Rheumy Appts How often?

Hi ya, how come you all sound like you get to see your nurses and Rheumy regularly? I saw my Rheumy in March when I told him I stopped taking MTX because I was still in pain and seeing no benefits, He said that was stupid and after reading your blogs realise I was not alone in the way I feel, and he wanted to prescribe Leflumide but after the nurse took my bp i was told not to start. I have seen my gp once who prescribed bp meds that was 7 weeks ago, I have not seen anyone since then and have been in so much pain and very tired and weary, I wrote to gp since she didn't want to see me explaining how I was feeling; she wrote back saying that she had written to Rheumy for an earlier appt, I am still waiting, I have phoned the Rheumy sec and left msg's but still no joy, people keep saying you must speak to your Gp? I have tried, I still have not got my voice back properly after suffering 9 days of complete silence. The steriod injection is now weary off and the joints are taking longer to get mobile everyday, I have never seen a physio, ot or podiatrist. I was diagnosed 18mths ago. On the up side I am not so depressed, I think reading your blogs has helped me realise that even with all the meds painfree is a myth. real name Carol.

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  • Oh carole you poor thing,contact your rheumy again and tell them how you feel and say you want to be seen. Depression is a by product of ra i'm afraid. Make an appointment to see your dr and explain to them how you are feeling. i am sending cyber hugs for you as you sound like you need them. xxxx

  • Hi Sylvie, Well contacted the Sec she said he has put me on the waiting list, I asked how long will that take? reasonable question I thought! she said you are on a waiting list! I then asked if talking to the Nurse might be helpful? she said you have an appt in July that should be soon enough!...How hard is it? So I guess 4 months without treatment is ok? Thanks for cyber hugs, they kindly don't hurt.

    Hope you feeling better, I can remember crying all night with pain in my knees, my poor husband didn't really know what to do. Bless Him.

  • Well I for one share your feeling of frustration 100% Carol. I do live on an island off Scotland so I suppose this is to be expected for me but what annoys me is that I can only access my rheumy via my GP or the physio who acts in place of a rheumy nurse. If you have read blogs on here then you may be aware that I've just been seen for the first time since diagnosis 7 months ago by my rheumy on a telemed screen with the physio doing the examining for him. I am feeling more and more irate about the whole experience but I think that has as much to do with the physio's attitude towards me as it has to do with telemed.

    My GP advised me to write to the medical director of our health board which I did and had an apology saying it was not acceptable to be reviewed after 7 months when on MTX. I'm hoping he will see me again as he said he would at the end of July in about 6 weeks time but seeing's believing!

    I think you need to just insist your GP sees you and also try and contact your nurse and be really pushy - it's the only way to get taken seriously I'm afraid. Also write to your medical director on your local health board and perhaps your MP too. Good luck, TTx

  • Thank you, yes I have been reading you blogs and can see how frustrating it is for all of us who are told we have a disease that if not treated will disable us for life, so they insist you take meds with sideeffects that you didn't ask for then leave you to make all the moves after that! strange that isn't it. I have done alot of reading and realise they are far from the NICE guidelines. I am taking my sister with me to my next appointment which is with the nurse in July, she will speak up for me as I just want to cry like an idiot when I know what should be said. as for my GP? great if I can get her to see me, but we have this telephone system where if you can get through the receptionist she will get the GP to call you, then when she does(and I wrote and told them I had no voice)she can't hear what I am saying properly and prescribes repeat meds instead. I saw a nurse at the practice because my throat was so sore after 4 weeks, she took my bp, and it was normal(totally out of the ordinary for me) this the GP used as a guide to the Rheumy saying that my BP was now normal, I'm not a hypochondriac but I take my BP everyday and its rarely below 170/95! Fighting is hard work, I feel weary enough. but thanks for taking time to reply, you are getting better weather up there in the isles, Norfolk has been very dull, though right now it's bright and the sun is shinning, I'll go attempt squeezing a few pegs and hopefully the linen will dry.

  • So sorry, I wouldn't even bother begging for another appointment, find another rheumy dr in your area, or not if you don't mind travelling, ring up your gp secretary and ask them to write to that dr asking for a appointment. As long as their on the Nhs your entitled to see them. Get a second opinion. It's a shame you haven't got access to your rheumy nurses that could probably help with steroid injections in the meantime. Also ring your rheumy dr secretary direct. Keep in touch and take care x

  • I last saw my rheumy in January, and next appointment with her registrar rather than her is in ;uly. I've seen the rheumy nurse about once a year and have never managed to get an appointment with physio or OT despite this being promised. I was supposed to see nurse today for appt that was postponed from a coupleof months ago, but have just been told she's off sick. And I'm in London and have no better a service than you in remote parts of Scotland.

