Should my dr be doing more ?: As I sit here at 23.54 in... - NRAS

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Should my dr be doing more ?

Oxopinkyblue profile image
19 Replies

As I sit here at 23.54 in agony and feeding posts it helps knowing other people are in the same boat as me ! I raise the question should my dr be doing more ?. I've just done a poll about how your GOP treats your RA and to be honest all they ever do is shove pain killers and steroids down my throat , I've never once had a bone density scan never had any heart checks I feel really

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Oxopinkyblue profile image
Oxopinkyblue
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19 Replies
Oxopinkyblue profile image
Oxopinkyblue

Let down and really not sure what to do

sylvi profile image
sylvi

Go to A&E and see if they can help you.xxxxx

sheels6726 profile image
sheels6726

i visit the R.A. Clinic twice a year and see my consultant at the hospital. Do you not do this ?

Oxopinkyblue profile image
Oxopinkyblue in reply tosheels6726

I do go to clinic at the hospital but I have no tests apart from blood no xrays scans etc I have my next appointment I December but have been in pain for months but all I get from Drs is co codamol and steroids which he did not want to give me

Eiram50 profile image
Eiram50 in reply toOxopinkyblue

Sounds miserable. Have you asked Your gp to refer/ contact Your rheumy explaining your situation and requesting Your seen earlier? I know my gp, when I’ve explained things have deteriorated is always happy to do this.

Marie

Oxopinkyblue profile image
Oxopinkyblue in reply toEiram50

Hi apparently he has but as yet no new appointment ! So just have to sit and wait in pain :(

Eiram50 profile image
Eiram50 in reply toOxopinkyblue

A difficult place to be. However, should you continue to feel worse, id encourage you to go back to him and urge him to chase it up? Seems terribly unfair to be left suffering.

I wish you the best of luck in getting something sorted soon.

Marie

Lesley_ann profile image
Lesley_ann in reply toOxopinkyblue

Hi Oxopiknyblue, for the past year I have seen my R.A.team every 3 month's, my gp surgery does nothing to help, I always get the.... your rheumatologist knows better than me. I go so often because I have Pulmonary Fibrosis (lung disease ) caused by R.A.. But if you call your rheumatology clinic you can ask yourself if there are any earlier appointments, you don't need to go through your gp. If there aren't any ask to go on the cancellation list, all clinics have them.

Take care Linda x

Oxopinkyblue profile image
Oxopinkyblue in reply toLesley_ann

Oh thanks I did not know this I'll give them a call or pop in tomorrow as I live down the road

helixhelix profile image
helixhelix

Have you asked your doctor to do more? Sometimes I think we are too polite and don't say it as it is....for example if asked how it's been then say things like "not too bad" "I manage" etc. Rather than saying that you are at your wit's end, can't sleep for pain and so on.

I can't quite remember your RA story, but I seem to remember that you are on something like sulphasalazine? If so there are many other things that can be done, but if your blood results are looking ok then the doctors will assume that all's well. So you need to tell your rheumy it's not and ask point blank for a change of meds. And if they say you don't need them ask them why not.

As for bone density scan, you wouldn't be offered one unless you are over 60 or on permanently on high dose steroids e.g. 15 or 20mg for months and months. Short courses of a few weeks wouldn't be seen as a risk.

And it's your GP who would usually do your annual heart check not the rheumy. You can assess yourself using the same calculator the doctors use

Here:

qrisk.org/2017/index.php

And if your result is way above the norm for your age and sex then go and speak to your GP about it.

MAHGS profile image
MAHGS in reply tohelixhelix

Hi HelixHelix

I think it depends on the practice- I had a bone density scan in my early 50’s & had not been on steroids. However I have had RA for 20 years so perhaps-that made a difference😁

helixhelix profile image
helixhelix in reply toMAHGS

I'm sure - another thing that can be a bit of a postcodes lottery. NHS guidelines are quite open to variation.....

of fracture risk:

In all women aged 65 years and over and all men aged 75 years and over

in women aged under 65 years and men aged under 75 years in the presence of risk factors, for example:

previous fragility fracture

current use or frequent recent use of oral or systemic glucocorticoids

history of falls

family history of hip fracture

other causes of secondary osteoporosis[7]

low body mass index (BMI) (less than 18.5 kg/m2)

smoking

alcohol intake of more than 14 units per week for women and more than 21 units per week for men.

