Hey ladies and gents,with mild lupus, how often is your rhumetologist suppose to check your blood? I was diagnosed end of June..on plaquenil

i was only checked in june and first blood tests.(with Rheumetologist)..saw him september..he said nothing...my gp thought it weird no more blood tests...when i go back it will be at 5.5 month mark......Afriend thought i should have had some in 3 month period......Im more tired now, than i was back then............Plaquenil cut to 1, funny side effects on 2 pills. But my thyroids freaking out too..hypo, but if they touch meds it swings pretty quick to other way...

22 Replies

  • When first saw rheumatologist blood was checked about 5 times in first three months, then it was supposed to be every three months, now it is every six. Trouble is I have had 3 different GPs (because I have moved and one GP moved) and I don't think anyone is keeping track. I am to see Rheumi in January, last saw GP (she was new to me) she really didn't spend more than 5 mins with me, so I am concerned that I might be lost now.

  • yes my gp moved away..and now im seeing whoever sees me, which not good. But this one gp seemed concerned i had not had rhumetologist tests done since june...i dunno, they should tell u...i been feeling really tired, yet im on plaquenil...I live away from my rhumeys town, but i can email the receptionist, but answers are one worded. i asked if plaquinil can make you tired, plus wrote how i felt etc. She said doctor sais it can, but rare. So no please come in..no nothing...I was the one asked am i suppose to get eye exams? oh yes...what if i didnt know that? meanwhile been referred, but still hear nothing when to come in...tired of calling the eye guy....but the rhumey hmmmmmmmmmmm.

    Forgot to say thanks Chapter...Thanks:)

  • I have mine done every three months, however it's more or less left up to me to go and request them at my GPs, I then keep copies of the results and take them to my rheumatologist appointment which is usually every 6-9 months depending on how well/ill I am.

  • well im in canada now....my gp wont do them, but he did tell me that the rhumey sent him the initial blood tests from June. Gp was puzzled why he had not recieved anymore..i said he hasnt asked me to come back..he said keep in touch with them! When I finally go back it will be 5.5 months...

  • i have blood tests every month. i have RA and mild lupus.

  • and sounds like you also have a good doctor too!

  • They usually start you on 3 monthly then 6 monthly and cann be up to a year if stable. That said, anyone taking Methotrexate or similar will have their bloods tested monthly as I do. You would normally expect to have both your urine and bloods done at every rheumy visit at the very least.

  • funny..he never did a urine test, but maybe at the time cause not on the meds yet.

  • I was first diagnosed in February and had another blood test in May and August. next one due in November.....my rheumatologist said I should see the lupus nurse 3 monthly and should make sure my bloods are done before each appointment. .....I guess im lucky as my GP is very supportive. I was also started on hydorchloroquine and it took nearly 6months before I started to feel the benefits so I'd hang in there! .....maybe talk to your GP about being referred to a different rheumatologist.

    Good luck xxx

  • im in canada now..takes forever to see anyone.....plus my gp moved back to south africa, so i have to see whoever is available right now...its a big ol bummer!

  • I fell out with my rheumatologist. We argued about the worthwhile-ness of me seeing a neurologist after I inexplicably collapsed, lost all feeling and movement in my legs for two hours, but didn't lose consciousness, then X-rays showed I'd broken my leg. He rubbished this incident as not worthy of further investigation. I asked, if his wife experienced the same, would he also suggest doing nothing. That touched a nerve. So I got to see a neurologist. But the rheumatologist doesn't want to see me for one whole year.

  • I have mild stable lupus so only see the rheumy nurse once a year and bloodwork once a year too. I have a spare form and option to call for early appt if needed. Am on plaquenil 200 one a day and have been for 15 years

  • Hi dgleds

    I would request an appointment with a gp, (anyone who is available, your notes will be there) Explain your situation and your fear of being lost in the system and ask for another referral. Ask for bloods at the same time, if your surgery is connected to the rheumy hospital, the results will be showing there too, especially if you ask the phlebotomist to cc rheumatology department.

