Grrr!

Hi all,

read thru' blogs this morning & thought of moving to Spain 'cos the wet & gloomy weather certainly seems to make RA worse & I'm feeling it too.

Yesterday I got a second letter from my Rheumatologist (provisionally diagnosed with Psoriatic Arthritis last week.) First off, the blood tests results depressed me - I knew what they were already but seeing them on paper is worse somehow, makes it harder to ignore the nasty things that are happening below the surface while I feel superficially okay-ish on Prednisolone high. ('Tho I do feel a bit strange & sleep is shallow.)

Then I realised that the Rheumatologist who so impressed me - she was caring, she was kind - had written a work of fiction with a lot of loose ends to boot. For example she'd told me I'd hear from the hospital about seeing Rheumy nurse for first MTX dose this week but no mention of that in letter, it just implied I'd get MTX from my GP. The letter also said she'd explained the possible side effects of Methotrexate to me & given me a leaflet about it. That's rubbish! Noone's told me diddley squat about medication. No mention, either, of the Dermatology appt. she said she'd make to further investigate the diagnosis of Psoriatic Arthritis or of completing the aspiration of my left knee which did not work & which she said needed ultrasound guidance.

Phoned GP practice and had to wait till this morning for a GP to phone me back. I went over all the things in the letter that were wrong - there were 5 main things - & he phoned the hospital. Then he phoned me back & said there were a lot of problems with this Rheumy's clinics (she's a Locum who has left now) & they will therefore try to bring forward my next appt. with the new Rheumy to get things on a more even keel. (And I'll get MTX from GP pharmacy today & read about it on the 'net.)

However, I'm now doubting the diagnosis - yes, it was provisional, but obviously seems that little bit more provisional now. And basically I'm starting MTX on Sunday without anything with a pulse ever having told me what it's all about. Damn good job I can read! But, you know, the human touch counts for a lot.

Thank goodness for this group. I'm so pleased for the person who got her promotion & totally understand .... (was it Creaky??) loving having her family around her. I find I just want to be around people I care about at the moment & am scared stiff of alienating them by being obsessed with what is happening to me. Am working on that one!

Hope everyone has a great weekend, Christina xx

12 Replies

oldestnewest
  • Try and keep positive and busy. Obviously you have read up about methotrexate and there is a lot of info on here re it too, Nras do some good publications on it and the other drugs used.

    If I can help in any way feel free to message me.

    A lot of people use methotrexate and get very good results, as a new user I feel bad you have had no personal input. It is a once Weekly only medication , and you should have been co prescibed folic acid to minimise side risk of potential side effects.

  • Thanks so much, summer.

    Yes, the GP I spoke to referred me to a site for leaflet on Methotrexate & peoples' blogs have been an education about it of course. And I do have the Folic Acid as well as the MTX now & I won't have any real problems with taking it or understanding it.

    If I'm honest the problem I have is in coming to terms with inflammatory arthritis after a lifetime of being strong as an ox. And so far much of the contact with GPs & the Rheumatologist has been a bit patronising, dismissive or downright farcical rather than respectful or helpful. Hey ho! I can cope with such things but I just don't think it's right. I'm hoping that I will forge an okay relationship with someone out there - GP or the new Rheumy - especially helpful if things go wrong, I should thinkl I'll muddle through, if necessary, but that doesn't seem anywhere near good enough.

    Christina x

  • It is best if you have someone that you can have a good relationship with health professional wise because it is a daunting thing to deal with. I took me over a year to come to terms with having inflammatory arthritis, but with the right medication it is possible to have a good quality of life x

  • Christina I know how you feel, at my first consult mine told me she had no time to answer any questions, plus there is no Rheummy nurse. Luckily I too was able to look things up on the Internet and also asked a few questions on the NRAS forum. I've been on MTX since late March and it seems to be working quite well. I don't have RA as bad as some of the people on here, but it was still a shock to the system, my hands are definitely the worst affected. I hope the MTX works for you.

    Mary

  • Thanks Mary, it's especially encouraging to hear about MTX working well. My left hand is weak, the nobbly bit of the wrist is enlarged and driving is much harder than it was, as are lots of things. I think my hand is worth a second look but it's my knees that get the doctors going - they are huge! I just think this is short-sighted as hands are vital - altho' I can barely walk at times my knees don't interrupt normal life as much as just one bad hand does. I would be interested to hear about the ways in which the MTX has improved things for you. All the best, Christina x

  • Just a thought Christina - they may be focusing on the knee so much because it is weight bearing and if it is affecting your normal walk and posture may then have a knock-on effect on spine, ankles etc later on. It's a bit like seeing to the foundations of a building first to ensure stability.

