Hyrdroxychloroquine

[awareness75]

Hi all.

So after a lot of tests and some back and forths of seriously low white blood cells, my consultant has decided to take me off Mychophenalate and put me on a very low dose of Plaquenil (easier to say it that way)

Now, when I was first diagnosed 14yrs ago with SLE, I have very little recollection taking this drug, mainly because the flare up was already in full swing, so all I remember is being told I shouldnt take anymore and it wasn't compatible.

So, my consultant thinks my reactions at the time was the Lupus and not the drug causing the problem.

This post is just to ask others first hand, those that are on Plaquenil; the good and bad of it, so to speak.

I'm booked for a flu jab on Tuesday ( I don't have an adverse reaction to the jab by the way) and told to still have it, regardless of low white cells, but that instruction was from rhuematologist helpline admin and not a consultant.

Feeling a bit apprehensive at the moment, so comments/experiences welcome.

Thanks in advance. 😊

[suzannah16]

I have low white cells too and have the flu jab every year no probs. I find I can only take zentiva hydroxy as the others give me a constant migraine which doesn't stop until the stuff is out of my system. I don't know if it's just me as others seem to get side effects more in their digestive system whereas I don't.

[Elena540 in reply to suzannah16]

Hi by taking the three drugs what were your symptoms before taking them as I’ve sle and struggling with joint pain and skin itchiness so badly

[Spanielmadlady in reply to Elena540]

Hydroxchloroquine helps with joint pain and fatigue.i take chlorphenamine (piriton) for itchy skin.im also prescribed pregabalin for pain. you need to see your rheumatologist for a review of your meds x

[Elena540 in reply to Spanielmadlady]

Thanks x

[smudge in reply to Spanielmadlady]

I was informed earlier this year by a rheumatologist that Hydroxychloroquine does really help with fatigue or joint pain (which I was told when I went on it 10yrs ago!) So she wanted to half my dose from 200mg a day to 100mg a day. I was reluctant at first but then thought well she's the expert so I shall do as she had advised......

I had a really bad flare up by day 3, I couldn't get out if bed and I hurt all over. I then had to have 2weeks off work and we had just gone into lockdown. So I reverted back to my previous dose as it works for me and unless thay want to put me on something else I plan to remain on that.

I also take gabapetin and fexofenadine.

[Spanielmadlady in reply to smudge]

I hope they allow you to stay on the 200 mg dose. 🤞i take 400 mgs a day

[smudge in reply to Spanielmadlady]

I meant to say 400mg per day to 200mg 🤦🏻‍♀️ as I take 2 tablets per day.

Yes when I spoke to the consultant again she just said oh well it was worth a try, just go back to what you were taking.

[awareness75 in reply to smudge]

Can I ask, the main purpose of hyrdroxychloroquine is to relieve fatigue and inflamation? If that's the case, this is something I only get very midly if I have a flare up, so I'm worried I'm having to take something that the negative side effects will out weight the benefits for my version of SLE, if that makes sense. In all truth, I think I've had everything there is to have, so almost a case of this is better than nothing.😕

[Elena540 in reply to smudge]

Thanks. Maybe I should up the dose also then. I can’t get any appointments with dermatology or rheumatologist

I was on high dose gabaoentin and it did nothing so I’ve come off of that?

[Littlemisssunshine87 in reply to suzannah16]

Just wanted to say I’ve experienced the same with hydroxychloroquine and migraines. I seem to be struggling with the Zentiva brand now after 6 months, was ok the first few months on it. Had the worst migraines ever this last month or so with bad eye pain.

[smudge in reply to Littlemisssunshine87]

I was on the Bristol brand for about 8 years and when I tried Zenteva I realised just how bad Bristol was for me then I happened to try the Black Rock brand and what a difference again, I feel like my fatigue isn't as bad as it was and the ache and pains are less. I asked my doctor to put that on the prescription and he said that he didn't realise there was any difference and my understanding is that the fillers are different so we obviously all react differently to those. So I would say trial and error really although I wish I hadn't lost quite so many years!

I hope you find one that suits you x

[Littlemisssunshine87 in reply to smudge]

Thank you, yes it’s def trial and error, this is my 4th time trying it, managed 6 months this time on Zentiva but only 3 weeks on the Bristol brand due to side effects.

[suzannah16 in reply to Littlemisssunshine87]

are you taking it every day? I think part of the problem with hydroxy is that I didn't start getting the migraines until I had been on it a while and then I had to wait for it to leave my system before getting them to stop. I have found it easier to take the tablets slowly and build them up. I started off on 3 tablets a week then alternate days [so I had 3 one week and 4 the next] but give myself a few months to find out if each increase was going to make me feel bad.

