Had enough of being fobbed off !

[EmmaDR]

Hiya All, I am new to the group, Nice to meet you all

I am 35 have been diagnosed with RA for three years, however recently my symptoms have been horrendous - My hands are always swollen like I have been a fight on a daily basis and bright red on my knuckles both on the hand and finger joints, they are like this more often then they are not ... However nobody (i.e GPs) seems to want to help, even though clearly my RA isn't under control

(I am on 2000 mg a day of sulfasalazine I cant have Methotrexate as I am also epileptic and that Methotrexate would interact with my Carbamazaipine for my seizure control so I cant have it.)

So even though this is the case I seem to get the:

"Well...... you have Rheumatoid Arthritis get over it" kind of attitude directed towards me, I wouldn't mind so much if I was someone who was in there every week complaining about something new... but I am not , they don't look into any symptoms I have just always put it down to this condition but never help me to try to reduce these symptoms.

I hardly ever go to the doctors as I am a very strong person and hardly moan and to be honest its pointless anyway, but when I do they do nothing and tell me that is my life now. Does anyone else have this problem?

thanks Emma xx

[popsmith1874]

No sorry but that isn't good enough, I would try another consultant and see how you get on, it's imperative that they get your RA under control xxx

[EmmaDR in reply to popsmith1874]

Exactly, I only ever see the rheumatologist (Professor Arden at JR) once a year in a clinic. But I think the GPs think because I am seronegative I am not that bad, so they don't think or take it seriously. But no joke - looking at my hands to me and everyone around me it looks awful and my pain is shocking but I just carry on because I don't want people to think I am making a fuss so I hardly mention it xx

[popsmith1874 in reply to EmmaDR]

I'm also seronegative and my hands are exactly the same, I failed on 4 dmards and am now on biologics along side Methetrexate but am struggling at the moment and hopefully will be put on something else and usually my bloods are fine even though I'm not so I know what your going through, I've learned over time that you've got to be firm but polite with the Rheumy or they just don't bother, hope you get on ok xxx

[EmmaDR in reply to popsmith1874]

Thank you, whats worse is the fact the I don't make a huge drama I am not in the doctors every week but it seems like that's what I need to do to be taken seriously. I have been on Sulfasalazine since 2015 I am just wondering if my body has got used to them now so its no longer working.

My hands feel like I have radiators strapped to them at the moment they are so hot lol. xxxx

Its frustrating that the bloods don't show it because its like they don't take you seriously because it doesn't. However the amount of people who I have spoken to that are seronegative seems to be more seronegative then positive.

[sharon6768 in reply to EmmaDR]

I am seronegative also. I had never heard of it before and when diagnosed I couldnot figure out why I was being fed these awful drugs for something I tested negative for. Are you having a flare in your hands or are they always that way?

[EmmaDR in reply to sharon6768]

I would say a flair I think , as until now they would only be like it sometimes now its daily

[Kai-- in reply to EmmaDR]

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Take the reigns & drive on, dear lady. 👍👍

Keep using your head 🤔, heart 💓, & mind 🧠 in balance ⚖️ . You will see your way though the labyrinthian maze 🌀 of pitfalls 🕳 , distractions 🤡 🎪 🤦‍♀️ , & ignorance 🤥 🤤 🤷‍♂️ .

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[helixhelix]

Change your doctor! Or rheumatologist. Or both!

That is definitely in the not good enough category - especially at your age. Or as a first step if it's the hospital that's dragging their heels then complain to PALs (patient advisory liaison service - there's one in every hospital). If it's the GP then write to the practice manager to complain - your surgery will have a complaints procedure that they should follow.

If you are only on Sulpha do you have regular blood tests? If not ask for your inflammation levels to be checked as if they are high then you definitely have grounds to protest at negligent treatment.

[SoulmanPaul in reply to helixhelix]

Spot on Helix!

If Emma's hospital has a website there's usually a link to Pals and a phone number.

[EmmaDR in reply to helixhelix]

Hiya I have monthly bloods because of my liver because of Sulfasalazine and Carbamazapine are both harsh especially both together and also to check for inflammation however I have always been seronegative in bloods but when they look inside via scans I apparently am full of inflammation but strangely it doesn't show up in my bloods.

To be honest I have I never been helped, advised etc about the condition once I was told I had it! To take sulfasalazine, take 2000 mg a day ... that's it ! That's about as much as I have been told, I have had to research about my condition myself lol its laughable when I write it down really.

[helixhelix in reply to EmmaDR]

Ok, so push to get your hands checked under ultrasound.

