Hydroxychloroquine and Methotrexate- worrying for nothing?

JessicaLizzie

Hi

Cutting a long story short, the application for me to go on Anakinra was rejected as biological treatment is only licensed for Stills Disease after trying two DMARDs.

So I'm already on 20mg Methotrexate injections and now have picked up hydroxychloroquine tablets (400mg a day). I'm really nervous. It says eye changes are common (up to 1 in 10 people) as well as nausea and stomach pain. I'm already feeling nauseous every day on this dose of Methotrexate, so I am worried it will make it even worse. And I'm really really worried about the eyes side effect. What if it causes irreversible damage? I'm 29, I don't want the rest of my life with eye problems. Rheumatology didn't give me any info about the medication except to get an eye test done as it can cause eye problems. That's it. Not been given any other information and only know what I do from reading the patient information leaflet, which admittedly covers most scenarios.

I'm just worried it's going to make me feel even more ill. I'm already dealing with a delayed site reaction from the weekend before lasts Methotrexate injection. I hate this, I hate being exhausted all the time, not being able to do what I used to be able to do. I don't want to take any more medications which make me feel unwell 😪😪

anneb82

Hi @JessicaLizzie

I've just read your post and just wanted to reach out to try and reassure you.

I've had arthritis since I was 2 years old and for the majority of that time i have taken Hydroxychloroquine. Ive taken Methotrexate and many other different drugs over the years and I am now in my 40's. Ive never once in that time had any problems with my eyes other than being short sighted. I know its scary when you start a new med and when Drs tell you things that you need to watch out for but as long as you follow their guidance - an eye test a year, tell the optician you are on Hydroxychloroquine and update them straight away if there are any changes with your eyes than the majority or people are fine. I think the statistics are 1 in 10 that have the eye side effect but there are things that they would do for you if you happened to be that 1 in 10 person. It really is ok to try the medication and see how it works for you. If you really are very concerned and anxious about it, then I would recommend speaking to your dr again so they know it is causing you concern - they could very well decided to use something else.

I've included the below link which is all about Hydroxychloroquine in case you want to read about it. Hopefully it will help to make you feel better about it.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/hydroxychloroquine/

Please let us know how you are getting on.

Take care

Anne (Moderator)

Becky88

I wanted to reply to your post and hope that it helps, if only in a small way. I have RA and several other related and unrelated problems. I have taken Hydroxychloroquine for about 10 years and can remember being concerned when I was told about the possible related eye problems that it could cause. My advice would be to ask for a proper yearly eye scan at the hospital's EENT department. I still worry about potential problems but this does offer me some reassurance. For me, and everyone is different, Hydroxychloroquine has been one of the easier drugs to take, with no real side effects.

I have also taken Methotrexate in the past, firstly in tablet form and then the injections. I ended up stopping it as it made me feel sick. Antisickness tablets helped. I remember having a problem with the injections but as I have been on several different medications, I can't remember exactly what it was. I have known other people who have tolerated the drug much better than I did.

I am still on Hydroxychloroquine and also now have one of the biologic medications. I am far from perfect in terms of my RA condition but I am lucky to receive the biologic infusion as it helps a lot with the symptoms.

I know that it is difficult accepting the changes and new medications. I have always found advice from people on this forum very good and it allows us to share our concerns with people who understand. I would also advise you to ask for more information from your Consultant or Specialist nurse. Tell them your concerns and ask for more information. Good luck.

JenHB

I have recently started on hydroxychloroquine - have been told to have yearly eye tests in the community and then every 5 years I get sent for one at the hospital.

Good luck!

stickywicket

For what it's worttg, Jess, I've been on meth and hydroxy for,over 20 yeàrs. I've always worn reading glasses and my sight is deteriorating a bit but nothing to do with hydroxy, just ol age😆 i know it's nothing to do with hydroxy because my optician knows I'm on it so takes special care at my annual appoint,ents.

