Swelling in neck and vacvibatiobsy: Hi folks just... - PMRGCAuk

PMRGCAuk

20,342 members38,113 posts

Swelling in neck and vacvibatiobsy

Rosshigh profile image
59 Replies

Hi folks just been to see gp and he is sending me for scan on neck which is good but came out ready to cry as asked about 3rd primary vaccination and booster and he said no only booster. Also asked about shingles vaccination and he said it was not a live vaccine. I told him I thought it was so he checked his book and agreed it was!! I don't want to tell him his job and every time I said anything he said all the more reason to come off steroids. No blood tests suggested either even although I have not had any for 3 months.

Sorry about the moan but really down and really want to ask for another doctor but I always get him.

Written by
Rosshigh profile image
Rosshigh
To view profiles and participate in discussions please or .
Read more about...
59 Replies
SheffieldJane profile image
SheffieldJane

Another of the arrogant brigade. Arrogantly wrong. Ask for another doctor by name and wait for them. I wonder if pharmacies are up on it all and can give you what you need, even if you have to pay a bit?

Rosshigh profile image
Rosshigh in reply to SheffieldJane

Thanks for your reply. I will need to ask for another doctor as really can't be feeling like that every time I need to speak to him.

PMRpro profile image
PMRproAmbassador

It would be enough for me to make a complaint. I don't expect a lot of doctors - but I DO expect them to know their facts and get things like that right. Next time ask him if he tells his RA patients they need to come off their methotrexate or lefunomide, Pred is our DMARD and what controls our disease symptoms but they don't "get" that.

I think they are as mixed up about the terminology as everyone else. Everyone over 50 will get a booster/third vaccine, 6 months after the second - and for most of us over 60s that must be now soon. These 3rd primary jabs are for under 50s who are also severely immunocompromised but who don't qualify on age grounds.

Rosshigh profile image
Rosshigh in reply to PMRpro

Thanks again for your expertise. I am going to have to ask for another doctor next time. Didn't actually say but after asking all the questions re vaccines he actually got up from his seat and went to open thd door for me!! I am so intimidated by him even though he is not actually rude.

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

Oh yes he is - that is rude. So are his rejoinders about getting off pred in such a short time. You are doing well to be at 6.5mg - that is just a pipe dream for me! My doctors accept that is what I need to feel reasonably well and know they can't offer anything better.

Rosshigh profile image
Rosshigh in reply to PMRpro

Hi PMRpro sorry I know you have struggled over the years but glad you are at least stable with your dose. I am pleased I have got down to 6.5mg and was positive until I saw him.

Hope you are doing OK and thanks again for the support x

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

Mmm - but think what he'd say to me at 15mg after 12 years ...

Rosshigh profile image
Rosshigh in reply to PMRpro

I dread to think. Sorry you must get fed up giving everyone advice when you're going through things yourself.

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

I'm here BECAUSE of that - I've learned how to deal with most of it so why should others have to work it out on their own when people like me and DL and Mrs Nails can give some pointers?

Rosshigh profile image
Rosshigh in reply to PMRpro

Thank you again I appreciate all the help I get from all of you. I am so grateful to have found this forum. It helps to understand the illness so much better x

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

It's what we aim for :)

Rosshigh profile image
Rosshigh in reply to PMRpro

You definitely achieve that x

SnazzyD profile image
SnazzyD in reply to Rosshigh

Sounds like he was intimidated by you

Rosshigh profile image
Rosshigh in reply to SnazzyD

Don't know why as I am always respectful

SnazzyD profile image
SnazzyD in reply to Rosshigh

But then you go and ask difficult questions! 🙂

Nightingales profile image
Nightingales in reply to PMRpro

Now I am confused. This is the latest from JCVI. Most of us who qualify will fall under Advice number 3.:This will be the third vaccination and later it says we will get a 6 month booster as well if plans don’t change. gov.uk/government/publicati...

Talking to my GPS office they don’t have a clue although they have received a letter. My husband and I have been called for our booster although I had a different letter for immunocompromised people. They still called it a booster. I am going to get it and hope I get some antibodies this time.

Rosshigh profile image
Rosshigh in reply to Nightingales

That's what I tried to say my gp but was told it was just a booster 🤷‍♀️

PMRpro profile image
PMRproAmbassador in reply to Nightingales

Basically it depends what dose of pred you were on in the month up to and including the 2 jabs - and let's face it, Point 3 is pretty clear and likely to include many of us. Mind you, they ARE recommendations and who knows if this was a bit of advice the government thinks is one they want to take note of...

