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Sticky Blood-Hughes Syndrome Support
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Any advise against side effects of Plaquenil?

My brain MRI came back clean, and, as I haven't had any clots yet (although I suffer from other symptoms), my APS doctor put me on Aspirin and Plaquenil. I feel sick most of the time and my dizziness is worse. Any advise how to cope with it?

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Hi... firstly how long on Plaquenil, as I remember my daughter felt like this at the beginning? It did settle down. As with all medication including the coated Aspirin for my children and myself, always on a full stomach with the Aspirin. Regarding the dizziness make sure alongside the other symptoms, that you keep them listed and if necessary tell your consultants, as at times some people need more that Aspirin. Let us know how you are getting on. MaryF

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Thanks, I just started taking the Plaquenil 2 weeks ago, so I hope the sickness will pass.

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Hi, The MRI I have done did not show anything abnormal. I have probably have a lot of microclots. What I have read is they do not show up on MRI.

I am on warfarin with good response to neurological problems. My dizziness that started with my TIA or stroke -02 have not disapperared. I have also always tinnitus and feel if I am a bit drunk. When my INR is low it gets worse.I am so used to it. That will never go away. The Vertigo is quite gone after warfarin.

I can not answer about plaquenil but I have heard it takes some time. Others can answer you better.

Best wishes to you from Kerstin in Stockholm

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"Hi, The MRI I have done did not show anything abnormal. I have probably have a lot of microclots. What I have read is they do not show up on MRI. "

I agree with MaryF and Kerstin. MRI is "a little like looking at the shadow of the brain" - even if it looks "clean", doesn't mean you never had TIA. I genuinely hate Neurologists dismissing patients and her symptoms by saying "your MRI looks clean and there's nothing wrong with you" when you are / have been seriously ill.

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They usually do not understand APS so well. Rheumatologs and Heamatologists do. This illness is so under-diagnosed and so many of us have been to doctors that know nothing of this "sticky blood" We have not normal blood. I do not hate these doctors. Sometimes they are afraid of the unknown.

I have tried to know for myself as much as possible about this illness, Knowledge is Power.

I guess your neurologist knew nothing of APS and perhaps it was several years ago.

I can understand your feelings. I feel so sorry for you that you met that doctor.

Best wishes to you from Kerstin

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Thanks, Kerstin. That's exactly how it feels- like being drunk without drinking!

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Danap. And you know that when I take my usual glass of red wine for dinner I feel less drunk! . Ha Ha. Seriosly I only with constancy take ONE glass. On doctors recommendation 12 years ago.

Have a nice weekend and hope you get rid of the dizziness. I have a damage on the balance-system

and what is damaged is damaged.

Have a nice weekend from Kerstin in Stockholm

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Hi danap - Remember that the plaquenil { hydroxychloroqine ] take a long time to come to full effect. i built up to full dosage i think it was 5 months and then even longer for me anyways . so be prepared for the time it will take -- but believe me it is worth the wait --I have many problems and it worked and also it is a mild blood thinner in itself ..if i can be of any other help please feel free to contact me -- Casey & Me

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Thanks, Jet. It is so helpful to hear from others' experiences! I'll try to be patient about the side effects. Tomorrow I'm off to the US and will have to inject Celxane for the first time, so that' on my mind now.

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Hi Danap, I will be starting Plaquenil soon and I really hope it agrees with me. Prof Hughes suggested starting me on a low dose. I suffer all the symptoms you have mentioned. They improved when I was put on Warfarin with an INR range 3.5-4.5. Hope things improve as Plaquenil seems to be very good for people like us with Hughes Syndrome,

Avril

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May I ask why you stopped Warfarin? Were you told to do that by Prof Hughes?

Best wishes from Kerstin

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Yes Kerstin, I'm still on Warfarin. It has improved my quality of life. I won't be taken of it (too risky)

Avril

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Thank you for your answer. I wish you could have a chance to selftest. That has improved my Warfarin-life a lot

I hear you have been to Prof Hughes. That means certainty to me.

