Growing concerns

[Dozza]

I have belonged to this forum for about 4 weeks and my concerns are increasing daily because I don't understand what the termology is on here and how do I know if I'm receiving the correct/best treatment? I have never had any discussion on my blood results; I don't even know why I give blood or what they do with it. I have no idea what the following means or if I should be having it - RF, ESR, CRP, RTX infusion, depo injection, PsA, DAS score, dmards plus many more. I don't know how severe my RA is, no idea about what treatment is best etc.. I'm becoming depressed because I'm just not clued up and I should be. Any suggestions?

[nomoreheels]

Hiya Dozza. If you look to the right under Pinned Posts you'll find a post titled 'Common abbreviations and acronyms on this community'. Everything & more is listed there. If anything isn't just ask.

Re your treatment, I'm afraid if your team don't discuss anything with you you're going to have to be proactive & ask. We're always here if you need us, there's little we haven't experienced between us.

[Runrig01 in reply to nomoreheels]

If your Rheumatology team do not send you a summary of your appointment session, then you can ask your GP for copies. However all consultants are supposed to cc their patients in their correspondence.

The summary will normally state things like your DAS score , and what treatments they are trying,

These clinics are a partnership between you and your specialist, and your treatment plan should be a joint decision, following discussions. It may be wise to write down some questions to ask at next appointment, sounds like you need to be more proactive. For a fee of £10 you can ask your GP for a copy of your records including summaries. Good luck

[nomoreheels in reply to Runrig01]

Indeed, I always ask to be cc'd on the reports sent to my GP & generally it happens except with my Rheumy Nurse, I never receive one from her so my Practice Nurse prints her report off for me at my next drug monitoring bloods. My latest had many anomalies so I'll be tackling that at my next appointment.

[Dozza in reply to nomoreheels]

Thank you

[Dozza in reply to Runrig01]

Thank you

[Dozza in reply to nomoreheels]

Thank you for information my friend

[nomoreheels in reply to Dozza]

You're welcome. Don't be afraid to ask anything, as postle aptly says there's no final exam!

[AgedCrone]

Ask your rheumy what each drug you are prescribed is supposed to achieve...make a list for when you next see him. He is the expert....take his advice until you feel something is not right.

Ask him to tell whoever types his letters to send you a copy of the letter he sends to your GP....if you don't understand anything in it ask either your practice nurse, or the GP.

Unless you actually understand the relativity of one drug to another it sometimes won't really make much sense.....so just ask anything you are worried about....but don't try to become an expert over night.,let the rheumy do his work.

If you change drugs & you don't feel any benefit ...tell your consultant ....he will expect that.

As you have gathered treatment for RA is different for everyone & no two people will react the same .

Most of all don't worry yourself into a lather about it.....that too is the the rheumy's job.

[Simba1992]

I can well understand your bewilderment. If you have not been helped to understand the basics of your condition, the professionals have really not done their job😡 It is not your responsibility to know what to ask. Your consultant and nurse are well aware of the stress and need for help when getting a diagnosis of a chronic illness. They are trained in understanding how important it is for the patient to gain control of her new stressful situation and have a trustful relationship with those who have the medical knowledge. Just tell them at your next appointment that you really need much more information about bloodresults, their meaning and about meds their effect and why they are given to you. Good luck, I can also understand. that it may not be easy😕

[helixhelix]

All of us were clueless to start with so you are not alone! It is a new world, so really not surprising that we all find it confusing to start. And don't try to take everything in at once as there's so much that is new. Just tell yourself that from now on you'll ask every time the doc/nurse says something you don't understand. And there's no single "best" treatment as there are many options that depend on how you respond.

Otherwise a good place to start is the nras.org.uk site which explains things well.

And ask here, as someone's usually able to give an answer.

[Hidden]

Yep, I too think you should ask about anything that foxes you on here. Nobody will think badly of you, just ask away as many times as necessary. The good news is there's no final exam! I think I've picked up some of the medical stuff fairly easily, but we're all different. You should see me completing my tax return, I'm like a 5 year old, tears and tantrums, the lot.

[Dozza in reply to Hidden]

Bless you

[Hidden in reply to Dozza]

I can knock one item off the list in your post anyway. PsA (which I have) stands for psoriatic arthritis, another charming (not!) form of inflammatory arthritis. So if your rheumy is sure you have RA you won't have to worry about that one!

[ranne21]

I work on a list of queries before each appointment, adding things as I think of them here and there, which helps to make sure I don't forget things on the day. I try not to make the list too long but make sure it includes anything I want to know more about or am bothered about.

[Dianedplm]

Speak to your specialist. They are the ones that have results to all your tests and know exactly what you are being treated for and what with. This forum is good but questions like yours should be directed to your medical team.

[Seenie]

Where do you live, Dozza?

[Dozza in reply to Seenie]

Near Beverley East Yorkshire.

[Hessie5]

Your Rheumy should be discussing this with you. I would go back to them with all the questions you raised here for those answers. Wishing you luck with it all.

[Hidden]

I'm going in for another couple now: ESR and CRP. When they take your bloods they're looking for signs of inflammation and these are two different ways of measuring it.

Inflammation is what causes all the trouble. A person with a tip-top immune system (i.e. not us, sadly) produces inflammation to deal with bugs and injuries, it's healing. Our wonky immune systems produce inflammation by mistake and it attacks our joints. The inflammatory response is partly what makes us feel ill when we really are ill. If we've got flu we feel dreadful partly because of the inflammatory response. In that case feeling like poo is a short term trade off for getting better eventually. But with RA and PsA the inflammatory response just keeps on going, stupidly, and it's that that causes the swelling and the grotty feeling.

Here endeth today's lesson. (I'm probably not being terribly accurate, but basically inflammation is the bad thing and ESR and CRP can give an idea of just how bad it is).

[Dozza in reply to Hidden]

Thank you - that does help