Anyone ever take hydroxychloroquine while having an MPN?
After several years of hints that I have an autoimmune disorder I’ve been diagnosed officially with anti phospholipid syndrome on top of CALR ET. And I’m being prescribed hydroxychloroquine. The pharmacy does not see a conflict with Hu.
Thanks for any responses.
Sorry to hear about the antiphospholipid syndrome diagnosis. Managing multiple conditions can be a challenge, particularly with rare diseases.
There is an interaction to be aware of. epocrates.com/online/intera...
Monitor/Modify Tx hydroxychloroquine sulfate (generic) + hydroxyurea (generic) - monitor CBC: combo may incr. risk of myelosuppression (additive effects)
Additional Consideration hydroxychloroquine in hydroxychloroquine sulfate - monitor ECG in combo w/ other drugs that prolong QT interval after hydroxychloroquine D/C due to long half-life (32-50 days); combo may incr. risk of QT prolongation, cardiac arrhythmias
The Monitor/Modify warning does not mean that you cannot combine medications. It does mean that you need to closely monitor your response and possibly modify dosing in response to how your body reacts. In this situation, my MPN care team would usually monitor CBC / CMP every two weeks until it was clear how I was responding.
Suggest you contact your MPN care team for the best guidance on an appropriate monitoring protocol.
Wishing you success moving forward.
Thanks very much Hunter. I will follow up with them as you suggest. I’m hoping to maybe get some relief from feeling so sick for the past 4 years.
Hello George1976 - yes I am an ET patient also on hydroxychloroquine for autoimmune diseases and yes whilst needing a good monitor the hydroxchloroquine works along with ET fine, in fact can assist keeping the inflammation that comes with autoimmune well controlled that in turn assists ET as inflammation of course does not help platelet levels. I have been diagnosed and been treated for ET for many years but a few years ago was becoming very ill and also very high CRP counts - my very thorough MPN consultant tested and tested so finding the autoimmune conditions and then referred me on to rheumatology where I was diagnosed and put onto hydroxychloroquine. At the time I was on Peg interferon and that can be the potential “problem” treatment for ET if you have autoimmune diseases - I certainly became very ill on it as it doesn’t combine with autoimmune diseases well at all for many so is good to bear in mind should that ever come into play for your ET. But with HU i have found the combination fine - I have been back on HU again for ET for the last year along with high doses of hydroxychloroquine and the two have balanced well together - I actually am able to be well controlled for ET on far lower doses of HU than the years I was on it previously when always needed really high doses and the inflammatory work of hydroxchloroquine seems to be a sideline benefit at the moment. All the best with your new treatment and I do hope the hydroxychloroquine helps you as autoimmune diseases are really hard going aren’t they
Thanks for your thoughtful reply Helpatlast. Same here, mine started after a few years of peg until peg eventually felt like the problem. I’m about to start today and am hopeful it helps me too.
Oh dear I’m on hydroxi chloroquine and Peg I take Peg every 6 weeks. I do hope that low dose will allow me to continue taking both.
Hard to know with complete certainty but I think it might. I was taking it weekly for 4 years.
Hi Good Morning I take Hydroxychloroquine for Sjogrens Syndrome incidentally I also have Anti phospholipid triple positive. Aswell as ET jak2 The difference the Hydroxychloroquine made to twitching leg pains and spasms as well as many other symptoms of Sjogrens brought such relief as I had been told there was no treatment.
There appears to be no drug interaction .
I have not been told that it is a treatment for Anti phospholipid .i was told though triple positive because I have not had a stroke or heart attack it can’t be called syndrome.
