Hello, I am looking for some advise regarding a change from Hydroxy to IFN or Rux. My WCC continues to rise and fluctuates between around 28-42. I have recently had a telephone consulation with Guys Hospital and was advised that WCC over 35 is quite high risk and they recommend a change in medication. IFN was considered but I suffer with some anxiety and I am concerned about auto immune conditions. I read EPguy's latest post with interest, which is very timely given the decision I need to make. I suffered with an extremely dry mouth for a couple of years and more recently some swelling in my face. I also have some odd reactions to vaccines (particularly when I have them closer together) including palpitations and sudden mild weakness in my legs. Both Sjogrens and lupus have been suggested, but never diagnosed. My GP did have the following tests a couple of years ago: Ana Pattern (Speckled); Ana Titre (1:80); Anit Nuclear Antibody (Positive); Double Stranded (DS) DNA ABS (Negative). I have no idea what thesse results meant but my GP tried to refer me on to Rheumatology but they turned me down.
So during my consultation the thoughts turned to Rux and I was asked about family history in relation to heart attacks and my cholesterol. My cholesterol is ok but I have had close relatives with heart failure during their 60's (I'm in my 50's). It was agreed that, although not ideal, Rux may be the better option for me and I was pretty happy with this.
However, I then consulted Dr Google about Rux and started to have second thoughts. The main risk appears to be blood clots, heart attacks and strokes and although this may or may not be directly related to cholestoral levels, I am having a tough time considering taking a drug to prevent blood clots, strokes and heartattacks when the drug may actually cause them!
Also, and possibly more concerning, I found that you shouldn't take Rux if you are an ex-smoker. I was not asked that in my consultation. Unfortunately although I haven't smoked for 20 years, there is no avoiding the fact I smoked for the 20 years previous to that. The final concern for me was an increased risk of cancer - in particular lymphoma. This is also a big worry for me because a very close relative to me died of lymphoma.
I understand that there are always going to be some risks with these drugs but this feels like such a big decision. Hydroxy is not working for me in controlling my white cells and now I have had it confirmed that this puts me at increased risk, I need to take some action. I wish I had known more about the ex-smoking risk and lymphoma risk prior to my consultation. I am not under Guys - it was a one off consultation and I now feel more confused than ever.
If anyone can share any thoughts or knowledge it would be gratefully received.
Thank you.
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As you have some suspicion of autoimmunity I understand your cautious approach to interferon. However, as you were happy to go with Rux until you ‘googled’ I would suggest that you contact Guys in relation to the specific worries you have. They really are very approachable.
It might be an idea to request ‘shared care’ with Guys particularly as you’re considering a change in medication. It may help your anxiety too knowing you’re under the care of experts.
Hello. Thank you , that'sa good suggestion. I hadn't thought of asking for shared care. I was just thinking that as a one off appointment I would need to have a new referral to go back to them. Kicking myself really because I spent so long thinking about my questions and thought I had everything covered - I didn't even refer to the notes and questions I had made before the appointment I was so nervous!
"Rheumatology turned me down." What did you mean? They are too busy or don't think you have A-I (autoimmune) disease?
Getting a Sjo Dx is often not easy. Could you get further tests? I posted on a long list. But SS-a, RH, CRP, ESR, would be a good start for autoimmune (A-I) tests. Your Dr will know what these are.
You do have a difficult choice. Is your Diagnosis PV?
Sjogren's also can cause lymphoma, not common but known. You're right, esp the Euro Rux label is frightening. But many of these complications also occurred in the non-Rux part of the trial. Over long term one concern on Rux is SCC, a type of skin cancer. It's not common and can be monitored by regular derm visits but is another consideration.
But the Euro Besremi label specifically says not to use Bes "if you have or had an autoimmune disease". This seems too restrictive as it would exclude so many, but is notable.
One thought:
On Rux you may need a medium to large dose if it works to get the WBC down. On Bes it's possible a small dose, like 50-75mcg, could be effective. IFN is unpredictable this way and it might work to your advantage here. Many PV pts in fact get WBC too low on Bes, as I did. So you could ask Dr about trying and holding the lowest dose for a while and watch for any psychiatric effects right away, and watch the WBC levels. But you also should ask for the A-I blood counts frequently if you go with Bes.
My preference is a combo low dose of both, it's been tested for MF, report here, but is not normally available to us.
Hi, Thank you this is a really helpful reply and I appreciate you taking the time. My GP tried to refer me to Rheumatology after I had the AI tests but they turned me down, I believe on the grounds that they didn't feel I met the criteria. Yes, I have PV and the dry mouth symptoms I had were about 20 years ago for around 2 years. That disappeared as quickly as it appeared and was a good 15 years before being diagnosed with PV.
