LUPUS UK

April's Topic of the Month - Coping with Side Effects (We want to hear your tips and experiences)

April's Topic of the Month - Coping with Side Effects (We want to hear your tips and experiences)

Our Topic of the Month discussion for April is 'Coping with Side Effects'.

It is common for someone with lupus to take many different medications over the course of their life, both for their lupus and for other conditions (which may be related). Some of these medications are generally well tolerated whilst others may present with a range of undesirable side effects which can have an impact on quality of life.

We want to hear your experiences of coping with side effects from lupus medications. Do you find taking your medication in a specific way helps to reduce side effects? Have you worked with your doctor to change your treatment to avoid a bad reaction? Have any changes in your diet or lifestyle had an impact on the side effects you experience?

We would like to hear all of your tips and experiences and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk

The article itself will be posted on the LUPUS UK Blog at

lupusuk.org.uk/category/blog/

All submissions will be anonymised.

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Reactions to drugs is an ongoing problem for me. I can’t take any immune suppression’s as they make me feel so ill or covered in red spots and body swelling up I am very allergic to most antibiotics with only 2 ,I can take

So if I do get an infection it takes me ages to clear. I am also allergic to lactose which is included in most drugs. There is also yellow food colour which makes me swell up like a balloon. You wouldn’t believe how many drugs are yellow. Why don’t they just make white ones. We don’t have sunset yellow in food why put them in drugs. With all this happening I am so struggling with the Lupus and Sjögrens not being able to control it the only way it has been controls is by steroids. As I took so many of them for so many years my body no longer makes steroids so I have Addison’s disease. If I get tummy up sets it will put me in hospital with my organs starting to close down. This has happened 4 times in the last year the last one being on Christmas Eve. Not the way I would choose to spend Christmas Day,stuck in a hospital on a steroid and glucose drip. Sorry for the long post but it’s been my big problem since the Lupus was discovered. 30 years ago

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Hi Crystal,

Can I ask what are your symptoms of organs shutting down with stomach problems? I ask because I've been ill up to 2 weeks with an 'IBS' episode and thought I should call the paramedics. But then I've been told so many times there's nothing wrong that I just stay in bed and hope for the best. But my body is saying something is wrong, no strength.

I thought I had Addisons due to symptoms and it's in the family. But test were negative. However I have collapsed after bad news from stomach pain. Alone at the time.

Thank you for any information you can share.

Sending positive thoughts to you, be well.

🌻🌻🌻

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You would soon know if it was Addison’s unless you also take steroids. When I get a crisis I can’t even sit up my body literally feels like I am being ripped apart. It then gets worse with my body feeling extremely heavy I just can’t do anything. It’s difficult to explain what going to die feels like. I get Ibs and just that is nothing it’s when I am violently sick or have extremely high temperature’s

Hope you can find out what is causing yours. Good luck 😉

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Hi CRYSTAL11.

Thank you for sharing your experiences. You have certainly highlighted the difficulty that some people can have when they are particularly sensitive to drugs or certain ingredients used in them.

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I have no idea how people cope. I had a bad reaction to taking asprin (cue really bad reflux, nausea and low blood pressure). I had to come off it and take another med instead, which so far gives me painful headaches. Steroids seem to increase my anxiety.

But in general I've been quite lucky with Lupus meds compared to some stories I hear. I wish they'd put fewer fillers and chemicals in, because we all tend to react to that.

What I do with meds is always take them with food, preferably something starchy plus protein so my stomach feels settled. I always have coated pills. It's hard not to panic when you feel some side effects, but with some you have to stick with it and see if it settles down (unless you feel really awful, in which case a trip to the docs is in order). Resting also helps, and I never start a new med without support being in the house (my partner).

I think it would help if there were more accessible helplines to talk us through it.

My general feeling is that while the meds save our lives they also make us feel ill too. My body feels a bit ravaged by medications and I'm fairly sure that I wouldn't feel so fatigued if I weren't on so many. That;s just a hunch though - not something docs would accept.

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So agree I think it’s the pills that are making me worse. I am gradually coming down with my doctors help good luck xx

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Thank you for sharing your experiences Treetop33. When you do experience side-effects from a treatment, do you ever contact the pharmacist to discuss them?

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The pharmacist locally to me does a catch up after I'm on a new medication, typically 2-3 weeks after I've started it. I don't do continuous reporting. Other than that I've not experienced much interest from docs from my seeming NSAIDs intolerance, or indeed about my illnesses in general. I mostly have to make decisions myself.