    You should see either an optician, (most opticians take a photo of the back of the eye, check if he is able to do this for Plaquenil and take the report with you for next rheumy appoinment) or contact eye department urgently. They need to take a baseline to measure your future checks, which should be done at least annually. If your gp is unfamiliar with Plaquenil, be firm and show him the leaflet that comes with it where it says about the importance of eye examinations.

    Who reduced your dose? If it is not suitable for you, you should be given an alternative depending on your bloods.

    If you are feeling really poorly, ring the rheumy department, they hold emergency clinics, it may not be your rheumy but you will still be seen. Again they have your notes and can help you.

    Do not let this drift, humans make mistakes and it could be just down to simple omission. When I was particularly frustrated over the lack of response from the hospital, my gp told me the more people that get involved with your health and treatment the more the likelihood of mistakes in your care. You have to be pro-active and look after your own health. Get copies from your gp surgery for every blood test and outpatient letter. If you disagree with something, get it corrected.

    You are important to you, but you are just another patient in the NHS.

    Look after yourself is not just a saying, it is true.

  • ok..so as of now, im mild lupus..and had to be reduced over the phone to plaquinil 200mgx one a day...it made me ill at 400mg...brown pee/headache/no appetite...i still think he should have seen me at 3 months for bloodwork at least the one time...then maybe less later. Im new to the stuff and lupus.

  • well im in canada now, but i did write the rhumey secretary....they seem so vague. My last visit to the rhumey was at 2 months after he did intial bloodwork in june, because they ultrasounded my legs for bakers cyst/or clot..he said nothing about nothing really, and was almost shoving me out the door. After freaking about everything and scareing me, when he first met me, he now said its mild lupus...He said cant make an appointment yet with secretary, she will call u. Well I thought this is odd and holidays are coming not far off, so called them pretty quick after that. I thought, he wont see me again now as I been there in september, so asked for 3 months from then early December...but they seem so vague and casual. No one seems to be thinking, hey she is new and on the meds????My gp seemed puzzled by it too..he said keep in touch with them at the rhumetologist office.

  • gp wont give blood tests for this...leaves that to rhumey over here...and gp says they will only do a blood panel (like in a physical once a year) My old gp apparently did one in May before i was sent to a rhumey...so at my yearly physical,they would not give me a bloodwork panel...

  • They should test your urine at every appt to check for kidney involvement. Don't be misled by term Mild Lupus. This can still have a massive impact and require complex medication treatment. Good luck

  • Im gonna bring it up to him for sure...I was on list to see 2 lady rhumetologists, but they were so booked..The sweet secratary at my orthopedic surgery pulled strings to get me into this guy....i was lucky to get in somewhere...but....

  • Hi, Ive been checked every month at the moment ...but this is by my Dermatologist (she gives mre the blood forms to have done at my GP surgery. Ive an appointment next month to see the Rheumatologist ... not sure whether its because on on a mixture of medication including steroids? But i was lead to believe it to check whether your meds are affecting the liver or any changes in the full blood count -x-

  • When I was just on the hydroxychloroquine it was every 3/4 months and I was frustrated with this as I felt as though I was in a permanent flare up whereas now I am on methotrexate I have bloods taken every month at the GP surgery and they are forwarded onto my rheumy. The link up between the GP and rheumy is very good. Mind you this occurred after I had to swap my initial rheumy who was reluctant to diagnose and prescribe immunesuppressants. With the new rheumy I was diagnosed immediately, given stronger meds and blood tests done monthly and I see the rheumy every 3/4 months and have my urine done there too. I also have a rheumy nurse too that I can call when I am in a flare and GP advised to give a steroid injection if in a bad flare up. I really feel that I am now being looked after well but I had to request a different rheumy in January and since then I have not looked back.

  • I get checked every six months.

  • I used to get checked every 3 months. Now that my lupus is still there but not active the last time they tested so every 6 months I get checked and have blood works. If I don't feel well I can always call and they would get the blood form ready. Plus I can see him early if needs be.

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