side effects of meds/side effects of lupus ?whats worse???

Hey!hope everyone is keeping good?i have another question ????still pretty new to lupus (well 16yrs)but six months officially,and after trying to fix it my way which obviously is not doing me any favours as of yet ,i think holistsic lifestyle takes a long time to gain the benefits ?so.....i have bit the bullet and started on plaquenil!im scared...;( really dont like medication ,my mum took a cocktail of meds to curb M.S and died very young at 56yrs so i reckon my anxiety stems from there?for me.... it didnt save her at all?????set aside my worries,i really dont feel great on them ,its early days but i feel even more toxic than from the lupus ,around an hr or two after taking it my vision goes weird ,not for long though ,and i get a weird headache,it also seems to be aggrivating my neurological symptoms ,in bed at night my legs seem to jump around on there own ?very unsettled feeling ,sweats etc ,also ive sufferd terrible problems with my lymph glands this year and since taking this they have become even more tender ,is this a coincidence???or is it just to much for my body to deal with ,how can plaquenil protect our organs from damage when it puts pressure on them to filter out a toxic medication?i just dont understand ?im sorry if this is heavy however when i ask doctor or consultant they are very breif and say....just give it a go???i dont want any risk of eye damage ,i dont want to put stress on my kidneys or liver by taking medication,however im desperate to feel better and for me to take medication just confirms that this is real ,any positive feeback would be so helpfull and im sure there is many folk out there who understand where i coming from???thanks for listening guys ,brave;))))

19 Replies

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  • It is sometimes the case that taking medication heightens symptoms but those will go away in days. Plaquenil starts showing results after about two months and it is the 'easiest' on our bodies in terms of impact by comparison to the other meds used for lupus. Yes, some people have issues with vision, eyesight but as I understand it that occurs at v high dosage for more than 5 years, say. Some experience issues regardless but those are reversible, I.e. disappear once you stop taking it. It is advisable to check your eyes before staring taking them, as a benchmark, then again yearly. I have not had issues with it to date but have been taking it only for about 3 months, my eyes are fine. For myself, if I only have to take plaquenil to keep this under control, I'm happy but I get that not everyone feels the same. Try not to worry too much, give it a go for a while and then see if you get the benefit.

  • thankyou so much ;)

  • Please try not to worry too much - I know that's easier said than done! Plaquenil can cause an upset tum so always take after food. I was told to get an eye test before I started it and then every year - you have to do a visual field check - bit like a computer game - so you would probably find that reassuring. I have found opticians know more about lupus than many other health professionals. Plaquenil can take quite a time to work - it hasn't done much for my symptoms, although many people find it very helpful, but it has got my antibodies down. So it is protecting my kidneys, rather than damaging them. Plaquenil is one of the safest meds that we take - I've been on it 2 years now, without any ill effects and I know lots of people who've been on it longer.

    My lymph nodes are up all the time - seems to be very common in lupies.

    Do you think some counselling/relaxation/meditation might help with your anxiety - it's very scary to be diagnosed with a chronic disease - I found it helped me a lot.

    Take care xx

  • HI brave

    I like to treat my lupus with natural remedies as far as possible, as I don't react well to drugs.

    One way to help treat lupus is an anti-inflammatory diet. You might like to get some help with this from a professional (I'm under a private nutritional therapist). I've found it's helped my symptoms.

    The basic idea is to gradually introduce anti-inflam things into your diet such as Turmeric, leafy greens, bio yogurts (I make my own kefir yoghurt from soya milk) and I also make chickens stock from the bones of a roast and make my own soups and stews from it.

    And at the same time start cutting out those things that are inflammatory inducing such as red meat, sugar, gluten and dairy. Some people find that avoiding potatoes, tomatoes and other veg from that family helpful but I seem to tolerate them well.

    I also recommend giving your body as much relaxation time as possible with mediation/yoga/self-hypnosis or whatever therapy takes your fancy (gentle massage can be really nice). I do tai chi and mindfulness mediation which I find helpful. I also have acupuncture.

    Remember it takes time to come to terms with your diagnosis and find your own way with managing it. I think it's a good idea to try Plaquanil, if it helps you then that's great. You can also try the natural remedies as and when you feel the need to try them. One step at a time.

    All the best xx

  • Thankyou so much ,im pretty much doing all the things you suggested , a private natural therapist isnt a financial option im afraid ,so its self help all the way !the plaquenil is def making me feel worse not better!but then its early days ,i dread taking it every day and now anxiety is taking hold,am seeing g.p tomorrow so am going to ask for some CBT !thanks for your help;)

  • evans

    I have been taking plaqunil for ten years without problems.It is abit unpleasant at the beginning. It takes up to tbree months to work. My Consultant told me to take it ar night with a glass of milk so any nausea disappeared while you were asleep. He also said medication side effects were preferable to the damage uncontrolled lupus could cause.

