hi there. I’m on Ruxilitinib for several years. I haven’t had shingles but my consultant arranged for me to have the shingles vaccine (two injections a few weeks apart)… Bruddery
Hi Nanmc, I am sorry to hear that you weren't informed about the possible side effects, the information on our website and in our information booklet on Ruxolitinib does say that one of the common side effects is: painful skin rash with blisters (possible symptoms of shingles (herpes zoster)). And: Ruxolitinib and infections - Ruxolitinib treatment has been shown to be associated with increased risk of infections varying from simple chest and urine infections to reactivation or occurrence of more serious infections such as shingles, hepatitis, TB and rare infections including a disease called Progressive Multifocal Leucoencephalopathy. mpnvoice.org.uk/about-mpns/...
I like to stay informed hence the question regarding the proportion of the occurrence with the group, and therefore the risk factor whether it is high or low.
I then can make a decision about the vaccine. I am due to speak with a consultant in a fortnight and will also discuss with them.
I've been on rux for 6 years and was warned shingles could be a side effect and if I got it to speak to the GP immediately.. I haven't had it and have recently been given the double vaccination - the letter with the appointment said I was to have them because of being on rux. However a couple of years ago I had a rash of tiny blisters round my mouth - like very small cold sores but not sore. The haematologist noticed them, had a swab taken which was positive for herpes zoster and that day told my GP to prescribe Aciclivor tablets. I was told after that to use the Aciclivior cream at the first sign of them reappearing which they have a couple of times.
I have not had a face to face consultation since before covid ( maybe I should ask for one!)
I try to assess the risk factor as much as I can. Your haematologist was observant which I believe is as important as a blood test.
Due a call in 2 weeks, it may well be with a doctor who has never met me previously I have found that they do not always know the answers to my queries! I jokingly said to my daughter she could take the call and they would be none the wiser!
Oh dear that isn't good. I would certainly ask for a face to face. During covid mine were alternated with one long gap in face to face - just a letter - due to staffing issues. My spleen started increasing in size during that period which wasn't spotted till the next face to face.Although I haven't had full blown shingles my son (no mpn) had it in his 30s. It was on his forehead and extremely painful. It got perilously near one eye and he had to see an ophthalmologist urgently. He hadn't realised what was wrong until the short window for anti virals had closed. He got away with it but other people report months of nerve pain after it. The vaccinations gave me a slightly sore arm for two days and very mild fatigue but I was very glad to have them.
I’ve been on Ruxolitinib for two and a half years on a trial, having had trouble with my blood counts for some time on Hydroxycarbamide.
I had the shingles vaccine when I was 70 ( in 2014) but had an episode of shingles last September that has left me with post herpetic neuralgia. I’m now on Aciclovir permanently to prevent further problems.
Recently I’ve been having problems with a rash on my scalp which I hadn’t connected with my PV, but will now mention to my haematologist, thanks to this prompt!
Lastly, I’ve had a lot of bleeding ( ruptured spleen, nosebleeds, bruising) recently, so am now booked in for a platelets function blood test.
I’m very grateful for the treatment and advice I get from my haematology team ( I’m in Essex UK) and manage with their help to live with my PV!
As Anslie noted, you got the old live vax, it is no longer offered in most countries. I also got that one about that time. It was 50% effective at best.
The current vaccine is Shingrix, which is a safer not live vax. It is closer to 90% effective. You should discuss this with your Dr.
From everything you’ve written here it sounds as if you should be changing your haematologist!
The Rux and shingle connection is on just about every bit of patient information literature there is. If Rux patients are being advised to get the shingles vaccine then you are not likely to get those patients reporting experience of shingles. I certainly had the vaccine before starting on Rux.
With regards to an increased risk of skin cancer. You’re right, it’s an issue for those on Hydroxy. However, the risk of developing a skin cancer while on Rux is twice that of Hydroxy. So, Rux patients need to be super careful.
But the thing that concerns me most from your post is the fact that you haven’t seen anyone from your haemo team since before Covid. That’s a long time ago now! You’re on two powerful drugs, both of which need close monitoring. Repeat telephone consultations with random doctors for the past four years or more is definitely not acceptable! Time for a referral elsewhere. Maybe a chat with your GP is a good place to start.
You wrote that the risk of skin cancer is twice as high on Rux compared to Hydroxy, sorry but as far as I am aware that is incorrect, do you have any paper or something to support that claim
Hi. If you watch the MPN Voice Vlogcast ‘In Conversation With … Dr Nauman Butt’ (available on the MPN Voice website) he talks about some of the skin issues that arise with MPNs and in particular, the increased risk of skin cancer.
It’s a complicated picture. The risk of developing skin cancer will depend of a variety of factors. Background factors like the fairness of your skin, moles and freckles, previous family history, sun exposure, age etc all play a part, as does the disease itself.
Dr Butt also highlights the impact of drugs to treat MPNs and mentions Hydroxycarbamide and Ruxolitonib. He says that there have been a variety of studies on both drugs (and implies there are a range of findings). However, he concludes that Hydroxy carries a risk of about two and a half times the background risk of developing skin cancer and Ruxolitinib about four times the risk.
Clearly this begs lots of questions particularly about the interrelationship of the disease itself and the two medications. For example, is your risk increased further if you take both Hydroxy and Rux? Or what if you stopped taking Hydroxy and started taking Rux? And does it matter how long you have been on one or both of the drugs? Is there a critical ‘tipping point’? I suspect this will be an area of much greater interest and research moving forward. (And I imagine other drugs are implicated too.)
