HEAD TO TOE allergic reaction to Plaquenil and some help please

Hello, here am very glad to have half working hands. I have SLE Lupus, Hughes Syndrome, Psoriatic Arthropathy, Sjogrens and Hypothyroidism. I had a trial of plaquenil, as it is clear that I need something for my failing health. I started this with optimism and some caution due to my existing conditions, especially the psoriatic arthropathy. However my teenage daughter who is very ill with Hughes Syndrome and Lupus, is doing well on this.

Alas for me a full allergic reaction, hives from head to toe, psoriarisis from head to toe, inflamed kidneys and joints and a very bad temper. I am currently out of the danger, 5 days of steroids, and although wearing only a layer of aloe vera gel and a sheet... I have turned the dangerous corner.

However before I lose the use of my hands, which always happens with flare ups. I am using my time to do something useful.

Lots of people with autoimmune disease have thyroid issues.. and there is real change across the UK and the world to improve the lot of patients: The three petitions for this, need HELP, which is in the form of SIGNATURES and PASSING ON, via EMAIL, and FORUMS or FACEBOOK for further SIGNATURES,

Please help me if you can: The first one is a world register for thyroid, a simple signatures and pass on: 1. worldthyroidregister.com/ the next one is a world petition for thyroid 2. change.org/petitions/endocr... and the next two are UK ones: 3.http://epetitions.direct.gov.uk/petitions/19000 and the last one is from the original Staffordshire Whistleblower who lost her career sticking up for the likes of us:

epetitions.direct.gov.uk/pe...

It takes seconds to sign them and pass them on, if you have a little tiny bit of energy to help - thank you. Mary F x

7 Replies

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  • Oh no!! Poor you Mary! That sounds really horrible for you. Got me worried now cos I'm due to have Plaquenil liquid (hopeless with tablets!!!) in the next week or so. Do hope you start to feel better very soon

    Take care ((hugs)))

    Jane x

  • most are fine, and it is because I have a disease involving psorarsis, you will be fine x

  • i dont like planequil i have had this flare for around 3 weeks and i dont want to go on stronger meds but i am in constant pain so very confused. going to my rheumy on monday but know she will be of no use to me

  • I've signed the petitions Mary and passed them on to family and friends. As I live in Spain I have sent them to my local Lupus Clinic here too so these petitions have now gone European for you! Just as a matter of interest I took plaquenil for years and couldn't sing it's praises enough. I had a six month rest and I now have a serious allergy to it too. Nobody seems to know why. All I know is that I lose the use of my feet when the flares are starting and am obviously unable to walk as a consequence. Keep smiling Mary - I know it's rough for us at times. The pain can be intolerable too but I try and tell myself at least I have a roof over my head, food on the table and a supportive husband - that puts it back into perspective for me. I am sure many people suffer far more that I do. I'm sending you a healing hug of friendship and will light a candle for a speedy recovery for you xxx

  • This is great, just the sort of action we need, thank you very much xx

  • Mary, you have had exactly the same reaction as I did, I came off it immediately.

    Something that is supposed to help makes many feel so bad. What is interesting is that I too have an under active thyroid and it was only discovered by a Kidney Specialist I was seeing at the time.

    I was also allergic to another Chloroquine given to me afterwards, this gave me a type of wet excema ( not sure of the name) I too have psoriasis but it only appears in set areas.

    Hope you are feeling much better and will definitely look at the petitions

  • thanks they really need passing on and of course signing. there is also a good thyroid group on this platform Thyroid, I try and have a different group for each ailment xx

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