Reduction of Hydroxychloroquine after 20 years & side effects?

[Mrsdoozer]

Hi Everyone,I hope you are all keeping OK and safe xx I have had SLE & Sjgreons for 20 years . I have been on Hydroxy all that time from diagnosis. My new consultant of 2 years has tweaked my meds over that time taking me off steroids and putting me on Azathiropine. At my recent telephone appointment he told me he wants me to reduce my Hydroxy down to 200mg from 400mg. No explanation as to why , and stupidly i didnt ask !! After the first two weeks i started to feel unwell and have problems with swollen joints & stiffness and feeling generally unwell so i called my Rhumatology helpline . The nurse told me it was very unlikely to be the reduction of Hydroxychloroquine but would have a chat with the consultant. Long story short they decided that i should alternate my doses one day of 200mg the other 400mg. So we get a further two weeks down the line and i start to feel like i am coming down badly with a cold or flu headaches ,aching body, glands up so very tired and emotional ,mouth ulcers, hair loss, twinges in the kidney area of the back and having to push myself through the days and falling into bed exhausted, .Two days ago whilst getting in the bath my husband notices a very angry rash across my back , i figure its probably while i am not feeling well it will gone by the morning the usual transient Lupus things we all suffer at times . Only this time it didnt go the morning arrives and it is still as angry and visible and i feel light headed and sick & ache like mad . Made appointment to see GP he thinks i may possibly have shingles on the way but there are no blisters visible yet. I had bloods taken yesterday and i am awaiting results. I still feel awful no visible blisters today either, but rash still angry and hot .Personally i dont think its Shingles but a Lupus related thing. Has anyone else struggled with coming off hydroxy and what effect did it have on you? Where you given something else to take in its place ?I am already on Azathroipine, Amtriptaline, Simvastatin ,the Azathiropine keeps making my neutophils drop very low . I would be interested to learn of your experiences xx

Keep well and safe my fellow Lupus Warriors xxxxx

[Barbara17]

Hi Mrs. In short, YES! I have scle and Sjogrens. My new consultant decided at the beginning of this year that I should go on to methotrexate and discontinue hydroxychloroquine. I wasn’t too sure about the sudden change so gp and I decided to keep on with hydroxy for a couple of months. In April I stopped hydroxy and over the next three months all hell broke loose. I felt so ill, sick, dizzy, extremely tired, couldn’t eat, pains everywhere. I couldn’t get in touch with consultant so gp told me to stop mtx until we spoke to her. This left me on no medication at all. Within a week my skin had flared all over my back and arms! I still had some hydroxy tablets in the house so I started taking them myself before managing to speak to gp and it is now slowly clearing the rash ( with the help of prednisolone) . I am so annoyed about all this as my skin was clearing nicely and I know how long it takes.

I’m not sure how long you can stay on hydroxychloroquine but it does seem to be the only thing that keeps my symptoms at bay. I have to be careful as I am not a big person and can only take ten 200mg tablets a week. But the difference it makes is huge.

I was told my symptoms couldn’t possible be hydroxy withdrawal but it very clearly was. When are these doctors going to start listening to us?

Rant over - hope this helps

[Mrsdoozer in reply to Barbara17]

Hi

Thank you for getting back to me ,so sorry to hear of your experience i hope you are ok now and feeling better, it sounds like you had a terrible time with it all x You have made me feel so much better in that I am not alone with all this. Not good in that you experienced such an awful time but that what i am feeling and experiencing is very real and that i am not going mad. I think one of the worst things about it all is that those who are supposed to know all about our problems almost call us liars ,yet the facts are are staring them in the face. The Rhumey nurse told me yesterday to speak to my GP today as he has seen the rash and been dealing with me. My blood test shows no viral infection but the rash is still very present .My GP quite rightly said if its not viral or Shingles its most likely due to neutropenia so why are they not sorting this they are the ones putting you on the medications that are causing this, I cant over rule the Consultant?! I have to say I agree ,the rash is still very much there and i still feel awful . My neutrophils are down to 1 on my blood test (they have been low as .8 in the past ) but nothing gets done about it i am just left and that was when i was taking my hydroxy normal dose. I just happened to mention to the doctor that my chest is a little tight at the moment , like i cant take a full breath not something i have ever experienced before and he sent me for a covid test. He doesn't think i have covid but it has to be ruled out before i can have another blood test on Monday. I should have the results Sunday and we have to find a way forward from there . I am hoping the rash would have gone by then and I will feel better ,but it still leaves the fact that my medication needs sorting. I feel i am up against a brick wall . My old consultant was of the mind if it works leave well alone . The new consultant says it cant possibly take effect that quick the reduction of Hydroxy , i thought he knew that as Lupus and Sjgreons patients we dont always display symptoms by the book its very much an individual thing and my body is telling him loud and clear he just choses not to see or listen!! I am so fed up with all this and feeling rubbish all the time.

Keep well and safe

Angela xxx

[Barbara17 in reply to Mrsdoozer]

Hello again. As I said I have SCLE - the lupus affects my skin and that is what causes the rash. Not low white blood cells. Although I have that too!!! My record is 0.65! I’m not a doctor therefore can’t make a diagnosis but if your rash is SCLE it will not go by itself, nor will it go in a few days. I think you really need to see a dermatologist ASAP. Are you in the UK? I had a telephone consultation just a few weeks ago so it is possible. Google SCLE and you will see pictures so you can be prepared before you talk to your doctor