Feeling rather ignored!

[Jaxine]

Is anyone else finding it difficult to get an appointment with Rhemy nurse/ consultant? I've not seen my Consultant for one year now. I appreciate during this Pandemic that getting a face to face appointment has had to be to no avail, however, as a consequence my RA has been the brain of my life and my health with RA has deteriorated. It has not been through a lack of trying to contact the Rheumy Department that s for sure!

My finger joints are constantly painful and consequently have started to look deformed with protruding bones which have become bulbous. My feet are constantly painful, walking on awakening has become a huge problem, it s like walking on a sea of golf balls. I am currently taking Embrel injecting once fortnightly, however, it is is not controlling my RA. I have been complaining of these symptoms for a few months now, whilst having return calls, my advice is to give the injection longer to work. I've been taking these injections for 6 months now and feel enough is enough.

I realize that everyone s RA is unique and therefore so is their journey with medication, but do most of you have take other medications as well as your Biologic? I'm worried having not had proper medical intervention since last year that my R A is not being controlled and consequently my deterioration is causing serious joint damage. I'm feeling rather ignored! I am generally active and just get on with my life, i rarely moan about my RA inflictions , especially during this Pandemic when so many have lost their lives. But I was just wondering if anyone else, whist on Biologics, also experienced or is currently experiencing painful joints and if so ,what was /is the next part of your medication journey?

Sorry for the Rant!

[Lolabridge]

Oh Jaxine I’m sorry to hear you are not getting sufficient support from your Rheumy at present and that you’re suffering.

I think you will need to keep hassling them and I recommend you send an email with photos of your swollen and deformed joints attached. Send it to the patient helpline email address or directly to the consultant if they don’t have the former. That worked for me and others here too.

You will probably not get a F2F appointment with your consultant yet though but if you send the photos it helps to focus a telephone conversation with him/her. Good luck!

[Jaxine in reply to Lolabridge]

Hi Lola,

Great advice I will do just that. Need to get on top of this. X

[sylvi]

I have just spoken to my rheumy nurse as i rang this morning for a prescription for hydroxy. She has told me about the letter my consultant sent to my dr and i am to talk to him about my pain.xxxx

[Jaxine in reply to sylvi]

Unfortunately my doctor always tell me ho speak to my rheumy nurse, they always say are not specialists in the treatment of RA and can only prescribe pain killers. Unfortunately I need more than pain relief, I need my RA to be controlled. But thank you for your reply. X

[Lolabridge in reply to Jaxine]

Yes I think that’s the phrase you should actually write in your email,

“my RA does not seem to be under control.”

[Jaxine in reply to Lolabridge]

Yes agreed!

[Brychni]

*hug*

[Jaxine in reply to Brychni]

So sweet of you x

[Summerrain14]

Great advice from Lolabridge. I am sorry that you are not hearing much from your rheumy. I would of thought six months is long enough for giving the meds time to work. Do you still have regular blood tests?

As Lolabridge says I would send and email with photos if you can and If you know your blood tests results to give a summary of these and how much you continue to struggle with your RA not being controlled currently.

I recently was able to email my rheumy nurse a summary of my symptoms with photos and these were uploaded to my record for my rheumy to review. I had a telephone appointment a few days later with my rheumatologist and my meds were changed.

Thinking of you and hope you hear back really soon. I wouldn’t say you are ranting at all bless you. You have been very patient indeed. x

[Jaxine]

Hi Summerrain,

Yes I had my bloods done 6 weeks ago. I've definitely been patient . Fingers crossed I get the right medication, it s been 18 months now since diagnosis, would be lovely to get a break! Thank you for your kind reply x

[Jaxine]

What do they exackly check for in our bloods? It s been so long since I saw any member of the medical team I've not had the ability to ask!

