unbelievable trip to the Rhumey

Well...Ive been on plaquinel for about 1.5 years, because the rhumey insisted i have lupus....Im also hypothyroid...I tapered the plaquinil to a low dose, with the rhumeys permission...He is so back and forth with issues every time i go visit him...I had a list of concerns for him, but he said not due to lupus...Then he turned around and said, "you should go off the plaquinil (hydroxy), because you are very sensitive to drugs'????(I was having like a skin burning feeling in private area, and top tummy buggin me) Not sure if thats the sensitive he is talking about...(in the beginning on high dose plaquinil i had brown urine, headache, no appetite, but he insisted to cut down, and keep going). This was the guy who wanted to push big doses of prednisone on me, and plaquinil a year and a half ago...He asked if i was on any other meds (just synthroid and vit D), occasional diclofenac....and told me to go off the plaquinil...(no replacements were mentioned)...I go back in 6 months. Meanwhile I had tests done by his lab and I have bilirubin in my urine in trace amounts, and ketones in trace amounts....(so im seeing my GP student doctor to redo those in few days, so not to worry)...Its a bummer, cause i dont have a regular gp of my own to put it all together with...(a shortage of gp here)...

ps/had a urine culture done in October and it was negative..

so was bilirubin and ketones negative in october too....

11 Replies

  • Sounds bad news re not having a regular GP to help you put it all together. I had to come off Hydroxichloraquine eventually because it made my face swell and caused a really sore rash too. I'm off all DMARD drugs myself and my rheumy just sits on the fence with me - agreed to me staying off all drugs because of intolerences.

    Haven't had liver problems apart from several times with methotrexate but I hope you get a good student GP although this sounds far from ideal.


  • Thanks Twitchy....

    Im just going to have to push for tests, and keep my eyes on things....Some times the student Gp are more willing to send you for tests, so like a mixed blessing...It helps knowing a little bit about medical stuff, and if you don't, you learn fast with all this lupus/thyroid etc etc stuff...

    I think the rhumey jumped on things fast in the beginning....He never said this, but I think he is back tracking....I guess I will take it a day at a time...I was going to go look for some work (a few hours), but if I start feeling gross again, it will be a long time getting normal again...I get disability right now, but its not much....

  • My rheumy is probably going to back track from my RA diagnosis of three years ago next time I see him. I wouldnt be surprised if he started talking about Fibro soon but I will have a fit if he does! Neither my rheumy or neuro consultants have ever mentioned my hypothyroidism once so I forget about it too. It's usually an afterthought for me but perhaps it shouldn't be.

  • Hey twitchtoes. Thyroid issues as common with Lupies. In hindsight for me signs where there a year before I got really sick. I think you should check out or keep and eye on it. I am still on Synthroid 50mg a day (my weight settled out at a good place) Plaquinelle 200 mg a day and mycophenalate 2000mg a day. Off all steroids now for a month. So far keeping steady.

  • Thanks Abby - I have had my thyroid checked every six months/ year and it comes back within normal range although on TUK HU they say I'm undermedicated on 100mcg Levothyroxine. I have had the idea to buy NTD online and tell my GP I want to give it a go instead of Levo - which I've been on for about 15 years now. I'm desperate to address the small fiber neuropathy/ Erythomelalgia and if my lumber puncture and blood results come back next week as normal then I will push to try a different approach as I'm very sensitive to many chemicals and it could possibly be something in the filler or that I need my FT4 to be higher within the normal range than it has been for ages. I've already asked my GP about this but he says my thyroid is well controlled presently with Levo and won't entertain the idea of prescribing NTD. I know thyroid issues are also very common with RA and all autoimmune diseases - including crossover ones. I wish these doctors would be more lateral minded and holistic!

  • I wish so too..

  • I think it all ties together...

    But I know my Rhumey and "GP whoever", seem to brush it off as well...My thyroid was on the move a bit making me over medicated up and down....The thing they really seem to not mention is Menopause,..or Post-menopause, its like it never happens or affects things...so strange.

  • Hey dgleds. See my reply to Twitchytoes. Its and ongoing battle isn't it? Seems like no hard and fast rules or treatment for everyone. I was old when I was diagnosed (60 years old) so thank heaven was already done with Menopause. Didn't even consider this and first mention was your post above. Love this site as have learned so much.

  • Maybe you should be tested for G6PD. I've been on hydroxychloroquinne 400mg for 21 years without any problems, but when I had my son a few years ago he was desperately ill. It turns out he had G6PD which causes people to have bad reactions (anaemic, high bilirubin levels) to hydroxychloroquinne- he was absorbing it through my breast milk and reacting. Had to stop breast feeding. Get checked.

  • Im getting a re=check on the billirubin/ketones today...Hopefully they take it from there, cause the student GP are pretty fair with testing....I need my own GP and hopefully one comes along soon...I think my Rhumey just assumes my test results are picked up by a GP and looked at, but not always the case....I can see my tests on line here in BC, then I make sure someone takes note of things out of range...its a big bummer, but I stay on top of it...(as much as possible).

    Thanks Joyjo for the tip ;)

  • Now the bilirubin has disappeared, and the ketones thank goodness!!!! But I know have leukocytes in my urine is it A C 15..or similar....LOL....crazyyyyy ;(

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