    So most of the care I get is a bit virtual as I leave messages and questions with the rheumy secretary and phone back for answers and then relay them to my GP. It's deeply frustrating, but I think there's a real lack of specialists. Which I can sort of understand as rheumatology is probably not top choice for young students.

    However just had small sucess in seeing the podiatrist who is now gping to make me some custom insoles that I hope will make a big difference.

    So I don't think that it's unusual that you've not seen people - which doesn't mean it's acceptable either so keep nagging. Polly

  • I think we all need a PARTY Cheers all........

  • Yeah a party would be spot on! I went to one on Saturday night and danced the night away once the Naproxen had kicked in - it was such a tonic!

    I think it's important that you find someone you can talk to in the health team about what's happening to you - whether it's your GP, a rheumy nurse, a physio, an OT or your consultant -.it doesn't matter which of these but I think you need to be proactive in locating someone.

    My physio has just really calmed me down today and she's not the obvious person for this job - but I find I can really talk to her and she's just friendly and professional and gives me some perspective which is what I need so I don't combust! Push for something better Caggy - it's important! TTx

  • I keep trying to find the right one, The Rheumy nurse I had to see before I left work was really difficult with me, it didn't seem to make any difference that I was in pain. At one time I rang for help and she said she was recording this call! and I thought why? I was only asking for help with pain, she said she had already told me to see the gp, which I had done and was given tablets that put my BP up and had to come off them. my Rheumy said he would let me have another Nurse but each time i ring it's always the other one, so I feel really stuck. The Sun is still shinning and my washing is dry Hallelujah!

  • Oh that's so similar to me Caggy it's making me feel less alone at least. I felt so trapped this morning because if I email the physio God woman I get an auto reply saying she's on leave until Monday. And my GP is on holiday for two weeks so my own sweet physio was a godsend today. That's all I needed - someone kindly and professional and reassuring and I feel loads better. But I know exactly how it feels to have hurdles put in the way of every option in the form of unsympathetic receptionists, or rheumy nurses or whatever. I think the easiest option might be to find yourself a new GP who will refer you for physio and OT and support you in your RA journey instead of getting the wrong idea on the phone? TTx

  • Yes that sounds good, I might just ask the surgery how I go about getting a physio or ot as my wrists are really painful and stiff in the mornings and I am told that I should have resting splints. I'll see how I get on.

  • Well that went well. I've got ring again tomorrow and wait for a Dr to call me back. Harrahhhhhh.

  • Blinking norah and I thought my lot were tricky?! Why don't you make an apt to see a locum or just any GP available - say you're feeling rubbish? My GP took ages to refer me to the physio and when I finally got to see her I still hadn't seen the rheumy for diagnosis so she said I must wait until I had.

    But since I've had RA diagnosed she's been great. She referred me to the OT who came and visited me at home and gave me a lot of gadgets and blurb about hand care. When I really flared up badly in my wrists again in February I emailed her and asked her to research night resting splints with me. I then pushed her to refer me to the OT in the hospital - the only way was by her phoning my GP and asking him to refer me to nhs OT who has had hand training. This woman finally phoned and said I could come and be fitted for one.

    The irony is that I haven't really needed it very often since but when I have used it for the odd night it's been brilliant and somehow very comforting that it's there at least. Nothing comes easy for us though does it? I had to do lots of pestering to get there and sometimes I get really low from having to always be pushing my own healthcare treatment plan. It would be great if we were somehow able to put all these new found skills to use in some fabulous, well paid work-place wouldn't it?! TTx

  • Hi Tilda, Thanks for understanding, read on I have sort of replied just waiting for another GP to ring me.

  • Caggy your situation is terrible. Do you still have to ring first thing in the morning even if it is not an emergency appointment? Before i was diagnosed i spent many years in and out of the surgery trying to not sound like a hypochondriac yet knowing something was badly wrong. I was diagnosed about 18 months ago and have saw the consultant three times. Last year she took me off metx and i was left with nothing for about 4 months, until i was put on lefl which after a number of side effects i insisted i come off. Again i was left without treatment for another 3 months and had a really grumpy consultant to boot.

    But unlike you i do have a very good gp who rang my consultant insisting that i get an earlier appointment, is there any chance that you can find a sympathetic person within the surgery that you can get talking to.

  • Hi mads, are you on any meds now that help? it seems to me that with or without meds we all have similar pains, I take paracetamol and ibruprofen and tramadol if it's really bad but thats it for now. my wrists stay weak and painful all day even with this. and do you know of anything that can help with the fatigue? I'm sapped most of the day.

