I recently saw Dr Holmes regarding my ongoing and increasingly dibilitating headaches and migranes. After examination and discussion I am awaiting an MRI this week. On the acute attack front I obviously can't take NSAIDs (on warfarin) or Triptans (long standing cardiac issues). For prophylactic thoughts it is also difficult as beta blockers are also a no (cardiac history). I believe my aches and pains mostly muscular and particularly in my shoulder, neck and base of neck are contributing to the migranes a lot. He is going to liaise with Dr'Cruz regarding starting hydroxychloroquine to see if that helps with the muscular issues and fatigue and in term hopefully help with the migranes. He also suggested starting supplements Riboflavin B2 and magnesium. Has anyone else tried these supplements? Do I need to have a BT before starting them to know what my level are currently before commencing them? Also for the hydroxychloroquine do you just need a normal eye test before you commence them or an advanced? Just at the opticians ok? Thanks
Migranes and Medication: I recently saw... - Hughes Syndrome A...
Migranes and Medication
Hi,
I know you were earlier on Warfarin with, as we thought here, a too low INR. Did I understand you right that you are still on Warfarin and with the same therapeutic range like before?
As to the eyes, I should go to an Oftalmologist (eye-Specialist) and not only a Optician. As you have got APS it could be good to have a carefull examination as we often have eye-issues as a symptom of our illness.
Best wishes!
Hi, sorry your going through the wars. I'm presuming your INR is stable and Dr Holmes or you have not related migraines to low anticoagulant?
If my blood is too thick and sticky, I get migraines. Although saying that I have had a headache now constant for the last 11 days and my blood is ok.
Regarding the hydroxychloroquine, I have been taking now for 10 years, initially for my sjrogrens but it has now been proved that it helps with APS, many now take it. Originally I was told to keep an eye on my eyes and was given by Dr D Cruz, a Amsler grid eye test to do at home. He also told me to have an annual eye test and to tell my optician that I was on it. When I last saw my optician in October, he told me, that the chances now of problems from taking the drug are so small and not to even worry about it.
Once I started on Hydroxychloroquine, my dose was slowly increased to 400mg a day, it took months before I noticed a difference. I did try a few years ago to reduce my dose, big mistake, as the pains came back almost immediately and took ages once restarted my normal dose.
Regarding the supplements, I am on several but not the ones you have been recommended, but I think (As I think you do) that yes would be worth getting a base line before you start taking them. Would also be worth if you haven't already, getting your B12, ferriten and Vit D checked, as many of us with APS suffer from these deficiencies too.
Hope you booked that holiday you were talking about?
xx
Hi thanks for the replies, sorry forgot to say INR range still 2.5-3.5 and I try to keep between 3.0-3.5. Dr Holmes says it needs to be 3.0-4.0 so he's going to liaise with Dr Hunt and if need be he says get her to speak to my local haematologist who won't increase it!
I know that 7 months ago we suggested you should try to get your INR up as you were on a therapeutic INR-level of 2.0-3.0.
Thus on February 17 you had a clot and had an INR of 1.6 at that time.
I think that when you get your INR up to near 4.0 or over 3.5 at least your clots and perhaps also your difficult migraine will improve a lot.
I am sure that Dr Hunt will help you and talk to your Hematologist to get your INR up and steady as you are also selftesting. Are you Lupus Anticoagulant?
If your Hematologist will not cooperate I suggest you change to another more knowledable Specialist.
Kerstin
In terms of hydroxychloroquine, you should see an ophthalmologist ie a medical doctor, before you start and every year. You will be sent for tests and specialist pictures of the eye. An optician is not a medical doctor.
Dr Graham RV Hughes conducted a 7 year study of hydroxychloroquine for eye toxicity and found the patients had no problems. I have been taking it for 20 years or so.
What was found was in some patients who were prescribed 2+ tablets per day ie 400mgs+, some reported blurred vision. This was caused by the eye muscles and not toxicity, but obviously, the patients were alarmed.
To prevent this, it is recommended to start on a low dose of 200mgs a day, ie 1 tablet and if well tolerated, to increase the dose. I take 2 tablets a day, one in the morning and the other in evening or late afternoon.
I hope this drug helps you. It is a mild blood thinner and helps fatigue. It is used in treating SLE.
With good wishes,
Ros
have taken that medicine since being diagnosed have not noticed any change scince taking it does not help with dizziness or balance issues
Think Dr Holmes is getting quite a following of us APS patients now! He’s been great x
I was told just to go the opticians yearly. However I had been seen by a neuro-ophthalmologist prior to starting the medication and diagnosed with a mild optic neuropathy.
I hope Dr Holmes gets you sorted out soon x
I go to opticians yearly.I take 2 tablets every morning.I wasn't sent to one before or medical ophthalmologist.
I take magnesium malate to help with both muscle aches and getting to sleep at night. There are a lot of different types of magnesium, and not all doctors are aware or able to prescribe the correct type. For instance, you might get give magnesium oxide or magnesium citrate on the NHS, that probably won't help, as just about all the research is on magnesium malate for this particular issue of muscle aches.
All of the research on magnesium and muscle aches has been on the malate form. It was first used for the aches and pains of fibromyalgia and CFS.
I makes sense that it would work for APS patients because APS is as much a disease of the mitochondria as well as the autoimmune system, and muscles are, after all, made up of mitochondria. When we look at the muscles on bodybuilders we are actually seeing that they have more mitochondria. Conversely, some people with a mitochondria disease, including APS, often have difficulty gaining muscle or strength, even if they lift weights regularly. Poor functioning mitochondria (due to poor cellular ATP production), or less mitochondria are a significant reason why many of us feel fatigued. Help the mitochondria and we help our symptoms.
For this reason, it makes sense to take magnesium malate and it has the side effect of helping the heart, helping with stress and relaxation, and helping one sleep at night.
The dose used in studies gave 2400 mg of 'malate' from malic acid and 400 mg of magnesium. It can be bought cheaply off Amazon. Source Naturals do one, and that's the dose I've been taking. With any form of magnesium you know if you are taking too much because you'll get diarrhoea.
As for B2 I take that too. I not sure of the reasoning of your doctor. However, B2 lowers homocysteine, which can cause inflammation in the arteries and micro-clotting. Homocysteine, independent of APS, is as much of a risk for CVD disease as cholesterol. But for some reason it's never measured, unless you have it done privately. Many people with autoimmune disease have the 'at risk' variant of various methylation genes (MTHFR, MTR, MTRR, FUT2 and TCN2). Myself, I have the at risk variants. Therefore, if you take B2 it helps to manage homocysteine, but works better if take with B6, B12, and folic acid. This can be achieved by taking a single B-complex vitamin.
People with these at-risk variants, who have a poor methylation cycle, and who are prone to higher homocysteine, often have migraines, usually due to either inflammation or micro clots from their homocysteine levels.
None of these supplements interact with warfarin.
B2 has been helpful to me.
Hi i started amytriptiline for the shoulder pains and headaches migraines etc. Also take magnesium from natural marine salts 300 mg. daily works very well by relaxing muscles .hope that helps Elfie
Thanks everyone, for you comments and advice, had my MRI, waiting to hear from Dr Holmes with plan after he's spoken with Dr D'Cruz and Dr Hunt. In the meantime I'm waiting for GP to ring me tomorrow so I can request a blood form to check my magnesium and B2 levels and ask for ophthalmology referral for eye check. I will also contact DR Holmes in regards to which type of magnesium he wants me to have.
Plaquenil / hydroxychloroquine shortage update and a question 
Been on hydroxychloroquine 3yrs
APs and Fatigue
