Rheumi prescribed hydroxy 2 months ago (2X200Mg/day). I have really struggled with it. I take Topiramate every day to control migraines and I think it is interfering with it as I have had several bad migraines and have had vision disturbances and migraine 'auras' most days since introducing Hydroxy. Has anyone else taken these two drugs together and did they have issues, or is it a coincidence perhaps?
Unfortunately, my next appointment with rheumi isn't until April 2024 and G.P. is not usually helpful as clueless about SS. Thinking I will titrate back down and wean myself off the hydroxy?
Thoughts/comments welcome
ATVMWF
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ATVMWF
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There is a known effect whereby hydroxy can make the topiramate less effective in its action when it is being used to manage epilepsy - but it doesn't always appear on interaction checkers.
says "Hydroxychloroquine may make topiramate less effective in treating epilepsy or preventing convulsions or seizures. Talk to your doctor if you have ever had epilepsy, convulsions, or seizures, or if you have any questions or concerns. You may need more frequent monitoring by your doctor to safely use both medicines, or your doctor may be able to prescribe alternatives that do not interact. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor."
Hi - yes I’m on both. I had to INCREASE topiramate dose which is in keeping with what PMRPro said. I don’t take it for epilepsy but for migraine and have done so for many years. I find it a very effective drug for migraine.
I’d talk to whoever prescribed it and ask if you need to increase. For break through I use Prochlorperazine which is very good for dealing with on the day attacks. I can’t use the pills you dissolve on your tongue like Zomig as they give me terrible migraine!
Like you I have been on Topiramate for years now and whilst I know it is not the best of meds and can cause lots of unwanted side effects I have kind of got used to them and they are manageable, as long as I don't have to keep upping the dose. What I could not manage was the upsurge in migraines and disturbances in my vision, similar to the types you get when a migraine is threatening but then never materialises. I have had a miserable 6 weeks.😏 with all these extra symptoms on top of all the usual SS ones.
I suspected it was the Hydroxy but as I had given a sheet of all my medications to the Prof and we talked about them I (wrongly) assumed he would not prescribe something that has a known interaction. How wrong was I????
I do not take other meds for my breakthrough migraines IE: Zomig etc. I was just told to take a strong painkiller as it was not safe to take any other migraine meds with Topiramate. Obviously, that is not the case as you do.....it seems we all get told different things. Can't help but think that doctors make things up as they go along.
I am going to call the consultants secretary and leave a message and ask for someone to ring me about this as I cannot wait until my next appointment in April 2024 and as I said in my post the G.P. is clueless.
Thanks for giving me some extra info about migraine treatment though. I will follow this up with my G.P.
As I said above I can’t use Zomig or any of those types of medication as that’s what made my migraines worse. It’s good to have the type of migraines you suffer from diagnosed. I have a primary headache condition plus vestibular migraines and have been prescribed Flunarazine for that. So there are a number of different meds depending on the problem you have. I have to say Topiramate hasn’t given me any issues with side effects at all.
I was diagnosed years ago with 'classic migraine' the one that comes on with the flashing lights (aura), then he blinding headache and feeling very sick but I never vomit. Over the years I have tried several migraine tablets and stuff to squirt up your nose but none of them helped. Have to say that Topiramate does the business and generally keeps them in check and I usually only get about 5 a year now but do get the odd few days when I feel like one is coming on but then it doesn't start. I was initially one 4 Topiramate a day but the side effects were not good IE: very runny nose, stomach upset and lack of appetite. Over a long period of time I have managed to get it down to 2 a day. I'm glad you don't seem to get any side effects from it as I know it is not a very nice drug and doctors prescribe it with caution.
Now I know that Topiramate can interfere with Hydroxy uptake I will try and get in touch with the consultant.
I take naratriptan when I get a migraine and also syndol which I find better than just paracetamol. I also am.on topiramate and 200mgs twice daily of hydroxy and never had any issues.I am also on propranolol 30mgs daily to control migraines and as soon as I try to lower the dose or come off them I instantly get migraines (I was on higher doses but my pulse kept dropping too low) so we found 30mgs in 2 separate doses worked fine.
I'd just ring the secretary as hes started u on a drug and u are not tolerating it and it needs to be reviewed by the clinician that started it. Maybe they could lower the dose to 200mgs twice a day instead? As I see u said u were on 2x200 twice daily??
