Nailfold capillaries & HCQ

[redmaggie]

Hello and good morning! I have an odd question for you helpful people. Does taking hydroxychloroquine improve/mend the appearance of nailfold capillaries? And does it change antibody tests from positive to negative? I can't find any info about this. It sounds silly, but it took many years to get diagnosed with UCTD and I wouldn't want to go back to "square one" at the next testing. thanks in advance for any experiences! xx

[GottaAsk]

I don’t think it does! I’m UCTD and with scleroderma antibodies and they do lots of these tests on me and the hydro hasn’t changed anything since starting.

[redmaggie in reply to GottaAsk]

thanks! I hope you are OK after your hospital stay.

[GottaAsk in reply to redmaggie]

thank you! Doing good and finally getting answers at least. Hope you’re ok too!!!! And get all these answers sorted with your doctors

[Happykins]

Hi redmaggie,

Apologies that this is not really answering your question as I couldn't take hydroxychloroquine due to being allergic to it.

However I've been prescribed the alternative anti-malarial, Mepacrine for uctd, since 2014 and this has most definitely improved the appearance of my nailfold capillaries, no visual capillaries and no blood splinters in my nails, except during flares.

All the vertical & horizontal lines have disappeared and I've even grown a few lunalae for the first time ever!

Hasn't really changed my bloods though.

[redmaggie in reply to Happykins]

Oh, that's interesting, thanks for your reply

[OldTed60 in reply to Happykins]

to me this sounds familiar as I have same same with lines and nail splitting and splinter haemorrhages prior to taking 3g Mycophenolate - now all but sorted. . I think I have lichen planus rather than this being related to my systemic sclerosis Raynaud’s.

[dg70]

After a year of taking hcq my dsdna went from 55 which was pretty high on my hospital's measuring system to 12 which was borderline. The Rhuematologist put it down to the hcq dampening down my immune system and bringing inflammation down. I hope that's the case anyway.

[redmaggie in reply to dg70]

That's good news is't it. Thanks for sharing

[dg70 in reply to redmaggie]

You always wonder do these drugs really make a difference. Some like hcq just help things we can't always see or feel or stop symptoms getting worse. As long as we can take it without eye damage it still seems the drug of choice with least side effects.

[Jumper99]

Hi. Hydroxy has an anticoagulant effect and I’m wondering if this could be a reason why it would improve the capillaries.

[redmaggie in reply to Jumper99]

yes, that's a thought. It seems to improve many things, sadly my tummy doesn't like it! Awful cramps after 3 months. Still, I am about to try again after a year's break!

[Jumper99 in reply to redmaggie]

I’m about to try again too, break of several years!

[BonnyB]

Try to get the zentiva brand. Its in short supply though. Myself and lots on here seem to tolerate it much better than other brands x

[redmaggie in reply to BonnyB]

yes thaks, I hear its the best 👍

[OldTed60]

not sure where nailfold capilleroscopy comes into things - was it diagnostic of UCTD for you then? I’m interested because I was told normal nailfolds has blocked my diagnosis of CREST/ Limited systemic sclerosis but was fine for overlap CTD as capillaries irrelevant for all the others including lupus and sjogrens.

Saw the U.K./ world lead scleroderma Professor first time on Monday and my nails honestly looked so healthy after 3 years on Mycophenolate. But he did the capilleroscopy while I sat doing disclaimers, worried I’d lose my treatments of Losartan and Iloprost for severe Raynaud’s if keep being normal and certainly can’t see anything on my with naked eye. He said “well they aren’t normal at all - apart from for systemic sclerosis - so don’t know what your dr was thinking but anyway you wouldn’t see them with naked eye most of time - needs +500 lense and gel oil - maybe you’re thinking of lichen planus or eczema or psoriasis if you can see visible haemorrhages?

So basically if you have secondary Raynaud’s then yes would show in nailfolds after a while with distinct branch pattern for each CTD. But systemic drugs would only alter the nailbed surface not change the capillaries leading up to the nails he explained. Happily he was able to confirm from this that I do have sjogrens and scleroderma overlap CTD - and this is after/ despite 3 half years taking maximum Mycophenolate and maximum Iloprost infusions and Losartan too. He said I’m on excellent treatment and my rheumatologist and I are ahead of curve treatment wise apparently so he was delighted - as they are discovering things that are changing their approaches now at Royal Free Hospital’s scleroderma centre he explained.

[redmaggie in reply to OldTed60]

How interesting old ted. A explanation from the Prof is very helpful. I am pleased that you have some answers ad are getting good treatment. I have been seeing Prof D too. I asked my GP for a referal (beyond the interest of my local service!) Originaly I went for erythromelalgia (and reynauds) it looks like those are secondary now, plus more symptoms appear. Had nailfolds done in 2019, slightly irregular but havent had the promised repeat to look for progression. Now it will be the next visit (I've just been). Also some antibodies found. I was pleased that the team treat & follow up mostly based on symptoms etc. eg. not just trying to fit you into reseach criteria for a condition.

[OldTed60 in reply to redmaggie]

I guess my point is that we can still have changes even when nothing shows at all to naked eye but if it shows in your case it would be worth asking for another soon. I wonder if you could possibly find the money to pay for another capilleroscopy there for peace of mind? In my case I was offered this as optional extra for £30-£50 but I declined thinking would be waste of money I didn’t have spare. But then Prof D ran his own on the spot and wrote this:

[redmaggie in reply to OldTed60]

Hi there, do you know where to get a private test without having an expensive consultation? I am on the NHS at the royal free at the mo, and I know their policy is not to see the same patients privately. Thanks!

Also sending you my best wishes - I hear you are very relieved to have your definitive diagnosis. ☺️🙂

[OldTed60 in reply to redmaggie]

sorry. Haven’t a clue - I’m in Scotland - but could you perhaps just ask specifically for the nailfold test to be performed privately at Royal Free? I was offered microvascular testing as a separate test after my consultation but my nhs rheumatologist said shouldn’t be necessary as last one 2 years ago was entirely normal. So prof D did it on the spot a third of way into my consultation and found exactly what he was looking for to confirm scleroderma even though I can’t see anything at all on my very fair skin. I wondered if my monthly Iloprost and 3g Mycophenolate might prevent changes from ever showing but apparently not. And yes, although systemic sclerosis is not a diagnosis anyone would want, I’m extremely relieved to have it so unequivocally at long last. Apart from anything else it means I can keep my Iloprost infusions.