[Littlemisssunshine87 in reply to suzannah16]

Yes I take it everyday just 200mg, maybe will try discussing trying it every other day if this might help decrease some of the side effects. I got really bad migraines within 3 weeks of taking the Bristol one.

[suzannah16 in reply to Littlemisssunshine87]

me too and so dizzy I couldn't stand up. I still get minor headaches with zentiva but not really bad ones that last for days like bristol

[Spanielmadlady]

Hi I've been on hydroxchloroquine 400mgs for 2 years now.i had a bad headache every day for about a month but nothing since.my white cell count is often out of kilter but I take prednisolone so thats the reason my gp tells me.im also on mycophenolate.my flu jab is booked for thurs and I have had it in previous years without any issues.best wishes xxx

[awareness75 in reply to Spanielmadlady]

Prednisolone is the standard back burner, but I thought you either take the hyrdroxychloroquine or Mychophenalate. I'm suprised you're on both. Didn't know that.

[Spanielmadlady in reply to awareness75]

I've been on prednisolone for over 6 years hydroxychloroquine for 2 years and mmf for 1 year.i think there are quite of few of us on a combo of 2 or 3 drugs I dont think its unusual in the uk x

[Elena540 in reply to Spanielmadlady]

I thought taking prednisolone as a steroid bad for you and makes your face swell up? I have cirrhosis of liver maybe that’s why I don’t take the pred any more? Should I increase the hydrx to 400 and see?

[Spanielmadlady in reply to Elena540]

Taking steroids long term isnt good for you and yes you can developed Cushing syndrome ( moon face) but it does go once the steroids stop.i take 400 mgs of hydroxchloroquine a day but I check with whoever prescribes it before increasing it x

[happytulip in reply to awareness75]

Many people take pred, HCQ and MMF at the same time.

Its a case of what drug combination works for each individual.

[awareness75 in reply to happytulip]

Its all very new to me. I had 4 different drugs in 3yrs, because I just couldn't tolorate them for long, so I guess always having one drug, just seemed the norm.

[Spanielmadlady in reply to awareness75]

Hydroxchloroquine is the foundation for treatment plans with other drugs like mmf or methotrexate added in at a later date.

[miccika1 in reply to awareness75]

Why surprised? It's common. First line if hydroxychloroquine and if you are still having symptoms you add mycophenolate. Everyone has their own cocktail of drugs 😁

[happytulip]

Admin. Its in the word. Unless you have had advice from a clinician then check again about the flu jab.

Admin are trained in administration, although many think they have been to med school.

I wouldn't have a flu jab with a white count that low and I'm medically trained. But that's just me and my opinion.

I'd urge you to seek advice from the clinicians.

The flu jab is very important but things like infection and low white count and flares need to be taken into account.

[awareness75 in reply to happytulip]

I have an email address for my consultant, so I will double check with her.

[wendlebury]

Hi, I think it's worth keeping a diary of new symptoms for a month or two so you can see if there are any side effects - I must say I felt awful at first on Hydroxy and MTX but I felt awful anyway so a diary can help uncloud your judgement (I found the Bristol labs Hydroxy made me feel sick)

Sorry I'm not sure about white cell count and the flu vaccine, I usually have one and am OK but I don't know what my bloods are up to at the time. Good luck

[awareness75]

These comments are very interesting and informative. I was told about the nausea, which is the one thing I hate feeling and fear.

I'd also be interested how many of you have an 'active disease'. I'm very black and white; either good, no crippling day to day'grumbles' or very bad, lots of treatment and immediately in hospital.

[CecilyParsley]

Hi there, I took Planquenil without any issues for ten years, then a Rheumy upped the dose and I developed macular oedema and had to stop it. I could not take the Quinorec version as it caused diarrhea. Make sure you get regular eye checks with imaging of your macula. It does make you a little nauseous initially. Good luck xx

[awareness75]

Hi. Yes, I have premature short sightedness, potentially brought on from the levels of prednisolone and the disease in the past according to the opthamologist, so by default, i have a yearly eye test now.

[miccika1 in reply to awareness75]

Plaquenil toxicity test is not the same as regular eye test. If you are taking hydroxychloroquine you need to do a plaquenil toxicity test every year or every six months ef you have been taking it for more than 15 years. I really hope your rheumatologist explained this to you considering the rare but serious side effect.

[awareness75 in reply to miccika1]

Hi. No, he didnt explain that. I already get blurryness at times with my eyes. Don't really want potentially more.

[miccika1 in reply to awareness75]

That's very concerning that your rheumatologist didn't explain plaquenil toxicy. It has nothing to do with other eye issues you might have and the only way to prevent blindness in case you get this very rare side effect is to detect it before any symptoms. Which means regular test for plaquenil toxicity. I wouldn't trust a doctor that doesn't explain this to you.

