I'm likely gona end up with my head in the machine too?? I've got my repeat brain mri in May to see if the cyst on my brain has grown at all. The entire 90mins of the 1st mri I cried, tho I did manage to stay still ... I found it really traumatic, I didn't know I was so claustrophobic. The Neurologist has asked my gp to give me some form of sedation this time for May but I think I'm gona need it for this Spine & pelvic one too!! Freaked out is how I'm feeling.

I saw my Dermatologist on 22nd Jan. She wasn't happy I'd had steroids in December coz they cause psoriasis to flare about 8 weeks later(Don't I know it too. Ouch). She made her decision straight away to put on a biologic that's for Psoriasis & also helps the joints in PsA. It's called Ustekinumab or Stelara.
I saw the nurse specialist on Wednesday & we did the paperwork, I joined a research project for a University whilst I was there.
I have to have to a couple of tests to see how sensitive or allergic I actually am to latex ... I personally think they all take it far too seriously, I've only ever reacted internally :shock:

So all being well I'll be getting my 1st injection in around 4 weeks, I'll stay at the unit for about an hour to make sure I don't have any anaphylactic reaction then return 4 weeks later. They'll do certain checks each visit like weight, a scale they use to calculate psoriasis coverage & a couple of things I fill out for the research. Another 4 weeks later I'll return again & as long as all has gone well with all 3 injections over the 12 weeks, that the latex allergy isn't a problem then I'll receive 1 injection every 12 weeks to my home & a BUPA nurse comes to administer it. If there is a problem with the latex I'll have to have the injections done at hospital all the time. I was VERY surprised to learn that no matter wot a nurse administers this :shock:

The nurse did say that now I'm on this road that if Ustekinumab isn't effective for me there are others I can try ... Phew, ya just never know if they'll only let you try the one!! But she, my consultant & the Rheumy I saw Xmas Eve even said they've been getting very good results but obviously it's not for everyone!!

I'm hopeful, I'd be daft not to be with my skin at the moment ... A simple moisturizer called Dermol 500 feels like I'm applying acid .... But I'm definitely not pinning all my hopes on this working, I worry my hubby thinks the 'out of reach' biologics are gona be a cure all tho!!

My oldest niece has just been referred to my Rheumy hospital as her hip socket is too big & the ball keeps slipping out
She's in her late 20's with 3 young children. She's been on mtx for a couple of years for her skin at around 15-20mg oral. Does PsA cause that sort of damage?? I pushed her to see the Dr for xrays n feel so guilty :? Better now than wen even more damage has been done tho, don't ya think??
My PsA doesn't seem to affect my joints that much, it wears bone away by rubbing swollen tendons & ligaments against them, I'm so confused, maybe I don't have PsA at all!?!

Well I think that's it ... I've caught you all up. Sorry it's an essay :oops: :oops:

((((Hugs))))

Xxx xxX

barbara12

Hello Debbie and welcome back
I know how you feel about the MRIs..and my longest time was only 15mins ...I hope they can give you some sedation like the others did..good that you are at last on the Biologics..sorry I dont have a clue only what I head on here..but I do wish you well with them..please let us know how you get on...(((()))xx

dreamdaisy

My guess for the MRI is that you'll be fed in feet first but that's based on my experience of having my knees done. Don't expect miracles from the biologic but I hope it does help to ease the skin etc. Your niece's trouble sounds more mechanical than arthritis-related but as you know I am not a doc or an ortho surgeon. I won't type more because it's awkward but you are heading in the right direction and that's a good thing. DD

PS I'm sliding round inside my jarmies thanks to liberal smearings of my Doublebase Dayleve Gel

DebbieT

I've got some old song lyrics swirling around in my head now ... At least I think they are :shock:
Mine can't cope with anything at the moment ... It's all burning like acid, sinking straight in, flaking off & starting all over again ..... I feel terrible that you are flaring too!! The stress of ure fall & subsequent break ... The likely cause do you think? Thanks for ure input DD & do keep a Slipping & a Sliding

Thanks Barbara. My apologies for the absence huni.I'll let you know if it does or doesn't help ... It'll be interesting if nothing else

Xxx xxX

stickywicket

I do hope it all goes well for you, Debbie. You are well-overdue a break.

