I know it's an obvious one but what are your thoughts/experiences with taking supplements that may interfere with, in my case hydroxychloroquine, or other RA/PsA meds?
I started pizotifen a few weeks ago for severe migraine and cluster headache prevention. It worked like magic but I gained 3/4 stone which, at just over 5ft is not ideal with an inflammatory arthritis which is getting worse. I was also extremely depressed and a bit snappy. So I stopped taking it. On and off I have been taking high doses of magnesium citrate then magnesium oxide which is a recommended supplement for migraine/cluster headache. I also take a normal daily selenlium, b complex (for the B2 but can't get it on its own), zinc and iodine. They are all for my head and are often prescribed by neurologists, so I am certain of the research and evidence. anyone who has cluster headaches will know the desperation.
However, I've been on hydroxy. since 20th March and far from doing anything for symptoms (which were sporadic at first) I have now developed what feels like classic RA symptoms. Hands and wrists, feet, toes, ankles etc plus all the others elbows... anyway I called rheumatology and cut a long story short I have just received blood test request for GP and prescription for sulfsalazine but I am wondering if supplements have been responsible for hydroxychloroquine not being effective? I had thought that heads may be due to RA/PsA and that hydroxy would help for headaches too.
Any advice?
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Brychni
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Fortunately, I don’t suffer that type of headaches. But I take a lot of supplements which I always check for interactions before buying, and tell Rheumatology too.
One medication does not fit all ( wish it did) Hydroxychloroqine and sulfasalazine are my drug failures but others have done really well. Most supplements are safe with RA meds it Chinese herbals that are a problem according to my nurse . One supplement she told me not to take is spirunila as it can make RA worse
Thing is I have mentioned this to GP several times - that I take supplements as adivsed by migraine trust uk and in the absence of any referral after 20 years I have taken matters into my own hands. the GP knows I take hydroxychloroquine and the magnesium. No one has ever told me not to. In fact, thinking about it the rheumatologist knows too, wether she took it in or not I don't know. we had a brief word about my migraines and medication, but didn't go any further.
I always check with my pharmacist, I trust her knowledge more than the doctors where drugs/supplements are concerned! I also think three months on hydroxy is not very long, I started to properly notice a difference between 3-6 months (I previously tried methotrexate and that took longer than 3 months too, had to stop it due to side effects after 6 months).
Personally, I don't bother with any supplements.
It all seems a very slow process with dmard's! I hope the add on of sulphasalazine helps you!
the supplements are for debilitating cluster headaches not for RA/PsA. I'm often wiped out for over a week and can literally not do anything. It's far worse than the arthritis. Far worse and I'm really terrified of having an attack. Treating and preventing migraine and cluster headaches is notoriously difficult and generally, GPs and health care professionals don't give a toss. I could never have a job or commit to anything long term because they always get in the way and are unpredictable. I'm hugely sceptical about alternative meds etc but magnesium has been proven to help for cluster headaches and is often prescribed by neurologists. I'm still on the waiting list and appointment will be around Christmas time. In the meantime I was given pizotifen which I have learned from the experts at the National Migraine Centre is old and crap and not often prescribed by professionals who know what they're talking about.
😥 that must be terrible 😥 sounds like you don't have many options at the moment ☹️ your pharmacist should know if they're ok to take with your RA meds though. All the best.
So sorry for you. Hope someone can sort things out with regards to your pain. We’re not exactly treated holistically by the NHS and get chunked up into collections of symptoms that are dealt with by different branches of it! Rheumatologists are not generally clued up about migraines etc., so tend not to help in any meaningful way. It’s really hard to get all the ducks lined up so you get to feel pain free and normal. I have been on both sides of the fence - as a patient with severe RA over 30 years and as a senior nursing sister (NHS) so I can appreciate how frustrated you are. Good luck and sending you best wishes.
It's just occurred to me that perhaps it's because of the cluster headaches and migraines that I am so dismissive or unaware of just how bad my RA/PsA pains are - I am just grateful for any mode or state that isn't a cluster headache. Yes, if it were possible to choose between the 2, I would definitely take the arthritis: there really is nothing as horrible as a cluster headache. With every attack I wish I was dead and have come dangerously close to banging my head off the bathroom sink.
Im no help with the supplements but I totally sympathise with the migraines . I have Maxalt melts for mine . They’re the only meds that have worked consistently for me.
Have you tried the Sumatriptan injections? I used to have the melts but they kind of stopped working. The injections are good. I've had phases where they don't do anything but generally it's the best drug I have in my arsenal!
I used to have the injections , years ago. They really made me feel awful , not as bad as a migraine but still bad .
I was very relieved when I found the melts :). Interesting how everybody is so different in what works for them . Much like the arthritis drugs too .
The experts on drugs are pharmacists. They know far more than GPs, for example. At my hospital there is a special rheumatology pharmacist who I can ring with questions. I always ask her before starting any new supplements. If you don't have a specialist pharmacist, you can ask for a consultation in any pharmacy. I've found the pharmacists like to be consulted.
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