LUPUS UK
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What do you take ?

So I am meant to take 2 hydroxy a day. I haven’t taken them for nearly a month and a half . I feel no different to when I did take them . So I plan to tell the rheumy on 23rd and ask if there is something different or if the hydroxy is helping with something more subtle that I don’t know about.

I was wondering what everyone else takes. I have RA as well and haven’t been given anything for that , my doc never talks about it. I’ve had methotrexate already and didn’t really like that 🙄 The fewer tablets for me the better because I’m terrible at taking them .

Also I haven’t been taking my vitamin D capsules . Is there any other way to get vit D without taking tablets ??

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Yes. I had a similar experience with hydroxy. I started going down by taking one on alternate days. After many months no difference. But then I saw my rheumatologist and he was really worried that I am undertreated and that hydroxy has many preventative effects. I absolutely trust him so am back on one a day. I stopped taking aspirin as well but that worried him even more as I have thick blood. I do take calcium and vit D because I have osteopenia. That's all I take and it is for prevention.

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That is very interesting. I have wondered if the hydroxyl is actually doing anything and have dropped back to taking it every couple of days - likewise the 75mg aspirin that I also am supposed to take. I was planning on discussing with my rheumatologist when I next get to see her as I seem to have no noticeable difference being on the hydroxy either and have been taking it for four years now.

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I don't rate it either but when I told the prof that I didn't want to take it, her words were, 'Hydroxychloroquine will be the very last drug that you stop taking'. Seems the docs have unwavering faith in it.

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Your best to have bloods checked as the hydroxy might be helping there

Vit D - I’ve just been researching foods with it in as the doc gave me capsules and I asked her not to give me ones with crap or E numbers in them, you should seee these things they are so bright blue they nearly illuminate the room! I’m not taking them!

Sardines, or most tinned fish, milk, yoghurt, calf’s liver. I think some nuts.. I tend to have a handful of mixed nuts every day

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I’ve got a blood test Tuesday , as I haven’t taken it for early 2 months now . It would be way out of my system . So be interesting to see my results !

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Milk in the UK - nor any foods but margarine (and that only to bring it up to the same level as butter) and one or two cereals - is not fortified with vit D after an industrial accident about 50 years ago caused overdose in babies. When you look at lists of foods with vit D they are almost always directed at the USA, not Europe anywhere. Less than 10% of the daily requirement can be got from food - unless you eat a large portion of oily fish (not all fish and it also depends what tinned fish is packed in) every day.

There is very little in food in general - except oily fish, egg yolks and mushrooms that have been exposed to UV light and liver. The main source of vit D in most people is exposure to the sun in the summer from May to September between 11am and 3pm.

This is the Lupus forum - how many lupies can do that? You need the tablets - and there are plenty without junk in them.

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I was taking 2 capsules a day . The more tablets I have to take the more sick it makes feel. So I made my hydroxy a must then and then my naproxen then if I was ok vit d .

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You can get high dose vit d - only 1 tablet per week for 20,000 IU, even less if you don't need as much. There are also spray forms if it is the tablet that is the problem - in fact, I hate any capsule medications, they seem to upset my stomach.

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Can you name this vit D sup with no rubbish in it?

Fortunately I can go in the sun

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Ask your pharmacist - every country has different brands. But i have to say - I have never seen one that is bright blue. And I wouldn't take it either!

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Which country are you in?

So you don’t have the answer to a vit D with no rubbish in it?

I don’t think you are correct in saying ask the pharmacist. They are in another part of the country and simply dispense my medications . They do not see me and have no idea how I deal with my health on a day to day basis.

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Any pharmacist can tell you the ingredients in any given brand of medication or supplement - they have databases. Doesn't have to be the one that dispenses YOUR medication.

There is no need to be rude - if it makes a difference I live in Italy. But I do know how to find out the brands available to me here. It is probably a problem for you because you are (I assume) in the US. In Europe we take our prescriptions to the local pharmacy - it's a side-effect of our socialised medicine systems.

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I wasn’t being rude. I was merely asking you a question and stating that I think your reply is incorrect.

