Dear All

In January I had my first knee replacement and it has taken me some while to recover from this. I am only just tentatively and with the aid of a walking stick going up and down the stairs. As my knee was in a bad state when they operated and also from all the xrays they have taken of various joints, it has made my Rheumy team sit up and take notice that maybe my RA is worse than previously thought. Suffice to say in May I went to see our new RA Consultant and he went right back through all my notes and listened to me. After failing on Humira and Enbrel he has decided that my next step should be Rituximab by infusion in hospital. My DAS score qualified my immediately and within a couple of weeks the funding was through. I have today received my dates for the first infusions. 29th July and 12th August as a day case in hospital.

On my second DAS score appointment the RA nurse gave me a steroid (depo) injection and, although, it took well over a week for me to feel any effect, for the last three weeks I have felt marvellous. I even tricked myself into thinking that maybe the RA had gone into remission. At the beginning of this week I decided to reduce the Tramadol to see if I really was as good as I felt. BAD mistake. Within 24 hours at 3.00 a.m. in the morning I was in agony and as the week has progressed I can feel the steroid injection wearing off. I almost feel as if my batteries are running out and I am so tired.

Tomorrow we are off to Llandudno on a day trip by coach which was booked during the three weeks I felt so good. I want to go as my Husband suffers from depression and he really enjoys our days out and is looking forward to it. I have no idea how I am going to cope so I am just going to have to grit my teeth and try and pace myself as I have real difficulty in walking. I think we are just going to have to sit on the sea front with a blanket over our knees and a flask of coffee. Preferably in a shelter as the weather does not look promising.

On Wednesday I have a mobility assessment for a blue badge. Over the last 12 months I have almost become a recluse. I go to work three days a week, park right outside and come home. For the rest of the time I stay at home as the thought of walking anywhere tires me out just thinking about it. Even going to our local Tescos is too much. I need to get the car door wide to get out so have to park at the very edge of the car park away from other cars. This is the furthest point from the shop and then to have to walk around a Tesco Superstore is just beyond me. I want my independence back as my Husband is going everywhere for me and doing everything for me. If I could just get parked near then I might be able to have a little time around the shops or chemist or bank. I shall be so upset if they turn me down.

I am lucky that I have a way forward with my treatment so am holding out hope that the Rituximab will kill the B cells more successfully than the Humira/Enbrel did with the T cells. However, my Consultant did say that if this does not work then there are very few options left other than trial drugs. Fingers crossed.

Anyway enough moaning. I feel better for typing this.

Hope you all enjoy the sun when it eventually arrives and have a good weekend.

Jackie
xx

Hello Jackie

Sorry to hear that things are not too good for you at the moment, but glad that your Specialist

appears to be on the ball. I wish you a good day tomorrow and hope the weather will be fine.

It may be just what you need, You don;t need to walk very far. I love people watching myself.

Good luck


Rose x

Dear All

Thanks for your kind replies. Had a good day in Llandudno. It did not rain but it was quite breezy on the front. However, this was a good thing as there were plenty of seats - I don't think today will be quite so quiet . I am absolutely shattered today. We did very little walking but just the energy of going out has completely worn me out. Roll on the Rituximab at the end of July. A chilling day today as it was also Methrotexate night last night so always feel rubbish on a Sunday. I can hear Wimbledon calling me.

Hope you all have a good day.

Jackie
xx

hi Jackie,

sorry to hear you're struggling .. must admit i've lost my va va voom too, and i can't have a depo injection to help me along as it's too near me starting my new drug now. i will be starting on Humira the week after next.

glad you managed a nice day out.

good luck with the Blue Badge, i've had mine 3 years ( was just re-newed in March ) as i suffer badly with Osteo in both knee's.

to be honest without it i would be almost housebound unless hubby was out with me pushing me in the wheelchair.

good luck with starting on Rituximab,

Suzanne x

Jenni

Thanks for your post. Unfortunately I am still struggling to work (I need to for financial reasons) and I was turned down for the lower rate of disability living allowance about 12 months ago. My health is a lot worse, hence the waiting for the Rituximab. I do earn a good salary for working a five day week (three days at work, two days at home), so I do not think I would qualify for any benefits and am not sure if I would qualify again for the disability living allowance as I know they are changing the criteria or even if it still exists to qualify.

I know it is important that I try and get out of the house but I am trying to save all my energy so that I can continue work. I am pinning my hopes on the Rituximab that it will give me even a small bit of my life back. I supposedly have another 19 YEARS before I can retire now that they have put up the retirement age for me to 67. My only hope is that if I become too ill to work that I can get medical retirement from work. I just need to get my 15 year old Daughter further along into her education and hopefully through University and then I can start thinking about me.

I am keeping positive and trying to keep going as long as possible.

Take care

Jackie
xx

Jenni

Thanks for the info. I will definitely look into. Just need to get over the first hurdle of the Blue Parking Badge tomorrow then I can look into everything else.

Jackie
xx