[Summerrain14 in reply to Jaxine]

You definitely deserve a break for sure. I hope you are able to send an email. As for bloods they usually check things like our CRP rates, ESR too as they can show the activity of the disease. My bloods never reflect things fully though and I am thankful my rheumatologist looks at the whole picture and not just blood tests. x

[Jaxine in reply to Summerrain14]

Yes agreed, it's got to be the full story. X

[Zephre]

Hi Jaxine I know exactly where you are coming from,I too in Embrek and take Sulphasalazine but I inj once a week I have been for 3 years now but after 6 months you should have seen a difference way b4 this ,as you say they it's very hard to get hold of rheumo to let them know how we all feel ,I too have big problems with my hands going into a claw as I mentioned this to them Decemver but its girl worse and the pain is awful so where do we go from here I just don't know ,fed up as I think we all are seeing our body go to pot ,hope you get a hold of someone take care x

[Jaxine in reply to Zephre]

Hi Zephre,

It s so horrible isn't it. Both my thumbs and index fingers have now started to form bony nobules in several places and only in the last few weeks, literally from nowhere! This could so well have been avoided if someone could have dealt with me. I have spoken on numerous occasions to the head biologic nurse who reassured me that it would be dealt with but still to no avail! I rang again ( always an answer machine) so we will see. But it s so sad that my joint damage could have been avoided. I have consistently conveyed that my Biologic isn't controlling my RA. Apart from it looming unsightly it s very painful.

Thank you for replying and for your understanding, it always helps when one is supported. X

[Hidden]

They should not be leaving you in this state. RA should be treated aggressively to avoid joint damage. Keep pestering.

[Jaxine in reply to Hidden]

Hi Baxharie,

Yes agreed! I do keep pestering, although I hate being a nuicence but the pain of not having the ability to use my hands for the simplistic of tasks is very sad. My Consultant ( which I've not seen for one year) emphasised the importance of controlling RA, My RA is not being controlled and as I have said , I now have long term joint damage. But I really don t know what else I can do, I've spoken to so many nurses now who say they will speak to my consultant but again to no avail! Short of turning up at A&E ( which I would not do) goodness getting so tired of it all.

Thanks for your reply x

[bubblyalex in reply to Jaxine]

What about taking to your gp? And maybe going for a second opinion? My Gp has been a great support for me and really they have been working together to help me.

[Hidden]

I share your frustration, which is totally justified. You are not being looked after properly. If the consultant won't even speak to you on the phone, it might be time to ask your GP to refer you to someone else for a second opinion, which is your right. Alternatively, if you don't want to go that far, write to your present consultant describing your suffering and enclosing photos of your joints. That might be harder for him/her to ignore. Best wishes x.

[Jaxine in reply to Hidden]

What a good idea I didn't think of that, we really are a Nation that is born on tolerance, patient and making do, for fear of being perceived as bring unappreaciative and disrespectful but I may very well have do that, whilst it's horrid to have to whine , sometimes one must do what one must do. My husbund keeps telling me to seek more advice.

[Jaxine]

Good idea in essence, however I'm always told to speak to my specialist team as they are not specialists in treating RA. They will prescribe painkillers and prednisone if required. I really need to speak to my consultant . I do have her secretary s number ( she s frightfully abrupt and scary) but I fear being a nuicence! But if I dont hear from the Biologic nurse tomorrow I'm going for it! I can be quite feisty but that secretary makes quiver!😂😂

[bubblyalex in reply to Jaxine]

Gp’s are good at telling the rheumy’s how hard it is on the ground for us and prodding then into action if things are getting harder and harder for us. My GP has been awesome in helping facilitate my treatment. For example he was able to step in and get the MXT injections going swiftly for me rather than having to wait weeks for the rheumy to be able to get it set up.

[Jaxine]

Yes the fatigue is an absolute misery! I'm so sick of my own voice ' I'm really tired today' such a bore! I unfortunately can t take MTX it gave me a chronic chest problem ( very rare apparantly) had to be me😂😂 I was on steroids for weeks recovering. But I will def ask about hydroxy. It s a horrible disease, just eats away at you. I remember being told it could take up to 1- 2 years to get on the right meds and I thought ' Na! Not me) that s a laugh. I'm going to have to a Michael Caine and ' Blow the .... doors down' 😂😂