My unfortunate experience in rec’g RA diagnosis & follow-up visits has been to receive a brief exam, bldwork & handful of Rxs w/out explanation. No discussion of treatment plan, team.approach, phys therapy, meds side effects, etc. I find this frightening and now also have severe MDD & anxiety on top of RA....
Is this standard medicine now? Awful.
Hi Hisue,
Before your next appointment with your Rheumatologist why don’t you make a list of all the main questions you have? Maybe you could email them to your rheumy nurse ahead of your appointment?
Until you have started on your first drugs, & your consultant sees how you react ....treatment plans will remain on hold, & at your next appointment when your rheumy sees how your drugs have helped, he or the rheumy nurse will explain what regime is being planned for you.
As you probably know rheumatologist are In very short supply.....and they won’t always b able to spend time going through things like the side effects of every drug, as all side effects are listed in the Patient Information leaflet you receive with your drugs.....& not everybody has unpleasant side effects.
Personally I only check the leaflet if I feel something unusual is happening.. ..I prefer to think the drugs will work for me.....if you anticipate unpleasant side effects you will often worry for no reason.
As you are very newly diagnosed it will all be very strange for you.....we probably all had anxiety at the beginning....but usually once your meds kick in & you start to feel better you will be able to relax....hopefully the drugs you have been prescribed will help you quickly.
Not everyone needs to see a physiotherapist ...often the rheumy nurses will be able to give you some tips on exercises that will help you..... because sadly physiotherapists appointments can be very hard to some by.
So do try to relax.....we all have anxieties.....but a few months after our initial diagnosis things do become clearer, & we can relax & get back to some sort of normal,life!
Good Luck...hope your meds kick in successfully & very soon.
TY so much for the detailed, helpful reply.
My main problem was that I was totally ignorant of the disease when diagnosed. Didn’t know what questions to ask. Why the mystery- I needed facts. Terribly frightened and sooo sick. Drs did not explain anything....
TY again; I will work on your suggestions!
Hi, in between my first appointment and follow up appointment I went to an RA education session at the hospital which was very useful, do they do that in the USA too? Otherwise if not, there is a lot of information on the NRAS website that may help answer some questions (it's a UK organization but still useful for you)
All the best.
Hi, im Maureen been in this site sometime now but never posted. Hope you dont mind me asking but what hospital does the education on RA . Im currently in Doncaster/ Rotherham.
I was diagnosed 3 years ago with palandronic RA which has now become full on RA. Had to stop first 2 dmards due to side effects ,now been given Methotrexate, but a bit reluctant to take them any advice
X
Hi, I'm in Oxford, they offer a session to all newly diagnosed with RA. It was very useful and had a Q&A part and NRAS were there too. I'm not sure if all hospitals do it?
I think with Methotrexate just give it a try, it didn't suit me but many do well on it 👍
I’m also under Oxford (NOC) was diagnosed 3 weeks ago but not on meds yet. I was very impressed with first diagnosis appt but my referral to haematology was lost and I had to chase it. Hoping once on the meds I feel better. Would like to go to an Q&A session so will ask about that 👍
What’s MDD?
Anyway, I’ve found that this having this disease means you need to be quite proactive in dealing with the medical world and managing it. My experience has been that some doctors will only provide what you ask for, as some patients actually don’t want to know details (strange, but true!). So you need to ask. And you need to do as much self-help as possible as the more you understand the easier I think it is to manage the disease.
The first year is generally totally horrible, but once the disease is controlled and you work out how best to deal with it most people can get back to a normal or near normal life and it all becomes routine. One step at a time...
Thx. MDD is major depressive disorder.
Thanks, not an acronym I know..
I am in Chester and they run a confidence inspiring education session for patients before they start taking methotrexate as well as RA info. I was very loathe to start methotrexate but a year later and taking methotrexate and sulfasalazine I feel so much better. I also had physio but it was of little help although the occupational therapist was brilliant.
Hello Hisue
I'm sorry to hear this. As NRAS are based in the UK (we moderate this forum), unfortunately we don't have the expertise to help you with the standards of care over in the US, but I wonder if you have been in contact with a US based organisation, such as Arthritis Foundation: arthritis.org/
Might be worth seeing if they can help you to address this with your healthcare team.
Kind regards
Victoria
(NRAS Information & Support Manager)
TY. This website is terrific & the people so helpful. We do not seem to have rheumy nurses here in the US- No Rn or Md has spoken to me about a treatment plan- just written scripts & taken blood. Evidently, the only place with high standard of care & rheumy nurses/RA team would be a US hospital with a specific reputable Arthritis Center. This is a real shame.
I don’t know why socialized med is denigrated here in the US- my care has been awful, and for profit.
Arthritis foundation I okay, but not as good as this site, imo.
Bananas- and I don’t just mean RA
Hello everyone, this is my first time. Does anyone know anything about "End Stage" RA ?
A surprise that i dint see comeing
Finally found something that works for me
Don’t know what to think