    Have you asked to be referred to the rheumy OT at all? They can make a number of different splints to help with your hand and wrist. I was given the standard elastic one but also a molded lattice one for night resting and a softer neoprene type one for driving.

    It's also worth asking to see the rheumy physio also as they are much more switched on to our needs than the general OT and Physios.

    Judy. xxx

    ps - It is me that blogged about family. I have experienced similar worries about 'going on about it too much' but close family and friends are what you need when you are mourning for the loss of the future you had imagined for yourself.

    There have been plenty of times when I felt they didn't understand me but when I am really, really struggling and can communicate effectively to them, they are there and they respond. and the future is not so bleak. xx

  • Lots of helpful things, thanks creaky. 'mourning for the loss of the future you had imagined for yourself' that says it all but it doesn't make me feel sad, it is how it is & when I come to terms with that I'll be able to move forward, the same for all of us, I'm sure. Thanks x

  • Hello Feather, as much as i don't like dissing the medical profession, i have to say that i agree. I have been taken in by my sweet sensitive nurse who promised me a steroid injection and i haven't heard anything since. On a more serious note i also wonder intermittingly do they actually know if i really have ra and if they are treating it properly. I reckon the blood results and symptons are what they base their diagnosis on. Thank goodness that you have got a good GP who takes the time to investigate for you.

  • Yep, totally agree. Don't like dissing for the sake of it - these people get paid well but the pressure must be something else & often do a very good job. However, I reckon I could do the initial diagnosis myself now, thanks to Internet etc. and what I want is serious expertise to consider & double check! I'm an optimist & therefore reckon next Rheumy will be just fine & I may yet get to see one individual GP at the local practice more than three times in 8 years!

  • Hang on in there and don't be afraid to tell them that you have discovered through this forum that these things are available and can they make the necessary referrals.

    Rotten that you can't have the same GP though as they are the ones who can really see the changes as time goes on.

  • Even after several years I still have days where i'msure it was all a big mistake. This is a big thing to come to terms with, so give yourself time, and try not to expect everything to be sorted in days or weeks. This disease seems to take forever to get under control. I think they may be focusing more on your knees because if they're swollen with synovial fluid then that's a big reservoir of inflammation to get under control.

    Anyway, MTX gave me my life back, so scary drug tho' it is I love it (well as much as you can love something that makes you want to throw up from time to time). I was virtually bedridden before, and now can do most things most of the time. And the more you know about this disease, the better able you are to ask questions and even (sometimes) get answers from the medical professions. Good luck. Polly

  • I agree with you and the many posters here Feather. I have had some top down stuff since I got this RA but am very lucky to have one main GP who is brilliant and another who is really sympathetic so I tend to alter between the two depending on whether I want brisk common sense from the main guy or compassion and a large splash of humour from the woman!

    Although I've only met him three times, once on a telemed screen, my rheumy does try to be inclusive and on a level with me but it troubles me when he does this too because I think "if it's my decision to take MTX or Hydroxy or rise a dose does that mean I'm running my own healthcare plan with him just advising me from the sidelines? In which case why is he earning about £150 an hour while I'm skint with a disease I've self diagnosed?" - it makes me feel vaguely uneasy and alarmed all the time because I want confident diagnosing and treating. But I'm sure he wouldn't let me take MTX if he wasn't convinced I had to because he seems cautious and considered by nature.

    But the truth of it is, as he told me on my telemed, diagnosing and treating inflammatory arthritis is a very complex business indeed. The last time we met face to face was in November when he told me that "it doesn't matter that much what name we give this - it is inflammatory arthritis, in my opinion it's RA but in a sense that's not so important. What matters is how we treat it - and that requires a DMARD."

    Knowing much more now about RA I can see absolutely what he means and I respect him greatly for not being patronising or bossy with me even though it also makes me feel rather uncertain and unconfident about taking MTX. He gave me a leaflet with the MTX and that was all - but he knew that I was getting myself informed and I voiced my worries about MTX to him there and then. He said it's prescribed as the first line DMARD because it is generally well-tolerated and by far the most generally effective drug for inflammatory arthritis.

    My late mum had a close friend who was a consultant dermatologist and she tells me that MTX was the main drug she prescribed for Psoriatic Arthritis so I think you should just get on it as soon as you can because you obviously do have some form of inflammatory arthritis even if it's not PA, and it's therefore pretty important that you get on with finding a DMARD that works asap. Good luck and please try and badger to get one good GP who you can talk to anytime because it really makes a big difference as they are the constant professionals we turn to when in a muddle or needing advice.Tilda xx

You may also like...