Biologics and Beyond

This is the start of something new for me, the beginning of my treatment with Biologics.  I don’t know what to expect or what is going to happen but I know that I need to take control and deal with this disease head on.  I no longer want to live my life in pain, a life dominated by this disease, I want to be the person I once was…I don’t know if this is possible but I am going to try.  I am going to update my blog every week as I undergo my Enbrel journey and I hope that my experiences may help others.

Yesterday...feeling apprehensive!

Yesterday I had an appointment with my Rheumatologist . It was ok…nothing out of the ordinary, my CRP is up at 39 but my ESR still only 5. The joints in my hands, wrists, feet and knees  were painful and swollen.  We discussed starting Enbrel in light of the fact that I have had  a sore ear and a slightly sore throat that has lasted for months but isn’t infected.   He said unless I was ‘ill’ (and he said ‘you look absolutely fine to me’) with fever and cough or real congestion, to go ahead. We discussed my sore ear  further and he said I had good movement so didn’t think it was RA related but there  could be some bone erosion,  OA possibly,  so the first step a dental Xray and if that looks OK when he sees it he will order a CT scan to see what’s going on.  I had the Xray yesterday and am now waiting to hear what’s next!.  I asked him if my expectations of being able to live a pain free life were unrealistic and his answer was that it cannot repair joint damage so they may always hurt to a degree but for some it is very successful, some part successful and for some it doesn’t work.  This I already knew but I told him that I had read about people being in remission for years on this drug…and I wanted to be one of those people.....  He smiled….

Frimley Park Hospital looking scruffy -
 but it is undergoing a multi million pound refurb!

This morning I felt worse than I have for ages, maybe because I was out last night with girlfriends and am now paying the price…I wasn’t late and only had 1 glass of red wine.  Although I have attempted Enbrel twice before, (never having got past one shot),  I felt very anxious about it today I think that is because of the allergic reaction I had to Amoxycillin over Christmas. It has left me feeling very vunerable yet again!.  Symptoms this morning were  an overwhelming feeling of being unwell, general flu like symptoms and I think a few imaginery ones in there too, kept thinking I’d got a cold, and that my mild sore throat I've had for ages was worse and I even asked my daughter if my voice sounded funny!   Joints not good either, both hands swollen and both wrists and knees swollen and sore and feet as always are killing me. My ear problem is continuing to irritate me although that feels marginally better this morning.  I tried my new neti pot yesterday, not sure I really like that feeling of water up my nose but I will continue to use it to see if it helps.  This level of anxiety is not good for me and I was trying to have positive thoughts but I found it very hard.

Swollen left wrist today

Swollen knees today

My anxiety rose as I drove to the hospital and I even shed a tear when my daughter phoned to wish me luck…don’t ask what was going through my mind or indeed what I thought was going to happen.  Those of you reading this who don’t know me personally are probably thinking I’m an emotional mess, whereas in reality I’m a quite ‘together’ person and most people perceive me to be strong and in control!  I can’t quite fathom these two halves of me.  

My Enbrel shot

I arrived in clinic with my Enbrel in my pocket my anxiety obviously showing as the Rheumatoid Specialist Nurse asked if I would like her to administer this injection, much to my relief, I agreed with the promise that  I would do the 2^nd one in a week’s time.  She cleaned the area on the top of my thigh with an alcohol wipe and then she told me I had to look or Id never know what I was doing.   She removed the end of the pen, showed me the liquid within pressed the end against my upper thigh and clicked the top.  Ouch….boy did it sting…but it was short she counted to ten and it was over.

I left the clinic with a spring in my step and an appointment for next week at 11am…it was over and I felt surprisingly good about it. 

Back in the car and on my way home I thought to myself……No Barbara this is not the end - its just the beginning….I’m full of hope!