So Fed Up!!

jcp123

I'm so fed up at the moment, I have PA and OA in my left shoulder and am really struggling.

Have had the PA for 3 years and just recently diagnosed with the OA.

I'm on 20mg Methotrexate for the PA which to be honest is as much use as a chocolate teapot, I am having flares every 6 weeks and having to go for steroid injections to calm the flares, I went for my most recent one last Thursday at my GP's and it hasn't even touched the sides, my hands and toes are still swollen and sore.

I was hoping to be allowed to try another biologic treatment (have tried Humira and Rituximab) but the Rheumy does not think that there is any point after 2 unsucessful attempts.

I'm off work at the moment and will have to go back to work on Thursday and just dose myself up on Tramadol and struggle on.

Work have been really good with me and reduced my hours under the DDA but they will only put up with me being off for so long!

I'm not due to see the rheumy until the 26th May and can't get in too see the nurse specialist either as they are short staffed, and trying to get the receptionists to understand that I could do with seeing someone is a fruitless exercise!

Sorry for the long moan and depressing 1st post, have been a long time lurker so hello to you all! xxx

dreamdaisy

Hi. I too have PA but I'm on more meds and I suspect you need to be too!

Currently it's humira (anti TNF, 40ml injected 2 weekly), meth (20ml injected weekly), sulphasalazine (3 tablets twice daily), naproxen (anti inflam, one tablet twice daily), omeprazole (stomach protector, 1 tablet daily), between 5 and 15 mg of oral steroid and alendronic acid (anti ostoeporosis, 1 tablet weekly). Not a lot of it is currently working.

The humira is my third try at an anti TNF and is failing after 10 months. The sulph keeps the psoriasis at bay, but that has never been a major problem. The meth does ****-all as far as I can tell, the rest I have no idea (I take the naproxen to reduce pain levels, my inflammatory markers have been in single figures since I began the humira but the pain never went: it still hasn't decreased.) The only tablets that give a pleasant illusion of health are the steroids.

The trouble is you have to keep trying new treatments and different combinations of treatments until you find the one that works for you. Don't let your consultant browbeat you in anyway - fight for another go at a biologic, they do have the best results and there are many types out there.

The arthritis began in my left knee in 1997 - the same time I had dreadful scalp problems which I now think were psoriasis. It moved to my right knee in 2003, I had a flare of psoriasis in late 2006 when PA was diagnosed and now it's in my feet, ankles, knees, sacro-iliac joints and is currently starting in my hands, wrist and shoulders, which is why I am in such a foul mood at the moment. (Rants posted elsewhere!). My skin remains fine. Go figure.

It is tough, it is lousy and it is miserable that so much battling has to go on to get the treatment you need. Vent to us at any time 'cos we've all been there and done that. There are some very uplifting tales of success on these forums, and I hope you will soon be one of them. Good luck. Dreamdaisy

frogmorton

Hi JCP

Good to meet you.

I am so sorry you are having such a bad time at the moment, but i am glad you found us as we will listen to your 'rmoans' (if you listen to ours!) and not judge you at all

26th May may not sound a long time away but it is when you are the one waiting isnt it?

Such a good thing your vwork are being so supportive but I guses you dont want to push it do you?

I hope you find the forums useful

Take care

Toni xx

skezier

Hi JCP,

Glad you have stopped lurking and come on the site as you know they are a good lot here.

I understand your frustration and being fed up and really hope they will be able to come up with a different mix of stuff to help you on the 26th. Till then try and rest up and maybe your flare will back down? They tell me over and over flares wont go less you rest up so hope you find it helps?

I am self employed so don't know this but they have time scales they have to work with so don't worry too much just yet and so far they have been helpful and with the right combo of drugs maybe you will be ok to do the shorter hours.

I know I can't help but sending you a hug and a ((( ))) and a hope it all sorts out a bit soon for you. Nice to meet you Cris x

tillytop

Hi JCP and welcome to the forum. Glad you feel that you can move from lurker to poster! I only joined recently myself and everyone is really friendly and you will find many others having the same sort of struggles as you are - and good advice aplenty! So sorry you are having such a tough time. I don't have PA, but RA and am, myself in the middle of another round of waiting for another anti-tnf so I know how frustrating it is. As Dream Daisy says, it is definitely worth pushing for another - although I know it can be really hard to be assertive when you feel so bad. I know 26th May feels like a long way away - but hopefully work will continue to be understanding - and please feel free to post anytime for support - or just for a rant if it helps!!!!
Tilly x

jcp123

Thank you for all your replies, have just got my little boy to bed so have just read all your advice and lovely messages

I'm going to phone the hospital tomorrow and insist on seeing the consultant this week and will not take no for an answr!

I am just so worried about work because as I mentioned they have been really good and reduced my hours under the DDA but if I'm still having to have time off sick (always with a doctors note) then they will begin to look at my capability to do my job and I'm more than capable of doing my job but when I'm having a flare its just so hard. So thats another worry!

I feel like a bit of a mardy (as Nan would say) as I know that Arthur is never going to kill me and that there are people far far worse off than I am but sometimes the thought of maybe having another 40 or 50 years of this really frightens me!!

Anyway thank you again for your replies and I will keep you posted and try not to moan so much in my next post!

xxxx

dreamdaisy

You're not mardy and moan as much as you like. That's why we're here, to take the strain. Friends and family shouldn't bear the brunt of tiredness, frustration, pain, side effects and all the other rubbish we put up with, but others who are in the same boat will, and do, understand. Keep in touch. Dreamdaisy

orangeapplerolo

Hi I read your post. I know exactly how it feels. Especially the bit about work. I work In a childrens Nursery, and when my handsswell up and my feet the job is to difficult to carry on. I've only been there a year and i have had so much time of. I feel lik i'm always lettin them down. Last week i went back to work after two weeks ofbeing of due to a flare up. I am sensing that people there don't like me. I feel like no one properly understands. I don't know what to do. please write back.

frogmorton

Hi Orangeallperolo

I like all those too

Welcome to the forums from me Good to meet you and i hope you find theses forums as helpful as I have.

It is awful when you are made to feel not liked at work due to ill-health. They dont understand as they dont have arthur - what you need to do - if you can - is refuse to feel their negativity and keep doing your job to the best of your ability.


take care

Toni xx