I live in the UK not the US

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Then we will agree to differ. I lived in the UK most of my life so I do know how to use a pharamcist's advice.

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Try Holland & Barrett ones.

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I take white ones they are ok but don’t know name as they come in a pot. I am intolerant to yellow colouring so they have to find me the white ones. They are out there

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Thank you , I’ll have a look into it

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Hi,

I have lupus and Rheumatoid Arthritis, I take hydroxycholoroquine sulphate, methotrexate, folic acid aspirin and pregabalin. Never took so much tablets in my life, I’m rattling.

Sometimes I think the meds are working, I started this in

November but the last few days and nights I’m beginning to wonder as I feel sore and achy. However they must be helping according to my blood tests results.

I have one of they tablet sorters now, feel like an old lady but it helps me to remember what to take and when.

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Vit D: There is very little in food in general - except oily fish, egg yolks and mushrooms that have been exposed to UV light and liver. The main source of vit D in most people is exposure to the sun in the summer from May to September between 11am and 3pm.

This is the Lupus forum - how many lupies can do that? You need the tablets - and there are plenty without junk in them.

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If you are no longer on methotrexate, the hydroxychloroquine is your DMARD (disease modifying anti rheumatic drugs) for the RA. It is having an effect on the disease process and reducing the likelihood of you developing joint problems in the long run and becoming more disabled - it isn't something that will necessarily show on blood tests.

Until relatively recently it was quite common for patients to develop severe joint damage as a result of RA because it couldn't be managed so well. They have a range of drugs called DMARDs and they tend to start at No 1 (the cheaper end) with methotrexate which is the world-wide first line drug for RA, with a lot of experience with it behind it. Hydroxychloroquine is almost on a par.

If you want to see what JRA can do when NOT treated have a look at this inspirational woman, Lene Anderssen:

theseatedview.blogspot.it/p...

You rarely see people as badly handicapped as she is these days - because of the use of DMARDs. Not that it stops her doing a lot of things - but she is currently unwell with a fibro flare, since January.

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So the hydroxy will be doing something behind the scenes then and not help with my current pains

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That is almost certainly their reason for giving it to you, yes. You find out by not using it - and developing the problems I suppose.

Do ask your rheumy to explain to you - I have given what is the obvious reasoning, maybe it is different for you. But honestly - they don't use these drugs without a very good reason.

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Ok I’m going 23rd to only in a few weeks. So I’ll stay off it till then as I haven’t taken it for nearly 2 months by then Anyway . I will get them to properly explain it to me. If it is doing stuff behind the scene I’ll take it still . I also want something that’s going to help with the pain I’m having

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There is a very good Vit D oral spray made by Better Health called Dlux which comes in 2 strengths 1000 & 3000

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Ok thank you I think my capsules are 1000

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I think you can get tested by Better Health & they will check your levels

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No doubt at a price! The GP is far better value.

No - did them a disservice!!! They are called BetterYou in the UK and work with the lab I was going to mention - £28. GP is still better value - and it will be tested at the same place probably.

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Hydroxycholoroquine has been shown to have long term benefits for lupus patients, with fewer side effects compared to other drugs commonly used. The main worry with long term use is retinal toxicity, which is why anyone taking HCQ long term needs to have a retinal scan annually.

You may not feel any different even after a few months. Or, you may still have pain because you need a stronger drug in addition to the HCQ. IF methotrexate didn't suit you, there are other medications you can try. It is important to communicate to your doctor how your pain is effecting your quality of life so they can decide what type of treatment is best for you.

VitD is also available in liquid form, ask your GP for recommendations.

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Thanks . It helped in the start with fatigue like only by the smallest smallest bit . Nothing since that . I will discuss all this at appointment on 23rd. I don’t want to have take naproxen for long times because of side effects of that

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Hydrox. Has a very long half life so stays in the system for a long time. This may be why you feel the same at the moment. I came off mine over winter but am now seeing return of symptoms (probably in sync with the lighter longer days) so will be going back on. Hope this helps

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Thanks . I have been off for more than a 2 months really , as I was barely taking it before . I was taking it once a week if I remembered . So I think it’s totally gone honestly .

