Seeing the specialist nurse today

Hi all, I've not written much lately as to be honest I've been concentrating on my diet and fitness. I do look in regularly but find I don't really have the concentration to get too involved. I'm thinking this may be down to the methotrexate as I used to like nothing better than a good blog. Anyway today I've got my follow up with the specialist nurse so I'm compiling a little list of questions which I'm hoping she won't be too busy to cover. For the most part I think the methotrexate is helping. I'm not in the excrutiating pain that I was before treatment and just have some mild stiffness in my fingers and wrist and ocasional hip and foot discomfort. I'm still shedding hair but no noticeable baldness...thank God! Also still geting troublesome sores in my nostrils. My ESR was at 28 when measured last week. At my last visit I was given a steroid injection and advised that my methotrexate may need increasing at this visit. I'm wondering why I'm on monotherapy rather than combination so I'm going to ask about this. I'm also wondering what expectation should be. As I'm tolerating 15mg mtx really well I wonder if it's best to leave well alone or are the ESR and niggles an indication that damage is still taking place.? I think my fear is that the dose will increase and I'll have awful side effects and be worse off. I'm also going to ask for referrral to a podiatrist as I've been informed I have flat feet but this has not been addressed. Also I've read often on here that other people are sent for xrays or scans at the beginning of treatment but this has not been done and I wonder why? So my appointment is at 2.30 today and it'll be interesting to see how I get on with my concerns. I usually feel so hurried that I don't get chance to ask questions but I'll do my best. One last point...I was diagnosed by the rheumatologist but every appointment since has been with the nurse. Is this normal and how often should we expect/hope to be followed up by the consultant?

I hope you are all well and thanks for the chance to get my thoughts together. At least I can use this as the basis for my list now lol.

Paula x

31 Replies

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  • Hi Paula-

    Noticed you hadn't been around much these last few weeks.

    Like you I am monotherapy. Albeit that I am on injection form of methotrexate.

    My treatment has been suspended again whilst I have a gastrointestinal examination with a scope.

    That is booked for Friday.

    I was scanned on my 1st visit to the clinic. I think I was only scanned because my consultant is trained in ultrasound. She also had the machine in the clinic.

    Good luck with your appt today. Also ask if you could be considered for injection form. You have less effects on your mouth and throat.

    The injections are not painful. I do them at the weekend. I still feel tired but was getting good results too.

    Best regards

    Hugs Carole

  • Hi Carole, I hope you're ok and all your tests turn out well x I'll ask about the injections but to be honest I don't know if my side effects are bad enough to warrant them. I'm just gonna sort my hair...whats left of it...before I go so catch up later x

  • Hi Paula,good luck with your appt today. You don't always see the dr,but i can tell you he will be kept abreast of your treatment,going off how my nurse/dr look after me.

    Just be aware that it won't be only the hair on your head that you will lose!!.

    LOve sylvia.xxx

  • OMG Sylvi!! are we talking lady gardens? That's just made my day lol

  • Yes paula,look at one of my old blogs about "hairy armpits" and my friend you will wet yourself laughing. Sylvi.xx

  • Its decembers 22th blog if you want a real laugh. xx

  • I love the phrase lady's gardens. Paula, Sylvia is naughty as you. Already know...:-) x

  • Hi Paula. Just to say that at this stage I was same as you although ESR was double yours. The rheumy told my GP that I either needed to get up to 20mgs MTX or add in another DMARD. GP and I decided on the latter and on his advice I chose Hydroxichloraquine because i'd already tried Sulpha and had a bad reaction to it prior to official diagnosis. I personally this Hydroxy and MTX combined have worked well on my RA - it seems to me that this combination has made a big difference and the Hydroxy seems to make the MTX work better for me somehow. The drawback was that when I has a flare, before the Hudroxy had properly kicked in - my rheumy pushed me up to 17.5 and I became really sick with that one extra pill. I strongly believe this was because of the combined drugs because earlier on I'd taken 17.5 on its own and been fine (no sickness) but my GP lowered me again because of raised liver.

    So now I've just had my first shot of MTX by injection and GP told me that the plan is to take me off Hydroxy - am now on lowest dose of 200mg. I'm not happy about this because when I stopped the Hydroxy for a week the aches and stiffness worsened and my ESR was back up to 54. I guess this is the trouble with not having a rheumy nurse - infornation gets to my consultant a week later and by the time he replies things have usually changed again. GPs aren't specialist enough and have too many other things to think about always. If I were you I'd angle for a 2nd DMARD to be introduced now because ESR of 28 may be normal for you but nighling aches and pains could well mean that your RA is still active. The combination currently on seems to be the one most favoured for early RA as explained bu a consultant on this site. Both drugs have sufficiently different patterns and side effects to mean its easy to remember to take them both and easy to tell side effects apart. I have none to either drug presently but have only just had my first MTX jab of course so we will see!

    Good luck. Tilda xxx

  • I hope the mtx jab does it's stuff for you Tilda. How did you find it?

  • I blogged about it - it was absolutely fine! Tilda x

  • I'll have a scout through the posts today and read all about it. Glad it worked out for you and hope you continue to improve x

  • Ps both my lady's garden and my head hair are flourishing for what it's worth!

  • Many congratulations! I'm off to take a look in the mirror. What's Sylvi gone & done??

