First appointment for the rheumatologist

[reeneroo]

Could someone please give me a clue what to expect when a see the rheumatologist for the first time a have a lot of symptoms to suggest I'm suffering from lupus just a bit worried any help I would really appreciate it xx

[Calafia]

Hi Reeneroo,

Sending hugs. My first appointment with a RA Dr was all about assessing the symptoms I had. A physical exam of joints, skin condition, potential hair loss, etc and the mother load of blood tests. They are trying to figure out if you have RA, SLE, connective tissue issues, or other so you can be properly treated.

Can't say not to worry because I worried too, but now 2 years later I'm coping well. I definitely went through the phases of denial, anger, bargaining, depression and acceptance which took me about 1.5 years to go through. I didn't go to a support group because hearing about all the things that could be wrong just gave me more to worry about.

Also, I started eating better and felt unbelievably better as a result so suggest you give up processed foods (preservatives, sugar, etc) to decrease the inflammation in your body. Yeah, it was hard for me to do that, but I feel so much better.

Calafia

[BellaC79]

Reeneroo,

Do not worry they will ask you for all your past medical history, if parents and siblings have any symptoms. Then ask you all your symptoms- definitely write them down so you don't forget any. Any joint pain, burning joints, hair loss, rashes, if joints are stiff in the morning etc Try and describe how long you have had the symptoms and if you take any medication to relieve pain. If you are tired, fatigued or have breathlessness or chest pains. They will do a full exam of you joints, so you'll have to change into a gown for that. Then blood tests, possible chest xray and they will probably give you suggestions of what your condition may be and what other tests/ specialists you may need to see. Ask any questions and try to take notes as they tell you so much...sometimes its hard to take all their information in. Hopefully you will get some assurance and get the required treatment. Then follow up can be one month, three months or six months if they are monitoring you. I have a mctd of sjogrens and sle, i follow a gluten and dairy free diet and avoid red meat and nightshade veg as they fuel my inflammation also. Good luck

[MargaretGail]

write everything down! make a list of all of your symptoms, my rheumy always appreciates it.

[PickledGinger]

Hi, it's also really important that they answer any questions you have, so go armed with a list and don't leave until you're satisfied. Auto immune issues are complex and scary so make sure you're completely comforted and happy you have all the knowledge you need. Also ask if there is a Lupus nurse available for concerns, I have full access to a wonderful nurse any day of the week and all I have to is call, so do ask if one is available. That to me is my lifeline. Good luck.

[Bonnie39]

My initial rheumatologist appointments were wrecked by a dangerous dr at St Ts who dismissed me out of hand and ignored all my bloods and symptoms and basically said nothing was wrong with me. Subsequent rheumatologists have based their dx on his dangerous letter and alsi discharged me. If your dr makes a decsion without intetest or regard in your symptoms or test results, please please seek second opinions.

The dr at St Ts even said that despite +ve ANA, lupus anticoagulant and antiphospholipid blood results and history and evidence of early stroke (at 31) and many TIAs, I do not have antiphospholipid antibody syndrome. Thankfully had already been dx with that and put on lifelong warfarin. St Ts advised I stop warfarin immediately. My excellent thrombotologist reviewed my notes and has counteracted his letter. She reconfirmed APS with other autoimmune conditions (hypothyroidism, Reynauds and a.n. other). I am now restarting investigations into the sle etc I am convinced I have.

I guess what I am saying is, do not allow them to stop you telling you what is wrong.Sometimes it IS lupus. And sometimes you know your own body best.

if your rheumy is unhelpful, please dont shy away from a second opinion. All you need is one medic on your side in your team. I am lucky and have an excellent thrombotologist and neurologist in my team.

Stay firm and dont be afraid to ask questions.

[Wendy39]

Hello reeneroo. I was very worried about my appointment with the Rheumatologist and took lots of notes with me, to help jog my memory - which is terrible with the brain fog. My Rheumy was lovely and very thorough, which was very reassuring. As the first appointment she gave me a thorough examination and asked lots of questions. She definitely took the lead. I did ask some questions and add some things. I took my husband with me too, as he was able to add things or symptoms I forgot to mention. She made lots of notes. I was then sent for bloods (13 vials) and 3 urine tests. I also received appointments for hands/feet/chest x-rays, an ECG, an ECHO cardiogram and a lung function test. But I guess it depends on what symptoms you have. I then had to wait just over 4 months for the follow up - when she talked about the test results and her diagnosis Subacute Cutaneous Lupus (SCLE). The various departments that carried out the ECG etc did tell me that if anything serious was found I would be contacted but even so the wait for the follow up was horrible. I am now seeing her in 9 months time and I have instructions to reduce my medication of 400mg a day hydroxychloroquine, at the end of September, to 400mg one day, 200mg the next, on alternate days. I don't think they like people being on the max dosage for too long, due to the risk of damage to the eyes. Anyway, I don't live in an area with the Lupus Centre, doctors specialising in Lupus, or even Lupus nurses, just a general Rheumatologist and a Rheumy help line number, where if the triage style nurse will give you an urgent appointment if necessary. I have only been diagnosed since November and so it is all quite worrying and I am still accepting it all really. I hope that you have a good first appointment and are able to build a good relationship with your doctor. Good luck! Wendy