I managed to speak with the Sjogrens specialist nurse in Rheumatology and she advised trying again on a lower dose. As I am due to go on holiday I've decided to wait until after I return to try again as I don't want to be ill abroad and want to enjoy my holiday without worrying. If after 6-8weeks I am still having issues she said to wean myself off it as it is obviously no good and I can't tolerate it with my other meds. I don't take any other prescribed meds for my migraines, just Topamax as a preventative.
Yes contact rheumatologist ASAP it's their prescribed medication that's causing issues. You need hydroxy to dampen down your immune system so something needs to be worked out for you. Do you see a neurologist for migraine. I did a few years ago and they upped my blood pressure tablets to help control migraine, apparently it works well for that. It did work pretty well. We need a multi consultant approach really which is so hard to find. Your rheumatologist is your first point of contact though. A one off private appointment to discuss everything works well but it's cost. The wait is usually only a few weeks and costs about £150. Hopefully you can get help for free though.
I saw a neurologist about 17 years ago about my migraines as they were becoming debilitating because of their frequency. I was getting 3-4 a week and was wiped out for 24 hours, or more. I was still working at the time and it was a bit of a problem obviously. Employer was not that sympathetic.
It was the neurologist that prescribed Topiramate. Initially he wanted me to take 6 a day but I couldn't tolerate that dose and worked up to 4 a day but then the side effects were pretty yukky. Through trial and error I have got it down to 2 and this keep my migraines in check and I only tend to get about 5 a year with the occasional 'disturbance' that threatens but doesn't go full blown. I have suffered from migraines for 50 years now and have tried just about every drug on the market, although, possibly not some of the newer ones. I got something that worked (sort of) and decided not to tinker with it.
I was alarmed when after taking hydroxy for 10 days I had several very bad migraines over the course of 4 weeks and things started jumping about on a daily basis. It's quite strange to see the object you are looking for suddenly blur out and move around in front of you and then to lose vision in one eye. Smells also becomes more intense and hubby says my words go backwards....😏. After 6 weeks I discontinued the hydroxy and after feeling bliddy awful for the next 10 days the vision disturbances have disappeared. I can only conclude it is the hydroxy...
I am a bit miffed because I told the Prof what meds I was on and why AND handed him a printed sheet so there is no excuse for him not to know. And they must know that there is a contraindication between the 2 drugs? Bit remiss of him to say the least. I am going to phone his secretary on Tuesday and someone has just told me their is a specialist nurse for Sjogrens so I will try and contact her.
I don't have high blood pressure so not on tablets for it, although, I know some people are on beta blockers for migraines.
Thanks for getting back to me and your sound advice.
Never be afraid to search out a different specialist if you are not confident in the treatment they give you or their ability to understand your particular condition. I do a lot of research into consultants now before being referred. I had a subarachnoid brain haemorrhage 10 years ago so I understand some of your pain. 50 years of migraines must be so hard to deal with. I do wonder if the dryness of sjogrens affects the brain with headaches and migraines. I always think there must be a cause to any effect. It may be good to touch base with a neurologist again and see if they can throw light on things. Maybe a fresh mri wouldn't hurt. I had one a few years ago to check if anything was going again. I was fine but it gives you piece of mind to know. I hope you get help soon. Sjogrens is so much more than dry eyes and mouth.
I am so sorry to hear about your brain haemorrhage and hope you have recovered well from it with no lasting after affects. Big hugs♥️
Sjogrens and migraines pales into almost insignificance after hearing that...almost!
Apparently underactive thyroid and migraines are a comorbidity. I also have Hashimotos', along with Raynauds, Vitiligo & Sjogrens. Someone once mentioned to me that if you have 3 or more A.I. conditions they should check for something called Autoimmune Polyglandular Syndrome (APS) and it sub types but honestly I don't want anything else.....
The things is that the consultant Prof I saw for my SS is considered one of the best in the U.K. and is the author of many research papers and runs numerous research studies. and cooperates with international universities and medical facilities. I am based in the N.E. but I won't say his name on an open forum but a bit of googling will possibly reveal it. I can't say I 'gelled' with him really and although he might know his stuff he is not patient centred, at least that is the feeling I got.
My G.P., or should I say the G.P. practice is clueless when it comes to Sjogrens. One doctor asked me how to spell it and didn't know it came under rheumatology. Begs the question; how do they qualify?
