Quinine

[Salmonious]

I am feeling very comfortable with this group so I will reintroduce myself with my real name, Sharron and I live in southern Ontario, Canada. I saw somewhere, in one of the strings a mention of Quinine. If I understood it correctly Quinine is a drug that can exasperate several health issues including Hughes, is that true? I have been taking this drug for years with all the doctors and specialists knowing this yet they have said nothing. Another question if you don't mind, I have significant sleeping issues which seems to be getting worse. I sleep approximately 4 hours a night and that is on a good one. I take pills to help me sleep and pills to keep me awake during the day. If I have followed some of the conversations correctly then this could actually be a Hughes symptom, is this correct? I do not have sleep apnea but I have a diagnosis of "non-restful sleep". The average person has 25% REM and I have about 10% and no one knows why. Thank you for any help you may offer.

[HollyHeski Administrator]

Hi, so glad you feel comfortable and welcome.

Quinine also known as Hydroxychloroquine, sold under the brand name Plaquenil among others, is well know to help APS, for me it helps my sjogrens, another auto immune disease.

Sleep wise, not had a good sleep since my 1st stroke, was told this is the natural body defence-not sure if I believe.

The last two years I have suffered with dead arms in the night, being woken 2-4 hours, diagnosed with thoratic outlet syndrome, sleep deprevation has led to all sorts of problems, never sure what each symptom relates to....

Again welcome xx

[MaryF Administrator]

Firstly what i will ask you is, are you on Plaquenil, which is under the drug group you mention, but the brand of choice for the major London teaching hospitals. I will also ask you if you have adequate Thyroid testing beyond the standard rather faulty TSH test which doctors do. I myself do tests like these. TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH), REVERSE T3, Insulin, HbA1c, Magnesium.

Often people with autoimmune diseases and in particular Hughes Syndrome/APS and Lupus are low in B12, D, Iron and have an undiagnosed Thyroid disorder, very important to check this out. A thyroid problem is notorious for causing insomnia. Also a lot of us ditch gluten entirely with regard to insomnia.

MaryF

[Jean_12 in reply to MaryF]

Hi Mary - Is the list of bloodwork you mentioned bloodwork that should be done for most APS patients?

I'm a bit confused too - so Plaquenil is helpful for APS patients? I'm already on bloodthinners but struggle a lot

[charlieab]

Hi Sharron

Im afraid I dont know much about quinnine. I did find that hypnotherapy was for me the best thing ever for autoimmune related sleep problems. Though you need to find a good hypnotherapist and make sure you get a CD to take away and be able to play at night untl the message becames embeded. I have multiple tinnitus noises screeching in my head and see flashing lights etc when i shut my eyes but still manage to sleep now.

best wishes

[Lure2 in reply to charlieab]

Hi Charlieab,

We talked about the cows .......remember?

I suggested you should try Asprin as a first step to anticoagulation as you may well have HS/APS, but your Doctor said no to that and also to try LMW Heparin and see if you feel better.

You have had Reticularis as is said to be a sign of APS and now you tell me you are seeing "flashing lights" when you shut your eyes - exactly as I had before I was anticoagulated.

You also have bad tinnitus (except for the cows) but i think you should try Aspirin all the same. Have you bad stomach? Can not understand why the Doctor says no to Aspirin but as i understand he is not an Specialist of autoimmun illnesses . Take the Aspirin together with food and only a baby-Asprin (75 - 100 mg) each day is enough.

Ask you Doctor why he wont let you try baby-Aspirin if you do not dare to take it - I think you could feel better.

I suggest, as all of us need, a Doctor who understands these autoimmun illnesses. After Warfarin my neurological symptoms disappeared. So sad to have symptoms and not be cured and treated.

Kerstin

[charlieab in reply to Lure2]

Thanks Kirstin. Yes, h saud no to aspirin for teh time being. But will ask about it again when i next see him. I am tempted to take it for now as cant do too much damage (famous last words!).

It makes no sense but ive found that running up and down the stairs a few times an hour reduces the livedo and is probably good for the psoriatic arthritis.

I will for sure try and get an APS specialistif I get that diagnosis and will go to the London Bridge place if need be.

Another thing I found has helped (and it might be psychological) is kale. though I know it can be an issue for some on account of being rich in vitamin K. But when Ive eaten a lot of it I feel kind of on top of the world. Maybe somethimg a little stronger got grown amongst it by mistake! Not taht Ive ever tried anything like that.

Was very interesting what you said about the flashing lights. And, again, it gives some hope that things could improve.

thanks again

best wishes

R

[Lure2 in reply to charlieab]

Hi charlieab,

Absoultely! I am sure you will feel much much better when you find that Specialist of yours!

The neurological symptoms you have are very common with this illness. I wish you could try baby-Aspirin so please give him a call and say that you want to try baby-Aspirin. It is a sort of anticoagulation but has to do with the platelet that they will not be so sticky. (An antiplatelet-drug) Have you got the book "Sticky Blood Explained" by Kay Thackray? Reat it and learn from Kay.

Kerstin

[Jean_12]

Hi there!

I underwent a two night sleep study while we lived in Germany. My doc was one of the better docs I was able to find. He actually flies back and forth to teach at Johns Hopkins in the US. Anyway, I've been diagnosed with Circadian Rhythm Disorder (which basically means I'm a night owl) ,Insufficient Sleep syndrome and Sleep phase delayed syndrome. My doctor gave me a plan of action to help cope with all of my sleep issues. Did your docs have any recommendations to help? If not, I would ask for specific recommendations.

A few things that my doctor recommended for better sleep (not just specific to me - this is just good sleep hygiene) - not eating after 8 or 9pm (I can't remember), no caffeine after noon and limiting caffeine intake in general, using the "Flux" program on my computer (it takes out the blue light and replaces it with an orange hue), use blue light therapy upon waking in the morning, dropping the temperature in the bedroom, no TV in the bedroom and staying on a regular sleep schedule.

I recently asked a hematologist about adding Plaquenil to my treatment plan (I'm on Enoxaparin). He was surprised I even asked him about it and said no. (He also didn't know much about APS so I don't take stock in much he said). I'll be following this thread to see what others say and do.

Wishing you good sleep!