I too have blood that rarely shows inflammation and my rheumatologist checks me using ultrasound instead. Happily I have a rheumatologist who has a machine sat by her desk - which is rare in UK.

I would start in the "disappointed and worried" vein and then if no action start get a bit more aggressive and add that you feel like you risk permanent damage which would be negligence in follow up letters.

I'm cross on your behalf, so don't be fed up, get angry! Or rather politely assertive as losing it won't help.

[EmmaDR in reply to helixhelix]

I think your all right, I think I need to make a complaint as it isn't acceptable and they aren't doing their best for me, to be honest after reading all the comments it seems everyone else is getting better care then me so with that in mind I need to get assertive! thank you for your advice

[helixhelix in reply to EmmaDR]

The rheumatologists are so overworked that unless you make it very, very clear that things aren't working for you they will assume all's well and won't do much. It's rarely because they're nasty or think you are not worth it, but just that they have so many demands on their time that they filter things out.

[NeonkittyUK in reply to helixhelix]

Yes Emma, tell them you have been patient and now feel you have to have some answers. I was the same .. overly tolerant and it has been to my downfall. Good luck honey. Sorry you have pain and inflammation.

Yes HH, that's rare re the ultrasound but what an excellent idea and saving time so you don't have to go for separate scan appointments. I have asked for ultrasound on my knee three times and been fobbed off in the past ten years since it got bad. The last time I asked the senior top rheumy grabbed my knee at the back and squeezed it and hissed .. it's fat pad. Glad she was due to retire or I's have written a very honest letter to the hospital about her very bad attitude. She was nasty. Too stressed.

[SoulmanPaul]

Hi Emma and welcome...youre in a good place here. Lots of knowledge and advice from some great people.

Mtx and Sulfa are just two of many dmards so I'm surprised you haven't been prescribed something else. That said I dont know if any of these would have similar issues in terms of your epilepsy meds. Are you under the care of a Rheumy team or just your Gp?

Paul

[EmmaDR in reply to SoulmanPaul]

Thank you Paul, yeah I am not sure if I can have anything else I think Sulfa is the only Dmard that does interact.

Professor Arden whos from the JR in oxford but I hardly see him once a year in fact, However I am due to see him in May.

Emma

[spzgirl51 in reply to EmmaDR]

Hello EmmaDR ,

I think May is a long way off and it a long time to be living with that level of pain.

Perhaps it is time you developed the art of complaining loudly?

Ask for an earlier referral to get your disease activity score, (DAS score) rated asap. Can you take photos of obviously swollen joints? Perhaps you would benefit from having your meds reviewed? I know it can take a while for medication to work? But but , perhaps you have not found the optimum level yet?

Good luck xx

[EmmaDR in reply to spzgirl51]

Yes I agree, I was talking about doing a swollen hand diary ie photos of them everyday for the next two weeks with my partner earlier as I think if they see over a long period of time how bad they are they might start taking me seriously. You would think after three years you would have it sorted though wouldn't you

[sylvi]

Oh dear darling i wish there was something i could say that would help you. Keep pressing on at the drs darling and somewhere you will get an answer. Hugs from me.xxx

[sharon6768]

Emma, there is no excuse for the attitude of your doctor. Sometimes I think part of the problem is that they are rheumatologists and see patients with arthritic problems all day. To them we are all the same. That being said, maybe the sulfasalazine is not working for you. I was put on it a month ago and the only difference I see is that I am always sick to my stomach. I, too, am limited in drugs because I have had Hodgkins Lymphoma. I tried mtx, but lost over half my hair and became so depressed, I didn't leave the house - not from the hair loss, but from the mtx. It's hard, but places like this can help. I try to do as much research as possible and present my findings to my doctor and make her discuss them with me. She didn't like it at first, but she is now used to me. I'm in the US. and if she wants to ignore me, I will go somewhere else.

[EmmaDR in reply to sharon6768]

I have found that if you go after researching yourself they dismiss everything you say as if you are doing their job for them but if you don't they don't bother anyway lol

In the UK we have the NHS and I am thankful we do but sometimes I think we are to overstretched and they just haven't got the time or the funding to care enough xx

[Jess_doyle]

I was meant to be seen every 3 months, because I’m on hardly any medication due to them all lowering my white blood cells crazy, no one said to get my bloods done or check in with my gp, I’ve been feeling sore past few weeks and feel bad thinking about making an appointment for stronger painkillers! Get what your saying it’s horrible the way we get put to the side, I’ve had to wait a year for an consultant appointment, just the way the health care is now. Private care is to expensive 😕 I’m 26 and it’s definitely gotten worse the hospitals and times