1.2 Do not routinely assess fracture risk in people aged under 50 years unless they have major risk factors (for example, current or frequent recent use of oral or systemic glucocorticoids, untreated premature menopause or previous fragility fracture), because they are unlikely to be at high risk.

MAHGS profile image
MAHGS in reply tohelixhelix

Well I am the special one as I do not fit any of the above 😁

Certainly that’s the problem in UK as not same level of care in all areas . Ironically I was in the normal range then 2 months later fell down the stairs and fractured my knee -hip to ankle plaster - took a year to recover !😂

Matilda_1922 profile image
Matilda_1922

My GP tells me to call the rheumatology specialist for advice as they don't know what to do. I'm sure there must be others registered with my GP who have RA.

That's very no very supportive for me as they have shared care. Now I need to request my MXT every month as it's not on Repeat anymore. Which is inconvenient for me.

Would be interested in your poll.

JGBH profile image
JGBH

Patients have to demand tests / investigations because GPs do not do anything at all! Be polite but stick to your point and back up your need for such investigations. Don’t let them fob you off or bully you into accepting their useless opinions. As for a Dexa scan if you have osteoporosis you should get one. Good luck in trying to get the help and support you need.

wishbone profile image
wishbone in reply toJGBH

Just what is it with some GPs? Why are they so darned complacent? Have things got worse since the government made them manage their own finances? I hear lots of complaints, some of which may be unfounded, but I hear too many for it to to be a non issue, and I'll include a few of my own in that lot.

dbestdeb profile image
dbestdeb

I’m not sure if my answer will be any help since I am in the US, but I recently changed rheumatologists and found a huge difference in the treatment offered. The old one was an older male who gave steroid shots every 3 months along with the azathioprine I take. The new one is a younger female and she took me off all steroids, has done X-rays, discusses diet and exercise along with natural remedies like turmeric, and has ordered new blood tests available to measure inflammation. She wants me to take a biologic along with the azathioprine.

They all seem to have their own ideas of proper treatment. I’m not sure if changing doctors is an option for you, but it was an eye opener for me.

Kai-- profile image
Kai-- in reply todbestdeb

.

Spot on, dbestdeb!! 👍👍 Eye opener indeed. 😳

Who our rheumatologist is can make a difference between night 🌚 & day 🌝.

😯

Would you mind sharing her name (area/ location of practice) via PM (Private Message support.healthunlocked.com/... ), if you're comfortable doing so, dbestdeb? 🤔

.

[I know autoimmuners are interested in (actively seeking 🕵️‍♀️ ) 'forward thinking' ➡️ 🤔 rheumatologists/ physicians 👩‍⚕️👨‍⚕️ (around the world 🌐 ) who aren't downplaying/ minimising/ dismissing / 'turning a blind eye' toward the role of lifestyle & dietary approaches (in conjunction with their meds). Any rheum. (or physician) not ridiculing/ belittling/ dissuading those of their patients who choose to pursue 'additional' approaches (as well as their meds) is highly prized 🏆 / 'sought after' in some circles.]

.

Anything you & your rheum. are comfortable sharing would be greatly appreciated. 🙏 😌 🤗 Thank you kindly, dbestdeb. 🙏 🍀 🌺 🌞

.

(Erika's Rheumatologist Confirms Erika's CCP Reduced (from 144.3 to 27) via Diet — turning_pain_n2_purpose: healthunlocked.com/nras/pos... )

.

beeckey profile image
beeckey

I h ave a lovely GP but as far as RA goes she does not know enough about it.When i went she said i will see to any problems you have but i will leave your RA to your consultants.I was having lots of problems with my knees last time i saw my RA doc and she injected my knee and said if it lasted i might be able to avoid a knee op for a while she said the next time i see her she would not be happy if i had trouble with my knee and i had not been to my GP as they can also do things well time to see RA doc again and still getting problems but did not go to GP as i know all they would inject and i dont think she would be happy

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