I’m going to see what they say on 23rd and I will take again if they say it’s best

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Lou, please keep taking it and discuss on the 23rd. Best wishes Kevin

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I’m just going to wait until the 23rd and see what they say

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Lou, I can almost guarantee that they will tell you to keep taking it. You might not notice yet the good it was doing as it takes a long time to work and a long time to come out of your system. Not taking it can cause a flare and it also stops the disease getting worse.

I completely understand how you feel and have done exactly the same as you in the past and regretted it. I stopped hydroxy twice and felt fine for about 2 months then had awful flares which took months (and steroids) to get rid off. Also a flare can cause permanent damage and you really don’t want that at your age 🙁.

I’m not nagging as I’ve been there and still struggle to accept these medications are for life but the alternative is much worse and if you’re not getting bad side effects it’s probably best to start them again right now and discuss with your rheumy when you see them (or ring them and ask?).

My experience is that they are not happy at all if we stop important medication without their permission. I am heading for a difficult conversation with my rheumatologist next week for a similar reason as I was experimenting with stopping a heart drug just for a few days to see if it was still necessary but stopping it caused me to repeatedly black out. Normally just seeing him makes me feel better but I am dreading seeing him with my black eye, bruised and cut head and face 🙄 because he will, quite understandably, feel I have let him down when he has worked so hard to try and get the medication right to make me better 😳

X

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If they were so important my rheumy would actually monitor me and care .

I could go a whole year without bloods and no one would care honestly I have already before !

When on methotrexate no one was monitoring me . That’s why I’m going to ask for a referral to a lupus clinic of excellence as I have nothing to lose because I feel I’ve been forgotten at and fallen through the cracks at my hospital

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That’s a good idea to get a referral to a specialist clinic - it’s really important to feel they care and have time for you.

We care though so take your meds!

X

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Hi

I take HCQ. A couple of months ago the Prof asked me if I felt the HCQ was working for me or not. I said I did not have a clue as I take MTX and also can't get off steroids. So in order to find out I would need to stop taking my other drugs and there is no way on earth I am going to do that.

Though from what the Prof says I am wondering if they are contemplating taking me off HCQ. I would not mind as at least that would be one less drug to take.

I think perhaps between the MTX and the low dose Pred all the bases are covered.

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When first diagnosed I was given steroids before taking to many tablets made me feel sick .

That initial hit of steroids really helped with pain in my hands and stuff . The methotrexate I didn’t think helped with my pain and neither goes the HCQ.

Like I’ve said if they do something behind the scenes to help I’ll carry on taking like if it helps not getting worse in long run. I want something to help with pain I have now .

I want to be able to sleep through the night without waking up several time changing shoulders in pain

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I am sorry to hear about your pain. When I am not flaring I don't have any pain really.

However to stay in this state I make sure I take all my drugs and also at the right times of the day. I do aqua and swim 3 times a week. And do the usual other things - eat well, drink lots of water etc.

I do get a wee bit of an ache in my left knee at night, so before I go to bed I rub Tiger Balm (white one, branded not cheap version) and that allows me to sleep through the night. Have you tried it?

Also just to say if I don't hit the pool regularly and work my socks off then I do start to feel niggles in my hands and feet.

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I find my pain is worse when I’m not at work , but there is pain all the time .

I went to gp about my shoulders and was given naproxen . I took that and it helped but I’m 18 and don’t want to take naproxen for rest of my life . So only use it went I can’t cope anymore

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Sorry to hear that LouLamb.

Yes work really does help as long as you can get the balance right.

Not sure what else to suggest. Give Tiger Balm a go. It works for me.

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Hello LouLamb

How are you? Looking forward to the weekend?

I noticed your post before but it's been a hectic week here with my three children and am constantly playing catch up here. There seems to be so many new members and posts that I want to reply to all the time! I could be on here 24 hours a day, but I don't think that would be right! Ha ha.

I haven't read all of the other replies that you have had, so excuse me if I repeat anything. But I did want to reply in full. So here goes.

I am very worried about you stopping your hydroxychloroquine, without medical advice. I think this drug is definitely helping control your lupus and RA etc more than you realise.

