A Re-Post of my latest medical stuff

DebbieT

Hi everyone,

I decided to re-post this part of a previous post as I'm hoping for some more responses. If not I'm sure the moderators will oblige by deleting it?

I had a CT scan done in august to see if I had scarring from Mtx. I received a letter from my respiratory consultant at the end of last week, my lungs are clear of scarring but do show I have Emphysema from smoking I'm very glad I have already quit smoking the cigs!!! It's THREE MONTHS tomorrow
I've been upset by the diagnosis but I think it's had more to do with Dad having had it & then dying due to lung cancer than me actually getting the diagnosis!!

'I saw my Dermatologist on wednesday ... She was suitably shocked at how bad 3 months of no mtx has made my skin. I'm covered in Psoriasis from scalp to feet & everywhere in between It's unstable, mine always is for some unknown reason. It's bright red, hot & very painful, my Mum told me today it looks like burns, cheers Mum
She has decided to keep me off of mtx as it took 2 years to clear me of psoriasis & I was on high doses of 25-30mg a week. Wen it arrives I'll be starting Ciclosporin. Has anyone else had this? For Psoriasis not a organ transplant She said it'll start working in 3-5 days, we shall see. She also said she doesn't feel it will work particularly well for me but she's following NICE guidelines & thinks she'll be able to put me on a biologic in the not too distant future. That's great news coz the Ciclosporin will only treat the Psoriasis not the PsA but a biologic should treat both

I've had some more numbness & tingling in my face etc (It kinda feels like after uve been numbed by the dentist, cold-ish too)
The Neurologist said it was all to do with Complex Migraines & put me on Topiramate, that works wonderfully for headaches & migraines but these sensations have continued. I finally told my GP, after all it's carried on since May ... Oops
She thinks as it's no longer restricted to one side of my body & all of the other symptoms are gone, that it could well be something else!! We both think the 1.5cm brain cyst is a good contender, the Neurologist disagrees, but she's requested that they see me again pronto ... 3 wks later I've heard nothing so things are moving at their usual speed!!'

Thanks.xxx

stickywicket

I'm sorry I can't help with the cyclosporin, Debbie, as I've never had it. Actually, I can't help with anything but I do hope someone can. You really are under the cosh on so many fronts right now and are being so brave and stoical about it all. I'm amazed you are still a '****-free zone' You are a remarkable person.

DebbieT

I lapsed on Friday at the Wake ... I gave myself permission to tho. Sorry to disappoint so many of you I haven't touched one since tho & haven't had the urge too, thankfully!! Sorry SW :oops:

DD has described becoming a werewolf, hair growth can be a side effect. I thought on a brunette extra hairy would be a disaster until Jenny pointed out that a very bad winter has been forecast!!

I don't think of myself as any of the lovely things you've described me as .... I'd say scared, nervous & whiny!!

Thanks for the post ... I do love how straightforward you are xxxx

trepolpen

hi , cant help much either as got RA , NICE guidelines for Golimumab is that if you have RA you must be taking Mtx as well , but with AS or PA you dont , its one of the newer anti-tnf , been on it 6 months now & no side effects , dont know that much about the other biologics but hope they give you something that helps soon .

good luck giving up the **** , had to do it myself because of asthma over 20 years ago , it gets a lot easier with time

DebbieT

I've never heard of that one so thank you for the information I have no idea which one she may be thinking of giving me in the future ... She did say it will treat both my skin & PsA, that will be very welcome as I'll have had no treatment for the arthritis except pain meds for 6 months wen I next see my Rheumatologist!! :?

Congratulations on quitting xxx

stickywicket

DebbieT wrote:

I lapsed on Friday at the Wake ... I gave myself permission to tho.
I don't think of myself as any of the lovely things you've described me as ....

Add 'truthful and honest' to the list of positive attributes

DebbieT

:oops: :oops: Finds taking compliments graciously almost impossible due to poor self esteem :oops: :oops:

Thank you ..... (You will stop now tho won't you? Please?! )

stickywicket

OK. I'm off

DebbieT

((((SW)))) You do cheer me right up Thank you.xxx

barbara12

Debbie some of the the things you are experiencing could be from the shock of the last few weeks....I know when I lost my parents I was so poorly ..it was months later..and it was only when someone pointed out that id could be linked...
put the lapse behind you and move on you can do it....(((()))xx

kentishlady

Hi Debbbie. You really are doing so well, especially as you have been having such a stressful time recently. Do hope you can get your meds sorted out soon.