Take care. Kerstin

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Hi Kerstin, I do self test and I would not have it any other way. My GP and Warfarin clinic will not support me despite letters from Prof Hughes, Prof Khamashta and Dr Bains (specialist in Scotland). My hospital gives me support. I feel so much safer self testing and have good INR control. My daughter has Diabetes (since 9 years old). I would say she has to work much harder to keep good control. I wish Doctors would encourage patients to do their own INR self testing,

Avril

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Hi April and thank you for answering!

It is a shame that they do not encourage patients to self test. We are so lucky in Sweden.

I have also a daughter with type 1 Diabetes. She got it at 18. Does your daughter has APS as well?

Kerstin

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What a coincidence! My daughter is not showing signs of APS but I do want to have her tested. I've asked her Diabetes nurse but she says I have to ask GP,

Avril

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My dauhter is now 39 (!) and both my daughters wanted to be tested. They have no syptoms they say and it showed no antibodies. My own Rheumatologist did the test.

Kerstin

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Nothing to stop you from starting the Plaquenil slowly like every other day or just 3 times a week to start with until there are no symptoms before increasing.

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Thank you, that sounds like good advice,

Avril

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Thanks, Avril. Are you still on Warfarin? Is the Plaquenil in addition to it?

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Yes Danap, the Plaquenil will be in addition to Warfarin,

Avril

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They do say, it takes about 6 weeks to start working. In my case, the effects have been almost immediate..though I agree with Kerstin "what is damaged is damaged" - there are damages which are irreversible I have come to accept.

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So sorry to hear that Omega. Hope it is not a huge handicap for you. It is perhaps also depending on ones age how successful one is on brain-repair.

Best wishes to you from Kerstin

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Thank you Kerstin..You made my day! hugs and kisses xxx

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Actually, more often then you would think, the brain can repair itself by either re-routing or by re-wiring damaged areas. My " Psychadelic gummy worm" which/who was the result of mini strokes, has faded consistently over the past 14 years. Most recent MRIs look mostly normal, though the ones from 14 years ago looked scary.

You know? I almost -ALMOST -miss my Psychadelic gummy worm. He hasn't appeared in my vision for 2-3 years now. I hope he found a more appropriate place to hang out then my visual cortex. Although his appearances were scary and inconvenient ( when you 're watching a movie you do want to SEE the movie,) he was pretty, in his 1960s' acid-tripping kind of way.

Gina

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Hi Gina, My Psychadelic gummy worm (Í call mine "AURAs") went away with warfarin. but I have had him back occasionally the last year. If it gets worse I will try Aspirin

You are so right Gina we can practise and repair the brain. They told me so and it is therefor I take a walk every day and do not mind that I feel a bit drunk. At first I was afraid. It is more in my brain but I bump into friends when we walk together so I prefer to walk alone. I do cross-words.

My tinnitus will never go away. That is for sure.

Best wishes! KerstinI

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Your post really amazes me Kerstin - it sounds like my exact symptoms as you describe. x

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My stroke left me with bad balance too so I also feel quite drunk most of the time! As you say you just get used to it and its not unusual to see me do a quick swerve one way or another and have to correct myself. Im sure most people do think I'm drunk as I knock into things and as you say the odd glass of wine does make it better!

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Hallo there, I wonder if we took a walk together ......... The wine ...Ha Ha It was almost a joke but I think I go straighter. I do not like cyklist coming behind me suddenly if I suddenly swerve.

Kerstin

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It is absolutely vital that I conduct a trial this evening involving red wine! MaryF

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Gina Psychadelic gummy worm...I'm wondering if that's the same one I have been living with. It's good that you don't get it anymore. Your recovery must be so outstanding xx

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Hi: I agree, Plaquenil takes time to work. I was started slowly in mid March and now take 400 mg a day. I have such good days now and the nausea and "feeling unwell" most of the time has passed. I was on hydroxychloroqine (generic Plaquenil) last year and had to stop because of headaches but take the brand name now despite the cost. I'm also on Warfarin since March. Aspirin gives me upset stomachs and I was advised to take a full aspirin a day a year ago and stopped. I wish I hadn't as just a baby aspirin may have prevented my stroke in March. When I was put on Warfarin, I was taken off aspirin.