You have Juvenile Rheumatoid Arthritis and SLE, yes? And hydroxychloroquine is the only medication you take for both? Or rather, should be taking?

I do not think it will be long before you start to feel a lot worse because of not taking it. (unless you have gone into remission with both chronic illnesses).

I was told at one point - when my diagnosis was SCLE and I was told I had sun induced skin issues only and so would probably only need my hydroxy eventually during the summer months - so I was told to reduce over the winter. So from the start of the October I took 2 hydroxy one day and 1 the next - that was all - I only dropped 1 tablet every two days and by Christmas (3 months later) I was flaring and in bed. I had slipped back hugely. I put myself back up to the full dosage and it took a long time to get it right again. I have always resisted any attempts to reduce this med ever since.

Hydroxy is the first building block of medication for lupus. It's the starting point. There aren't many of us that don't take this drug. And it's probably a case of those that aren't on it, have had a nasty reaction to it and had to come off of it for that reason. The doctors find it very effective for many lupus symptoms. It is an anti-inflammatory. It helps with joints and fatigue etc. It is also relatively low risk compared with the much stronger immune suppressant drugs - methotrexate, MMF, azathioprine, etc. Hydroxy doesn't require blood tests to monitor kidney and liver function. The immune suppressants do. It's also a lot safer and less side effects than taking steroids for long periods of time.

But whatever we are, ultimately taking our lupus meds is keeping lupus and our flares under control.

My main concern is always kidneys and other organs. You realise that lupus can attack your kidneys and you often know nothing about it, until it's too late? So I see taking my meds, as a way of trying to keep my organs safe. From what I have read, those that are consistent with taking their meds and comply with their treatment plans, have a better outcome, in general.

Every year Lupus UK have a Lupus Awareness Month in October and for every day of the month they post a lupus fact on Facebook. Now if my memory serves me correctly, in the 1950s/1960s something like 95% of lupus sufferers died within the first 5 years of diagnosis, I'm guessing from organ involvement and infections etc - as it was so misunderstood and people's diagnosis were coming too late etc. But now, thanks for more awareness and better drugs, this stat is no longer the case, things have improved immensely and we now have a much better life expectancy.

I know someone who has JRA. She's 15. She's been on methotrexate for about 3 years now. Recently her doctors tried to taper and stop her methotrexate, hoping that her JRA had gone into remission, as it apparently does with some people. Unfortunately for her, it hadn't gone into remission and she's suffered - joints so swollen and painful they've had to be drained and she's had steroids injections etc. So sad for her. But RA can damage the joints and cause huge mobility issues. So, she has no option but to start on the methotrexate again.

I guess what I am saying is, none of us like taking these drugs. We'd all rather control these illnesses another way, or have a cure, or go into remission etc, but there is no other way and there is no cure.We all just hope that we will be one of the lucky ones, who does go into remission.

PLEASE discuss this with your doctor. Like I said, maybe your JRA and lupus have gone into remission and you'll not suffer any side effects of stopping the hydroxy - let's hope for your sake that they have - but you need to discuss the reality of this etc with your Consultant.

I hope I don't sound like a mum here, telling you off - I probably do - but I am very concerned for you. You've been with us for so many years now and you've come so far. Your qualifications and your job, passing your test and buying your car, going abroad for the first time and getting your life on track etc. It's been lovely to feel a very small part of that but I don't want you to get worse again, health wise. You're so young and have your whole life ahead of you.

As for remembering your tablets - I am far from perfect and sometimes I go to take my mornings pills and I realise I was so exhausted the night before and went to bed without them. But I have reminders on my phone calendar and I have my drugs on the self above the kettle, so I see them whenever in the kitchen, plus a post-it note on the shelf too - bright yellow with a reminder. Then, now and again my husband will say, I haven't seen you take your meds, have you? I think taking them at the same time every day does help. I take them after breakfast before I go to brush my teeth, so mornings I am very good at. Evenings, I am better if I take them after eating my evening meal and before I go to sit down - and fall asleep!

I hope I have helped a little.

From your concerned friend.

Wendy xx

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