  • Hi Carol, reading your blog makes me realise how lucky I have been with my GP and rheumy team. My RA was diagnosed back in the early 90's and I have only seen my GP a few times relating to my RA (I've seen them for other things), and have only had to contact my rheumy team in between appointments a few times and then they have been very supportive and helpful. (Fingers crossed and touch wood that it remains that way).

    I wonder what would happen if you went to your hospital's A & E department when your pain is so bad and you are knocking your head against a brick wall to get some help from the usual sources. Could they help?

    Judi xxxx

  • Got Blue Lighted in twice in the last 2 months and come away non the wiser, First time I actually had pains in my chest though on the rightside. was told it was polymyalgia and given oramorph and sent home, the 2nd time I felt i was going to pass out as I had been dizzy and could'nt walk straight Had this persistant headache. Dr's couldn't find anything wrong again, only my Blood pressure being high otherwise sent me home in same pain. I was told to ask GP for a Neurology appt, which I have done but she says it RA, and haven't done anything about it apart from asking for my Rheumy appt to be brought forward. But thanks for the ideas, keep them coming, I'll try anything.

  • Good Morning all, Thankyou so much for understanding, I have phoned the surgery this morning and am now waiting a call from the GP mine is on hols! that might be a good thing, I'll let you know. Good start even had to get my husband to spray my hair this morning as no power in fingers, Just had this thought though! you lot are a POWER to my weak Elbows. Thank you all.

  • Oh please do get really firm with these people Caggy it's so wrong what you are going through - makes me realise how lucky I am to have excellent GPs and a good if remote and overworked rheumy plus a good physio and an OT I can email if I ever need her badly. I have fought hard for these things though - if I hadn't might be in a similar place to you so fight with all your might to get heard and taken seriously. It really sounds to me as if they at all just playing pass the parcel with you and you are going to have to shout very loudly for someone to stop passing you on. It should be the GP and if no luck today with the phone call then please go into the surgery and do a sit in until someone sees you. The pain you are in sounds intollerable. If no relief forthcoming then write to the practice manager and your MP. TTx

  • Am I seeing double now? Ha Ha

  • And so the plot thickens! had call from gp will refer me to Physio Hurrah! and i can come to see nurse this afternoon for another steroid injection, great but he didn't know how much so I phoned the Rheumy Sec in Norwich who said she doesn't keep records of all the patients and doesn't know me, and since I was last seen in Cromer I need to talk to them. I phoned them who told me my notes are in Norwich because I have an appt in July with the Nurse. so she looked on the screen and my letters do not state that I was even given an injections at all! AM I GOING MAD OR WHAT? she will ring me back as my Rheumy is in clinic in Cromer today!!!

  • Me again, post has arrived with my DLA form so much for 7-10 days wonders never cease! Cromer Sec rang back really helpful has Got Rheumy to fax letter to Gp for amount of steroid ready for appt this afternoon. Hip Hip Hurrah! I will have look forward to the weekend. thanks again everyone.

  • Well done you are getting there and all power to those elbows! I must look up your area and make a mental note not to move anywhere near it if your experience is anything to go by! But once the ball is properly rolling (hopefully now) things will improve for you enormously. TT x

  • Hello Caggy,

    I stopped taking MTX myself after only a month on them. The side effects seemed to be worse than the RA itself, I told my GP and my rheumy,s sec and nothing was said. Going to see the consultant at the end of next week so hopefully he will prescribe something with less side effects. My GP has been marvellous, she will see me at any time and puts pressure on the hospital for me to get earlier appt,s. The hospital itself, in particular A&E are pretty useless, I had to go to A&E last week because of the pain and after 4 hours wait they would,nt give me anything or do anything because this foriegn consultant "did,nt want to interfer with another doctors patient". There seems to be this policy of ignoring people with something you cant see. Most of the time I am sure they think that you are exaggerating the pain.

    regards Michael

  • Hello, I see the nurse every 4 - 6 weeks for blood test, I am on 15mg of methotrexate.The consultant every 6 - 8 weeks, he says I am a very interesting case, they dont really know what is wrong with me . I have been diagnoised in the last 2 yrs with RA, osteonecrosis & now had an op for Friebergs disease surely I cant have all of them can i ??

  • I don't even know what osteonecrosis or Friebergs is? will have to search out, funny though how they all have these names yet all have similar symptoms.

  • i tend to think that auto-immune and other arthritic/bone diseases are a bit like buses, once you get one then others often turn up as well. And bodies are complicated so it can be hard for docs to identify closely related things, and they give separate names that can be confusing. I think it would be nice if they group things like with plants, so you could be told that you had a set of problems that all fell into one family of things. Hope that they sort out a definite diagnosis for you one day. Polly

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