The takeaways seems to be that, first everybody should be sun aware. Second, that MPN patients should be particularly vigilant about sun protection and pro actively checking for any signs of skin cancer. And third, patients on Hydroxy or Rux should be hyper vigilant about both these things.
I don’t think I am convinced by some of what this doc says, good points were avoid sun burn and keep an eye on skin.
He does say risk is 2.5 x on Hydroxy and 4 x on Rux, but says the evidence is very variable. I would like to see the evidence of those claims especially for Rux. For what it’s worth expert Haem at Mount Sinai told me in Oct 23 that Rux doesn’t cause skin cancer it’s previous sun damage and previous Hydroxy use. I think it’s a grey area.
Two other points I query about what Dr Butt says is
1 he reckomends checking the skin but doesn’t say how often, my expert derm says 9 months on average, I get mine checked by a dermatologist every 6 months.
2. Re treatments for skin cancer, Dr Butt jumps in to surgery and biopsies. My derm reckons the key is to check regular and catch early before it becomes a cancer, ie when it’s sun damage, treat it by freezing BEFORE it becomes cancerous.
The other ommison is that the risk of skin cancers is likely variable depending on which MPN one has, unfortunately the immune system is compromised a bit more with MF.
As mentioned in other posts I am 7 years on Rux and about 4 years high dose, I did about 10 years of daily UVB for itch, I have fair skin and my mother had melanoma. My derm says so far my skin is excellent, I avoid direct sun exposure and have not been on any previous meds for PV.
Excuse the pun but I think there are a few Butt’s in this vid.
I looked to the video. The hazards he lists are 2.5 HU and 4 Rux as you noted. He was esp wiggly on the Rux number "highly variable". I know there are some newer studies that found some risk of melanoma. Maybe the higher general risk is part of these. He was clear that the risk for both is accumulated dose dependent.
This is important data that should have citations.
He went thru the usual risk reduction steps. A key risk is age and underlying risk ie light skin, history of skin cancers. I've read this latter one is a top risk when taking these drugs which is not surprising.
I can't find the report I got that from, and Sjogren brain fog isn't helping.
I did find an opposite effect here, Rux can help treat a common type of resistant melanoma:
"Inhibiting activated JAK1/2 with Ruxo induces selective suppression of IFNγR1KO melanomas, providing a “targeted” therapy to treat these ICB-resistant melanomas."
The one I can't find indicated much more rare than non-melanoma but more than one. I should have saved it.
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But the one we should be esp vigilant is Merkel cell carcinoma (MCC) from below.
There is a pattern that non-melanomas are aggressive on Rux, this report has Dr Harrison among the authors:
"Nonmelanoma skin cancers (NMSCs) in ruxolitinib-treated patients with myeloproliferative neoplasms behave aggressively, with adverse features and high recurrence. In our cohort, mortality from metastatic NMSC exceeded that from myelofibrosis."
It seems to be for all MPNs (MF is used as a reference value) but the text is not available.
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One of its refs is a large study and has:
"squamous cell carcinoma with ruxolitinib (IC025) = 3.92....Merkel cell carcinoma with ruxolitinib (IC025 = 4)... melanoma with ruxolitinib (IC025 = 0.81)
IC025 >0 is a positive correlation from what I can find, while over 1 is significant.
So melanoma is a weak but positive signal. However Merkel cell is a strong positive. MCC is rare but bad so we need to be esp careful on that one.
This study looked for use of Rux, but not the reason for its use.
Another study has white race being a key risk, no too surprising:
"all non-melanoma skin cancers occurred in patients who were White or of an unknown race"
They show a non-melanoma hazard ratio (HR) of ~3 for an unspecified mix of PV and MF.(this is different and simpler than IC025 above.) This approx HR shows up in most studies I find that have an HR.
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If there is a study that separates HU history that would be illuminating.
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I recently rushed a derm visit to check some new skin things, my husband thinks I'm too worried. All is ok and I'm olive skin but still..with the evil other disease I am looking for things.
I read that paper on MCC and Rux but I wasn’t totally convinced by that one either.
I would not worry too much about worrying and getting skin checked, if you get it checked and all good then worry over. If in doubt check.
I think there needs to be more emphasis on regular checking and early detection , as mentioned my derm reckons most skin cancers can be prevented or easily sorted if detected early enough, hopefully he is correct.
you should be careful on Rux re sun and most especially if you have used hydroxy prior, it seems to be not clear if Rux causes skin cancer or whether it’s the previous Hydroxy or the combo, experts seem to disagree on which. It seems approx 6% on Rux get shingles, getting Shingrix vaccine is a good idea, it has a very high success rate in preventing it.
I am on Rux 7 years for PV, no skin cancers but no previous Hydroxy. According to my expert dermatologist most cancers can be sorted if caught early enough, he reckons regular skin checks are key, I get mine checked every 6 months, I am careful with sun exposure though.
I had shingles last year, it’s no fun, I had the Shingrix vaccine this year.
I had shingles some years ago when reasonably fit and healthy, pre MPN diagnosis or taking any regular meds. Although I took Aciclovir, at its worst I wondered if I’d ever get out of bed again and it took many months to recover and feel well.
That was just my experience and not one I’d want to repeat, regardless of any raised risk factors. With that in mind I didn’t hesitate to ask for the Shringrix vacc as soon as I became eligible.
I started taking Jakafi about 2 months ago. My oncologist had me get the shingles vaccine before the first dose and also put me on acyclovir which I will keep taking until 2 weeks after the booster shot of the shingles vaccine - so for a total of 10 weeks
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