Sorry, News, & Problems

DebbieT

Hi everyone,

The sorry is for being away for a few weeks. The grief of losing Dad finally started to hit me HARD then we got the news his brother passed away, It was his funeral on Thursday. Today I had a text to tell me a lady I used to take to the hospital wen her son, he's a friend of ours, wasn't able too passed away Thursday night!! So I have another funeral in next few weeks

I had a Dermatoloy appointment on Wednesday. She's pleased with how my skin has reacted so far to the Ciclosporin but has raised it by 50mg a day. She's seeing me again in 2months & said unless my skin is completely clear .... Wait for it ...... She'll be starting me on a biologic
She gave me a leaflet on the one she wants to use. It's called Ustekinumab (Stelara). Ure given a 45mg injection week 0, wk 4 & then the same every 12 weeks from then onwards!! My only concern, after reading all of the info, it mentions latex allergies, the needles have latex covers & I'm allergic. I'm concerned that may be an issue for me being allowed it but hopefully it won't!! Has anyone heard of this biologic or used/using it? She told me 'This will potentially change my life!' :shock:

I've now been without any meds for the PsA for nearly 5 months. I'm really suffering badly with my mobility, pain & fatigue. I've spoken to the hospital (a specialist one) to request an earlier appointment than 21st Jan & they said NO. As a last resort I've been to see my Dr, I normally stick to fone consultations as I'm there often enough coz of weekly bloods, BP & counselling
I take wot some of you may class as a lot of heavy duty meds but having severe fibromyalgia for a while I'm on lightweight stuff compared to many!! So daily I've been taking
Morning: 150mg Tramadol SR, 1g Paracetamol, 500mg Naproxen SR, 20mg Omeprazole & 150mg Ciclosporin.

Lunchtime & Night: 1g Paracetamol, 50mg Tramadol

Evening: 150mg Tramadol SR, 1g Paracetamol, 500mg Naproxen SR, 20mg Omeprazole, 150mg Ciclosporin, 400mg Fibrazate SR, 100mg Nortriptyline & 50mg Topirimate.

Well none of the pain meds are helping & I'm no wimp!! I've fought tooth & nail in the past to stay off of meds but it made me so Ill & I couldn't even bare to be touched to have a cuddle off of my Grandson as even my skin was unbelievably painful So anyway, my GP, who like me, tries to avoid long term or strong pain meds, took one look at me & said she'll be writing to the pain clinic to expedite my appointment with them, I told her wot Rheumatology told me, she wasn't happy, so she's writing to them too then she looked up at me & said 'Well
Debra (no comments please :oops: ) I'm going to have to give you something to tide you over, seeing you trying to walk, the pain shows in your face & eyes so clearly, you can't go on like this!!' She's prescribed me Oramorph, never thought I'd ever need this stuff again so I'm a bit down about it, stupid really coz I know I need it til I see the pain clinic!! I'm not overjoyed with it as a top up med but then again I can't take an actual step at the mo, I have to slide my feet. I can just about drive but my wrists are at their outer limit & I'm hoping this will allow me to carry on a bit longer with Xmas around the corner & Amelia now here!!

Blimey, I've rattled on for ages, I'm ever sorry!! :oops:

Any thoughts, advice would be gratefully received, not too sure how I'd take too much judgementalism but don't let that stop ya

Lovely to be back in baby steps. I've missed many of you an awful lot. The messages have meant so much, thank you. ((((Hugs))))

Xxx xxX

Boomer13

Debbie; please don't worry about taking oramorph; if you need it, you need it. You'll be able to stop when you want to. You need a break!

((())))Anna

Mat48

Your pain sounds horrendous - I agree with Anna - there's a time and a place for everything and if Oramorph lessens the pain then this is the time for Oramorph. Mat x

villier

Debbie, I am with Anna don't worry if you have to take morphine you have to, you are a sensible girl and you will listen to what your body is telling you. I cant help out with the rest as it is OA I have, let hope you can get some relief to help you through Christmas (((())))........Marie xx

lulubell69

The stress you have recently endured has probably contributed to high level of activity you are now suffering. Sometimes there is nothing else for it other than taking pills and potions in order to get a little relief. However, oramorph makes you terribly constipated so don't forget to take something to combat this or you will add another complaint to those you are already suffering.
I take oramorph as and when needed but of course never over use it as I am aware it can be addictive.
Take care
Les

stickywicket

Debbie, you've gone through a great deal recently, both physically and emotionally, and the stress must have really taken its toll so no apologies for absence please

I do hope the ciclosporin comes up with the goods but, if not, you have the biologic on standby. I've not heard of it so I presume it's used more for psoriasis than PsA but what do I know :roll:

Take the oromorph. It's only a stop-gap not a long-term solution and you are wise enough not to try to make it into one. I do hope it helps.

purpleowl

Hi Debbie,

Take the morphine, you need a break dear,

gentle hugs((()))

Trish xx

dreamdaisy

Oromorph? Loved it. It helped me through a tough time, end of. I know it can be difficult to accept the need to take stronger meds but they are there to help. They take you away from the pain and sometimes that is what is needed.

