To Med or not to Med...that is the question

Marbella, Spain

Summer of 2007 arrived and although I had been experiencing periods of swelling and pain in some joints it had not been overwhelming.  I had been told in 2006 that I had a uterine fibroid measuring 10cm and a hysterectomy was recommended.  In my usual fashion, the idea of surgery terrified me , I buried my head back in the sand  and tried to pretend it wasn’t important.  I had read that they reduce in size at menopause and as I was 50 when it was diagnosed I decided to ‘wait and see’. We moved to Spain that summer, for a year,  and within a few weeks of arrival my RAD went into overdrive.   It started in my knee and very quickly spread to almost every joint in my body.  I kept thinking it would improve, was taking nothing but high doses of Ibuprofen, and every day I would wake up feeling like I had the flu, could barely make it from the bed to the bathroom  and spent every day in acute pain.  I cried constantly from fear, desperation and frustration and of course pain, my life was a misery. I spent many days in bed in too much pain to even get up. To add to the misery my fibroid was growing, I now looked 4/5 months pregnant, but couldn’t even think about that,  it just added to my misery.  My family despaired they were profoundly worried and didn’t know what they could do to help.  I phoned my Dr in the UK and she advised that I should have a course of prednislone…whoa!  No way was I going to take that…so we settled on Diclofenic and my daughter who was back in the UK on a visit picked it up and bought it back with her.  It didn’t help. 

I somehow made it through to the New Year of 2008, to be honest it’s a blur of pain and despair and I don’t know how I got through it.  January came and bought with it an apointment with my Rheumy so I flew back to the UK.  He took one look at me, told me I needed to take the prenislone, prescribed 10mg a day and advised that I should take MTX.  The prescriptions were written.  Within days of taking the prednislone  I felt on top of the world.  MTX, no I wasn’t brave enough for that, I put them in the cupboard, we were returning to the UK in July I’d think about it then.  My prednislone dose reduced gradually over the coming months down to 2.5mg, and I felt OK.  Life was good – I didn’t need to think about it.  By the time the summer ended and we returned to the UK I was off the prednislone had some slight pain and swelling but generally was OK. A follow up with my Rheumy in Nov 2008 the letter said ‘generally doing well does not need to start MTX’.  Hallelujah!  My fibroid had shrunk…the menopause had arrived.

By March 2009 the steroids were out of my system and the pain was back, yet again.  I had developed a Bakers cyst behind my left knee and the pain from that was agony alongside a cycle of swelling and pain in various joints.  I had an appointment with the Rheumatoid Nurse and she administered an intramuscular depomedrone to help settle things down.  My next appointment with my Rheumy was  in June 2009, he drained my knee, injected yet more steroid and then we discussed meds again he said ‘this is a team effort and only one of us is playing  you really need more aggressive treatment you need to try MTX’.  I knew the steroid would help for a period of time so we agreed to discuss again in September.  This time the steroid ‘relief’ only lasted a few weeks  and I was back to the same of cycle of stiffness, flu like fatigue and pain.  

I recently was looking through the document folder on my computer and found the following passage that I had written prior to starting any medication, I thought I would start a diary but never wrote anything else! . I thought it was appropriate to enter it here..

Living with RA is living within the unreasonable. An immune system attacking itself is not reasonable, a disease that warps your joints is not reasonable and the kind of pain that makes you cry every day, can make you scream, takes away your sense of humor and will to live is not reasonable. Therefore, it is not reasonable to expect that you will live cheerfully using the same tools as a healthy person with a bit of a headache.
I read this recently on the internet, and it made me realise for the first time in 20 years that I have been trying to live my life as a healthy person...and I'm not.


Oh today is fine, having had Steroids injected into both my knee and my elbow on Friday my whole body is feeling the benefit amd I feel more or less pain free...very easy to kid myself that I am not ill at all, I've had a day of housework, have inevitabally done too much...but feel good...normal!


But I know that in a few weeks this dreaded disease and pain will return  to haunt me, I will once again lie in the bath and cry because my body is in too much pain to move amd I can't bear the thought of trying to get out of the bath, and I guess in truth I feel sorry for myself......my family know I have  pain on a daily basis but will be mostly be oblivious to my fear and despair because I dont want to burden them with the ongoing effects of this chronic disease.  So the door is locked and I cry alone and in silence.  To most people in the outside world I just seem like a normal 50 something woman geting on with my life...I choose not to tell people about my illness, is this right or wrong? I cant decide..I just feel like I am at a crossroads and I need to make some serious descisions....Yeah I know...like Methotrexate or Not?   ...has always been not up til now...but now I'm not so sure!!!!  My  doctor said to me last week that this is supposed to be a team effort and only one of us is playing...meaning him!!!


Life is unpredictable and I have no idea what the right thing is to do...will my RA go into remission on its own...Oh I know thats unlikely but I can hope...can I bear the side effects of Methotrexate and will it work...oh and yes can I really give up wine!!!!!!

I lasted only until August when I phoned begging for an appointment I needed another steroid shot, my daughter was getting married in September 2009  and no way could I enjoy that with the amount of pain I was in.  My Rheumatologist agreed to inject my other knee, which I knew would give symptomatic relief to all my joints, and then we had the talk of 'this isn’t going away you need to treat it aggressively to stop further joint damage – you cant just keep having steroid shots to control your disease…' reluctantly I agreed to start MTX and folic acid after my daughters wedding on 6^th September. 

I looked at that bottle of pills endlessly I’m not sure what I thought would happen, I just know I was terrified!  I worked myself up into a frenzy and put the day off for as long as I could there was always a reason why I would start tomorrow.  As my pain returned I realized my choices were limited so I took a deep breath and swallowed my first tables, 7.5mg.  OK..nothing happened..I didn’t collapse or stop breathing  or have seizures or anything else that I had thought about..I was OK.  That first week wasn’t too bad, a bit nauseous a bit tired but OK.  Week 2 it hit me, the tiredness was overwhelming it wasn’t just tired it was like brain fog I felt drugged and I felt sick.  Week by week this got worse, I’d take the tablets then for 4/5 days feel like hell and then have 2 days of OK, the pain improved…but this wasn’t life…was it?

End of November and it was back to Rheumy….'stop the MTX…we’ll try hydroxychloroquine'.  Well,  I liked this,  yes I was worried about the eye problems but tried to put that to the back of my mind, this was the mildest of the DMARD’s and if this worked for me I’d be happy.  Four months I was told is the period of time before we can asses if its working and by January  2010 the pains were back, my GP put me back on 5mg prednislone until I saw my Rheumy at end March.  Next visit it was deemed that Hydroxychloroquine was not working…lets try leflunomide…….uggh sick, sick and sick!  Next Visit mid May lets try Sulfasalazine…’need to have failed 2 DMARD’s that you have trialed for a reasonable period of time before we can put you forward to ANTI TNF therapy’…..Did I even want ANTI TNF? 

So my Sulfasalizine journey began I started taking it at the of May and I think it was working to a degree…was I in remission …no…but doing kind of OK ….next follow up I was advised to stay on it, so I carried on and all was well until I woke up on Friday 29^th August 2010 and did not feel well at all......