Coming to terms

IMethotrexate 2.5 mg-ROXs one of the hardest things to have to deal with.. there I was convincing myself foolishly that this PMR thing would be seeing the “Get out of my life” door, when I am told that is not going to happen.

Yes I went for my hospital check up and told the Rheumy that I was finding it hard to get down to the level of steroids that he expected me to.. without feeling the aches and pains returning with a vengeance.

Well that was it.. another medication prescribed.. this time Methotrexate 2.5mg.. yes 6 tablets to be taken weekly and then 5mg of Folic Acid to be taken 24 hours later.  Well that was on the Wednesday.. so I thought Saturday would be a good day to start as it will probably take a couple of days to get into my system before any side-effects materialise, should I be unlucky to suffer any.

My logical thinking was if I took the tablets the very next day, Thursday, then it would probably be Saturday should any side-effects start to appear.  So Saturday was the best day to start as any side-effects, in my thinking would start on Monday after the weekend.

These things don’t take long to affect you.. and not in a good way.  The Rheumy said it would be about three to twelve weeks before they would benefit me.. Little did they tell me it would be only a few hours before they would upset me…. my god as Saturday progressed, I was feeling more tired with every passing hour.

By Sunday, I just wanted to lay down all day and sleep.  Then came the real nasty side effect my mouth began to feel sore..  It wasn’t until Thursday of last week that it started to get better and I started to feel better within myself.  All week I had been feeling as if I was going down with something.. yet nothing materialising.

Anyway there was two days of respite before I was due to take them again… Saturday arrived and I downed the 6 tablets again.. we went out.. and luckily I didn’t feel as tired, but my mouth is so sore.. today my tongue is stinging and so sore…

Yesterday, Monday was a visit to the Docs.. yep I told him about the side effects and he told me, this is what you get when you take Methotrexate.  Anyway we came to discuss PMR, he asked how I was doing and I told him I was determined to get to the 10mg  daily Steroid dose the hospital said I should be on..

Then I asked how long does it take to cure PMR… that is when the cold stark reality hit me… when he told me cured is probably not the word to use.. more controlled. Apparently it can be controlled and there could be periods I go without any flare-ups but there is always the risk that it could flare-up at any time..

How foolish, I was, there I was thinking in a couple of years this thing would be beaten and I would be back to my old self…   It came as a moral shock to know that I could be suffering with this for a very long time.  There is nothing worse than remembering how you were and what you could do, and then facing the reality that some things I will never be able to do again.

So now it is just a case of waiting for the sore mouth to go and then have a good couple of days before the next dosage.. I do hope this sore mouth is just going to be until my body gets used to this drug.. because it is bloody well hurts.

How long I will be on this Methotrexate I don’t know.. the only thing I do know is this; it entails regular blood checks and stringent monitoring by the doctors… but I will say this if the side effects start to get too severe it won’t take much for me to say, I am not taking this anymore.  I thought PMR was bad enough but some of the side effects of these drugs are non too pleasant either… what a toss up Pain -v- Side Effects.

Anyway it is not just a case of coming to terms with the fact that this could be with me for the rest of my life… how depressing.


4 Comments Add yours

  1. Good old MTX. I took it for 9 years. My hair got so thin it became impossible to hide my scalp. Folic acid is supposed to keep the hair loss to a minimum. It didn’t for me. I would have multiple RA nodules on pressure points of hand and feet. When they prescribed above 3/2.5 mg tablets a week, the nodules would grow larger and get very painful. I’ve had 3 rheumy doctors through the course of my RA and each stressed the MTX. Each time I explained how a larger dose seemed to effect my nodules. Finally my current one admitted MTX can encourage nodules in some patients. These dang things made it impossible to wear normal shoes and grip items with my tender hands. She took me off of it. Finally! And you know it – the nodules all went away!

    Have you been to the arthritis website? There are boards there that provide a lot of experience and support. MTX is a common topic there. If I remember right, the side effects you are speaking of are less with the injectible form.

    The right “cocktail” of meds is different for everyone. I hope you find yours soon!


    1. Bren says:

      Well I will give it the twelve weeks they say before you feel the benefit and if I don’t feel any benefit I will off of it like a shot.. Today is the first day I have not had such a severe sore mouth.. so I get three days respite out of 7.. think I will seriously think about whether it is worth taking after those 12 weeks.


      1. The one thing I do miss about MTX is the cost. The generic is almost nothing. I use Humira now at $25000 a year. It works but I would hate having to go off due to the cost. Luckily my insurance has $20 a month copay on it or I would not continue. Let us know how you progress with it.


        1. Bren says:

          Luckily being in the UK it is prescribed.. I have now got one of those pre-pay prescription certificates.. cos here it is £7.85 per prescription…. I do think at times the only people who really prosper is these drug companies…


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