We are all aware that arthritis reacts to stress and you have had a very stressful time of late so it's little wonder that things are as they are. I hope the increase of cyclosporin helps and if you do begin the biologic then I hope it proves to be the one for you. I was told that humira would change my life but luckily by then I had stopped believing the hype that went with every new med. I wait for nothing to happen and it usually does. DD

DebbieT

Thank you all for your responses. I feel a bit better about taking it now. You are all right, I wouldn't unless I needed it & I definitely need something & as I said my GP doesn't hand it out willy nilly, I've only had it once b4 from an out of hours Dr & my rheumy went nuts wen I told her but she was very focused on my Fm not my PsA & it's not recommended for Fm, she didn't even consider it was arthritic pain :?

SW, I'm very surprised you haven't heard of the biologic :shock: I expect you to know everything about everything. . Would you suggest I do seperate post on it tomorrow, if no one else mentions it to see if I'll get a response?

Les, I've been given Lactulose, which is a tad ironic as 3 out of 4 of our children are lactose intolerant!!

DD, Its helping as my top up med but I don't feel any different than normal, well for about 30mins after a dose I feel a little, very little bit tipsy. I've had 3 doses yesterday n my morning one & I've slept for a whole 30minutes, the Dr said it would help me sleep. :roll:
Thank you for the reminder to keep my feet on the ground & head out of the clouds regarding the possible biologic, I had started to think to myself, rather smugly, I'll still use AC forum wen I'm 'better' as I'd still like to try & help out n definitely to keep in touch with my friends. Wot a gert banana I am!! :oops:

Thank you to each & every one of you for your kindness, time & advise.

((((Hugs))))

Xxx xxX

dreamdaisy

I have no idea what constitutes 'better', my abilities on a good day are woefully below those of my husband on a bad day in terms of activity and achievement.

The forum will be here for whenever you need it, simples. DD

dibdab

Hi there,

I haven't anything to add to all the wise words, just take care- lots of gentle hugs coming your way
((((((((((((((((((((((((((((((( ))))))))))))))))))))))))))))))).

Deb xx

CPS- sympathies with the "Debra" things- it's what mum calls me when she is displeased or I haven't jumped to her needs quickly enough :?

barbara12

Hello Debbie
The others have given you so much advice....I just want to leave some hugs...and I am so sorry ..you have lost your uncle and a friend..very soon down the line you are going to need some real me time..here's the hugs I promised.((((())))xx

Starburst

Hi Debbie,

You've been through so much (a bereavement and 5 months on no PsA meds!) it's no wonder your pain levels have sky rocketed. Take the oramorph if you need it. Doctors don't mess around and they wouldn't prescribe it unless they felt you really need it. I have also not heard of that biologic, it might be an idea to do a separate post on it. If you get no joy on here, perhaps try the AC helpline?

So sorry to hear of another loss. It must have hit you hard. (((hugs)))

Be kind to yourself.

thistlegirl

Hi Debbie, Good to hear from you but sorry things are so tough at the moment.
I haven't heard of the biologic either, it must be fancy! You are on a mix of drugs but if they are not working then you need the morphine, I hope it works soon.

Take it easy and look after yourself!

Jenny

Toots

Debbie, my lovely Huge big huggly hugs! Take the meds and be kind to yourself hun, there's nothing else for it. You deserve a bit of rest, mental and physical and I sincerely hope it comes your way shortly. More hugs. And hugs too x

stickywicket

Thinking of you, Debbie.

DebbieT

Again, I'm humbled by the support you've all offered & the comfort it brings me ... Well I can't explain it!! Thank you.(I do wish there was a heart shape smiley)

I've been a bit unwell, nowt specific but enough to kick my rear :roll:
I had a call from GP on Monday, my renal function (I think ) had dropped from in the 70's down to 53. I had a repeat blood test today (Thursday) & I'm hoping the results will be back tomorrow, but they'll definitely be in on monday. I'm assuming its the ciclosporin as apparently mine has always been stable & I've been having weekly or monthly bloods since 2007/8. I don't wish to put my kidneys at any risk so if it's still 53 or lower I will be strongly suggesting I'm allowed to stop it until the function is ok again & then go back to at 250mg where it was fine!!