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Side effects are rather a nightmare for me. Anything administered IV or IM is likely to cause significant allergic or hypersensitivity reactionsi.e. Iron infusions, blood transfusions, B12 and many different vaccines. Tablets include Penicillin, iron supplements, stemetil, hypericum and even a new inhaler to name but a few . . . It's a complete nightmare and I'm very cautious about anything that I take these days although I sense eye-rolling by the doctors if I mention any potential issues. The only strategy I have is to avoid . .

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Hi

I don't have Lupus but I do have UCTD with lung involvement and find this Group very helpful in terms of some of my symptoms both from my condition and from the medication.

I have spoken to 2 Rheumatologists and my GP about why there are simple solutions to some of the side effects and yet nothing ever gets printed in the PIL. They all say there's no money in it for the drug companies to do clinical trials in order to put the info on the leaflets. So like many others I have had to go through tough times and figure things out for myself.

For example:

1 - MTX gave me horrendous mouth ulcers. They were worse than having a flare! Solution = saline 5 times a day 48 hrs after MTX jab stopped them emerging.

2 - HCQ - trips to the loo - when you need to go you NEED to go! Solution = split the dose, 200mg with breakfast + 200mg with dinner.

3 - MTX jab - 3 days of intense nausea and fatigue. Solution = a big NO to use certain brands.

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Thank you for sharing your experiences and advice Joy_1. Which brands of methotrexate do you find you have to avoid?

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Ironically the worst and best for me are made by the same Pharma company, Nordic Group. Zlatal is the pits and Nordimet gets the thumbs up.

The Zlatal needle is also thicker and thus is sore on removal + the whole epipen is just a lot cheaper in appearance, feel and action.

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Hi Paul

My tips for coping with drug side effects is talk to your GP about any concerns you have as a lot of pills can be changed or doses adjusted to help mitigate!. It's a juggle between risk/ versus benefit for us all the time!. Also important to talk to your Rheumy about any side effects you might get from immuno- suppressives!. It can sometimes be hard to know if it's the drug/ illness or infection causing problems!.

It's a good idea to read the patient info leaflets and if get any side effects to report them in the yellow card scheme. Details of this should be on the leaflet.

My tip for steroids is take them at breakfast as they are less likely to give you insomnia. And avoid any kids with chicken pox as this can be serious. If you do come into contact then a quick appt with GP is needed!.

Amitriptyline can give a very dry mouth so take lots of sips of water in the morning and it improves. Sometimes I can hardly speak !. I carry a little container of water in my handbag!.

Tip taking methotrexate is don't take folic acid supplements on same day as you take the MTX dose. . Your Rheumy clinic will tell you this.

It is important really to have a good medical team supporting you so that you can seek their advice if you have any worries!.

Hope some of this is helpfulX

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Thanks misty14, some really great advice here.

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I think one of the hardest things for me about taking such powerful drugs is that -whether injecting Methotrexate or trying to swallow huge torpedo shaped Mycophenolate tablets - I invariably feel like a self harmer.

So far 4 drugs have hospitalised me with chest pain/ arrhythmia and severe narcolepsy, anaphylaxis and pancreatitis - these being Sulfasalazine, Pamiprexole, Hydroxichloraquine and Azathioprine. Methotrexate made me very sick and upset my liver although I managed 2 years on it despite this.

I know I’ve been exceptionally unlucky in this regard because many friends have had no problems at all with these meds.

I’m apt to beat myself up when on these meds because there’s an element of personal choice each time and most rheumatologists do make this clear - although they also introduce and recommend them to us of course.

Now my vascular doctor at CTD clinic refuses to offer me medications again unless we know exactly what I’m taking them for. This approach suits me - I can’t afford what he calls the “splatter gun effect”

With conditions such as Diabetes and Cancer or CKD or after events such as strokes or heart attacks, there really isn’t much choice - it’s a case of take these medications or the consequences will probably be fatal.

But with Lupus and other rheumatic diseases there is often some element of choice. And the benefits can be very subjective and impossible to measure objectively. Side effects can occasionally be fatal.

So when it all goes badly wrong we can sometimes feel very low - not just because we have lost another option but also because somehow we feel our bodies and our own choices have let us down.

On the plus side I look after myself brilliantly when I’m on potentially toxic medications. So I eat lots of dark leafy veg and fruit and drink masses of water and watch my weight and try harder to exercise regularly, attend Pilates, don’t touch alcohol, avoid refined, sugary foods - take more care of skin and keep up good hand hygiene. When I’m off them again I tend to let myself go and don’t make such a grand effort to keep up a healthy lifestyle. I feel bad look more poorly.

All in all I think I’m marginally healthier on these disease modifying medications than off them but currently off everything at my rheumatologist’s instruction.

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