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Original poster

Anyone with Lupus about?

36 replies

blossomtree323 · 19/10/2020 22:36

I've been having problems with joint pain and fatigue for years, diagnosed with CFS and Fibromyalgia.

After I spoke to the rheumatologist this morning, he's put me on a drug that is primarily used to treat Lupus. My bloodwork is showing underlying inflammation and my body is attacking itself (their words). Bloodwork from a couple of years ago showed something simular but they didn't do anything then.

This has come completely out of left field and I don't know what to make of it. The drug I've been put on is Hydroxychloroquine.

If anyone has Lupus and takes this, did it help? How does having Lupus impact on day-to-day life? I already claim PIP and haven't been well enough to work for a few years.

OP posts:
loveyoutothemoon · 20/10/2020 12:53

@blossomtree323 Hi, I have Lupus and I'm on Hydroxychloroquine, I have been for about 5 years now.

I was ill all the time before starting it and soon after taking it I saw a massive improvement generally. I still have flares but most of them are caused by the sun, stress, over doing things, lighting, heat and chemicals etc.

I'm extremely sun sensitive and the summer is a complete write off for me, I'm still trying to accept this. But there are far worse off people than me.

I still work but sometimes it's a struggle, but I feel very lucky to be able to. I'm sorry you've not been able to.

In what way did your bloodwork show it?

Happy to help with any questions.
X

Original poster
blossomtree323 · 20/10/2020 14:52

Thanks for replying. I know that my bloodwork always looks as if I'm fighting an infection, but that's as much as I interpreted from the letter that was sent to the doctor and myself.
I don't have sun sensitivity and haven't had any rashes, which I think are two of the symptoms. How does the sun sensitivity show itself? Do you get headaches, rashes etc? I do get terrible headaches that have worsened recently.

OP posts:
loveyoutothemoon · 20/10/2020 15:35

I feel like I've got the flu, feel hot, get worsening pains, malar rash and blobby rashes. Same thing with lighting too.

Grausse · 20/10/2020 18:42

I don't have Lupus but I've been on HCQ for five years for rheumatoid arthritis. It's given for lots of auto immune diseases of which Lupus is just one. Consultant says I have fibromyalgia as well but I disagree.

It's one of the milder DMARDs. I have never had much in the way of side effects ( a bit of wind but only for the first few weeks). It can take up to 3 months to work and in fact my rheumy told me it's effect continues to build for about a year.
I saw an improvement after about six weeks.
When I had to stop it for a particular reason it took 8 weeks to wear off.
I would recommend HCQ as if it works for you, it's by far the least unpleasant drug in treating auto immune diseases.

loveyoutothemoon · 20/10/2020 19:55

I agree with @Grausse, it's deemed to be a very safe drug. When Covid first arrived, I was told that I was at no risk from being on this drug as it doesn't surpress the immune system like other DMARDs.

I've had no side effects either.

Redannie118 · 20/10/2020 20:03

Have you been given a Lupus diagnosis? As @Grausse states its given for a lot of autoimmune diseases, including mine which is Scleroderma( Systemic Sclerosis),which is a very similar illness to Lupus.
Not to alarm you but illnesses like Lupus and Scleroderma can be life limiting. You need constant monitoring and a full treatment plan. I would ask to speak to your rhuemy again. Ask for a copy of your blood results and again ask for a solid diagnosis. The autoimmune illness board on here is brilliant for advice as is Health unlocked online community.

Original poster
blossomtree323 · 20/10/2020 20:51

@Redannie118 No I haven't been given a diagnosis, but rheumo wanted me to try the drug for three months to see if it helps. I was diagnosed with Fibro about 4 year ago.
I'm just confused about it all and not knowing is making me really anxious. I was reluctant to try the drug but it was kind of pushed upon me and I really had to push them to say WHY I was taking it but they didn't really give me a direct answer.

OP posts:
loveyoutothemoon · 20/10/2020 21:36

I can understand your anxiety. It took me a very long time for a diagnosis but you're definitely on the right path.

At the moment they're not sure which you are suffering with so it sounds like they want to try certain things to eliminate or draw a conclusion as they are not completely sure.

I was diagnosed through UV tests as although I had some evidence in my blood it wasn't enough. Rheumatology never diagnosed me (although they said they couldn't say I didn't have it) it was photo biology. Even a skin biopsy was inconclusive.

I recommend trying the drug.

Grausse · 20/10/2020 21:37

So did your doctor actually mention lupus or have you googled hydroxychloroquine and found that?
You might get more answers if you ask anyone taking hcq as it's very widely used. Having said that maybe if it works it means the rheumy is on the right track, not that you necessarily have lupus?

Original poster
blossomtree323 · 21/10/2020 09:48

The rheumo mentioned HCQ to me and wanted me to try it. He told me to look on a website for more information when I said I wasn't sure. I saw it was used to treat lupus and the rheumo nurse had told me the bloods suggested that the my body was attacking itself. I asked the rheumo nurse if it meant I had lupus or RA. She said they couldn't say for certain.
I'm going to start taking the HCQ today. Did anyone get any side effects from it and if so, did they settle down eventually?
Thanks for pointing me towards the autoimmune board @Redannie118, I didn't know it existed. I'll take a look.

