Could it be the Planqenil?

Hi All,

I have been feeling pretty ropey the past couple of weeks :( and was due to commence the above wef 9th August. Due to picking up a gastro bug that set me off for a couple of weeks, I was told to only start the plaquenil once the bug had gone and I felt well enough to take it.

i have been on the plaquenil for the past 4 weeks - and have never felt so achy or tired????

I am still on 5mg of steroid. i have been complaining of a slight sore throat, inside and outside, i don't have raised glands. My body feels like it has ran into a brick wall or i have gone 10 rounds with Tyson. I don't want to put everything down to the new drug, but did anybody notice that when they started this treatment did it exacerbate the symptoms until your body adjusted to it? My mum seems to think that this maybe a co-incidence and in fact it could be the bad weather that past couple of weeks, being cold and damp - my mum does not have lupus but arthritis and she has been achy herself the past couple of weeks due to the damp and cold also. The tiredness has also come back with a vengeance and a bit of lupus fog , my memory is bloody awful - i have notes for notes lol!

My Rhemu wants me to continue with the plaquenil in order for me to be weaned off the steroids if my body tolerates it.

Any advice would be very helpful.

Lulabelle x

11 Replies

  • Hello. I have been taking plaquenil for around 7 months now. At first it really didnt seem like anything was getting better but now I feel like a different person. My mood has been lifted and I can actually do a little gardening, when the weather is OK! I still get really tired if I over do it and I still have a few aches and pains, but I guess I feel about 80% better than when I started the tablets. I am still on a high dose of gabapentin, but I can go shopping now on my own and do things that I could'nt at the start. I would stick with them. I didn't actually see a change until around the 4 or 5th month of taking them.

    This is an awful illness, and one I still find hard to come to terms with. I do feel for you, let me know how you get on.


  • Hi I started plaquenil in 2007 and had been on it up until jan this year 2012. I didn't feel it helped when I first started but did feel better to start with. But really noticed another difference when stopped it in jan. I actually wasn't as tired and slept all night with no waking which hasn't happened for a lot of years. I have had recent flare so am back to having fatique again doc wants to re start plaquenil but I'm not sure if need too or not. Stick with it for a while but if you don't feel its making a diff it prob is.

    Take care Becks xx

  • i had mild lupus symptoms and put off taking the plaq for a few months after taking it for 3 months i feel like hell. i am flaring for months with no let up. never knew what a flare was before this medication. it does not suit everyone. i had to battle for a long time ti get permission to stop taking it. i feel awful now really ill,fatigued,achy,disorientated,blurry eyes the deposists can affect your eyes.

    glad i dont take it anymore but still falring. worse thing i evevr did was take this...sorry!

  • I have been on them for 25 years and know they make a differance with me. The only time I have any problems was when they put me on the derrivative (not original) and as the 'cheapo' ones were not coated it really upset my stomach and turned my teeth Brown. This has not only happened to me but others I 'chat' to on our facebook page.

    Good Luck and more importantly Good Health.x

  • I have been on plaqunil400 mg for about 2 months now I stopped taking prednisone after 2 weeks on plaqunil. There are some days I feel really tired and my muscles are score and I have brain fog to not bad but hope it gets better. I just went back to dr all my blood levels are good but she said it could take up to 6 months for the plaqunil to work so now I am taking a multi vitamin and fish oil.we all have different sytoms and medications do different things for all of us all we can do is pray and hope for the best.

  • Hi I must say that plaquenil was a godsend for me I never had any problems and mouth ulcers were there with or without it but it helped my joints my exhaustion and my severe headaches I also am a great believer in that certain foods can also make you worse. I was on it for 28yrs with a short break and then I was awful I had to come off it as I took an allergy to so many things like sulphites salycilates and benzoates looked like made out of the Simpsons when I put anything in my mouth

  • Gosh, I am suffering allergies like that at the moment.It is driving me mad. I don't know what to eat or use or drink. I am waiting for an allergy test.

    This is really interesting.

  • Hi - I have been on plaquenil for the last 10 years and it has definately helped me. I can still excercise every day either walking the dog or running. Managed to complete a few half marathons over the years too. I still get the bad days of feeling tiered and achy, Good luck x

  • Thanks everyone for your replies! I think that it is a little panic mode for me because i have been doing so well of late - and the aches, pains and muscular pains have come back with a vengence. Common sense would clarify what you have all stated that planquenil takes 4 months and more to get into your system. I suppose i just wanted to blame the latest on this lol! My inside of throat and next is still sore - so could my system could be fighting a little viral bug - so will keep a check on this. My glands are slightly swollen and tender - but admittedly I have seen them much worse. There is a lot of sniffles, coughs and colds going on at the mo - and it is easy for me to pick up!

    Lupus - it's not the fear of what could happen next but I an fed up of worrying about my health, every little twinge or niggle. Just for once - I would like a break from this lol - a stress free period would be lovely!

    Lulabelle x

  • Hi ya for me it took around 3 months for me to notice a slight difference taking Planqenil. I was started on 200mg a day but it was uped to 200mg twice a day as it only made a slight difference. From it being uped to 400mg a day I have noticed a massive difference but then it took about a month for it to. Still feel unwell, in pain and fatigued a lot but not to the extent it was before and doesnt last as long. I am now able to function a lot better. I am just glad for that little bit of relief because I was ill for nearly a year and doing a full time degree at uni before I had this relief so just thankful for that. I really don't know how i got through my first year. I have now learned to try and manage the fatigue by resting as much as I can when I can. I have also been started on steroids too. The only advice I can give you is to persevere with the Planqenil as you won't feel the benefits within 4 weeks it can take a few months. What does are you taking? x

  • Just a thought to add to the above. What you describe re your sore throat "inside and out" as well as your fatigue sounds just like I was before my thyroid packed in due to a virus which cause an auto immune reaction. Difficult to time investigating this as it takes a while to get positive thyroid antibody tests results but worth discussing the possibility with yr GP as it is well known that this is common amongst us Loopies!

    It took me two years to be diagnosed with this by which time I was myxodaemic, this was ten years before Lupus diagnosis and whist I was being treated (for years!) with Nsaids for arthritis which I don't have!

    Sometimes it's difficult for doctors to assemble all the clues! Good luck!

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