Personally, I'd much rather they sorted out the potential latex allergy before rather than after though I know you've waited so long for this you'll just want to get going.

Don't feel guilty about letting your niece in for x-rays. It is, indeed, better to find out now than later and, although it doesn't, on the surface, sound PsA-related, with auto-immunity in the family, it's best checked out. I hope all is well.

DebbieT

Thanks SW.

They are doing the pin prick & blood test for the latex allergy b4 the 1st dose but as I've reacted to latex gloves (during internal examinations :oops: ) in the past they still want to be extra cautious for the 1st few!! Sensible I suppose. They'll be removing the latex part that surounds the needle & using an alcohol wipe to try & keep exposure to a minimum too.

Oh so that's you & DD that both think it doesn't sound like PsA ... I just assumed as mine is so odd & her psoriasis follows my pattern, we're the only 2 in the family that don't have just Guttate, that hers definitely would be!! I trust you both, as you know. I'm really glad all 3 of you think I did right to push her to see the Dr for xrays etc That's a load off of mind

All is unwell (see wot I did there ) as I'm quite poorly. I'm suffering with the most awful fatigue, it's only been this bad wen I had glandular fever. I've got a low grade fever & chesty cough. I think it's a bug going around but being so immuno-suppressed on Ciclosporin it's knocking me flat. I've not even got the strength to drive :shock:

Great other wise tho Bet you wish you didn't ask now

Xxx xxX

stickywicket

(((())))

Boomer13

Hi Debbie;

Sending (((()))) and best wishes.

Your question regarding sacroilitis, if I read it right, axial PsA or Spondylitic PsA is another unlovely thing we can get. Similar to AS but often doesn't lead to the ankylosing part. Of course, if a person is very unlucky you can have both. Does that answer your question or am I reading wrong?

Have you been checked for osteoporosis? Thinking you probably have as your GP sounds up on these things. Fingers crossed XXX (that's them) Stelara works for you.

Take care,
Anna

DebbieT

Thanks Anna .. yes that definitely helped clear it up, thanks

I honestly don't know if I've been checked/tested for osteoporosis, would I know? :oops:

I like the X very good idea Thanks, I will keep ya posted. At this stage I'd happily go back on mtx if this stuff will help my skin, even my Mum was shocked at how thick n angry it is :? It's solid, can't get any give in my skin at all. It's mega painful. Let the 'possible' good times roll

(((Anna)))

Xxx xxX

dreamdaisy

It's a complicated life - it's bad enough having hurty joints but rubbish skin on top? One of life's short-straws indeed.

My P is far from severe (and I realise that I am fortunate) but it is having a snip at me just because it can. The broken arm is not helping but that will mend in due course unlike the arthritis etc. Hey-ho. :roll: You'll get there, Debbie, you always do and you always will. OK, there will hiccups every now and again, 'tis the nature of life, but you are one of life's fighters, yes? I can't imagine you being anything else. DD

stickywicket

I'm sorry the psoriasis is so bad. It sounds really nasty. As for the fatigue etc, well there are a lot of bugs going around and, if you've caught one, it won't help at all. Wrap up, stay warm and take things as easy as you possibly can.

Boomer13

Debbie;

The check for osteoporosis involves a special scan, I think of the heel bone? I haven't had one, but hopefully someone who has will chime in and post for you. Osteoporosis comes along with the inflammatory arthritis.

Your skin sounds terrible :shock: poor ((((you)))). Give yourself some hugs too. A.

DebbieT

I'm such a dope, forgetting to check my own thread :roll:
Typical me

Thank you all. It is bad but I've had it more widespread in the past. The steroid injection is really coming back to bite me on the butt now ... Poor injection & very brave of it

SW it's viral as it turns out but my weakened chest has led to a chest infection. I'll get this knocked on the head pronto, I hope, so there won't be any delays in the biologic treatment!!

