Hydroxychloroquine, again

Elmbow · 25. Aug 2016, 17:19

Hello

Long time since I last posted with queries about my symptoms. Long story short, I am now taking hydroxychloroquine for autoimmune arthritis.

All was going well for a couple of weeks, with few side effects and I thought I was starting to notice some improvement in symptoms. Then it hit me, the irritability and mood swings and uncontrollable crying.

This is a listed side effect but I can't afford to mess with my mental health. So, I'm asking a few things:
Will this improve or is it likely to be a long-term side effect? I know everyone is different but is there a chance this could be temporary?
I just need some support from understanding people right now. I have put a brave face on for too long, thinking if I didn't let it become a big deal then it wouldn't be a big deal. The result is nobody knows how much this is messing me up.

I hope you're all doing well.

stickywicket · 26. Aug 2016, 04:01

In all my many years of hydroxy I've never had a problem but that's of no use to you. I think the things you mention are listed among the rare side effects but, again, if they're not rare for you....

I suggest you ring your rheumatology helpline for advice on this, Elmbow. Or, indeed, see your GP as the dizziness and low moods are not necessarily caused by the hydroxy.

Please let us know the outcome.

theresak · 26. Aug 2016, 06:37

I haven't had these side effects on hydroxychloroquine either, but I would definitely make an appointment with your GP to rule out nothing else.

Elmbow · 29. Aug 2016, 02:42

Thanks for your advice. I'm feeling better now but that was scary. I ended up having an asthma attack and had to get treated for that.

It's difficult dealing with side effects without yet feeling the benefits. I don't even know what I'm dealing with. I was given this medication and told I had some kind of autoimmune arthritis. Will they ever decide what kind?

stickywicket · 29. Aug 2016, 04:37

It's quite possible you'll never be able to put an exact name to your autoimmune arthritis. They are elusive little beasts and lots of people have to live with an imprecise diagnosis but it doesn't really matter because the meds are the same.

I'm pleased you're now feeling better, however.

Have you had asthma previously? Do you take anti-inflammatories? They can certainly cause asthma.

Elmbow · 29. Aug 2016, 06:29

I developed asthma around the same time as I started to develop joint pain, a couple of years ago. I've had chest x-rays so I know it's not anything like fibrosis.

I rarely take anti-inflammatories as the ones they prescribe don't help much. I've had prednisolone which helped but, again, affected my mood so I prefer not to use it.

I wondered whether I had psoriatic arthritis as I developed a couple of nail ridges but they are gone now. I suppose they wouldn't have given me hydroxychloroquine if they thought it was psoriatic arthritis, from what I know. I don't know.

stickywicket · 29. Aug 2016, 14:10

:? Why not? I think the aim is to get things under control but it makes sense to do that with a milder DMARD if possible. Hydroxy is a mild one which is why many of us take it alongside something else - in my case meth.

I know asthma is autoimmune. I had it as a child, grew out of it then grew back in

in my 40s when I began a specific anti-inflamm (ibuprofen) having had many other different ones for years. I've never heard of anyone else starting with asthma and arthritis together, though. However, if anti-inflamms caused the asthma there's no rule that says the asthma will leave when the anti-inflamms are stopped. Mine didn't. It's well under control with inhalers but always there.

Elmbow · 29. Aug 2016, 14:38

This is useful, thanks Sticky.

I thought Hydroxy was avoided in psoriatic arthritis because it can cause psoriasis - but maybe that's not true.

I was given a steroid inhaler when my spirometry result showed huge variation. I'm bad and I don't use it. They say the steroid just goes to the lungs and doesn't pass into the blood. Do you know anything about this?

This may sound dumb but this is all new to me - I wonder if there any chance the inhaler could have a positive effect on my joints, given I've responded well to oral steroids in the past? I might be tempted to use it if it killed TWO birds.

stickywicket · 30. Aug 2016, 04:28

You could be right about hydroxy and PsA but maybe the consultant doesn't think you have PsA. Lots of things can affect nails besides that.

As for inhalers – any regular on here will know I'm not big on taking meds but some are essential and the steroid inhaler is essential for me. I'm written up for two puffs twice a day but, until this summer, I've got away with one twice a day. I only need my blue inhaler on very rare occasions. I've always doubted that the steroids stay precisely in the lungs but, on the other hand, I doubt enough dissipates through the body to be of any use to my joints.