Agee about a fresh mri as it is 17 years since my last one. I'll float it with my G.P. but will not hold my breath.
Hope all goes well. Interesting about the more than 3 autoimmune conditions. I will look that up. I have Sjogrens, Lupus and Reynauds so I am collecting a full house like yourself😆
I have never heard of APS as in autoimmune polyglandular syndrome, always though it was anti phosphiloid syndrome but strongly suspect I have APS3C. Like you I don't want to inherit anymore, what I have got is quite enough to deal with.
I did see an endocrinologist and was tested for addisons a few years ago. I had a just positive 24 urine test and blood test but was ok with the acth test. I think those of us with so much going on can overwhelm consultants. We have to hope they catch all our problems before they overwhelm us. I'm seeing my Rheumatologist in a couple of weeks so I'll go through things myself in a bit more detail. I don't know about you but its the constant just feeling rough and not making plans or going out much that gets you down sometimes. I think I need more than hydroxy. I know there are other options that can be looked at in terms of medication, infusions etc. I hope you get sorted out as well very soon.
I know what you mean. You just can't plan anything from one day to the next, in fact from morning until afternoon.😏. I sleep very badly and wake up with night sweats a lot, told rheumi and various doctors and they are just not interested but I have to change my P.Js 1-3 times a night some nights depending on how bad it is. Now I am 67 so well past menopause and I know that sweats like this are a red flag for MALT in SS but consultant didn't even raise an eyebrow...all this coupled with the fatigue, joint pain, dry eyes etc well it does get you down but I suppose we haven't got much choice really but to get on with it. I just think if they had to live for a week in our shoes they would sharp change things- moan over haha!
Yes, push for more hydroxy if you think it will make a difference, or Rituximab, that seems to work for a lot of people.
I had a acth test a few years ago and all OK but having said that I am about to do my own cortisol saliva test through Medichecks as I suspect something not right as I have developed dark brown patches on arms...very strange when you have vitiligo. I am like a patchwork quilt.
I recently started gabapentin which I take 2x 300mg at night for pain. It knocks me out and I don't feel the pain hardly at all in my joints. Like you I wasn't sleeping well and many sweats, used to wake up 10 times or more a night. HRT helped a bit but the gabapentin helps me sleep like a baby and not so sweaty either. It is for epilepsy I think but great for pain too. They gave me amitriptyline first but that gave me horrendous dreams. I'm 53 and feel 73 sometimes. Infusions or upping hydroxy may well be the way to go as my immune system is kicking my backside at the moment after being quite stable for a few months. Maybe infusions are the way to go for you if your hydroxy clashes for you with your migraine medication. Let's hope we get help soon.
Gabapentin is a strong drug, not sure I would want to take that every day but if it does the trick for you then great. One of my friends halluncinated on it and saw pink monkeys stealing her bed clothes haha! I don't like amytripiline really and onlybtake it to get some sleep. It gives me a rotten headache and woozy feeling buts needs must, otherwise I would be a zombie.The doctors have no idea what we put up with, no amount of explaining seems to get through what it is like to live like this daily.
I hope you manage to get the infusions if that is the way forward for you but then again that is a step up in terms of treatment and is real immunosuppressive medication. Once you are on it there is no turning back...
Yes it's crazy what we go through. Maybe your friend was on too high a dose of gabapentin, I have not seen any monkeys or pink elephants or anything else. I don't even dream much now as I'm in such a deep sleep. I take one a night and two if I'm in pain at all before bed. I get up by 8am as usual. We all have different reactions to drugs and dose I guess.
Yay! I managed to get about 7 hours sleep last night, not unbroken sleep but the best I've managed for over 6 months! I am in bed 10 hours to get that 7 hours but hey who's complaining....LOL Yep the sun is shining for the first time in weeks and I've slept and things aren't jumping about the room, that is definitely a bonus.
Yes, we all react differently to medication and my friend has lots of allergies to ordinary things and can't tolerate many drugs. That is possibly why she hallucinated. She can't wear gold (she has a platinum wedding ring) and even reacted to her coil -yikes!
Thanks for all the advice and chat and allowing me to have a bit of a moan.
No problem. We all need to get stuff off our chest. I hope you make progress soon re medication. I can't wait for next week to go to the Lupus clinic myself now. Let us know how you go. I got a migraine today surprisingly. They're so tiring.