  • Thankyou, i really feel like im being poisioned at the moment and wish there was a quicker way to help get on top of this???and wander how putting something toxic in my body is going to help an already struggling body???did you feel unwell at first ?did the side effects diminish?thankyou ,brave

  • Lupus itself makes you feel if your body is out of control with increased pulse rate and pain.This because your immune system is in overdrive thinking it is fighting an infection but it is fightiing your body. I was given a steroid injection when I was diagnosed to stop the inflamation and to tide me over until the plaquenil began to work. Don' t see thiis medication as toxic it will stop your immune system being destructive to your body. You will start to feel better but it does take time. Untreated Lupus is like having permanent flu.

    Hope this helps . I have learned a lot in ten years You will feel more in charge as your help improves.

  • thankyou ,evans,its funny cos i actually developed this 16yrs ago ,and have battled all of this time ,however i used to recover inbetween to a semi normal state, never felt normal as i remember what normal felt like for the previous 24yrs,but i did bounce back ,so when this hit me hard in january after a virus i just assumed i would bounce back?how wrong was i?its got worse and worse which of course led me to seek help and after a long time and multiple tests i was diagnosed,lupus!so i thought .....well i had this for 16yrs so i dont need medication,however im really going downhill ,fast ,so i admit defeat ,do you mean the plaquenil dampens down the immunesystem ?or steroids?i have been offerd short term steroids by my G.P many times ,but as always i refuse,im now starting to think i should???as i feel rotten ,like you said ,permenant flu with very stiff muscles and tendons ,plus an array of neuro symptoms,yes...its time for help;(sad and scared;((((thankyou for your reasuring info ,it helps alot ,keep well ,brave;)

  • some short term steroids might make you feel better while you are so poorly

    It sounds as if you need to get the inflammation down. Being without medication for so long must mean you are debilitated flaring takes its toll on your body. Speak to your doctor and get some advice

    hope this helps

  • many thanx

  • i took plaq for a few months earlier this year and rather than make me feel better it made me flare really badly worse than my mild lupus system. several months later deprssion and a lot of discomfort and fear i am in a sad place. not sure what to do as i am in limbo.

    the other alternatives are really hard on the body. all the doctors want me on chemo drugs as my symptoms are very bad. organ involvement not bad at the moment but who knows what the future holds.

    some of the drugs are sooooo toxic but plaq is the lesser of most of them. if it works for you it will save you having to take some of the less desirable drugs and trust me the side effects of some of them make me shudder.

    lupus is hard on all of us someone posted is the treatment worse than the disese maybe maybe not

  • Thankyou;)

  • It's a catch 22 I'm afraid, a case of deciding which is the lesser evil :0( So far nothing has worked 4 me so I just live on pain meds lol!

  • me too ....i had to come off plaquenil,it almost finished me off completly,so just take painkillers,just wish i could get this horrid poisioned type feeling out of me ,like having a mega hangover everyday with tender lymph glands,and the minuite i try and do anything normal ,like you did by going to the butchers ,i get ten times worse ,so basically unless i sit on my backside day in day out ,i cant seem to get better;(i used to get periods of feeling o.k ,but its been 12 months with no respite ,how long is a flare supposed to last?how long have you had lupus?which pain meds can you tolerate?keep well brave;)

  • Diagnosed over 18 years ago but pretty much had it all my life, it was just 'dormant' they reckon :0/ My flare has lasted 2 years (so far) but I THINK it's starting 2 tail off now. U can never gague how long a flare will last though or how bad it's gonna be unfortunately. I can identify with the lymph glands & the headaches can floor u faster than anything else. I mix & match my meds: CoCodamol, Ibuprofen (4 headaches), diclofenic, dihydrocodeine & Oramorph all in that order (if the first doesn't work, I take the 2nd & so on but u learn 2 gauge what pain killer suits certain pains). Oramorph is only 2 b used 4 severe pain thou as it's highly addictive & don';t really want 2 add 'Drug Addict' 2 my ever growing list of ailments ;0)

  • oh, & Tramadol (along with anti sickness pills) ;0)

  • thankou;) you must rattle?lol;) keep well

  • I'm sure I do make a jingly Jangly noise when I move now u come 2 mention it ;0) Sleep well brave x

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