first rheumy appointment this morning

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    I have a bloods record book for the injected meth: that details possible side effects, risks one faces whilst on meth and it explains the blood tests and what they measure. I have moved to monthly tests now, and the meth nurse completes my book when I have the injection. This is the routine we have and it works. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hi Lucy

    Just wondering how you are today and how it's going with the new pills?

    Thinking of you.

    Love Tilly x
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -0001, 00:00
    hi tilly

    how are you today? day three on the tablets and so far so good :) urine is changing colour already tho,didnt expect it to happen on just one a day,im not so scared of the tablets now but will be next week when i have to up them but will worry about it then :)

    had a really bad painful day yesterday,probably the worst yet but it has eased off slightly today, is that what its like? my hands are getting worse now but that seems to have come on really fast,my knuckles are bright red like ive punched something lol

    got next rheumy appointment through already which is november 23rd so not that long to wait really

    i know what you mean about friends,never know what to expect from them,my mum has hardly mentioned it and didnt say much on saturday when i rang her with the diagnosis but last night she rang me and talked about it for over an hour with me and said people dont understand what pain is like for someone else, she cheered me up being there for me cos apart from here i have felt a bit on my own if that makes sense.

    lucy x x
  • frogmorton
    frogmorton Member Posts: 30,375
    edited 30. Nov -0001, 00:00
    Oh lucy

    I am pleased!! You are doing really well :D


    Good for you.

    My daughters are 15 a5 and nearly 13 - bet you can tell me a thing or two :shock: Please dont - I'm scared as it is :wink:

    You enjoy your **** wine and tablets :lol:

    Love

    Toni xx
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -0001, 00:00
    hi toni

    thanks lol i know smoking is bad for me and shouldnt do it but....... :)

    i could tell you lots of stories about my daughter but wont cos dont want to scare you anymore then you already are ,she isnt that bad but just tends to live in her own world,its her life and she has to live it but she does hurt me sometimes and still havent heard from her,she left home in may and she rang and text every day until this week when i havent heard a thing from her, are yours good and do they listen to you?

    lucy x x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    There is nothing to be scared of with upping the tablets. Bear in mind that they will (hopefully) help the quality of your life to improve, that is why you are taking them. They should help you to feel better and that is a good thing. I have been dutifully swallowing six a day for years now and they do keep the psoriasis at bay, for the most part. That makes them worthwhile in my view. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hi Lucy

    I’m fine today thanks!

    Glad you are doing well so far on the tabs (apart from the dayglo urine!). I’m sure you will find that you get less concerned about the tabs as you get used to taking them and I think your approach of not thinking about upping the dose till you get there is a healthy one.

    Sorry you had such a bad day yesterday but pleased that it is slightly easier for you today. In my experience inflammation can be very variable – which is why I think it’s often hard for people to understand (for example why, one day, you appear to be fine, and the next day you are struggling to walk).

    Have you tried Ibuleve Max Strength Gel? You have to be a bit careful with it if you are also taking anti-inflammatories or have other medical conditions and obviously you would have to be really careful with it re the psoriasis (best to check with the pharmacist) but I find it really helpful for short term relief on specific joints. It doesn’t take the pain away completely, but I do find it helps (I get through tubes at a time at the moment). Only downside is that it’s very sticky so, if you use it on wrists or elbows, covering them with tubigrip afterwards is good idea. The Max Strength stuff is behind the counter in the chemist, so you have to ask for it. There are other anti-inflamm gels around but I haven’t found that they work for me.

    Glad you know when your next rheumy appt is and that it is not too long to wait.

    So pleased you have now had a long chat with your Mum about things so you don’t feel so on your own. Makes a huge difference doesn't it?

    Thinking of you.

    Love Tilly x
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -0001, 00:00
    hi tilly

    hope you had a good day,the sun was out here today which makes things seem a lot better and looks like tomorrow is going to be even nicer :)

    spoke to my mum again earlier and she is now going to go to the drs cos she thinks she may have got arthritis from me !!!!!!! i didnt mean to laugh but i did,that would be something for the guiness book of records wouldnt it :)

    i have never tried ibuleve gel or any others,i never thought about it before but its a very good idea,i work in a pharmacy and dispense it most days so i should of really but i will get some,thank you for the tip, what meds are you on? the rheumy told me to carry on with the anti imflammatories so the gel will be fine,any relief for my feet would be great :) x x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hi Lucy

    Yes, the sun was out here today too which, as you say, makes you feel a lot brighter doesn’t it? I’ve had a good day today thanks – pottered in the garden for a while this afternoon which I really enjoyed.

    What your mum said did make me chuckle! As you say, that would very definitely be a first!!!!

    Do give the Ibuleve Max Strength a go – you are meant to use it sparingly (particularly if taking other anti inflamms) but I get through tubes at a time at the moment. So much so that I’m using different pharmacies in case they say they won’t sell me any more! In Boots they will only sell one tube at a time so I do have to shop around a bit! No wonder you need relief for your feet if you are working in a pharmacy on your feet all day! Hope you find it helps you some.

