Hi folks I'm sorry I've not been on ... Sorry for my absence much of which due to my laptop being out of order. Just been looking at recent posts and catching up a bit.
I've been in bed virtually at a standstill and mostly housebound since mid June. Seized and flaring the worst I can recall in 20 years of RA. My legs will not support me to walk more then a few yards at present as there is so much inflammation especially behind both knees in the soft tissue. Joints that were usually strong and trouble free have come under this vicious attack and return of uncontrolled RA which is like a raging wildfire everywhere. I have watched new damage and feel the RA attacking all my soft tissue and have widespread nerve pain and seizing, and distortion in my fingers and I am struggling with dexterity. It's all gone pants due to not being able to get in the rheumatology infusions clinic for Rituximab as there is a six week delay as the norm for when you start to flare and when you can get in. I have been very anxious about this since last year in my Rituxi start in April and voiced my feelings and was told .. You yell as soon as you start to go downhill and we get you in as soon as we can. To have been doing so great on Rituximab and for 10 months my bloods showing hardly any inflammation and no need for any oral analgesics/anti inflams for a year since my first duo of Rituximab and very good mobility and no need for any steroid shots .... I would say that was a Rituximab success.
I understand it is difficult to know when you will need repeating as everyone is different but in April when I saw a rheumatologist and showed them my hot swollen knee and red swollen little fingers and my ESR had raised by 5 ... It was to me a major sign to repeat ASAP but they said I should wait a bit longer. I was already at a year then. That wait a bit longer has rendered me an invalid in struggling to force myself up and to the bathroom. I have not been downstairs since Saturday. Out only a hand full of times with my husband assisting in five weeks. No anniversary hols or any hol or activity.
Once I did yell in May when I fit widespread problems and seizing/swelling and got the biologics nurse to our me in the infusions diary it was almost seven weeks to wait .. Of absolute hell to be honest... and I am no stranger to RA pain but his has had me reduced to tears every day and each morning I wake with a massive anxiety attack and palpitations about facing the day. This is not the me I know but I have been reduced to a person just existing and trying to last out till Rituximab kicks in again. I was given an IV depomedrone in the buttock ten days after my call to ask for help which was a month ago or so but by then RA had started to run riot I was offered to try get me in at another hospital but as I had a other pressing unrelated appointment at the time that would have been and I thought the depomedrone would last me I said I wild wait till early July for my Rituximab. Normally a steroid shot would last me much longer. I made the wrong choice there and ended up begging .. In tears for a steroid in my knee as it had ballooned and was dangerous as it made me wobble and unstable going downstairs. So they have tried to help but I feel I have to almost meltdown to get a result and they admitted to being grossly under resourced and stressed.
The knee steroid took the swelling down over the knee and removed pain but inflammation is back behind it again now. The knee steroid was two weeks after the general one and two weeks before my repeat Rituximab. My husband for the first time ever had to take me to clinic as I collapsed getting out of his car. He had to run and get a wheelchair for me to arrive in ... A first. I was in agony. The infufions clinic staff and nurse are lovely and their hands are tied by the lack of resource and only three spaces for Rituximab in the ward. The IV Pred with Rituximab lasted for three days with much welcomed relief then bam, back to crazy pain and stiffness and to being stuck in bed. The effects of all this have made me a nervous wreck and I have little confidence in the system/lack of resource. During the first duo of the repeat infufions last week a consultant came to see me and acknowledged I had been left too long and I begged I could be given Rituximab next time to preempt rather then to react to a downturn as obviously i deteriorate so rapidly. I could see it did not go down well. I emphasised my terrible state of mind and immobility. I asked for an appointment for my other knee injecting as it was massive and swollen which was examined and was told there is a five week waiting list for injection clinic???? No way I said I could wait and let it attack my good knee usually with no problems so I asked if I could get an appointment privately. Still waiting to hear but I will chase next week when I have my second Rituximab as I know you need to leave some space between steroids but don't want to wait another four weeks. Last year I had similar with awaiting Rituximab - general steroid shot , then my infusions then two weeks after both knees injected. Those shots tided me over till Rituximab started to work two months later. To have gone six weeks of madness this year and last when awaiting starting the med being bedbound, and then in 2013 a major mix up re starting Enbrel resulting in Immobilty and being in bed a month. You'd think they'd fall over backwards to ensure it did not or does not happen again? It falls on stoney ground when I say I've been here twice before. I'm harder to treat like this and sustaining more damage day by day. My partner says me being patient and articulate has got me nowhere and the fact I struggle there under my own steam and unaccompanied for clinics usually makes them think I am in a better state but surely they have eyes? They are just so under resourced and so many patients but are they all in bed in agony for months?? No I am sure not. I never like to compare myself or say I deserve more then the next person but I deserve more than is happening.
I have never had a pain management session or advice on analgesics apart from my GP. I have phoned today to arrange to speak with him tomorrow with a view to reviewing what I take - Fentanyl 25 mcg patch; Paracetamol capsules 500mg and Nurofen Express capsules 200mgs. They only take the vey edge off it. i need some review and advice if I can do better? I seem to have fallen by the wayside by having very stressed and under resourced people who I am sure don't like to work this way but none of it helps me.
The biologics sisters are excellent but can't do more then their department allows. The one I see says I need to be put in the diary for repeat at 8 months regardless and I hope the consultant next time does not challenge this. I feel I cannot cope with a fourth year of madness next time. I have little trust in this wait and capitulate system.
In my infusion clinic I sat next to a lady who was in for Rituxi and she says she had hers preempted every six months as she could only just last that long (NICE guidelines state 6 months in the minimum you can have Rituxi repeated at. ). When she was told my scenario by myself and the sister she was shocked. I am hoping to get my GP to write a letter of support to preempt rather then react slowly and let the RA come raging back. I also think I need to put it in writing my fears to be left to deteriorate.
I do not know what they will do to tide me over till Rituxi starts to work it if I can't get this knee injection. I have seen posts before saying oral low dose steroids are given when the iv ones or joint ones don't last and fade due to rampant RA uncontrolled. I know a couple of Rituxi vets and their experiences but am I unfortunate here in my area and treatment or is everyone else hacking to resort to meltdown to get a result? I did not contact them for a year apart from routine clinics you have to attend etc so I do not consider myself a nuisance. I am very polite and articulate and think maybe some who are not who get dealt with first so they shut up. I don't want to point fingers as some staff have been very helpful but some are doing an Ostricht.
Any thoughts .. Similar experiences or advice would be greatly appreciated. I have never felt so depressed and I am usually such a strong person but this time I am not. Sorry for the length and disillusionment. I keep trying to focus each day on something to get me though it all. My husband is trying to help but has to work. He is very heartbroken too.
Thank you. NK x