If your asthma is such that you required treatment for it last week were you then advised to use your brown steroid inhaler regularly? If so, you should for the sake of your asthma not your joints. I do reduce meds whenever possible but always in conjunction with my docs. Meds can, sometimes, do damage but so can untreated diseases.

dreamdaisy · 30. Aug 2016, 04:39

You have many unanswered questions, don't you? We may not be the best ones to answer because we are not medical specialists, just very practised patients. I hope my story will help to explain some things.

I was born with eczema and developed asthma when I was seven (both auto-immune conditions) so my arthritis is logical. It was the development of inhalers that, quite literally, saved my life. For the past forty five years I have had a preventer (blue) and a reliever (brown): the reliever contains a small amount of steroid which relaxes the airways thus easing the tightness. I use that first then the preventer (which I think is steroid-free but a doc would know) because my lungs will better absorb it. To be honest I don't think twice about using my inhalers because I remember passing out due to lack of oxygen: never again. The amount of steroids in these things is negligible compared to what we take orally in the form of prednisolone, they have never benefitted my joints.

My arthritis began in 1997 but, thanks to a poor GP, it was seven before I began my first DMARD which was sulphasalazine. That was soon supported by methotrexate (which I still take) and a variety of other meds. None of them 'worked' in that my arthritis improved but it is well-controlled which is the aim. The meds work by suppressing the immune system, the aim being to reduce disease activity. After a bout of pustular psoriasis on my palms and soles in 2006 I was classified as having PsA although I am rarely troubled by my skin.

I am now 57 and have had battled with my faulty body since day one. If you are coming at this from a healthy background then no wonder you are bewildered, good health prepares you for this in the same way that (as Kathy Lette puts it) needlepoint prepares you for round the world yachting. DD

dreamdaisy · 30. Aug 2016, 08:15

I send apologies, Elmbow, I got things back to front. :oops: The reliever has no steroid component unlike the preventer (which, when one thinks about it, makes sense). DD

Elmbow · 30. Aug 2016, 17:37

webmanager wrote:

Hi Elmbow,
sorry to hear that you are having a rough time with your medication and as others have stated it would be a good idea to ask your rheumatologist. If they have not given you a named diagnosis it may also be worth keeping a bit of a diary on your symptoms as this may help them with your diagnosis. However it can take some time. We have a booklet you can down load and fill in here https://www.arthritiscare.org.uk/about-us/news/607-my-plan-for-life-book-launches
Keep us up to date with how things are going
Best Wishes
Sharon

Thank you.

Elmbow · 30. Aug 2016, 17:49

Thanks all.

I've had eczema since childhood too. I think they must be all related because I'm the only one in my family with ANY of these problems and it can't just be bad luck.

I was told to use my brown inhaler if I'm needing to use my blue one more than twice a week. I know it's silly but I'm worried about weight gain. I'm not a good patient.

dreamdaisy · 31. Aug 2016, 04:17

Things are obviously not right with your immune system: there are around 300 kinds of auto-immune inflammatory conditions so finding out exactly which one may be the culprit is not necessarily straightforward but the meds are the same, just used in different combinations and strengths.

The amount of inhaled steroid is tiny and will not lead to weight-gain, unlike constant high doses of oral pred. It seems that you are not, understandably, used to taking medication on a regular basis whereas for me it's no big deal. I am paying the physical price for seven years of no medication but the past cannot be changed.

Asthma and eczema came to me courtesy of my mother, the psoriasis (or rather the arthritis) from my father but they were not troubled at all. I am an only child, some of my cousins have a little trouble with eczema but I am the only one to do it all 'properly'.

At least I know where this dross came from but it can start at any time. DD

stickywicket · 31. Aug 2016, 04:21

Autoimmune issues can have a genetic component but I don't think they always do. As a child I was the only one of my extensive range of uncles, aunts and cousins who had asthma and none of them has / had an autoimmune arthritis though my Mum had psoriasis and a niece has Crohns. It's the luck of the draw sometimes.

Use your inhalers as instructed. I started with just the blue one but acquired the brown steroid one when the blue failed to hold it. Since using the steroid one daily I now only need the blue one as a top up when I have a cold and, at my annual asthma check, they're happy with that.

It's good to keep weight down but a steroid inhaler isn't going to produce weight gain. Even if it were, breathing is the first priority

Hydroxychloroquine, again

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