    In terms of my meds, I have recently come off Humira (anti-tnf) and, having just re-started on methotrexate and am building up the dose slowly and waiting for it to take effect. Meantime I am propping myself up with Diclofenac (anti inflamm) and prednisolone which is working reasonably well all things considered.

    Hope you have a good evening Lucy.

    Love Tilly x
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -0001, 00:00
    hi tilly

    how are you today? havent had chance to come on until now,went out this afternoon as didnt feel to bad earlier,felt awful this morning, i slept until the alarm went off at 7am and i havent done that for months,must have been in a very deep sleep and not used to it,i cant blame the tablets i dont think but it took me hours to feel properly awake,am having a glass of wine but it tastes funny lol cant blame everything on the tablets even tho its easy to i suppose.

    why did you come off the anti tnf's wernt they working? do you have in inject them or can you get them in tablet form? how are you doing on the mtx? i got some ibeleve gel today and have rubbed it into my feet and knuckles, i get 20% discount from work so got it a bit cheaper :) how long have you had arthritis and how did it start? hope you dont mind me asking that?

    love lucy x x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hi Lucy

    Good to hear from you!

    Re your questions - I am very happy to answer them, but I will send you my reply via PM rather than boring these lovely people on here some of whom have heard it before!

    If you haven't sussed PMs yet - you just click on the "your messages" tab above and it works basically like email.

    Chat soon,

    Love Tilly xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Morning lucy145, is it today that you start one in the morning and one in the evening? I think it's a week since you began, so that would be about right! I hope you are doing OK. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -0001, 00:00
    hi DD

    hope you are ok ? wow you got a great memory :) and yes your right i take 2 sulpha starting today,ive taken one and will take the next one after dinner later, are we meant to leave so many hours between doses? ive had no side effects on 1 a day and hoping not to now either.

    had one of my blood test results back yesterday and my RF has gone up to 64, it was 51 the end of august,got told the consultant wants to discuss it with me in november, just waiting for the anti ccp test result now.

    hope you are having a good day and thank you for remembering me :)


    love lucy x x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Hi, I try to keep at least 12 hours between doses, 'cos that seems sensible, on the odd day I do forget to take the morning dose, so if I don't remember until, say, 3pm then I don't bother and just take the evening ones as usual. I am sure it will all go fine, lucy, don't fret. Wash it down with a nice glass of white/red grape juice, just because you can! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -0001, 00:00
    hi DD

    lol i will be washing the sulpha down with a nice cold glass of white grape juice tonight,i saved it especially :) i didnt take the first dose until 1pm so will take the second one as late as possible tonight to spread them out a bit,i dont eat much for breakfast so didnt want to take it then but will have to next week when i go up to 3 a day,what times do you take yours? love lucy xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    It varies. Usually about 8am, then again at 8pm with dinner. I always have something to eat for breakfast despite being never hungry before about 11: although I am very gung-ho (and sometimes careless in forgetting) about meds, even I recognise that inflicting handfuls of ghastly stuff on an empty stomach is not a good idea. I think I am supposed to take the stomach protector first, then eat 30 minutes later and then do the rest, but I don't: I follow the hospital approach, which is to give you everything in one go as they don't have time to follow the rules! So brekkie, then swallow . ummmmm. . working it out . . as from tomorrow 11 tablets. Sounds about right. I manage to do those without the chilled glass of grape juice tho! :D
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hi Lucy

    Have been thinking of you today increasing your sulpha and hoping all is still well. Good thinking about washing it down with wine! Makes it feel a bit easier doesn't it!

    Love Tilly xxx
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -0001, 00:00
    lol at chilled grape juice,i wont be doing that in the mornings from next week tho that wouldnt be good at all but it does taste better then taking it with water :)

    11 tablets daily? is that different tablets or some of the same but with more then one dose,i suppose it is something i will have to get used to from now on,been taking thyroxine for over 5yrs now but thats tiny so no problem but i must say the sulpha is getting easier to swollow .....even with water :) it says on the side effects that you may lose your appetite, i have been starving all week lol x x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Oh that's 11 in the morning, and it includes lots of variety so I don't get bored counting them out! In the evening it is only a disappointing 5. Such a let down after the early excitement! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -0001, 00:00
    lol you are making me laugh and its so good you add humour to them :) i hope you have got lots of different coloured tablets and not just boring white ones :P you have cheered me up now DD :) xx
  • frogmorton
    frogmorton Member Posts: 30,375
    edited 30. Nov -0001, 00:00
    Hi lucy

    I am so glad you are doing so well and laughing again :)

    Let's hope DD doesn't have a dog or she might take one of it's worm tablets by mistake!!!

    Hey DD that's more tablets than fingers :shock:

    Love

    Toni xx
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -0001, 00:00
    lol im hoping DD hasnt got a dog cos dont think the worm tablets will do a lot of good :?

    well both sulpha tablets are now taken,i was nervous with the 2nd one but feel ok at the moment.

    thank you everyone for your kind msgs :)

    love lucy x x

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