  • I haven't done anything really!!!!!!!!

  • Nice to know Tilda, I'm afraid both my gardens need a little baby bio :-(

  • Oh dear I was dreading mine doing so too but they don't although my hair has lightened quite a lot. I thought it was just greying but according to my hair dresser it's bleached so I think that must be the Hydroxy. I'm very lucky not to get alopecia because I've had it twice in my life and been a baldy twice so was really worried about this aspect of MTX. I do use lots of extra Elvive conditioner when I wash it and it is much dryer now so I only wash it once a week (I'm talking about my head hair of course before you all decide to boycott me forever!) Tilda xx

  • Never, but if you bath or shower you wash it anyway!!!///~~

  • Yes, all present & correct for now. Paula I'll be interested to know what the nurse says about the thinking behind monotherapy as I'm just on MTX too but it doesn't seem to be doing much (17.5mg).

    Also, re. ESR, mine plummeted immediately after steroid injections & tablets - from 76 to 4 & stayed under 15 while I was on steroids. But it's creeping up now that I've stopped taking steroids so I wonder whether the injections alone also bring it down? I know that's good in itself but not quite the same as inflammation going and staying gone.

    Good luck with appointment,

    Christina xx

  • Hi Christina, I had a steroid jab at my last appointment 2 months ago so it'll be interesting to see if my esr starts to rise now it's worn off. I suppose that'll show if the 15mg mtx is really enough. Sorry I didn't get around to the monotherapy versus combination therapy question as my dose was not altered. x

  • We ladies do quite often forget that there are gentlemen reading these items as well as ourselves! That said we do have a laugh on this site.

    I hope the visit went well for you Paula, as your visit should have been earlier than this message!

  • Thanks Georje, maybe the gentlemen have similar topiary problems? I won't ask for a show of hands though :-)

  • your perfectly fine ladies ... no gentleman read these items ... haha ... :)

  • Paula i looking forward to finding out how you got today. Hope it went well for you.xxx

  • Thanks Sylvi x

  • Hi Paula,

    Bit late commenting on this but hope all went well for you, I'm sure you'll let us know. As for Sylvi, I'm off to read that blg and have a giggle!

    Mary x

  • Thanks for all your lovely replies. As usual the clinic was busy and running late but the nurse was very nice, I've seen her three times now so building a bit of a rapport. She was very happy with my bloods and said an esr of 28 was nothing to worry about as they look at the whole picture. I said I feel very well and told her about the niggles I'm having. She said on a scale of 1-100, 100 being worst I've been, where would I put myself and I said about 10 as I feel very well. All my joints were checked and I'm being referred to the "appliance dept" to be fitted for shoe inserts to help my feet. I'm also going to stay on the 15mg mtx as I'm responding so well :-) We discussed the hair thinning and she advised getting some vitamins from the health shop which are specifically for hair and nails so I'll look into that. I was advised that if the hairloss becomes worse such as finding it on my pillow in the morning I should let them know and my meds could be reviewed. To be honest the relief I've had from mtx has been so good I can live with a little thinning. I confirmed that I should have the flu jab and pneumo jab as I have asthma and that if I ever go on anti biotics I should still take my mtx. The only time to miss the mtx is if the antibiotic doesn't work and a second dose is needed. The mtx should then be started the following week at the usual dose. My sore nose is possibly due to dryness and I've been advised to rub some vaseline in my nostrils..urgh but worth a try. If that doesn't solve it then I need to see the GP. My next appointment is in 3 months but if my condition deteriorates I can ring for an earlier appointment. As for everything else I'm afraid I ran out of time and nerve lol. All in all I felt the appointment went well and I feel very thankful for the existance of Dmards! It always feels strange sitting in the waiting area as the average age of patients appears to be about 75! Maybe that's a positive thing though :-)

    Paula x

  • It sounds like a very positive appointment to me Paula - well done. At least your aged fellow patients will make you feel like a spring chicken which can only be a good thing too. I'm so pleased you're down to a ten now as I remember how bad things were when you were waiting endlessly to be diagnosed and put on DMARDs. I agree these drugs are pretty wonderful aren't they? I was at popmobility class again tonight and the only thing I struggle with now is leaning back on my wrists and touching my toes from a sitting down position which I just can't do - my outer hips, shoulders and chest ache too much which is weird but guess I'm still not quite as slim or fit as I'd like to be?! The class is run by a woman who is 70 - she's amazing! Tilda x

  • Well done paula i'm pleased for you,i'm a youngster compared to some of them that come into clinic. I know i'm middled aged,but i like to keep my feelings on age as young as i can,some days i feel ninety other days well the other days we'll pass. Until xmas i was on 20mg of mtx in injectable form and i was doing very well thank you very much.Since the chest infection i haven't been right since.

    Love sylvia.xxx

  • Hi paula just a quickie as I'm in work! But i have only seen a consultant once since last November and a specialist nurse and a registrar. I havn't seen anyone since May and my next 2 appts have been cancelled until Mar 13 xxx

  • Hi Paula,

    Sounds like you had a good appointment with the nurse and you managed to ask lots of questions. Glad things are going really well for you at the mo, long may it continue.

    Mary x

  • Glad all went well for you Paula. You all have made me laugh so much when feeling all fatigued out today. Thanks all x keep well x off to read sylvia s blog on gardening !! X

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