The on-going saga my RA

Hi all, its been sometime since I was on here. I must admit I felt a bit of a fraud as everyone seems to be having a worse time of it than I did.

However after some 'Spread apart' appointments I have had my MTX and folic acid doses doubled as my RA was particularly aggressive during the winter. I was in considerable pain for most of the first 6 months of 2013. When I eventually got an appointment (don't get me started on appointments!) my score was quite high and according to my doctor "Yes I can see you had a flare up a few months ago from your blood tests" Yeah thanks for that I wondered what it was!! (Sarcasm is wasted on the NHS) However and intra-muscular steroid injection fixed me up in a day! Now on 15mg MTX and 5mg Folic acid, so far no side effects. Also now the steroids has worn off my hands are painful again, bummer!

The good news is that I stopped smoking in October and only had 1 relapse so far, fingers crossed!!

Also my golf has improved no end over the past year so not all bad.

Why oh Why do Hillingdon Hospital send me, not one but two letters, asking me to call them to arrange my next appointment, when my Rheumy has said on a form that he wants to see me in 3 months, they then give me an appointment for the end of February 2014! Especially when my last one was 22nd July 2013. Apparently the Rheumy can say what he likes on the form but it doesn't mean a thing when it comes to appointments!! GRRR!!!

I also am starting to feel really old now as my darling daughter turned 40 this year (Great Party!!) My oldest grandson is fast approaching 18 and my youngest granddaughter will soon be a teenager!!

Thanks for listening to me rant, much appreciated. Hope you are all well as can be anyway!


7 Replies

  • Hi Richard, Welcome to the "club". You don't appear to be a fraud at all, you appear to be following in the same footsteps as those who have gone before you :) Typical travel through the routine of living with RA and other inflammatory diseases.

    I can't address the scheduling problems, but know there are similar ones everywhere!

    Great that the golf game has improved, so that shows you have too!

    Good luck with the next visit to the Rheumy, and with any adjustments he makes to your drugs.xx

    By the way, You do not appear to be old enough to have a 40 yr old child :) xxx

  • Thanks for this, much appreciated. I have 2 children (42 & 40) and 6 Grandchildren (20, 19, 17, 15,15 & 12) They manage to keep me young, broke and endlessly entertained?!?!

  • Hi Richard,

    I never would have thought anyone on this forum could be a fraud. I believe many of the people here have had are a a lot longer than I have. So I think they have more pain in various areas than I do. However, it doesn't make my pain any less.

    I wouldn't think your fraud at all. Maybe your RA wasn't so bad at the time you are on the forum.

    Hope everything goes okay with your appointments. Congratulations on quitting smoking! Yeah!

  • Thank you, much appreciated.

  • Yes, well done for quitting the fags and hopefully that will really help your RA. I managed to do it a while back and do feel miles better, as well as enjoying the extra cash. But if your hands are starting to hurt again do start nagging your rheumy team if you can and ask for a medicine review just to see if you'd do better on another combination of drugs. I think we can get so pleased by any little improvement in our symptoms that it's easy to forget to ask if it could be even better still. And a bit of nagging might even help get the appointment moved forward as sometimes you can get a cancellation. keep swinging those golf clubs. Polly

  • Hi and nice to hear from you. I would love grandchildren but make sure I never let it slip out to my children ! Well done on quitting x

  • I think I must have the best Rheumatology clinic in the UK. It is in Lincoln County Hospital. I get seen every 4 months. I take the form the consultant gives me after each appt for when he wants to see me again and I hand it in to the appts there and then and get an appt. They have referred me to occupational therapy and physiotherapy and again got the best of care as I get to see the lead therapists who are connected to the rheumatology clinic.. They have a nurse helpline you can ring and they do ring you if not that day then the next. I rang them at 5 am one morning as going through a horrendous flare from 6pm the previous evening in my hand, at 8.15 they rang me, had had a word with the consultant and told me to come in straightaway for a steroid shot.

    I have a appt with hospital on Monday and it looks like I will have to have a change of medication as mtx and sulpa does not look like it works anymore, but I do have the upmost confidence in my consultant.. Maybe a change of hospital Richard.

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