We're scattering Dads ashes on Saturday morning. I'm feeling ok about it at the moment but my Mum has had her worst week yet She needs the closure, from wot she's told me, but the finality of it is overwhelming her. I'm shocked to discover how much pain I feel for her .... Hang on, that's needs qualifying .... Being a Mum & Nan I thought the most painful tears to see/hear were my children's & Grandchildren's but it's not, It's hearing my Mum sobbing, barely able to catch her breath as she's so full of pain, loss & grief, it's awful

I maybe foolish for attempting this but I'm going to try & hold it together for Mum on Saturday!! My eldest sister, she lives in Kent, has had to do much of her grieving without us & I know she's found that very hard, my little brother has quite severe mental health issues & was very close to Dad & the other sister ... Well she, of course, is the ONLY one in pain coz the world revolves around her, so she won't be able to support Mum ... I intend to try & be strong for my Mum, big sister & brother.
I know that sounds awful but we don't talk anyway & she's never even bothered to say "I'm sorry" about Dad passing, I tried to offer her some words of sympathy & comfort etc She just turned her back on me & walked away!! We don't talk because of the vile things she's said too my children (wen she's drunk) & about my hubby. I put up with her behavior & covered much of it up for years, but wen I became more ill I realised she drained far too much of me I don't have people like that in my life any longer so she can get her support elsewhere!!

I'm going to end on a good note :shock:
Samantha, our oldest, nominated our youngest, Nicole, for a Young Carer of the Year (12-18) well she's been shortlisted & there will be an awards evening in the Town Hall. So wen she walked in, after a knock on the front door last night, carrying 2 certifcates & a box I was really confused. I'd made it very clear I wanted to attend coz it was such a lovely thing her sister did, win or lose WE know wot a star she is but you never know someone else might recognise it too!! Well the little minx isn't a fan of the spot light & didn't bother telling us it was held on Wednesday night as she did not want to attend at all :roll:
She only won it!!
The knock at the door was her friends little sister who had attended & she adores Nic so was really excited to bring it home to her
It was a certifate all nominees received, the winners certificate & a lovely boxed & engraved glass plaque/trophy!!! We are SO proud of her. She really does do quite a lot, especially for me & the thank you's & special sort of things I try to do to show how much it's appreciated never seem enough!!

Sorry for waffling on!! I applaud anyone who made to the end

((((Hugs))))

*Deb, it's a relief to know I'm not alone with the 'Debra!' thing.Ha ha *

Xxx xxX

Toots

Hey Debbie x

Huge congratulations to your Nicole hun, you have every right to be proud of her!

Hope everything went well for you on Saturday and you managed to get through it all. Big hugs x

dreamdaisy

Hello, I apologise for not being around over the past few days, life is hectic here with organising the move etc.

I hope Saturday went as well as possible, Mr DD and me did my Ma's earlier this year, we placed her under the same tree where she had decided to put Dad eleven years earlier. It's not an easy time, it's not the end of the grief but it does help one to move on. Ma plunged into a very deep depression after Pa's death but she would not acknowledge it. As for family - well, I cannot help on that front because I do not have siblings (which has its drawbacks as well as its blessings). The main thing for you is to think about you and what you need.

On a happier note I send congratulations to your modest daughter, she's
a good 'un and no mistake, no? DD

stickywicket

Well done, Nicole - and Samantha, not to mention Mum for producing them

villier

Congratulations to your lovely girls Debbie they are a credit to you, here are a few of these for you (((())) .................Marie xx

DebbieT

Aww thanks ladies Yes we're all proud, very actually. She is definitely a 'good un' DD. There is a small write up in the local paper about her, she doesn't know yet but she''ll be mortified

**** WARNING ****

*Saturday went very well. This may sound daft but having never seen human ashes b4 I was expecting something similar to wot ud see in a fire grate, a coal one, I've no idea why I had that impression given wot they're made from!! He looked quite beautiful tho, pale & almost twinkley. I'm not a raving lunatic I promise :shock: **

I've got an emergency rheumy app on the 20th Dec. I need to restart methotrexate or something coz I'm pretty tough but I'm not a robot & can only take so much pain b4 I crack up!!

DD, just in case I miss you, have a pain & hassle free, as possible, move & remember all of the memories will travel with you!! Good luck.

Thank you all once again, the hugs are as appreciated as the comments

((((Hugs back))))

Xxx xxX