The only consideration is effect on eyes if long term use I am told I should have Particular eye test at 5 years . L
Keep us posted
Thanks very much Tipsy. Yes I also have some twitching and motor neuropathy that started exactly when I had a TIa and a cardiac “event” that had me test positive for troponin for about 12 hours in the ER. Platelets at the time where in the 300k range due to 4 yrs of peg so the ET was controlled but the anti cardiolopins were just starting. Have been taking a whole aspirin a day for a while and it’s been helping a little but this new doc thinks I still need “help” which is why she recommends HCQ. After almost 5 years of running from doctor to doctor it would be a miracle if HCQ helps even a little. I will be starting this afternoon.
hi, I also have Calr ET and am on hydroxichloriquine. After having my hair loss dismissed as a symptom of hu on several occasions it turns out I have an autoimmune disease Frontal fibrosis Alopecia. I’ve been taking it since early December. My haemoglobin has dropped and on googling it can cause anaemia.
My heamo knows I’m on it. The difference is I’m on Peg. I’d rather be anaemic than stop taking the drug. So now I’m haveing a little honey every day to raise my haemoglobin levels. Hopefully my next blood test will be a positive one.
I wonder how many more people with MPNs have an autoimmune illness.
Your question re A-I and MPN is a good one. This older report found association of prior A-I to MPN, and specified certain ones as particular risks: (Hazard ratios)
"immune thrombocytopenic purpura (2.9...), Crohn’s disease (1.8...), polymyalgia rheumatica (1.7...), giant cell arteritis (5.9...), Reiter’s syndrome (15.9...) and aplastic anemia (7.8...)"
pmc.ncbi.nlm.nih.gov/articl...
Also from what I've read there has been a sudden increase in A-I since Covid came about. One example report
jamanetwork.com/journals/ja...
Separately IFN is known to have an A-I risk, as on the label. So it's possible the recent adoption of widespread IFN use could show up as a small A-I increase in MPN pts.
thanks Wyebird. I do believe there is a significant autoimmune factor in MPNs myself. I developed a significant neuropathy a few years back and when I tried IVIG for it, it not only made me feel horribly ill for a month it caused severe cytopenia and dropped my alle burden by 21% from 51 to 39. Personally I think there could be something in the white cells of MPN patients that is involved and yet to be discovered
Hydroxychloroquine (HCQ) is a well proven med for some autoimmunes (A-I). Some pts get very good relief with it. One reply here notes the eye concern. After 5 years or so HCQ can cause retinal damage. So you absolutely want to visit an eye Dr who is familiar with HCQ to get baseline tests, preferably near or before you start. And get checked at least yearly. If there is emergent risk, it is normally after ~10 years if it happens, is slow, and caught well before permanent damage occurs.
Note at least for Sjo it can take up to 6 months to get a benefit, if your A-I is similar be patient.
I tried it for my Sjo, but am intolerant, my tinnitus got permanently worse from just two weeks of use. This is uncommon but something to watch for.
HCQ is generally not considered immune suppressive which is good. Wishing you good relief with the new med.
Thanks EP. Sorry to hear about your experience.
How much HCQ per day did you try?
I started at 200mg, a very low dose. I also started Leflunomide, combined with HCQ these can work well for Sjo, but Lef is a very strong drug and I was very intolerant.
HCQ default dose is often 400. From the Sjo forum I've learned that pts should have a blood check for circulating levels to set a most accurate dose. It's weight dependent and variable between pts. The retinal risk is life cumulative so a lowest effective dose is best. Some Sjo pts do not get any benefit, as with MPNs it's individual.
Your Rheum should be familiar with these issues.
It is a shame I can't take one of the only things avail today that might help.
HI George, I have PV, for 11 years and did take HU for at least 9 years. Have had no effects, but then, my dose was 500 mg daily.
I have E.T jak 2 and an autoimmune , Behcets disease...but to be fair, the peg inf has helped me a lot.... I'm on 65mg every 2 weeks now, platelets responded well...the only other thing I'm struggling with is, very high b.p....
Sorry to hear about the Behcets wormwood but good on the biweekly dosing of peg. My experience with peg makes me think weekly injections might be too frequent. Better like you and others who are spreading it out. Reducing the load of meds in general is always good if your symptoms stay in check.
Exactly x
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