Ustekinumab (Stelara) & wot can my tests mean?

DebbieT

Hi,

As you may or may not know, I have FM, OA & PsA as well as severe chronic Psoriasis, most types but mainly plaque.

I'm on Ciclosporin for my skin which has helped a great deal but my Dermatologist has indicated that unless I'm completely clear everywhere from Psoriasis she intends putting me on a biologic called Ustekinumab (Stelara).

I wondered if anyone else had heard of it, tried it or are on it & if so has it helped ure Psoriasis & if uve got PsA too how's it doing for you? Side effects etc Any info would be greatly appreciated.

Now on to my blood tests, a bit of background ....

I've been struggling really badly with pain since about 4-6wks after stopping mtx at the end of June. I have had some relatively pain free days but they've been few & far between. 2 weeks ago my GP put me on Oramorph. This wasn't a decision either of us took lightly at all. I've used it very sparingly.

She's expedited an emergency appointment with a Rheumy Consultant on 20th December (so glad it's this side of Xmas!!). I feel I can tell the difference between OA, FM & PsA pain really well now, PsA to me is like having shards of glass running thru my blood & that gets clogged up in my tendons, ligaments & joints, OA is hot throbbing pain & FM can vary but it tends to feel like the the worst toothache all over my body, my bones pulse & at times I can't even tolerate light cloth on my skin!!

My big problem is my CRP, for the last couple of months hasn't been higher than 12!!! How can this be?? I'm really, really confused by it being so low wen my pain is SO bad!! It's never been this low b4 even on mtx. I don't wana waste the Rheumys time but I also know I really need help.

If any of you have an idea why/wot etc it could mean I'd appreciate it. I will ask my GP but I like to hear the 'real' experts thoughts too

Many thanks,

Xxx xxX

stickywicket

I'm sorry I can't help, Debbie. I've not heard of stelara and I suspect it might be used more for psoriasis than arthritis.

As for CRP levels, I've never paid much attention to them as they seem to bear little relation to pain etc.

Whatever happens at the appointment I hope you end up better as a result of it.

dreamdaisy

I have had CRP and ESA in their 160s and 170s and experienced reduced pain, down in their teens and been in agony. As far as I am concerned the two things are not related, arthritis is what it is and it will do what it will do.

I haven't heard of this drug either but it appears to belong with the other 'mumabs' i.e. it's a mouse-protein based med. (I remember a GP telling me that I didn't get on well with the mumabs because I am based on cat protein ) I don't usually advocate googling things but it may be worth looking this up - on reputable sites only - and see what is stated about it. Did she not give you a leaflet about it? My rheumatologist / dermatologist always does when new meds are being considered. I have a folder stuffed full - that might get 'lost' in the move.

Pain? Yup, the OA pain is hot and needling, my PsA pain tends to be more widespread and more tiring, and the fibro is more a soreness and tenderness. DD

Kittkat

Hi Debbie I have heard of the drug and there are people on it on the psoriasis help forum. Maybe check it out?XX

DebbieT

Thank you SW, DD & Kittkat,

It's such a relief to see you both agree that CRP bares little relation to how much pain we are or aren't in. It's calmed my fears, thank you both!!

SW, it can treat Psoriasis & PsA, I'm not sure if it's used for other types tho.
DD the leaflet doesn't mention mice but I feel like a bit of a guinea pig There is a website with more information but I find first hand accounts from other users really beneficial.

Kittkat, I've posted on there a couple of times over the years & been ignored. I feel very uncomfortable there .... I could read the posts related to it tho!! Thank you for the advise

Funny how we describe OA very similarly & PsA widespread but our FM differs. I hope the stress of the move doesn't cause an Fm flare that could easily kick it up a gear another gear .... I will keep everything crossed that doesn't happen coz you deserve a long restbit.

Thanks again ladies.

(((( ))))

Xxx xxX

villier

Hope your app goes well Debbie, glad you got it before Christmas obviously I know nothing about your drugs, I wish you well to have a painish free time over the festive season (((()))..............Marie xx

Toots

Fingers crossed that your appointment goes well and rheumy gets you sorted. Needless to say (!) I've never heard of Stelara but a quick google (reputable only) hasn't really thrown up more information than I think you already have. Seems like it's specific to PsA though so it may be good news for you x

DebbieT

Thank you Marie

I haven't started them as yet but it's wot the Dermatologist said she intends me to start if I'm not completely free of psoriasis in January!!

Xx xX


Toots,

Thank you. That's about all I've found too & that it seems to work better on the psoriasis than the PsA but I think anything that'll help both is a bonus

I'm sure she's sped up this step due to the lack of care I've had from Rheumatology this year. I just really hope who ever it is that I see actually takes more notice of my PsA than the fibromyalgia!! They all seem so fascinated that I have it so severely .... It's like the stuff that can & has caused real damage is insignificant to them It's a big concern tbh!! I think I'll ask them to ignore that diagnosis initially at this one.

Have you had an appointment thru yet toots? If not it may well be time to ask ure GP to write a letter asking them to pull their fingers out!!

Thank you both again.

(((( ))))

Xx xX