What dose WERE you on at the time of your jabs?

Rosshigh profile image
Rosshigh in reply to PMRpro

I ws on 15mg

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

That's clearly covered by the third qualification for the jab whatever it is called!

Rosshigh profile image
Rosshigh in reply to PMRpro

Thanks will just take what I get x

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

I'm just waiting for the Italian version - they are again starting with over 80s. We got in at the end of the 80s spot when there were some left over appointments to be filled. No idea how they assign it - related to original date of vaccine would be sensible but who knows!!!! OH is CEV but not immunosuppressed so I assume his jabs then worked where I qualify as immunosuppred at 15+ pred.

Rosshigh profile image
Rosshigh in reply to PMRpro

We have been told flu and booster will be given together as long as it is 6 months from 2nd vaccine. That would mean both my OH and I should get ours around 20th October as that will be 6 months. Will be interested to see what happens. When did you get yours?

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

The second was on Easter Monday just 6 months ago but I don't think the 6 month figure is being talked up here in Italy.

Rosshigh profile image
Rosshigh in reply to PMRpro

Hopefully you will both get them soon x

Nightingales profile image
Nightingales in reply to PMRpro

I was on 30 then 20 so I qualify but that was six months ago so I qualify anyway. But this would be important to those who had their jabs late because they can get a third in 8 weeks if they qualify. If it was me I would print this out and take it to the GP if they have access to the vaccines.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Time for another GP methinks,….especially if he thinks you should be off steroids in under a year with PMR.

As for shingles vaccine- there are 2 - live and non-live - see attached regarding non-live now available -

gov.uk/government/publicati...

Rosshigh profile image
Rosshigh in reply to DorsetLady

Thanks DorsetLady I knew there were live and non-live thanks to this forum but didn't want to tell him his job. He even said they didn't give them at the practice and then decided they did!! I will definitely need to see someone else as I thought I was doing well as down to 6.5mg. Thank you so much for your help again. x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rosshigh

I know it’s difficult to bite your tongue sometimes…..🤐

Rosshigh profile image
Rosshigh in reply to DorsetLady

I am quite a quiet individual and hate to be a pest but will need to do something ie other doctor in future x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rosshigh

Know what you mean, but I think we have to ‘become a pest’ sometimes…..😉

Rosshigh profile image
Rosshigh in reply to DorsetLady

OH wants to go to surgery and tell them he is affecting my mental health but I would rather just see another doctor.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rosshigh

Can fully understand OH’s viewpoint, but probably less stressful all round if you go for another GP. Shouldn’t have to, but…..

Rosshigh profile image
Rosshigh in reply to DorsetLady

I agree with you less stressful for me

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

What about OH writing to the Practice Manager expressing his concerns? Because it does affect him too ...

Rosshigh profile image
Rosshigh in reply to PMRpro

He would love to do that so maybe think about it when I feel less stressed

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

Let him have his pleasure!!!!

Rosshigh profile image
Rosshigh in reply to PMRpro

Sorry didn't reply as our Internet was down. He is determined to sort him out!!

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

Excellent!

in reply to Rosshigh

Let him write his letter you could be surprised by the results!

Rosshigh profile image
Rosshigh in reply to

Thanks for support. Will let him do what he thinks

123-go profile image
123-go in reply to Rosshigh

You are doing well! You definitely know more about your illness than he does. He needs referring to Healthunlocked UK.....the UK's leading charity in PMR/GCA!

Rosshigh profile image
Rosshigh in reply to 123-go

Trued to tell him about the charity before but he does not want to know!! I have learnt so much from this forum I cannot tell you. Thank you all x

123-go profile image
123-go

I'm sorry to hear you feel so uncomfortable with your GP. Certainly ask the practice manager if she will put you on a different GP's list. You don't have to give a reason but the fact is that the current doctor is having an adverse affect on your positivity and well-being by being dismissive of your concerns and questions.If I were you I'd take a look at the practice's website and read their mission statement. If your GP, in your opinion, isn't fulfilling its aims and values you have the right to mention that.

( Part of my surgery's mission statement says,

"We endeavour to treat all patients with dignity, respect and honesty". ) We really shouldn't accept any thing less. 💕

Rosshigh profile image
Rosshigh in reply to 123-go

Thank you for replying. You are right I need to do something as I thought I was doing good reducing steroid and he was dismissive. Thanks for the support.