DD I think the break must be awful, I can't imagine the pain & frustration, thankfully it will mend & hopefully sooner rather than later!! I don't know if I'm a fighter, I just try & keep plodding on so more of a donkey really

Anna I haven't had a specific scan of my heals, no. I'm seeing my new permanent Rheumy in March-April, after the Mri on my spine & pelvis, so I'll ask him about it then. Thank you for bringing it up ... Was it coz of the worn bone in my right hip/pelvis that you asked?? It's not the joint so I've no idea how to describe it :?

((((SW, DD & Anna))))

Xxx xxX

barbara12

Just thought I would leave you some of these... not much help I know...((((())))xx

DebbieT

Ure wrong Barbara ... Hugs can heal an awful lot

Thank you.

((((Barbara))))

Xxx xxX

villier

Sorry Debbie, I don't know how I missed this. I know nothing about all the meds and all that goes along with it but I can send some more of these if they help ((((())))) hope you feel a wee bit better soon.......Marie xx

barbara12

DebbieT wrote:

Ure wrong Barbara ... Hugs can heal an awful lot

Thank you.

((((Barbara))))

Xxx xxX

Aww thanks..so glad they have helped...((()))xx

DebbieT

Talking n hugs always help I think

Thank you both ((((hugs))))

Marie don't worry I'd forgotten to check it myself!!

Xxx xxX

Boomer13

Yes, Debbie. That seems backward to me: bone is supposed to wear and fray tendon, not the other way round. Just thought it might be a clue. I know seronegatives can have wonky bone metabolism.

)((()))(

Boomer13

:oops: :oops: Debbie; I sure didn't mean to give you something else to worry about. Excuse my stupidness!! Here are extra (((())) I'm not too swift sometimes.

DebbieT

Anna I'm honestly not worried!! Please don't think I am & definitely don't upset ureself about an idea ... My lightbulb moments are few & far between so I love it wen others still have them

Wen I was diagnosed the worn bone in my pelvis (shall I say that instead instead of hip now? If a women's hip/pelvic area were butterfly wings it's in the middle of the top wing that's been worn, in '07 it was the size of a tennis ball) Well the rheumy said that alone, without all of the other symptoms, would've screamed PsA to her. So I've no idea.
It's never been mentioned since & it does concern me, especially wen it's icie out coz I worry about it snapping, so for that alone I'd be asking for info on it so ure suggestion is a valid one & I think it deserves to be answered!!

Thanks huni.

(((Hugs)))

Xxx xxX

barbara12

Will be in your pocket tomorrow Debbie, dont forgrt no metal zips if you wear trousers..just a thought I now have a metal hip and due a scan,, :shock: ((())) xx

stickywicket

Boomer13 wrote:

The check for osteoporosis involves a special scan, I think of the heel bone? .

Mine was of my spine. It just involved my lying down, on my back. The machine's a small one. But they couldn't do all my spine because of the THRs so they also did my left arm.

I nearly fluffed it by not noticing that the very tiny buttons on my blouse each had even tinier metal rings round the eyelets. Fortunately, my eagle-eyed scanner spotted them.

DebbieT

Hi,

I survived the mri of my spine & pelvis thanks to 20mg Diazepam My oldest daughter was slightly put out that I looked stoned (apparently) & I was, even to my own ears, slurring my words a bit!!

Wot a completely different experience to my brain scan last year.
I asked to go in feet first, hoping my eyes would stay out, but I was told no so in I went but only 3/4 of the way into the tunnel, which, without Diaz I would have freaked out about, but I kept my eyes shut & used meditation techniques (even with Bon Jovi in my ears ). I think I was drifted in & out of sleep as the '20 minute' scan was finished in 1 hour (!!!!) without any stress or tears shed by me I was so relieved. I now know I'll be fine for my repeat brain scan in May ... Hurrah!!!

I was metal free btw

Thank you ladies (((Hugs)))

Xxx xxX

barbara12

Oh good for you Debbie..I might try diazapan on mine... good luck on your next one....don't think I have a brain so that wouldn't take long... :oops: xx

DebbieT

Wen the Drs came to tell me they'd found a lesion on the ct scan I thought they were gona tell me they were unable to locate anything resembling a brain too .... Unfortunately not tho :roll:

I don't think I'd be stressed about an mri ever again now I don't recommend that sort of dose of diazepam for everyone though obviously :shock:

Thanks huni.

Xxx xxX