Could I really be this unlucky?

stickywicket

Good I hope it's a good appointment.

Megrose489

Hope it goes well, Jenny.

Meg

DebbieT

I couldn't be more happy for you regarding being in remission Jenny, it's fantastic news
Masses of big hugs ((((( U )))))

Good luck with ure Rheumy appointment, I hope they can give you some meds back.

Xxx xxX

thistlegirl

Thanks for all the good wishes guys, I am definitely more relaxed nowadays.
Nice to hear from you Debbie!
I was at my GP with the thought of 2 more weeks off sick, she started off at 8 weeks, we agreed on 4 weeks then revue :roll:

My rhumy appointment went well I suppose, as usual no miracle cure but things to be done to improve things for now. If my cancer doc agrees I will be starting Rituximab be the end of the month. The doc found activity in over 10 joints, pointing out my puffy knees (synovitis), situation normal for me but more obvious with my weight loss
I had both shoulders injected that day - resulting in an emergency Dad taxi call as I had driven myself there.
I am getting my knees injected next week, not my favourite thing to experience but the steroids do work for me so worth the discomfort.

Of course I had hoped that my disease could be controlled with lesser drugs but it isn't looking that way. I suppose with over 30 years in my body he has a strong grip on my joints so the big guns are needed. Bonus feature for Rituxumab is that it is used to fight Lymphomas!

My Doc has put in a Yellow card for Abatacept. She mentioned the timing and the fact I developed a very rare type of Lymphoma.

Feeling very fatigued at the moment, the steroids are definitely out of my system and although the injections ease the joints they do nothing for the rest of the symptoms.

It is the year of the horse as of today- my year so hopefully things will continue to improve.
Of to search the forum for Rituximab threads,

Jenny

stickywicket

thistlegirl wrote:

My rhumy appointment went well I suppose, as usual no miracle cure

No? Why did no-one tell me

I'm glad you've got longer off work than you expected / intended. Your body has been shaken up from top to toe and now, in recovery from the battering from cancer meds, it has to readjust to a new onslaught from arthritis meds. I think it's good to take it steadily.

I hope all the jabs help and good luck with the ritux.

The year of the horse? Lets hope you'll be galloping in no time :P

thistlegirl

I am sooooo tired. My knees and shoulders are better after steroid injections but any time I get out and about I am wiped so quickly and the next day is rubbish.
My Rituximab application is moving forward, my cancer and eye doc have given their approval but my rhumey doc had the nerve to go on holiday last week so waiting for her to return and green light everything.

Going into work tomorrow for a chat(informal) but not really looking forward to it.

In another grump

Jenny

dibdab

Hope the "chat" goes well, be of good courage-you have faced and dealt with so much. You just focus on keeping yourself as well as possible- work can sort itself!

Sending hugs and positive thoughts. (((((((((( )))))))))

Deb xx

kentishlady

Hope tomorrow goes as well as possible for you, Jenny. ((((())))

thistlegirl

I felt exhausted when I woke late this morning so I cancelled my visit to work.
I think I slept ok last night, I don't remember waking lots but today was a right off. I was up for a few hours had lunch etc then fell asleep on the couch and woke up 4 hours later.

I hate this, I never used to sleep during the day. Get up late or go to bed early yes but I hate this dropping off for no reason.
I need to get back to work soon financially but physically I am not there yet and it is so frustrating. I need more energy but I don't know where it is going to come from....never thought I would miss the steroid tablets but....

Jenny

stickywicket

I think your body, and probably your head too, are just protesting at all they've been put through - and it is a lot. You've dealt with it all brilliantly. I know your nature is to get on with life - and that's probably what's got you through it - but maybe you just need to cut yourself a bit of slack for a while.

thistlegirl

Signed off work for another 4 weeks today.....every day off work from today I am on half pay. I still haven't got a start date for my new treatment and my left hip is really sore if I walk any distance greater than from the house to the car. Any day I try to do something the next day is written off as I am so tired.
I am going to call the nurse tomorrow to chase things up.

Grumpy :x

Jenny

stickywicket

Hello Grumpy I'd say you have much to be grumpy about. Sorry I missed this yesterday. How did the chat with the nurse go?

thistlegirl

hi Sticky
Well I got a call from the hospital pharmacist today confirming that The doc wants me on Rituimab, as expected. She then had to do the counseling blurb, after being on so many similar treatments nothing was unexpected- feel rubbish for a couple of days after, poss reaction during infusion, 4 fatal cases of a random brain disease were reported 5 years ago but none since and not a proven link.

They said it could be a 2-3 week wait to get started, not what I was wanting to hear so I have said I can do cancellations etc. I want to get this done, hopefully getting both infusions done (2 weeks apart) before I need to go back to work.

It can still take up to 6 months to show if it is going to work....more waiting.

Well I was out running errand this morning and I am now wiped again

A bit less grumpy,

Jenny

dibdab

Glad to hear you have news of the next steps, hope they can fit you in with a cancellation so it starts earlier.

Deb x

phoenixoxo

Hi Jenny,

Sorry I haven't popped in for a while

It's difficult being off work, waiting for new treatment, then waiting for it to take effect. That was a good idea, putting yourself on the cancellations list (so to speak). In the meantime, might your rheum'ist consider prescribing a course of prednisolone, just to tide you over? (That's just a Phee Thought, btw, to be ignored if of no use! )

Best wishes,
Phee

thistlegirl

AAARRRRRGGGGGHHHHH :x

I have a date for my first infusion the 24th of March!!!

It is ages away. I feel like I am watching money flush down the plughole. My fatigue is horrible at the moment and my hips are killing me if I am on my feet for any amount of time.
I was hoping to return to work the 22nd March thinking I would have had both infusions by then. I know it won't have starting working by then but I would have been over side effects etc

Phee, I think I might end up asking for a inter muscular steroid shot so I can hopefully get straight back to work after that. I don't want to get back to work and then have to go off again after the infusion. I normally have reactions to things so I am expecting the worse. The day after my infliximab infusions I was knocked flat.

I am so fed up of being in limbo, I feel like my life has been put on hold since last May when I found the first lump...God I have just realised that was 10 months ago.....this sucks.

Jenny

stickywicket

I kind of see that last paragraph differently, Jenny. You've had 10 months of hell yet your only complaint is that you can't get back to work as quickly as you'd like. I don't think many would come through what you have and still feel like that. Do whatever will help, and I hope it does help and quickly.

phoenixoxo

Hi Jenny,

Yes, 24 March is a long time to wait. I know all too well the 'money-down-plughole' feeling and it ain't great. On top of everything else you've experienced, it's a lot to cope with and I agree with s/w – do whatever helps you

Best wishes,
Phee