Hi ATVMWF ! I am sorry to hear that 😔. I was taking topimarate for migraines with aura for six months and then I stopped. I felt an improvement specially with the aura symptoms. A neurologist recommended taking vitamin B daily (especially riboflavin) and I also noticed an improvement.
Years later I started taking hydroxychloroquine. Now I take hydroxychloroquine, vitamin B and magnesium and in my case, it has helped me a lot with my migraines.
Ask your doctor about this and see what he or she recommends.
That's interesting. Can I ask why you stopped taking Topiramate?
I take several vitamins already including Vit B & magnesium , along with Vit D3 and K2, as I also have Hashimoto's and underactive thyroid sufferers tend to require a vitamin boost. The consultant I saw also recommended Seabuckthorn oil for Sjogrens, so I take that as well.
I have been on Topiramate for 17 years now and mostly without issues, bar the side effects in the early days whilst I was titrating up and down to find the correct dosage for me. Once I got a dose that worked I kept to it and have always resisted any attempts to change it as it keeps those blooming awful migraines down to a minimum. I get about 5 a year with a few dozen days a year of feeling like one is coming on but then it doesn't and all is OK after a good nights sleep.
I instinctively knew the Hydroxy was interfering with the Topiramate because I had 5 migraines in 3 weeks!!! and disturbances every day. Bit annoyed with the consultant as he was told what meds I was on and I handed a sheet as well but you know half the time they just don't listen....
I might have to face the fact that Hydroxy isn't for me and if I gave to choose it will be Topiramate to stop the migraines as I have put up with the fatigue and aching joints for so long now I am used to it.
These A.I. conditions are blooming awful as you can look quite OK but be feeling like death warmed up. 😏
That is a really low dose. I’m on 75 mg at the moment but used to be on 125mg a day. I’ve never heard of sprinkles! Must be because it’s so low a dose. What was the highest dose you were on at any time?
Also just to say, Hydroxy does take some time to get used to. It can upset your tummy and make you feel a bit yulk to start with. I assume they started you on 200mg a day? When I first started I had to take one a week…then wait for that to not affect me then add another one so I was on twice a week and gradually build up over a month or so till I was on a daily dose. My consultant said it was not a race and I could do it whatever way I wanted but better that I did it than give up. Knowing that could you not try again but perhaps adjust Topiramate dose on the day you take it until your body adjusts? Just a thought?
The sprinkles are the protected drug name and Topiramate is the generic name, a bit like Anadin and aspirin. Initially I was on 25Mgx 6/day but the side effects were awful so by trial and error got it down to 2 X 25Mg and it pretty much works for me and has done for 17 years.
I was prescribed 2X200mg Hydroxy a day and told to take 1/day for the first week than increase to the full dose after 7 days. 10 days in I started having some problems but persisted for 6 weeks and had to drop down to 1 again, then I stopped it. All the problems with migraines and disturbances stopped.
I’m only on 200mg of Hydroxy a day. Frankly I personally think thats enough for most.. also it can take a few months for the full effects to really work so only then would I personally decide if it was worth increasing to 400. Most Rheumys have no idea what it’s like and it’s up to us to see what’s right for our bodies.
I always thought Topamax was the brand name of Topiramate. I have just read they are capsules that you can sprinkle over food! I often get topamax tablets. So you are on 50mg a day then. That’s a fairly average dose. I sometimes used to increase my dose by 25mg a day if I had a few days with threatened migraines. I’d do it for a week and then stop. It would work pretty well. It’s something my neurologist was happy for me to do. Again you can discuss with yours being able to do some occasional adjustments.
I think putting me on 2x200mg of hydroxy was too high for me.
I have always had the sprinkles, apart from once I got the generic Topiramate and had breakthrough migraines, so it didn't work for me. I just take the capsules I don't sprinkle it on food.
Yes, on a pretty standard dose at 50mg a day and it seems to work and as they say...if it aint broke, don't fix it. It's going be the hydroxy that gets the elbow!
The neurologist told me to do the treatment with topiramate only during short time and check. In my case, it was much better after 3 and 6 months, so I stopped. For migraines, topiramate is usually taken as a preventive medication, and the duration of treatment can vary depending on the frequency and severity of the migraines.
I have never taken topiramate with other supplements or meds. As far as I know Topiramate can interact with hydroxicloroquine, magnesium and vitamin B, leading to a potential decrease in their effectiveness. This is because topiramate can increase the excretion of magnesium, the clearance of hydroxicloroquine, and decrease the absorption of vitamin B12.
