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LUPUS UK
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Plaquenil allergy - anyone had a similar experience?

Have reacted badly to Plaquenil X 3 this year. Diagnosed with MCTD in 2002 and took prednisolone and azathioprine for a few years before ceasing all meds in 22006. Raynauds worsened in Nov 2016, only troublesome symptom I had in Feb 2017 but was seen by my new rheumatologist as old one retired and he pushed the idea of Plaquenil as 'an insurance policy'. Firstly took 2 doses but had severe pain and a few hives a few weeks later, didn't associate the two. Decided to wait for all the results of blood work, x ray, lung, heart scans before taking Plaquenil. Seen again in April, informed that all results were normal for me, confirmed DX of MCTD, no lupus markers whatsoever. Still told to take Plaquenil. Wish I hadn't but took it for 3 weeks, stopping after coming out in a rash all over, and finally a swollen lip. Two days after ceasing it huge hives all over which took about 10 days to clear. But then over the following 4 months intermittent hives accompanied by joint pain, fever, fatigue, which slowly improved and were less frequent and severe each time, to the point where I had no hives for a month and no joint pain. I then see a different doc for second opinion, an immunologist, who gets alarmed as he discovers my anti ds DNA antibodies are sky high, with Rick bottom C3 and C4. I did not have this result prior to taking the plaquenil and having the hives. I was 99% sure it was the medication but doc felt it was a coincidence and advised the Plaquenil again. So I took it for 11 days this time, ended up even worse with severe hip and other pain. Rash day 4. Hives from day 5 which worsened each day. Stopped the medication at day 11 yet on day 13 woke up with a massively swollen face along with the hives. Had IV steroids at ER. Doc had started prednisolone to kick in whilst the plaquenil started to work which fortunately is helping to manage the hives instead, but as soon as the morning dose wears off the hives worsen. Face is still swollen. Still on 50mg prednisolone a day, and for last three days have taken an extra 10 mg at night with Phenergan. Still waking up in a terrible state. Now I know for sure the plaquenil has caused an allergic reaction, but I also feel certain that it has also given me these never seen before lupus markers in my blood somehow. The docs STILL think my symptoms over the last few months are a coincidence, even the hives and face swelling. I know it's the meds. The docs now want to start methotrexate straightaway, but I know my body needs to get this plaquenil out if my system for a few months so I can see my baseline. Has anyone else had this experience?

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I keep a diary of all my symptoms/drugs for cross reference. I had been taking plaquenil for a few years but have had to stop re suddenly having a reaction. My skin peeling from inside my lips and mouth. Shreds of it not just a bit. I am a highly allergic and it is not uncommon fro me to develop allergies so looks like another one bits the dust fro me. I will cease medication and reintroduce after some months to see how I go. I often have hives too. Not sure if my experience helps, I always take the medical advice but my diary helps at clinic meeting too. Lou xx

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Thanks Lou. Yes I too have been keeping a written record plus photographic evidence! In any case I will never touch Plaquenil again. So did your hives come and go for months after ceasing the plaquenil? With accompanying pain? I have read a lot of posts by those who had an allergic reaction to Plaquenil so ceased it, but nothing mentioned about ongoing hives.

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My hives came years before starting Plaquenil. Part of my flare activity. I have other rashes too, livido also. Have mctd, vasculitis, Lou xx

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I am allergic to all drugs now - my theory is that all the invasive treatment, drugs and trauma that I have had in my life contributed to all the problems I have now. Overload on the immune system can send it hay-wire, I am sure!

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Thank you Cann. Yes I feel the same, that medications can make you worse, and most likely have a role to play in how my condition first started. I know my body needs a rest after being bombarded these last 8 months. No way I'll start a new med for at least 6 months unless I have serious signs and symptoms other than just simply the serology.

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I have researched the effects of foods as food is medicine, but again we are all different and what one person can take another can't.

We all have to go by our gut feeling, but I lost my gut feeling that was the problem, by relying too much on what doctors said, who when I got seriously ill, I realised knew nothing about my body!!!

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I'm hearing you! I have a lot of faith in the human body to heal itself given the right tools. Have you found anything that has worked for you in terms of diet? I have read/watched a lot of anecdotal stiff, lots of stuff around the gut and previous. Tried (half heartedly) to stick to certain foods. I think now my body is really telling me to take my diet seriously!

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Sorry typo, meant to say prebiotics

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I find a banana helps when my gut flares; I had severe damage from broad spectrum antibiotics and drugs.

I eat smaller meals - little and often with alternating fruit kept away from other food because fruit can digest quickly.

I couldn't eat any fruit for a long time without coming out in rashes.

I eat organic where ever possible and cook my own legumes from scratch.

I only steam veg and I am limited on veg, too, especially green as my thyroid was damaged. I couldn't take carrots or sweet potato for a long time and I have to limit potato and tomatoes due to them causing inflammation and joint pain. I can only eat spring onions and not red onions even though they are supposed to be good for inflammation with having quercetin.

As I said, I muscle test everything. I can take coffee now and again, but with tachycardia I have to be careful. I was on a liquid diet for a year when I was ill before being able to gradually introduce solid food back into my diet. I can take no dairy - I was diagnosed with asthma in 1994, but was actually allergic to dairy. I take no grains, but there is a history of coeliac in the family.

I can't take probiotics - they give me the trots which is not what I need when trying to keep my weight up to 7stone 10lbs.

I eat prebiotic foods as I said such as bananas.

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I replied below, but do what you feel your body is telling you - it really is the only way and you can do it!

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Thank you. I have never ever posted on a forum before now, but it really is so reassuring to hear others experience and not feel like a paranoid delusional mess.

