Hydroxychloroquine not made a difference

[DogsMakeLifeGood]

Hi there, I have undifferentiated connective tissue disease and sjogrens syndrome. I just wondered if anyone else found hydroxychloroquine didnt help them? There was no difference for me but I continued under the guidance of my rheumatologist and have now come off of it as am trying a different medication again following rheumatologist's advice. I was on hydroxychloroquine for 8 years so really tried and was so hopeful but did not do anything for me which is disheartening as would have loved it to made some difference.

[Tiggywoos]

Hi dogsmakelifegood great name !

That’s a really good post 😊 … the one thing I would say is I always wonder what hydroxy is doing “ behind the scenes “ if that makes sense . The bits of us we don’t see or feel .

I’ve been on it for 3 years and other than helping my rash (took 6 months ) it hasn’t helped me with fatigue or joint pain or headache bla bla .. BUT , maybe things would have been a lot worse If we’d not taken it (if that makes any sense )

I really hope your new medication helps you . Take care xx

[marypw]

I’ve been on hydroxychloroquine for 13 years and it hasn’t really made any difference to my symptoms, but my antibody levels have normalised and I certainly haven’t got worse. I’m also 13 years older and that has definitely brought up other issues!

[Suvi8901]

HCQ seems to be the “go to “ drug of choice for most rheumatologists irrespective of what lupus symptoms we have?

One wonders.

I don’t miss it.

I’m free of it. But?🧐

One thing is certain. We must challenge and keep questioning these generalist assertions from generalist medics.

[Jumper99 in reply to Suvi8901]

As I understand it, HCQ lowers the effects of lupus so it can be effective for all symptoms. Some people find that taking HCQ can lead to a reduction in the blood test results also. Per the nhs

Hydroxychloroquine is a type of medicine called a disease-modifying anti-rheumatic drug (DMARD). It works by blocking the effects of the chemicals released when your immune system attacks your body.

It’s not just used for lupus, but also for rheumatoid arthritis, APS, Sjogrens Syndrome to my knowledge.

Hope this explains a bit about why it’s the first drug given for many patients.

[Suvi8901 in reply to Jumper99]

Note also that rheumatologists tend to underplay the HCQ toxic optical side effects but that ophthalmologists don’t!

The Royal College of Ophthalmologists state that the monitoring of HCQ induced eye toxicity is often ignored/not stringent enough! At least 6 monthly eye checks with OCT and retinal screening.👆

[Bessy01]

I like others were prescribed hydroxy when diagnosed with SLE in 2010, stayed on it for 5 years with no affect so came off it, my daughter was diagnosed with SLE she tried it with no affect also. The fact it could affect your eyes was a real concern to me. It does seem to be the go to drug for consultants probably because they really don’t know enough information about Lupus.

[DogsMakeLifeGood in reply to Bessy01]

Yeah as it had no affect I felt the same.

[Goldie49 in reply to Bessy01]

Can I ask are you on anything else instead? Did the hydroxychloroquine give you any unwanted side effects? I have persistent tinnitus which I am sure I didn’t have prior to my years on hydroxychloroquine!

[DogsMakeLifeGood in reply to Goldie49]

Yes I am now on amitriptyline for muscle pain and to help me sleep deeper. Mainly the optician kept asking me to come off of hydroxychloroquine as he was worried about my eyes but then the rheumatologist would say it's the only drug we think works because of the soldiers in the war using it he said, but then it wasnt really making any difference to symptoms or to blood tests.

[Bessy01 in reply to Goldie49]

I was on immune suppressants but I got constant chest infections urine infections so came off them so I’m on no medication now. I take paracetamol and ibuprofen when needed.

[MikeP78]

Hello!

"One thing is certain. We must challenge and keep questioning these generalist assertions from generalist medics."

This is very true and I think about this a lot! But the question is 'based on what' do we challenge it? For me, in a complex disease like SLE, it would be almost impossible to say with certainty whether taking HCQ had a positive impact or not because it doesn't seem to have the immediate, obvious effect that steroids would have for example.

It is really helping a lot vs. I could just have a "good spell" and would be fine anyway. Or I am feeling poorly even though I take HCQ so it is not working vs. I would be a lot worse if I didn't take it etc. Of course if someone does not tolerate it that is a different matter all together.

One (or even a few) persons experience doesn't really give us good insights into what works or not, there is just too much variability. In the end it is really only good clinical studies that give some clarity. There are not enough of them for sure and even if they do exist, they unfortunately are often not as clear as we hope. For me though they give a clear indication and that's what I follow. One step up from guessing 🙃. Hopefully there will be better data available in the future!

[dg70]

It's hard to say isn't it. It hasn't seemed to have done a lot for me. After taking it for six months my dsdna dropped to normal levels and my rhuematologist said what it's doing is dampening down the immune system so we don't get worse or worse quicker. I have marginally more energy, my gums stopped bleeding, my headaches are less. I've gone up in dose as I was beginning to lose control again of symptoms so I'll see what happens but could I have reached this point several years ago without hydroxy? 🤔 it's a real dilemma as we just don't know what hydroxy is doing internally. I completely understand but I guess we have to try it as its the first line of defence and less harsh for our bodies than the next step on the drug ladder I guess.