I think you're right to be concerned about your eyes. I feel that, given the pre arious state of my mobility, I must look after mine but, if this is your route to the biologic (Even better if it helps without) I'd see it as worthwhile. Good luck.

JessicaLizzie

Ah thank you so much all that have replied. It's settled my nerves a fair bit reading the replies. I think that's the thing when you're just left with a patient info leaflet and nobody sitting to discuss it with you - you read a whole list of side effects and it sounds worse than living with the condition they're meant to help treat! I am still worried re other side effects e.g impact on mental health and nausea/stomach upset as these are things I am struggling with without adding in this medication. I have taken the first dose of hydroxychloroquine today though so will see how I get on. My consultant is calling me this afternoon so going to discuss concerns I have with her too.

Hermione

Hi JessicaLizzie

I think there’s a lot of concern about HCQ retinopathy (damage to the back of the eye) and people have trouble finding accurate information to guide their decisions. I was on HCQ for 12 years, on 400mg/day to start then 200mg, and decided to stop a year ago as my RA was mostly under control (hurray!) and I’m also on MTX; like you I was aware that retinopathy is supposed to be more common the longer you are on it. Fortunately I don’t miss HCQ but stopping might not be advisable for everyone. A friend who is an ophthalmology consultant at a large teaching hospital tells me that they have not seen a single case of HCQ retinopathy in the last 20 years and it used to be more common in the past when patients tended to be on much higher doses, so the reported 1 in 10 cases may be out of date info. These days I think doctors are perhaps more aware it’s a good idea to keep the dose to the minimum that’s effective. There are guidelines on the BSR website and also on the RCOphth websites (links below).  

https://www.rheumatology.org.uk/news/details/New-guidelines-retinal-monitoring-hydroxychloroquine

 https://www.rcophth.ac.uk/resources-listing/2609/

Many opticians now have the specialist equipment necessary for HCQ monitoring (OCT scans etc) so you may find your monitoring is done “in the community” rather than in a hospital ophthalmology dept. Hope this helps reassure you but make sure you are monitored and if you feel the guidelines are not being followed, question your consultant.

Hope also you’re feeling better in general. It took me a few months to get used to MTX and I had a lot of nausea (lost half a stone quite quickly which was a silver lining, I needed to!) but it did get easier, honestly.  

JessicaLizzie

@Hermione thank you so much for replying to my post. I've had a bit of a rough week, and think it is down to the HCQ. I have been unable to keep down food, and have been feeling nauseous, being sick, and having diarrhoea. I have spoken with rheumatology who have advised me to stop the medication. I am not sure where this leaves me in terms of treatment, and whether this means my next steps are biological treatments (the guidance is a bit different for AOSD). I went to have an eye test, and had the OCT scan which was normal. However, I did find out that I need glasses, which came as a bit of a surprise! I really hope that they don't make me try the HCQ again because I am 99.9% sure that the D and V is down to the HCQ (they queried it being a stomach bug but I feel fine in myself except for the unhappy stomach). I also get a lot of nausea with the methotrexate at this dose (20mg), despite being on the sub cut injections, so I imagine it is a combination of both (plus steroids)which has tipped me over the edge. It has been a grim few weeks, with three deaths in three weeks, so the above alongside the deaths, has made one rather unhappy Jess!

stickywicket

Three deaths in three weeks! Oh my goodness! That's an awful lot to take even for someone who is otherwise sailing thŕough life.

I do hope this is your route to biologics. I shall not hold my breath but my fingers are crossed.

JessicaLizzie

@stickywicket when it rains it pours eh!

I have left a voicemail with the Rheum specialist nurses to get back to me - have asked if this now means Anakinra is back on the cards. As far as I have researched, the biologics seem to have less side effects and are more targeted treatments (seems this way for Stills anyway), so I don't really understand other than for financial reasons, why I have to keep trying these horrible DMARD medications which suppress my entire immune system and therefore have the side effects if that to live with, when I could have something which is better? Am I missing something? Fingers crossed for a phone call tomorrow!!

p.s @stickywicket this forum doesn't work on my phone so I only come on here when I am on my laptop, but if anybody comes up/posts re Adult Onset Stills, feel free to tag me in it and I get the email notifications so I know to pop on and reply. I know you're on here more than me (hope you're keeping well). Hate to think of others struggling and know how helpful this site has been for me.

