Bold(er)

Hi everybody, hope you are all getting a bit of wintry sunshine. Have just phoned Rheumatology. I had thought my appt. was on the 14th of this month & when I discovered it was actually the 27th that just seemed too far away given the changes I'm experiencing. The woman who answered got both barrels but, as it transpired, she was the receptionist not the nurse practioner! Very sympathetic though, really lovely. Possibly that was because she misheard my date of birth & thought I was in my 90s for most of the conversation!

She actually asked what I wanted to happen - I suppose asking comes free - so I said Sulfasalazine now, not on 27th, high quality imaging of my hands pronto, my back to be examined not dismissed (it's bad) and a generally proactive approach as opposed to treatment which I could have prescribed myself after half an hour's internet research. I now need to stay this bold until the nurse phones me back this afternoon. Oh, and I also want them to actively explore whether I have another form of inflammatory arthritis or whatever.

Now I've let you all know what's what I'm honour bound to fight for my rights!

Have a good day all,

Luce xx

20 Replies

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  • I hope all goes well when you get phone call

    Sou es like they need to do something fast for you to

    Feel better

    Love Karen x

  • You stay bold and tell them how you feel and what u need, its your body, Stay strong when the nurse rings u back, good luck hope you get the treatment and answer you deserve. ((hugs)) to you x

  • Yes, definitely stay bold! And if they say no to anything, make sure you get a good explanation why not, and what the alternatives are.

  • Well done you!

    Dotty x

  • Thank you so much for your encouraging replies. I've just spoken to the nurse practitioner - & I think I definitely got the right person. She understood exactly where I was coming from, especially that having previously sustained permanent damage to joints in just a matter of months I now fear for the longer-term prognosis for my hands, both of which are swollen & weak.

    I stupidly refused Sulfasalzine at the last appt. - was so stable then that I feared rocking the boat - but she's not blaming me, seemed to understand that too. I can't get an appt. before the 27th but, when I explained that I could probably write my own booklet about Sulfa by now, she said that she'd get my GP to prescribe it to me ASAP. She also said she will set up imaging of my hands (& possibly other joints - that was something I did not quite clarify.) And we did discuss the issue of exploring other forms of arthritis, we agreed that there's a fine balance between the need to keep an open mind - which is the status quo - and to actually move things forward which isn't happening. I asked for a gene test & I gather they will do one if (and only if) there is a possibility of AS once my spine has been examined. She will try to set up imaging for spine, too.

    The nurse also mentioned several times that if the Sulfa doesn't work then they will have to look at Biologics. That's not what I want, I don't want any of this, but it's as well to know they are considering that.

    Oh please people, if the medics aren't listening to you, keep pushing. I think of myself as being quite strong-minded but it's amazing how I had to psyche myself up just for today's phone call. Like a lot of people I don't feel comfortable asking for things - but you just have to these days.

    Both me and husband are now a bit tearful with relief that things are moving forward!

    All the best to you all,

    Luce xx

  • Oh, Luce, that is such good news that you have progress, and also that you found sympathetic ears. I know exactly how you feel. I spent so long feeling ignored by my previous rheumatologist, and frustrated that when I rang the helpline the nurses were sympathetic and said they would talk to the rheumatologist and then it went nowhere. My new team are so kind and so good at listening then acting, that I haven't quite adjusted yet. Last time I saw the nurse and she put so many useful things in place for me that I cried with relief all the way home.

    Dotty xx

  • Thanks Dotty! Glad to hear that things are working out for you too. I'm so bored with criticising the care I'm getting, then feeling grateful, then wondering whether that's justified - such a merry go round. But today I really felt that what I was saying hit home.

    Luce x

  • Well done for summoning up your inner bold person, and brilliant that it seems to have worked. I really need to relocate my medical care, but I have such a good rheumy that listening to everyone else's experiences the thought of ending up with a dud rheumy really frightens me. But even with my lovely rheumy I do have to push a bit, so maybe it's part of their training? Or a not so subtle way of rationing NHS services? Hope you get your Sulpha pdq. Pollyx

  • I've never needed ongoing medical care before & I think I expected to get the measure of the Rheumy dept. quite quickly - but it takes time & lots of different experiences to come to any meaningful conclusion about the service. Even after 2 years I just don't know whether they are top notch or what & changes of doctors makes it harder to have an opinion. And they need to trust me too so it's a relationship of sorts & if it's one that works out I'll never move I think!

    And everything seems like part of the rationing to me but don't get me started - that would mean that retiring or overly trusting people wouldn't get the help they need - doesn't bear thinking about.

    x

  • Well done Luce that's the spirit!

    You are very lucky to have a rheumy nurse or even a contact person you can phone. I've been emailing my rheumy via the physio all last week with updates on what's been going on - which is very little with the joints as far as I know - but rather a lot elsewhere i.e eyes, mouth, throat, tickly cough and now sores/ blisters are back my inside nose. I finally got a rather half hearted response from her this morning telling me that rheumy advises not to try having a short drug holiday or the RA may flare up and then it may be harder to achieve remission a second time round.

    The thing is that it's all second or third hand up here and I just don't think they are interested in helping me - just want to keep the status quo which is keeping me on drugs. They tell me to keep an open mind and report new symptoms but when I do they either dismiss or go into a state of panic about changes to my meds and assume that I might behave stupidly.

    I'm not a child and nor are you. We are all capable of using the internet wisely and know when things aren't right in our bodies. Someone on this site said that they switch off hearing where it comes to side effects and new symptoms, but if they leave us to our own devices then we will inevitably act unilaterally in the end if we feel we aren't getting heard or getting the support we are asking for. It's not that my rheumy is bad - he seems good to me - but he's so remote and inaccessible to me that I end up having to decide on things myself.

