Help please its driving me crazy: Hi all im on... - LUPUS UK

LUPUS UK

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Help please its driving me crazy

willowwag profile image
7 Replies

Hi all im on hydrochloriquine this is my 2nd week, i am feeling like i have been hit by a bus will this get better, also last 3 days i feel like someones hit me on the right side of my head and i have a strange crackling,popping sound when i swollow its driving me round the bend, does anyone know what this is. Hugs

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willowwag profile image
willowwag
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7 Replies
tjperfick profile image
tjperfick

I sometimes used to cry with the pains in my head in my 1st few weeks of taking the tablets. The headaches are a lot more manageable now (after 10 weeks) and I even have the odd day of not having one, or so slight they don't even bother me. take care - it will pass. Julie xxx

willowwag profile image
willowwag

Thank you so much tjperfick it really eased my mind xx

gazorpf profile image
gazorpf

Hydroxychloroquine takes 4 to 6 months to reach optimal levels in the blood. It's not like pain relievers that work in 20 minutes or antibiotics that work in a few days. Your symptoms are not from the drug. Lupus takes time to develop and it takes time to come under control. I know it is difficult, but you have to be patient. The more frustrated you are, the harder it is to control the lupus.

lanie2013 profile image
lanie2013

I had similar experiences when I started taking medication... felt like I'd been poisoned and my symptoms got worse... after 4-5 months it did calm down a bit... it is very frustrating but gazorpf is right it takes time and I feel a lot worse when I stress about it.... hope that helps :) remember you are not alone I take a lot of comfort from that every day and especially on my bad days :)

Voutton profile image
Voutton

Hi I am the exact opposite I have nothing but positives for plaquenal It was a life saver for me and along with my pain killers and anti inflammatories I was able to carry on working I hated when I was taken off to for aq break as my symptoms worsened. I have now been on it for over 20 twenty years and def feel the diff when on a break Even tho I'm on. Steroids now for the mo I am still on my plaquenal . I do hope it works for you Take care and have a good day :)

willowwag profile image
willowwag

Thank you all for your posts its so good to know your all here xx

Looby profile image
Looby

Hi W - Yes, stick with it - at least for a couple of months and then, if you are still suffering as badly - have a chat with your Rheumy Nurse (or GP, if you have a sympathetic one!) There ARE other drugs available to treat the symptoms.

I've now been on Plaquinel for over 2 years (it took several weeks before the swelling reduced in my joints - but now they rarely get inflamed, just very stiff in the mornings).

Because of acute headaches, a Neuro Specialist advised me to stop taking them for 3 weeks - wow! did I regret that! The pain in my joints was worse than the headaches (which I still had, despite not taking the Plaquinel...). It then took about another month for my bod to settle down again into something more manageable.......

One thing I did find helped, was to split the dose - so I took the first in the morning (on waking) and the second mid/late afternoon.

Hope this helps!

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