[awareness75 in reply to miccika1]

He's part of my consultants team, so I don't really have much choice. I haven't seen my consultant in over a year now and made worse with this virus. Found out yesterday the email address i thought was the secretary, is no longer valid and for some reason, not able to contact secretary/for some hospital coordinator reason. This must be some new set up. No idea. Just very frustrating.

[Cal66]

Hi

I took Hydroxichloroquin on & off almost 20 years. Last year I had only been back on it for 4 months, when my consultant sent me for a an eye scan to check any eye changes, to cut the story short I have Retinitis & will possibly go blind. I now our always warn others of the pit falls of Hydroxichloroquin.

[awareness75 in reply to Cal66]

That sounds very concerning, I must admit

[miccika1 in reply to Cal66]

Sorry to hear about the plaquenil toxicity. How much time elapsed between the eye exam where they discovered the plaquenil toxicity damage and the previous eye exam. Im asking to determine if I should go more often for checkups...

[Cal66 in reply to miccika1]

I was on 400mg & it was only 1 year between the opticians eye test and the hospital Opthamology scan. I hadn't realised that my eyes had changed other when I had suffered terrible headaches affecting my eyes and that had been when had gone the previous year to normal opticians & was told that I was suffering eye strain and was given new prescription glasses.

[miccika1 in reply to Cal66]

And your normal optician didnt perform plaquenil toxicity test, just a regular eye test?

[Cal66 in reply to miccika1]

Opticians can't perform these scans as they are more specialised and look more detail of the back of your eye. At the hospital the scan consisted of these little dots of lights jumping around & every time you see the light you press a button, but I don't think that my eyes are as bad as he says, because that day I didn't know to take my eye drops with me for my dry eyes and they got tired and sore whilst doing the scan. I have since had 3 other scans and various other tests which shows that my eyes are not as bad as he says, but he keeps saying that these are flawed and he is sticking to his diagnosis.of Macular Toxic Retinitis.

[miccika1 in reply to Cal66]

Better safe than sorry. You could probably go to another ophthalmologist later to confirm if you are getting worse or not. Hope all the best for your sight!

[Lucky_woman in reply to Cal66]

Hi, I had the same problem. What are you using now instead of plaquenil?

[Cal66 in reply to Lucky_woman]

I have not been given any other medication to replace it, as I can't take Azathioprine because of white blood count or Sulfasalazine and I was on Prednisone for over 20 years, so medication wise I am quite limited, though I do get Depo injections when needed.

[awareness75 in reply to Cal66]

What are Depo injections?

[Cal66 in reply to awareness75]

It's a steroid injection, the full name is Depo Methylprednisolone injected into a leg muscle. The injection is to treat more areas in my body.

[awareness75 in reply to Cal66]

I see. Depo is the way nurses describe the contraception drug. Didnt think it was that!😳😳

[Cal66 in reply to awareness75]

I think that it is also used for other types of medical problems as well, but maybe the type of contraception could have a similar name

[Anjic]

I’m on zetiva brand of hydroxy can’t take anything else as they don’t help at all, just had the flu jab yesterday and I am ok but have mild flu like symptoms today.. I would check with your consultant first, just to be on the safe side .. good luck

[miccika1]

I had no issues with plaquenil . Taking 400mg per day for many years. Hope your initial reaction to it was a fluke. It's an excellent medication for many

[awareness75]

Its interesting that many of you have a 6 month tolerance on this drug, then start to get problems and migraines. I did some investigating in my past years drugs and I found that after 6 months, I was taken off Hyrdroxychloroquine, due to loss of appetite and anxiety. I didnt know there were different makes either. My packet is the Bristol version.

I haven't had any response from my consultant's secretary to get some assurance on this drug.

It might sound blunt, but in my personal experience, they're not that bothered if I take them or not. It seems noone has time to concentrate on LTH patients since COVID right across the medical proffesionals.

I can't afford to be plagued with migraines and pain at any time and unable to work.

[Blondie005]

I was diagnosed at 27 and was put on it then along with steroids. I'm now 56. I have taken the drug off and on, usually no longer than a year at at time and mostly when I have major flare ups since my diagnosis. The reason behind that is it can be bad on your eyesight so remember to get a vision check. Other than that, it's the only thing that makes me fairly normal. I would continually take it if it wasn't for my fear of going blind. One other side effect popped up my last go around taking the drug. Every time I took a shower, I had intense itching and just where the water pelted on me from the shower head. Mainly my arms, chest, ears and face. I have to take a high dose of hydroxyzine before I shower. Other than than, it's been a lifesaver! Good luck and hope you get to feeling better ☺