    Like you I feel very unsure that what I have is RA. It doesn't seem to correspond with the experiences of others here any more and I'm unsure if that's because it's gone into drug induced remission or because it may actually be something else such as SLE/ Lupus or primary Sjogrens - which I read can cause arthritis too. I've looked in my file and never had my ANA taken as far as I can make out from lab results sheets. I managed to get a doctors apt tomorrow with the other nice woman GP. She's not too knowledgable about RA but she is wise and sensible and very human and I just need someone else to join up the dots a little more for me.

    So pleased to learn you are getting that support and that your concerns and queries aren't just falling on deaf ears. I hope you can start the Sulpha asap and also get those scans done and confirm or rule out AS too. Tilda xx

  • Re. the uncertain diagnosis, I noticed that the nurse I spoke to fastened on whether I'd had a positive anti-CCP (or is it just CCP?) as an indicator of possible spondy - i.e. neg for CCP can be an indicator. But loads of people are sero-neg for all the 3 factors & still seem to have a very firm RA diagnosis so I suspect that individuals have their own pet indicator.

    She did emphasise that some cases of inflammatory arthritis never land up firmly in either RA or the Spondy category. I think I can see why you are pondering your diagnosis. There does come a point at which you need to know more especially when, as in your case, you are having to monitor your own care to quite an extent. It'd be nice to be dead sure what you are monitoring!

    And it's frustrating reading about your situation i.e. distant rheumy, no nurse etc. let alone having to navigate it all. I know you have good GPs but it must be really difficult not being able to pick up a phone & get specialist advice instantly - just as well you are so well informed but you shouldn't have to be. Agree that the disapproval of drug holiday sounds like a knee jerk reaction, there doesn't seem much evidence that it's a considered response - that would surely require more communication with you?

    I wish I'd phoned the hospital sooner - I do hesitate too long sometimes. Good luck with your GP appt.

    Luce x

  • Thanks. I am getting rather frustrated of not having a specialist of any description to speak to and I agree about the knee jerk reaction of my rheumy. The other annoying thing he does is to praise my GP always - it's like he thinks my GP can compensate for what Orkney lacks by way of a rheumatology service? I don't actually think my GP minds unduly because I think he's rather chuffed to be consultant's favouriite and is genuinely quite interested and reads up about rheumatology. But the woman I see tomorrow always reminds me that she's a generalist and doesn't know enough to advise me in depth. It is frustrating although she's a great GP. But I tried to explain to her about having a negative anti-CCP but a positive RF and what I'd read but she just didn't seem to know what I was talking about and just said that if she took my ESR and my clinical symptoms and positive RF (but only a low positive) she would think to herself "hmm possible RA?" and refer me. But I'm way beyond that kind of speculation now in my rheumy knowledge and I wasn't questioning whether all was normal - just whether this could be some other type of inflammatory arthritis.

    Re the negative anti-CCP. Is it common on here to have one? I thought I was pretty unusual in having a negative one with a diagnosis of RA? I did read that if you have a positive RF and a negative anti-CCP it could be more of an indicator re spondyloarthritis - but that RA should not be ruled out even if everything was negative. I suppose it just makes it harder to convince ourselves that we have RA if we lack the classic signs and have other niggles hanging over us? TTx

  • Ah, I thought that a diagnosis of sero-negative RA could only be made if Rheumatoid Factor, anti-CCP and ANA were ALL negative. And there seem to be lots of sero-neg people on here so just made assumptions. Perhaps you don't need 3 negs for that diagnosis?

    It's hard to properly get an angle on somebody else's condition on a forum whilst battling your own so I didn't completely understand why you were pursuing other lines of enquiry. But I think I totally get it now. I am at least convinced that I have either RA or some spondy but I can see where you are going with possibilities such as primary Sjogrens.

    Luce x

  • Just checked NRAS site & it says that either Rheumatoid Factor or anti-CCP need to be positive for a seropositive diagnosis & that anti-CCP is slightly more indicative of RA than positive RF. So I gather that both do need to be negative for seronegative. (No mention of ANA on that site.)

  • Yes Luce I assumed same as you - that all have to be negative for a sero neg diagnosis but then I found out that lots of people here are negative for RF but not for anti-CCP. Whereas I'm the other way around with not even a very strong positive for RF. And when I looked this up it said that this made likelihood of one of the spondyloarthritis's more likely. I am just off to see nice woman G{ with a nose like a lopsided cherry tomato that is hot and painful to the touch and spots everywhere!

    On the plus side my glasses have been sorted out by the optician who was very kind indeed! Tilda x

  • Hi luce stay strong sometimes we have to fight but seem like an uphill struggle at times!!!!!!!!!!!. Hope you get your Sulphasalazine very soon xx

  • Thank you miss - I enjoyed the struggle today sort of - just took a fair bit of emotional energy somehow.

    Luce x

  • Hi i so know were your coming from all i can say thank the lord we have this sit. Its a god send xx

  • Well done, that was amazing strength you showed but it makes me sad that people with long term conditions have to fight their own cause so often and repeatedly. Glad u r now getting the help you need xx

  • Thanks Allanah! I think I had to screw up my resolve just to do what lots of sensible folk do without even thinking about it! It's not the asking bit that worries me so much, I've decided, as the deflated feeling that lingers is they just don't get what I'm on about or say 'no' to everything.

    Luce x

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