Additionally, topiramate can cause a decrease in appetite, leading to potential weight loss, and may also cause metabolic acidosis, which can lead to electrolyte imbalances. These effects can further impact magnesium and vitamin B levels in the body. So taking those supplements could be helpful.
It is important to inform your healthcare provider about all medications, supplements, and herbal products you are taking to avoid potential interactions and to ensure the safe and effective use of your medications. Your healthcare provider may need to adjust your doses or monitor you more closely for side effects if you are taking all topiramate, hydroxychloroquine and supplements together. I take hydroxicloroquine and some supplements as well, but not topiramate.
I hope it helps, and you can discuss about that with your healthcare.
That is very, very interesting. I have been on it for 17 years and never had a review.
I told the consultant rheumi what meds and supplements I was taking and even handed him a printed sheet which he typed into my NHS record ffs! I am struggling to raise my B12 levels now I know why!!!
In answer to your follow on post, no I don't take Lithium.
I obviously need a meds review with G.P. and consultant but am really reticent to come off Topiramate as I don't want to go back the dark days of daily migraines. If I had to choose it would be no hydroxy...
Also I forgot, I guess you are not taking lithium as a supplement right? Because taking topiramate with lithium may increase the risk of lithium toxicity, which can cause symptoms such as tremors, confusion, and kidney problems.
Just reading your post above. As I’ve mentioned I’m both on Topiramate and Hydroxy and have Been for years. I also have Vit B12 injections and take magnesium. None of my consultants have ever mentioned the link between these meds and I’m under the worlds leading neurologist and headache specialist and some of the best Rheumatologists and Heamatologist in London. I have not seen any interaction at all.
Looks like I have just been unlucky and just can't tolerate hydroxy. Suppose it's not for everyone.
I've lived with the fatigue and joint pain for so long now it has become a part of me and if I have the choice I would take that over the constant migraines so it is a no brainer reallly which medication I would stop.
The link is that Topiramate apparently may decrease the absorption of vitamin B, magnesium and hydroxicloroquine, so taking them, in my opinion, should be beneficial not the opposite as I say in my post.
I’m not on Topirimate but do have regular migraines. I was put on Topirimate by my Neurologist but sadly couldn’t tolerate it. Anyway, it’s a long story - I’ll spare you! I really wanted to say thar just being on the HCQ alone lowered my migraine threshold to such an extent I was having migraines 2-3 times a week plus constant daily headaches that weren’t relieved by anything. My Rheumatologist took me off HCQ in part due to this.
I do hope you get sorted soon as it’s intolerable, take care ✨
Hi Sarafied,Thanks for the info and it is something I will bear in mind. I can tolerate a smallish dose of Topiramate to keep the migraines in check but not with Hydroxy but then again the Hydroxy may be causing the migraines anyway. Vicious circle...
ATVMWF
Absolutely, catch-22 for you. HCQ potentially messing with your personal migraine threshold, which you’d previously controlled with Topiramate, perhaps. It’s torturous, I really do sympathise.
Forgot to say, I tried different brands too, just on the off chance an additive in one brand of HCQ was a culprit. Also, the side effects taper off when you stop HCQ. I’m now back at my migraine baseline again and it took maybe 6-8 weeks (difficult to say as some of mine are hormone induced too). Just an FYI in case you come off it, although we are all different too.
Hi Sarafied,I made the decision to stop it as I was feeling so bad and as I am not seeing consultant until April 2024 no chance of a different brand. G.P hasn't got it on my repeats yet as a new med for me and anyway not much chance of getting a G.P appointment. Made decision that no migraines but usual fatigue and joint pain was something I could live with until I could contact Profs secretary.
Over the last 50 years I have never determined what was my migraine trigger, other than periods of stress but then again I used to get them randomly, in bed, watching TV, cooking, driving, out with friends etc. Never knew when they would strike.
Thanks for advice.
ATVMWF
You clearly can’t tolerate it at the dose you’ve been given and it’s not right for everyone. As you’d not been on them so long, it hopefully won’t take too long for you to settle down.
No, I don’t know all my triggers either, I can have a relaxing day and still have one. I think it’s more complex than that as they still don’t know the cause.
I hope relief is just around the corner - and also an appointment. ✨
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