Two for the price of one

I had an appointment with the rheumatologist on the fourth of September. She was absolutely brilliant and very thorough. The upshot is that not only do I have rheumatoid arthritis but I also have osteoarthritis - mainly in my knees. Obviously this is a bit of a blow but just something that I am going to have to deal with. As a result my medication has been increased. I am still taking the same dose of Methotrexate (she didn't want to increase it because of my lung function) but my Folic Acid increased to daily. I will also be taking a daily dose of Sulfasalazine. I confessed that, at times, I have been taking the painkillers that Marian has for her back and she has also prescribed them as they are proven to work for a while.

A side note. Just as I was about to publish this I received a phone call from the pharmacist at my GP's surgery about the new medication. She wanted to check that I was happy with everything and told me that I should get the prescription this week. I am impressed! 

Blood was also taken and I have to go back on to fortnightly blood tests. I am an absolute baby as far as getting needles stuck into me so you can imagine that this news filled me with joy. To be fair however most of the nurses are excellent at taking blood and the procedure is relatively painless but that doesn't stop me from worrying about it.

One other thing that I am acutely aware of is the fatigue that I am experiencing. According to the consultant this is a normal effect of rheumatoid arthritis. This is something that is really bugging me. If there is something that I really have to get up for (work, appointments etc) I can manage but otherwise I could sleep all morning. It's a bit like being a teenager again but with more pain! I wish that there was something that I could do about this. Any suggestions?   

The leaflet that she gave me is interesting. one of the possible side effects of taking Sulfasalazine is joint pain! How am I supposed to know if this happens? Another very rare side effect is a severe skin rash that causes blistering which can be a sign of Steven-Johnson syndrome. This interested me as I had this when I was around five and it almost killed me then. Hopefully this does not make me more prone to getting it again - something I will have to ask next time.

The consultant also suggested that I take a look at the RA Society's website (https://nras.org.uk/). I have had a quick look and it looks like an interesting site with loads of information. This is something I intend to explore in more detail in the next few days. 

When I got this appointment there was a second letter with another appointment in December. The consultant said that they were not seeing new patients often enough and that from now on they were all going to be offered face to face appointments every three months for the first two years. I wonder if my email (see last post) had anything to do with this. Whatever the reason, this is an initiative that I thoroughly applaud.

Last month we went to the Shrewsbury Folk Festival. This is an absolutely brilliant festival and is wonderfully organised. As far as I am concerned one of the best things is that the caravan is parked on the festival site and everything is really close. It is also very flat so walking is much easier. There is also a rather excellent bar which has around fifty real ales during the four days of the festival. The worst thing is that there are three stages so decisions have to be made as to who to see. We decided not to be too concerned about what we were missing and just enjoy the music that we saw. We had a brilliant time. There really is very little better than watching live music.

On the subject of festivals and live music over fifty festivals had to be cancelled this year and a large number of music venues are closing. Please think about supporting your local venues and let's keep music live. As far as I am concerned grassroots music needs nurturing otherwise all we are going to have in the future are people who have been pushed to the front by "reality" music shows.

Another way of supporting these musicians is by buying their merch - their livelihood depends on it. I have far too many band and festival tee shirts but I am not going to stop buying them - as long as they have "fat bastard" size in stock! My most unusual piece of merch is a band umbrella - the perfect accessory for music festivals in the UK.

Anyway I have rambled on for far too long now so I'll finish in my usual way.

Support our National Health Service. We all know that it is not perfect but it is one hell of a lot better than the alternatives.

Please comment and leave your name. I really love seeing what you have to say. Also I would really appreciate it if you could share the blog especially if you are enjoying my jottings. It would be great to see more people reading them.

Until next time. Take care of each other.

Rob   


Comments

  1. Anonymous5 September 2024 at 14:20

    You must be in a strong and experienced position to suggest how the NHS can do even better?

    ReplyDelete
  2. Anonymous6 September 2024 at 05:41

    It's great they are looking after you. I initially found Sulfasalazine to be a really helpful supplement with methotrexate but am now coming off it, as the benepali has been so effective. I think most RA specialists are now recommending daily Folic acid, except methotrexate days of course.
    I know you don't like injections, but I have preloaded Metoject pens, which are really easy to manage and virtually painless. You don't even see and barely feel the very fine needle. It's a suggestion if you feel the tablets aren't as effective as you hope. Good luck- Theresa

    ReplyDelete
  3. Anonymous20 September 2024 at 04:53

    A friend from Australia was visiting. She had ross river virus and still has problems with her joints.She has RA too. I gave her some of my Healthspan rosehip supplement tablets and she says she feels that they help a bit.They give me indigestion so I only take if my fingers are aching but I do have rosehip oil I can rub in and I see that you can get tea/teabags. I also like turmeric tea and its supposed to be anti inflammatory . Best wishes Ali

    ReplyDelete

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