Flare up after rheumy stopped my hydroxy, anyone else had the same?

[TwitchyM]

Hi all,

I’ve been on hcq for the last four years while rheumatology try to figure out whether or not what I have is lupus or APS ( it runs in the family and I meet a lot of minor but not enough major criterion). On Monday, over the phone (alas in Wales face to face appointments are a thing of the past), my rheumy stopped my hydroxychloroquine because my symptoms for the last two years have been stable and my antibodies were low on my last blood test…which was done two and a half years ago. I’m told that the fact my symptoms are unchanged recently means this is not autoimmune, despite the fact that pre hcq they used to be worse. (Honestly their logic was lost on me at this point.).

Anyway, five days after stopping taking hcq and (surprise surprise) my symptoms are back with a vengeance, the worst they have been for three years at least. I plan on getting right back on the phone to rheumatology (alas they only accept voicemail). In the meantime I’d be curious to know if anyone else has had a big flare up right after coming off hydroxychloroquine and if so, any tips on how to communicate this to the doctor without sounding loony?

Unfortunately I’ve got a lot of experience of doctors dismissing my symptoms as being in my mind, and it worries me that this will happen again. I’ve been accused of lying and had my symptoms dismissed as mental trauma (I haven’t got any) before now by other doctors which has left me with little confidence in doctors listening to anything I say.

Sorry, long winded!

[Cowgirlsassy]

well first off let’s get this one thing very straight. This is some thing I had to learn as well because I had years before they were diagnosed me with fibromyalgia and I went to several doctors. It said I was just looking for pain medicine. Well I used to be afraid to ask the doctor for something to help with the pain to test me for different things like I showed him all the symptoms what I had and finally I had to go to another doctor that finally listened and I got diagnosed with fibromyalgia that since turned into deterioration of my spine and other things but just let me tell you one thing I learned they work for us in the doctors we don’t work for them so in order for us to have a good working relationship if you want to call that and you have to both agree now if you think that they should take you off that medication prematurely you can always go get a second opinion and I would suggest that you do so because if you been fine for two years on it, why would they want to stop some thing that was working that’s really don’t now if you think that they should take you off that medication prematurely you can always go get a second opinion and I would suggest that you do so because if you been fine for two years on it, why would they want to stop some thing that was working. and I don’t understand this I take Lyrica I’ve taken it for over 15 years and my doctor decided this is a newer doctor now because my family doctor decided that maybe I had more conditions that he could deal with as a family physician so I went to this doctor and she wouldn’t refill my Lyrica one day off saying out of the blue. She said she’s not gonna fill it, and told us that she never did fill it for me. I had the bottle with the proof on it and pharmacy with the proof, but she decided to make me wait five days without the medication putting into withdraws thatit for me. I had the bottle with the proof on it and pharmacy with the proof, but she decided to make me wait five days without the medication putting me into withdrawals. That could have killed me taking me off that cold turkey like she did well then when we went to see her on the following Monday after the weekend was over she proceeded to say she’d fill it for three months, but she wanted proof that I had a deteriorated home, which was in my files no invasive procedures, well she decided she still needed proof even though I walk humped over permanently well she slammed the door when she left the room and then she came right back in the room and said to us that if we wanted to find another doctor that was fine with her, and that she went and slam the door again when she left the room while I promptly fired her and went back to the doctor. I was seen before it was like going back to family. After being there. Care of that lady. I wish you luck it’s not easy.

[Tiggywoos]

really interesting post Twitchy . I’m afraid I don’t understand enough about hydroxy to comment on wether or not it would come out system that quick.. but ..

I was told to reduce down to 200mg a day from 200/300 every other . I have to say my wrists/knees/shoulders and feet all have been worse . It was suggested I do this as my lymphocyte subsets were low and apparently hydroxy can do that. I reduced the dose about 6 weeks ago but noticed a change quickly like you . Was this is coincidence ? Who knows .

I totally feel for you and agree about worries of not being listened to . Take care and let us know how you get on xx

[Barbara17]

Hello TwitchyM. I have SCLE and my dermatologist decided to stop my hydroxy once I was tolerating mtx. I flared within a few weeks so she put me straight back on it. I’ve been taking hydroxy since 2015.

[JamieWth]

Good grief!

Get a new rheumatologist! I stopped HCQ several years ago and I went into a flare.

Write down all your symptoms, even better keep a diary of everything. Go back and insist on being put back on HCQ.

Good luck

[CecilyParsley]

I had to stop Hydroxy three years ago when I developed macular oedema. I had been on 400 mg for nine years without issue, then a new Rheumy increased the dose to 600 mg. After eight weeks I was struggling with my vision. I was taken off it and not able to take it until the fluid cleared at the back of my eyes. My fatigue increased in a matter of weeks but I also had a strange side effect. My asthma which had disappeared once I commented Hydroxy came back with a vengeance..blue lights the lot. I have finally been restarted on a lower dose of 200 mg. My asthma is controlled for now. No one can explain it but I do think our bodies do not necessarily respond they way they should. Get your GP to email the Rheumy and call the helpline. You need a re assessment in light of your symptoms. Good luck xx

[Krazykat26]

I was first prescribed hydroxy 400mgs which helped my symptoms along with topical meds from dermatology. After about 6 months dermy advised I reduce hydroxy to 200mgs daily. Within a couple of weeks I was flaring !! Dermy nurses were incredibly difficult to get hold of and I ended up on Prednisone when I finally got to see dermy again. I'm now on 300mgs daily and if a doctor advised me to cut it down or come off I'll smile politely n say "Nah..been there..got the t-shirt thank you" 😹I hope you get it sorted soon as possible 💜🌈 xx

[Dhewitt215]

Hi! Don't know if I've actually posted anything here or not, but I do read it all!Anyway, aside from keeping a pretty much daily journal, ( a result from my LT insurance trying to deny my claim after 10 years!...story for another day), I also take pictures with my phone and put them in a dated folder. Seems rare to have the severe flare ups match up with appointments. Just my 2 cents. Good luck from Londonderry, New Hampshire!