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Me, too, but I know it was because of the way I have been treated by many including the medical profession over my life-time - being told I was depressed for one thing and prescribed antidepressants which I stupidly took when I was actually physically seriously ill and they damaged my body further.

Not any more, though, what they finally did to me in 2000 and almost killed me, woke me up to reality and what is really going on even if I was seriously ill - taking away my power and control as with many areas in life.

I always had the smear tests and ended up with infection afterwards when I would have been better not having them. I have refused all the mammograms because of what I have learned about them.

I really do have to be very assertive and trust my body rather than doctors a lot, if not most, of the time.

I was too trusting of those who lacked knowledge of my body.

Good you have discovered it, too. Don't let them brain wash you into believing they know better than you with regards your own body.

The more you trust your body - the more it will inform you of what it needs whether it be more rest, food, exercise, fresh air/vitamin D, company or time alone, whatever. You will gradually return to a point where you know what is right for you; that is if you haven't arrived there already!

All the best. C

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Thanks so much :-)

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I think like this too....

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Thanks for everyone's responses. It's given me strength to stick to my guns, listen to my body and trust my instincts on this one. I am still covered in welts and weals, I look like a map, and they spread each day. Gotta get off the prednisolone, and find a new specialist if I have to. Will definitely be making big changes to my diet, and get more rest. Thanks again.

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I’d listen to the body rather than doctors. I now have “mild” brain damage from taking ciclosporin at the lowest dose for 4 weeks 3 years ago. I repeatedly told doctors (from GPS to neurologists) that ciclosporin caused that and they denied it on the basis that no one has reported it. I said to them: I’m reporting it to you all and you’re not doing anything about it. Then they told me that it can’t be the drug because it has a very high safety profile, to which I said that it might have for others but not for me.

And so on.

I’m still living with the repercussions of taking that drug and I’m paranoid about taking new drugs now. We are unique in our making, each drug afftects each of us in a different way. So don’t rely on assurances given by doctors when your body is screaming at you not to feed it that drug again.

No one can force you to take a particular drug - you don’t need to explain why you don’t want to take it, just say you are not comfortable taking it and ask for an alternative.

Good luck.

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Thanks so much for responding. I'm sorry that has happened to you. The doctors get so caught up with 'evidence' aka randomised controlled trials, and seem to discount individual experience. Sometimes the most obvious explanation is the simplest. And I am very cynical when it comes to the influence drug companies have on a lot of 'research' and doctors. I hope very much that my doc reports my experience to the relevant places. I wish I had not doubted myself with taking this drug again, and had refused it. I hope I can get back to where I was 8 months ago. But it may have induced actual lupus that I won't be able to get back from. I had a win today - my immunologist now agrees that I have serum sickness from the plaquenil. To his credit he contacted colleagues around the country, found reports of rare cases, and says this is the first time he has seen this himself. Have to stay on steroids now for weeks, maybe months to keep my immune system in check because of this reaction but at least I feel validated. I am concerned about the well known side effects. I will be tapering off as soon as I can, and meanwhile going on the biggest health kick to flush it from my body. Thank you for the encouragement to back myself.

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The doctors will also tell you that side effects will 'go away' after 'a while' which apparently is anywhere between 6 months and 2 years. I've been off ciclo for 3 years and my side effects are still with me. I am not saying that you'll experience the same, of course not. Just that it is frustrating to hear the medical profession taking side effects so lightly, whilst we have to live with the consequences. Since having these side effects i've been reading a lot about clinical trials, the way they are conducted and results reported. It makes for a depressing reading.

After 5 years since being diagnosed with lupus and 1 year since being told i might also have 'incipient' Sjogrens, I've come to realise that our bodies do what they can to keep us alive. I've tried diets, medication, exercise, meditation, yoga but my lupus/sjogrens act the way they want, regardless. Sometimes I feel ok, sometimes not. I've now learnt to just try and eat a balanced diet without depriving myself, rest when i feel i need to, but above all live my life. I've been so focused on my illness for the past few years, I feel as if I've been in a dark hole all this time.

All the best and let us know how you're getting on.

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I totally agree with you - living your life and not focusing on your illness helps, but I find listening to my body often relieves the symptoms and may be that is what the symptoms are for - to make us listen, as we are that type of person - love living and forget sometimes to listen to our bodies.

I can't stick to a particular diet, but I eat when I need to of what I need. It is quite hard, but if it is the only way to feel reasonably well and be able to do things, I am willing to do it despite negative comments from others.

I have worked out that they have a problem because they do not have the self discipline to do it themselves.

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Absolutely, I can look back now prior to this all starting with the worsening Raynaud's, and I know I wasn't taking the best care of my self in terms of sleep, not eating enough, drinking too much (for me), doing a job that I started to hate, and it took its toll for sure. The positive in all this is that it's gonna give me a much healthier future x

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Well done for working it all out. x

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Be careful on your flushing. It can bring out stuff on all levels and your body can be totally confused not knowing where to start first, but hopefully it will be an interesting and learning experience for you as it was for me.

The biggest challenge is to not repeat the mistakes. I was on steroids for asthma for six years and they caused damage to my immune system as well as my hair to fall out eventually along with other drugs. I never resort to steroids now I have found other ways to manage the symptoms and although Lupus may not be healed, it can be managed when we find the right way for our body!

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Yes, I really want to come off these steroids, even the docs worry about their effects. I plan to be as healthy as I can, without becoming obsessive! Thanks so much for sharing your experience, I will be prepared for a rough times in the coming days and weeks.

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Sounds like you learnt the hard way like me, but we have come through it, that is what matters. Good for you.

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Thank you. Wow. Never appreciated the value and power of these forums before. Its amazing. My DX of MCTD has been in the background for me for such a long, long time, I barely thought about it, except for the constant Raynaud's reminders, but my health is consuming me at present! This support is invaluable.

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