Take care. Beryl

(((())))

villier

Debbie, I know nothing about your meds as it is OA I have but I hope you get things sorted out soon.

I for one am not disappointed that you gave yourself permission to have a wee bit of a relapse for one day, you have been totally honest about it, but good on you for getting back on track.................tc..................Marie xx

PS you are everything that SW says x

Boomer13

Dear Debbie;

I'm sorry but I also have no experience with ciclosporin. Maybe I will have to go on it when the docs finally are able to fulfill my request for a brain transplant.......... Until then I hope it's not one I will need to experience for my very minor psoriasis.

Joking aside, I think you are doing fabulously well, considering all you are up against. Just a reminder not to be hard on yourself. It's tremendously stressful losing a parent, let alone dealing with all your health issues too.

Take care of yourself,
xxAnna(())

frogmorton

Hi Debbie

well-done for the giving u of the **** I gave up years ago now and still vaguely miss them although the last two I had made me distinctly queasy :?

As they say never stop giving up. So lapses are just that lapses. You are doing brilliantly. It's one of the hardest things we can do.

I think a lass who was hasn't posted for ages (Tillytop) was on ciclosporin and she had RA. Don't remember her saying much I think it worked really well for a time....????Best not be quoted there though :oops:

I hope you get to see the neurologist soon to sort out the odd sensations. My eldest has hemiplegic migraines and does have similar although hers tend to be one side of face, maybe arms etc and affects her hearing etc???? Migraines are neurological too so whether it's them or the cyst you should be seeing the right person.

Love and luck

Toni xx

DebbieT

Thank you Barbara, Beryl, Marie, Anna & Toni.

Ure all so kind (((( )))) Its so appreciated that you all believe in me regarding still being a non smoker Thank you!!

Anna if they start doing them I need one too

I'm very sorry to hear ure child suffers too Toni. They sound very similar to mine but my new development of it being on both sides of my face & body seems to rule out wot she prescribed, I'm in total agreement I have a migraine issue I'm just confused by it now :?

Thank you all again for being so kind & understanding It seems it's just DD so far thats had this med.

Take care.xxx

Kittkat

hello
I have what you would call unstable psoriasis so does my friend.He said he feels his skin is on fire at the moment. We get it head to toe. I've not tried the cyclosporin but Is aw a guy on embarrassing bodies who had severe psoriasis and it cleared his up so hope it does for you.
Good luck

DebbieT

Hello KittKatt,

Oh it's a relief to hear from you!! I've just done a meltdown post about my skin!! :roll:

It's so bad at the moment!! Wot works for you?? I'd swallow drain cleaner if they said it would help at the moment ... I'm desperate!! The tablets haven't arrived yet & I've got a sore throat so I've got a phone consultation to see if I'll still be allowed to start it wen it finally arrives.

Thank you!!! Which type do you & ure friend have?

xxx

Kittkat

What works for me is uvb light treatment and at the moment methotrexate is clearing mine up. I did have some good results from vitamin d +omega 3 tablets aswell. I have small spots of it which join together when bad and it goes all over my friend has the same. It's like guttate psoriasis but it is unstable if that makes sense. His next step is embrel think. I think the cyclosporine should work for you though and pretty quick when it does.
xx

DebbieT

I've never been able to tolerate light treatment ... Redness after 30seconds, ridiculous!! The sun helps but I have to wear a total block 50 factor. Light always works well for my sister & niece.

So it goes from guttate to looking like plaque? I have both, more guttate at present on my back & hands but my legs & arms are plaques. They're bright red & hot, all of it is. It sounds like the 3 of us are in a similar boat

My Dermatologist has said it should help within 3-5 days but she doesn't feel it'll control mine well enough & anticipates putting me on a biologic in the near future too. Fingers crossed coz since mtx was stopped 3 months ago I've had no treatment for my PsA.

Thank you, I really appreciate that uve calmed me down!! xxx