New Rheumy on 24th: For those that had to start all... - NRAS

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New Rheumy on 24th

Someonesmother
Someonesmother

For those that had to start all over again with a new rheumy, how did you find it? Pros, cons, tips, experiences, would be welcome as I have managed to get a cancellation appt with a new rheumy on 24 Sept. I am going to go to my GP to get a range of blood tests so I at least have those to take with me, but I am literally starting from scratch again after 6 years. Sooooo not looking forward to it.

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Hi, beautiful picture :). I have a new Rheumy who I have seen twice in the last year. She is very good, better than the one I had initially. Better in terms of communication skills, and compassion. She said words to me that meant alot! ''Any problems contact me" . Also more thorough in examination of joints, tests etc. Feel like I am moving positively forward with her rather than taking a cocktail of tablets every day and feeling worse as time went on. I hope your new Rheumy is as refreshing for you as mine is. Best of luck X

Someonesmother
Someonesmother in reply to Shalf

Thanks. I had a great one he just decided to ditch me without any explanation.

I've only been diagnosed with RA since November 2016 so relatively new to it all and have only had one rheumy. I can't imagine having to start again with a new one and really feel for you. Wishing you well for 24th

J

I have had one I saw but he ditched me, the others are just registrars at the hospital who drive me up the wall

Perhaps a new start with a new rheumy will be just the thing you need, fingers crossed x

I would cross them if they weren't so sore and stiff heheheheh

It just like when you first started except that you have more experience! Take your own records of what has been happening, the photos, your records of what treatments you have been on and your response to them.

I have moved around the country so had to start again with new rheumy teams - and they do vary a lot.

The only records I have are what I remeber and that is difficult as I have been through so much. I can't remeber half the stuff that I have done. eekkk all my records are at the hospital and they don't rerlease them as they consider them theirs not the patients.

You can request your records but may have to pay a fee for them to be photocopied. The problem is time - it often takes ages to get them from a hospital. You could ask your GP - that would be quicker and would give you the copies of the letters sent from the rheumy to the GP - that would help as an aid to memory. Your records are yours you have a right to see them.

I do keep my own records because of having moved around!

I think I am goingve to start. I can probably get the letters but the ones he ahs showed me don't say much. The hospital will not release records to a private dr outside their system, I asked once before. You can put in a request for them, it is a few hundred dollars and most of it redacted, so a bit pointless really. I agree it is about me so it should be given in full to me. I guess I may have to cough up the hundreds to get them

this is the link england.nhs.uk/contact-us/h...

I'm in Australia, so it is state by state due to legislation in that state.

Sorry for not remembering! Worth getting the letters, though and then writing down yourself what you can remember,

No worries, I wouldn't expect you to. I am going to have to do that as a stop gap measure.

I've had to do this a couple of times now and I hate it! Especially leaving my first one who I loved.

Don't worry about not having everything, as new rheumy won't have time to read it all on first appointment. Aim to put together one side of A4 with main points... when diagnosed, drugs tried and failed, current drug list, operations you've had done, other medical conditions.... and most recent blood tests if you have them, and x-rays/scans.

If you go to your profile on here and look at that you can find what you've posted over last 6 years so that will give you a reminder of some things!

Thanks Helixhelix. I am just not looking forward to starting over I guess. I have no copies of scans etc as they were all done at the hospital. That is the frustrating part, not having access to anything like that. I guess I have some homwork to do heheheh

Hi SOM. Although I have been treated by the same health trust in 33 years, I've had 3 consultants in that time and luckily they have all been good, patient and understanding. I can understand your concerns, as I worried with each change. Good advice given to you already, just wanted to say all the very best, so you can move forward. X

Thanks Gigi71, it is the starting from scratch stuff I am not looking forward to considering no one really seems to know what is wrong.

I can understand how you feel it's been a long battle for you. A fresh start, fingers crossed this time a rheumatologist that can join all the dots up and give you the treatment you need. Please keep us updated. X

I am not on anything at the moment as the cosentyx, while it worked, caused so many chest infections that I have had 11 weeks off in the past 12 months adn that is way too much time off work. I hope there is something else that I can take because I am flaring badly at the moment.

Hi SOM. I just looked up this drug and yes I can see this listed as a side effect. Not being on anything before seeing a new rheumy is helpful for them to see you at your worst, I know not helpful and painful for you though. I have had two breaks from my RD meds in the last year due to risk of infection and the last one infection, I am still waiting for my rheumy team to give me the okay dispite my leg ulcer has now healed. All takes time. I have written an told them I've gone back on them. All the best this time. Take care. X

yes I will be at my worst I am flaring badly. Yes the side effects of the drugs acn be awful and I am Ok with most of it, but 11 weeks off work in one year was just too much.

It wasn't the drug for you. I wouldn't have lasted that long. Xx

Sadly no, but it did work well and reduced swelling, pain and fatigue. Just the side effects of chest infections and severe asthma that it triggered that I can't do any more.

That's something, just not the side effects, hopefully the new rheumy can build on that. Good idea to be prepared with all your blood tests and as much info as can be discussed at your appointment. We are all so different there must be a med for you in this day and age. Xxxxx

I really hope so.

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