123-go profile image
123-go

Mull it over TOMORROW. Try to get a decent night's sleep 🛌. We're all behind you whatever you do. 🙂

Rosshigh profile image
Rosshigh in reply to 123-go

Thank you so much I appreciate it x

LeeSaint profile image
LeeSaint

Hello Rosshigh, sorry your having a hard time.. I live in Arizona so I am never getting any of the covid vaccines.. I have had covid and now have the antibody for it.. anyways it says you live in the UK. Is the vaccine manditory in the UK??? the vaccine was never tested with People Who have PMR so the have NO IDEA how it will react with it.. hopefully the PMR flair up will calm done soon. I know how much prednisone helps the pain. I take 10mg every day and 15 during bad spells.. I hope things get better for you soon.. have you tried steroid injections directly into the worse joints?? I get both shoulder joints injected every 3 months and it really help with the daily pred.. if you really dont like him then go to a different medical group.. take care and know you are not alone.. Lee

Rosshigh profile image
Rosshigh in reply to LeeSaint

Thanks Lee vaccines are it mandatory in the UK but they are trying to introduce vaccine passports for large gatherings to prove you have been vaccinated. I will try and get a different doctor next time. Thanks for the support x

Rosshigh profile image
Rosshigh in reply to Rosshigh

Sorry meant not mandatory 😂

MsDirecto profile image
MsDirecto

Most of us have rheumatologists guiding this part of our health care, even if we have kept our GP or Internal Medicine doctor. My regular doctor is an internal medicine doctor and familiar with managing autoimmune conditions, but since I already had a rheumatologist, she lets him manage my GCA while she sees me for other issues, and they communicated frequently in the early stages of my condition. GP's have to deal with conditions of people of all ages, from teenagers to senior citizens. Since connecting with this wonderful group, I cannot imagine that a GP would be able to stay current on PMR/GCA nor manage prednisone dosing.

You deserve more competent and respectful medical care. A late colleague had been a hospital administrator and didn't suffer fools. His attitude as a patient was "Remember, doctor, you work for me." He didn't ever say that, but his attitude made that unnecessary.

PMRpro profile image
PMRproAmbassador in reply to MsDirecto

"Most of us have rheumatologists guiding this part of our health care,"

In the USA perhaps but not in the UK - there it is far less likely and most ongoing management is done by the GP who also writes prescriptions even for things like methotrexate which must be initiated by a hospital consultant but then the GP is delegated. Many patients aren't ever referred, however much the consultants would like it but since waiting times can be months, in some places years, it isn't practical.

Rosshigh profile image
Rosshigh in reply to MsDirecto

I know they can't know everything but he doesn't seem to know much about PMR. It was not him who diagnosed me but another gp who has since retired. He was just giving me painkillers.

Snowy12 profile image
Snowy12

I had my 3rd vaccine on Tuesday they said it was because I’m immunosuppressed

Rosshigh profile image
Rosshigh in reply to Snowy12

That's what I asked but he said just booster

bonmaine profile image
bonmaine

Same here. Being Treated for RA and think I have PMR. Rhuemy making it very hard for me to get on Pred and leave the MTX behind. I made an appt with my PCp whom I see tomorrow for 2nd opinion and to see if they will tx me for PMR. Yes, very frustrating, which of course, exacerbates my symptoms.

MusicMachineMan profile image
MusicMachineMan

Getting actual help from a GPnthese days seems all but impossible( they will roll their eyes if we mention having read something online,and yet they seem to be just glorified Pharmacists

Rosshigh profile image
Rosshigh in reply to MusicMachineMan

I totally agree they do not like you to know anything!!

MusicMachineMan profile image
MusicMachineMan in reply to Rosshigh

Exactly

You may also like...

PMR and swelling on neck above breastbone

just above breastbone where you have a hollow on neck. Just wonder if it might be to do with my...

Pain & swelling in big toe.

question. I have been of pred for about a year & everything going really well until the last few...

Moon face and continued swelling.

I am on 17mg pred.Have GCA since Sept. Really want to get down to at least 10 pred but at each step

Swelling in ankles and forearms.

called my rheumatologist. She then talked with me and said it was difficult to know if the swelling...

Neck and shoulder pain

and for how long please? I won’t ask doctor as she wants me off steroids ASAP. Many thanks.