Arthuritis

@JessicaLizzie I am so sorry you are having such a hard time of it. You have done the best thing possible for yourself by coming here and learning about & from the experiences others in the RA boat. Each person I have found in my time here, has a unique experience & response to the DMARDs & biologics so what works for one may not work for another, but there's a little room to adjust in consultation with your Rheumy.

Here's my experience, from early in the RA diagnosis to a year later.

Terrible joint agony in the first 3 months, only relieved by cold gel compresses, with the DMARDs having seemingly little effect.

I later learnt it takes time for the rogue T cells eating your joints to die, and MTX drastically slows their replacement. MTX acts on any rapidly dividing cells, which is T cells on the warpath, cancer cells, and Gastro as the main ones.

You just confirmed what I always suspected, the nausea is due to MTX dose, not the delivery system, whether tabs or injection.
In practical terms I found after 3 months a lot of relief.

HCQ dose is weight dependant, so your rheumy should set it to match your weight to minimise risk.

However the nausea became more of an issue.

Here's what I do to manage:

Caffeine relieved my nausea, but also diminished MTX's anti-inflammatory effects, if taken soon after MTX, so not advisable 24hours before & after MTX. My theory (works for me) is once all the adenosine anti inflammatory receptors have been saturated, the excess serves no purpose other than make you nauseous, so after 24hours I treat myself to a coffee or a couple of Tesco Emperor oranges, which for me quickly banish the nausea without diminishing the MTX benefits. I only have this once a week, to avoid starting flare ups.

I found in researching how MTX works, is that there are thought to be 2 main mechanisms, blocking rapidly dividing cells, and causing all cells to produce adenosine. This acts as a powerful anti-inflammatory agent. It is also supposed to make you drowsy, and in my own view, it is also the source of nausea. However caffeine blocks adenosine receptors, relieving nausea, but unfortunately blunts the anti-inflammatory effects of adenosine. That is why I avoid caffeine on MTX day. It's tough adjusting the MTX dose to provide sufficient RA relief while avoiding nausea.
I have only in the last few months got to the “good place” in this balancing act. I am on 25mg MTX tabs , 5mg folic weekly and 200mg HCQ daily. Check with your rheumy if after 3months of MTX, you might be able to get relief from a lower dose based on your weight.

Unfortunately ALL of the RA treatments, DMARDS and biologics suppress your entire immune system, there is at present no targeted therapy that exclusively acts on the rogue T cells eating your tissues.

I have also found cutting back on sugars, particularly fructose & oranges, reduces flare ups, in my experience. Also my weekly nausea relief go to is a cappuccino & Tesco orange!

The biologics do not come without their own nasty side effects, so it's not a case of your rheumy being mean & horrid denying you an expensive medication, but trying to treat you with the minimal risk drug of those available.

Apologies for the rambling note… !

Now if only curing disease was more profitable than treating forever… 😉there'd be an avalanche of commercial research funding!

JessicaLizzie

@Arthuritis thank you for such an in-depth and quite fascinating reply. Weirdly enough, I have never really been much of a coffee drinker however since being on MTX I have been practically living in my local coffee shop and not understood why on those days I don't tend to feel sick. I am thinking it makes a lot of sense with your running theory! I also didn't know about it being the T Cells and how MTX works in relation to that. I've previously been too unwell to do more researching but as I am gradually improving, I am trying to educate myself more. I've always been a bit of a geek and love learning/spend hours researching topics online. I have read somewhere about trials of stem cell transplants in America to try and find a cure/long lasting treatment. We shall see…as you say, not in the vetted interests of rich pharma companies funding research.!