And the results are in...

 I received a massive communication from the rheumatologist on Sunday - 11 pages long and with details of all the tests. One surprise - I have a compression fracture of the T4 vertebra in my back with milder changes at T1. Apparently this may be due to osteoporosis but I may be hearing from more specialists about this. 

Rheumatoid Arthritis has been confirmed and there is also a small amount of scarring on my lungs which accounts for the breathlessness, although it doesn't seem quite so bad at the moment. I also may have a problem with "intrapulmonary lymph nodes" whatever they are! I have also got full reports on the bloodwork that was done although I really don't understand a word of them. Still it is good to have a body MOT once in a while.

As a result I am now started on Methotrexate which is taken once a week and Folic Acid which is taken three days later (I almost forgot to take this on Sunday). The Methotrexate may take some time to work so I am still on a decreasing dose of steroids. I am a little perplexed as I was given a two month supply of the Folic Acid but only one month of Methotrexate. I am assuming that this is because I have to have fortnightly blood tests to check how I am doing, although I have messaged the GP to check. The Methotrexate (I wish it had a shorter name) should also ensure that the lung scarring does not get any worse.

I hate getting needles stuck into me so I'm just going to have to thole them. The first, of this round, is on Thursday.

To start with all of this seemed a little scary but now that I have kind of got my head round it all I can be much more positive about it and, at least, have the knowledge that something is being done and that treatment has started.

I still have nagging pains below my thumbs but this is manageable. The last couple of days I have woken up with painful knees but the pain goes quite quickly so no major problem there.

There is no way that I am going to let RA dictate my life - at least at the moment so, with this in mind, I went to one of our usual whisky gatherings which I enjoyed, especially after the Dons game was over! I seemed to have no adverse effects the next day - so fingers crossed for the next one - at least while I still can cross them!

There's a lot of information in this update and some of it is a bit jargony - sorry but this is how I am getting it. I would just like to reiterate how wonderful our NHS is. We need to fight to keep it the way it is. I shudder to think how much this would have all cost in the USA.

For those who are telling me to stop working - teaching is one of the things that are helping to keep my mind off my health. I have only three more days to work this term as I am taking the last week off. It also looks like I will be doing a lot less in the summer term!

Here is the usual plea for folk to share and comment. I love it when people share the blog and it is great to read all the comments - even if I don't reply to every one of them. I appreciate the advice and feedback. Thank you.

Hope everyone is well - have a great week.

Rob

Footnote - I now have a folder for all my RA communications. Hopefully this will keep all the bits of paper together. All I have to do is remember to put them into the folder.

    

Comments

  1. Anonymous19 March 2024 at 00:25

    I'm so glad that things are starting to come together for you Rob and that the NHS is working, if slow.

    I had the same thought when I needed the NHS.... How much would this cost in the US?

    Well, a nurses health insurance would not cover it so I would not be here and chances are, we wouldn't have met. Many things to be grateful for xx

    ReplyDelete
  2. Terry Miles22 March 2024 at 11:29

    My aunt had a terrible time over 20 years with RA. She joined a Baptist church and found a community of variously afflicted old women who supported and comforted her to her end at 85. I’m a radical atheist but I can’t dismiss the benefits of the totally deluded little community she gathered around her. My advice to you - and to myself - is to find and/or build a community appropriate to you around yourself. Don’t allow the RA isolate you. You’re proving you have so much yo contribute.

    ReplyDelete

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