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Hi Loretta, Great to hear you have "such good days now".

Best wishes from Kerstin

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Thanks Kerstin. Hope you have a good day today.

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Yes thank you. No thunderstorm in sight today .Kerstin

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Great--absolutely gorgeous day in New York City today-finally!

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Just arrived at NYC after taking Clexane for the first time, for the flight. Feeling better! Maybe I should stay on it.

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I don't know much about Clexane. Is that just for flying or are you are Warfarin beside. I've only been on Warfarin for 2 months and wonder what I'll have to do when I fly. So much to learn about. Hope you had a pleasant flight. Are you on vacation in NY?

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I'm on Plequanil ans Aspirin so the Clexane is a safety measure for long haul flights. I was worried about injecting but it eas ok. I'm on my way to a conference in Minneapolis. APS will not ruin my plans! :)

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Good luck at the Conference. Kerstin

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Good for you. We have to get on with life despite APS.

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Hi Danap

Interested to read your thread as I am due to start Plaquenil in the next few weeks after my next INR check. I hope your symptoms subside soon, I am also starting a new job on Friday so dont want the side effects or my new employer to think I am flaky. Good luck!

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Hi yes ive been on Plaqenil since 2009,at 1st i was dizzy headclosing down for 2 weeks that eased then it came back and i spoke to dr who said i should been told never take 2 plaqenil at same time of day supposed take 1 in morning and 1 in early evening to give body full coverage of drug good effects.

no more dizziness also to always take after a meal.

I found it very helpful medication i have lupus,aps mild,raynuands syndrome,sicca syndrome,arthtitis.

also not to take any indegestion remedies 2 hours before or after dosage taken. hope yours settles soon.I take mine with glass milk aswell coats tummy bit more.

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What a very useful thread with insightful posts.

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Thanks everyone for sharing. After suffering for a year without a diagnosis or medication, knowing that I can turn to you all is a great feeling. Overwhelming.

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A few years ago I started taking Plaquenil as I have APS and Sjogrens and Glycogen Storage type IV. I started loosing my appetite and lost six kilos in six weeks, in the sixth week was so restless and tense that I was only sleeping 2 hours a night only and couldn't continue.

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Did you continue with Plaquenil? What anticoagulation drug are you on now? Would be interesting to hear how you managed

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No I stopped taking Plaquenil after six weeks couldn't tolerate it. In 2005 before I was Diagnosed with Sjogrens I saw Prof. Hughes and found out I have APS and since then I have been taking Plavix my Rheumatologist is Dr. Khamashta at the London Lupus Centre. As I have Glycogen storage disease in the digestive system I had an obstruction 18 months ago and the surgeon removed 80cms of the small intestine as it became full of something like starch from the Glycogen. Prof. Silk with several other doctors have been doing research on this type since 2008 as they found only four patients in the UK who has it. Three months ago the Sjogrens hit my intestine and now I'm on another medication called Ondansetron it's a kind of Quinine but Plaquenil is better I wish I can tolerate it, but on the Ondansetron I started feeling better.

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Just forgot to tell you I live in pain and nausea and fatigue and with Autoimmune diseases there isn't much help I had to learn to live with it.

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Thank you dalalf for answering! We learn from eachother.

I can hear that you are at least in good hands. I think that is a consolation.

Take care and good wishes from Kerstin in Stockholm

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dalalf

Useful comment. Thank you for sharing that.

I had a mildly "hyper" symptom yesterday. I have to say though..losing weight is better than gaining weight too much. However, your other symptoms sound pretty dreadful. hope feel better soon. hugs x

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Plaquenil, really messed my memory up! I was so confused could not concentrate, showed up for work on days I was not scheduled to work. I put my clothing on inside out. I was totally a freaking nut case! I stopped taking it and now 'I'm ok.

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