I sometimes dip into this forum but have never posted before. I was diagnosed in 2005 and been on 25mg mtx ( injections) and 200mg hydroxychloroquine since 2007. During this time, I have had 3 rheumatologists, with 28 mths between appts when no. 1 left and no. 2 took over and 25 mths after number 2 left. Last appt I asked about reducing my medication as I consider I have been in remission for years and also mentioned the previous rheumie had said 10 years plus on hydroxychloroquine was not good. All I got was ‘well stop it then’. Which I have to no detriment. Other posters talk of remission clinics/ appointments at regular intervals/ appts with nurses. When first diagnosed, I did get seen a lot, but now I just feel totally neglected. Current expectation is an appt in Oct 2020.
Am I being far too tolerant?
Written by
watcher56
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Under ‘shared care’ I usually see a Rheumy at 6-monthly appointments and recently was requested by my GP to attend for ‘annual review’.
I’m currently in ‘clinical remission’ but because I’ve recently reduced Methotrexate in two stages at my own instigation, but with my Rheumy’s consent, he has indicated 4-monthly or SOS appointments when and if I need monitoring after x-ray or bi-monthly blood results etc.
You should be seen at least once a year, even if you have stopped all medication. If you are still on MTX then you should be having blood tests every 3 months, and eye tests annually if you are still on hydroxy.
Hydroxy can be effective for many, many years. There are people on here who have been on it for longer than 10 years. However perhaps by saying "no good" the rheumy was referring to the increase in risk? After between 6 and 10 years (basically once you have taken 1kg of the drug) the risk to your eyes increases.
Has bloods monitoring been reduced for people on methotrexate? Just had a look at my old methotrexate monitoring booklet and I was having monthly blood tests when I was taking it several years ago.
My blood tests have been reduced to 3 mths now. I have been on methotrexate for about 10 yrs and I think there have been no concerns about my liver function so they think it's safe at this level.
Thanks Mall, I was having monthly bloods from 2004 when I first started taking mtx until I come off it around 2014, so may have had them reduced if I'd remained on it much longer as my liver was fine throughout.
I would not be that tolerant, my appointment for the nurse specialist was a year apart and I have just phoned the appointment line and changed it to March 27 , so that will be 8 months since I saw her .
Hiya watcher56. You'll have probably realised by now there's a recurring theme! I'm following the trend in saying even if you feel to be in medically imduced remission you should really be being seen at least annually by Rheumatology, preferably by a Rheumy if not a Registrar, I don't think it's too much to ask.
You don't say but I hope your GP has signed a shared care agreement & you're having regular drug monitoring blood tests, preferably monthly or 3 monthly at least with being on regular doses of both MTX & until recently HCQ. This way at least someone is keeping a regular check on any changes, more related to white/red blood cell value changes & liver/kidney values than inflammation levels as it's considered you've achieved remission.
So, time to be a little proactive & less tolerant I think & ensure you're seen at least annually by someone, even if it's by the nurses, they can always refer to a Rheumy if they feel it's necessary. It's great that you're doing well but being on meds it's even more important a frequent eye is kept on you. You never know you may find you can reduce your MTX a little now. 25mg is quite a high dose & in your place (even though I inject 20mg!) I'd prefer to see if I could reduce it as low as I could without risking flaring. You could always go back up a dose but without trying you'll never know.
You didn't say when you were last seen but if it's now more than a year I'd either have a word with your GP, see if he can push for you to be seen, or if you have a nurse helpline number call them. I think most here would agree even if you were last seen this month another wait of 19 months to be seen again is too long.
I do have 3 monthly bloods done and if I’m more than a week late, I get a reminder text from my gp. I check my results on systmonline where rather curiously, from time time there will be an entry stating ‘rheumatology review’. Strange how this can happen without me.
I’m going to bite the bullet and ask for an early review to reduce my medication. I have a helpline appt booked for this afternoon as my mtx prescriptions have dried up according to healthcare at home, so I wouldn’t have had any left if I hadn’t missed Sunday’s dose as I have flu ( despite having the jab). I’ll ask then for an appt.
I’m feeling rather invisible at the moment, except you lovely folks replying .
Well my call back ‘sometime between 1.30 and 4.00 came at 4.50. The nurse said she’d get my prescription sent off to healthcare at home ASAP, but at 15 mg not the usual 25 mg. and get me an appointment to review how I am on that. But she said it could be a while as they are very busy. Hmmm
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