OP posts:
Mydarlingsleepthief · 21/10/2020 09:51

I got really extreme itching all over my body from it and had to stop taking it

Grausse · 21/10/2020 12:00

I had very mild gastro side effects which wore off after a few weeks.
My experience of many drugs is that side effects do wear off so if they are mild it's worth persevering.

FuzzyPuffling · 22/10/2020 13:46

Has anyone had weight gain or loss with hcq?

HoneysuckIejasmine · 22/10/2020 13:52

Hcq works brilliantly for me. I prefer BlackRock or Plaquenil formulations, don't get on so well with quinoric.

When I take it, I can live life normally with a few aches and pains. Without it, after about 8 weeks (time to completely clear my system) I couldn't stand up without help, much less walk or hold things.

I've been taking it for almost 15 years. I have my eyes tested (properly, at the hospital) once a year as it can affect vision as a rare side effect.

No impact on weight.

HoneysuckIejasmine · 22/10/2020 13:54

@loveyoutothemoon

I agree with *@Grausse*, it's deemed to be a very safe drug. When Covid first arrived, I was told that I was at no risk from being on this drug as it doesn't surpress the immune system like other DMARDs.

I've had no side effects either.

Yes, that's right. Hcq is an immunomodulatory drug, rather than an immunosuppressant. Smile
Grausse · 22/10/2020 14:41

Has anyone had weight gain or loss with hcq?
I'd say a bit of weight loss.
My weight is pretty stable, has been for 40+ years so I don't take much notice. It could be coincidence but my weight went down slightly after I started HCQ in 2014 and when I was off it for three months last year it went up a bit.
My Rheumatology nurse told the GP to avoid Quinoric. There is a report on the Lupus website that it can cause more gastric issues than other brands. It doesn't actually make any difference to me whcih brand I take.

HoneysuckIejasmine · 22/10/2020 14:46

Quinoric doesn't seem to be coated so it also tastes disgusting when taking it. Very shallow of me but I struggle to take tablets so the unpleasant taste is the cherry on top of the shit cake, as it were. I also find it less effective than BlackRock.

FuzzyPuffling · 22/10/2020 15:19

Thank you for answering my questions and sorry, OP for hijacking your thread.

I think it would be nice to have a lupus (and similar - UTCD, MTCD, Sjogrens etc- support thread - the autoimmune board is so quiet. Anyone else?

Original poster
blossomtree323 · 22/10/2020 16:18

A support thread sounds like a good idea @fuzzypuffling.
I've started the HCQ. Here's hoping it helps me. I'm glad it's helping some of us. The nurse said it's give me a immune system a bit of time to settle if nothing else.

OP posts:
CoffeeDay · 22/10/2020 16:54

I've been taking hydroxychloroquine for lupus/multiple connective tissue disorder for 9 years. No side effects and I get regular blood & eye tests (everything fine as well, knock wood). For me it was nothing short of a miracle drug. I went from being bedbound at least 2 days a week to being able to work 80 hours a week, travel, build my own business, have a baby and take care of her full time without any health issues.

HCQ is a fairly safe and widely used drug, just ignore what's been written about it in relation to covid. To prevent side effects when starting, I tapered the dose by only taking 1/4 tablet for a few days, then 1/2, then the full dose. Good luck!!

Grausse · 22/10/2020 17:42

I like the idea of an auto immune board but it's not well used, hence I always post on general health even if it's auto immune related.
For me it was nothing short of a miracle drug.
I think that's true for me as well. I only realised when I stopped taking it how much I had underestimated it's effect. My disease had progressed in the years I had been on it and when it wore off in January this year I could barely walk and was in intense pain in every joint.

HoneysuckIejasmine · 22/10/2020 17:59

Grause I'd agree with that. I've taken it since I was 19. I came of it after the birth of my daughter (age 30) as at the time it was contraindicated for breast feeding. Well, after 8 weeks as I say, I could barely move. My Mum had to move it to help look after DD whilst DH worked. I went back on it and took double dose, and it took another 12 weeks before I could function normally again.

I do still get joint pain now but I know now how much worse it would be if I was unmedicated.

Do any of you follow/use spoon theory? I don't especially, but it is useful in explaining things to those who don't understand.

I have UCTD with signs of SLE, family history of DLE - we think, she died of it before it was commonly classified.

FuzzyPuffling · 22/10/2020 19:26

Mine's UCTD, probably SLE with added APS! (I usually call it "lupus" for ease, or "wolfie" for short, as in "I'm feeling a bit wolfie today")

Grausse · 22/10/2020 21:45

What dose do people take?
I was on 2 tablets a day so 400mg for four years.
When I restarted recently after a gap the cns told me I could only take 300mg (so 2 one day and 1 the next) because of my weight. I'm not under or overweight I weigh around 10 stone and I'm 5'8".

FuzzyPuffling · 22/10/2020 21:50

I've been avoiding hcq, offered at my first rheumy appt for a few reasons... I don't feel ill enough ( but I suppose it's all relative), I am not reassured by what I was offered as eye monitoring and I wanted them to finish diagnostic bloods to find a "final" diagnosis first. Two and a half years on, I feel no closer to having my questions answered and vacillate between "I should take it" and "I don't need it".