I'm guessing you are suggesting a combo of Rux and IFN? I hadn't considered this. I had wondered about a combo of Hydroxy and Rux or Hydroxy and IFN, but that might just be me not wanting to let go of a medication that has protected me for a long while - a change feels quite frightening.
Correct on the Rux/IFN combo as william here is doing. Problem in most health systems is paying for it. I suspect I'd still be ok if I'd had such a combo.
Combining either with HU would be easy cost wise, and has been done. More broadly the idea is discussing with Dr the idea of combining the meds. Esp if you're comfortable with keeping HU in the mix.
I have a similiar symptom like yours, where the WBC spike and alele burden skyrocket to 90 Change from HU to Rux for a year but unfortunately WBC persist high.
Then got treatment combo Rux + INF and success to stability all blood profile till today.
The most side effect from INF is bruising mouth, that I can resolve with vit. B12, itchy with zyrtex.
Now, I am PV but living almost like normal persons
Talk to your doc to get the best option for your treatment.
I think you're the only member who is on this combo. (hoping to hear others) It's usually not covered by insurance in most countries where it's otherwise very expensive. Neat to know it's working so well.
I have been on Rux for PV for 6 years and read everything and have consulted a lot of experts, I have never heard of Rux causing clots or strokes or heart issues or any of the concerns you mentioned. As far as I am aware Rux has a good track record of reducing thrombotic risks. If you have any evidence showing these concerns about Rux I would genuinely love to see it. You could always go back to Guys and ask them. This MPN Voice website has a section explaining the pros and cons of each drug and I don’t think it mentions any of these concerns with Rux. The website and info will probably have been written or checked by Clair Harrison and her team so likely very reliable accurate info, worth a read.
Thank you. This is really reassuring. I was asked during the consultation with Guys about family history and heart attacks and my cholestral risks, which I suppose is what led me to google it. I wasn't referring to any studies, just what seemed to be coming back when I searched on side effects. I would be really happy if the risks are not as bad as I was worrying they may be.
The Euro label points to a lot of issues on Rux. But at least on this forum among all these the skin cancer (SCC) risk seems most real; similar to the Sjogren's being the most serious and real one on IFN. In the Last Dose thread member walshman provided this report that has recent details on SCC.
The skin cancer is a grey area with Rux, several experts I have discussed it with think it’s the likely previous Hydroxy or sun skin damage as opposed to the Rux. That would fit with me so far , no Hydroxy but daily UVB for 10 years, derm says my skin is excellent so far after 5/6 years high dose Rux, I avoid direct sun exposure though.
Personally I am not so sure as my experts, we probably need to wait on more data before concluding. I agree regular skin checks are essential even if we are not on meds.
The SCC Rux risk is clearly real, and HU shares it, but reports with separate comparisons would be good to see, there may be. The authors note 69% had prior HU use and note the possible contribution from that to Rux SCCs.
I also like to guess-tamate track our unscientific real world posts here. By that, we've seen SCC for both Rux and HU, and Sjo for IFN among others for all.
Having a "right" solution like they now have for Hep C would make life lots easier
Well done in finding the full paper. A few things to note N is only 73, if the data collected is from 15 worldwide centres what would be useful to know is how many Rux patients didn’t have skin cancers, quite a few I suspect. Secondly 80% of patients had MF, 18% PV, unfortunately MF patients are more immune suppressed. As noted 69% had prior HU use and a fair number had previous skin cancer. I suppose the million dollar question is how many of the deaths were actually caused by Rux. I don’t think it’s shown in this paper and look forward to further studies. In the meantime us on Rux or HU should be careful to avoid direct sun, cover up and wear factor 50 if poss. I have a UV meter that I point at the sun to check UV especially on holiday. The higher the UV the higher the risk and it’s not proportional to temperature, for example in Spain in winter it can be very sunny and 25 centigrade but the UV is 5 max which is not high risk , in the same place in April the temperature can still be 25 degrees but the UV can be 11 which is very dangerous yet some sunbathe in it all day, most smart phones now give UV as well as temperature and seem quite accurate. And remember todays tan is tomorrows wrinkles, keep safe.
In the bigger picture, I asked my business partner today "if you had to choose one of these conditions?" He has melanomas (the more severe kind of skin cancer) and SCC's the (Rux kind) all the time, all over the place with regular uncomfortable MOHs surgeries, other procedures, and related risk.
Between Sjo as he's seen mine and his high skin cancer state, he would choose what he has. I agree. (of course none of the above is what anyone really wants.)
It helped me put my Rux risk in in context. But my view is only that.
Yes as usual, it’s all about weighing up the risk/benefit of any drug. I also wonder reading the paper on the SCC’s spreading was there no monitoring in place and were they treated right away, I think we can’t even know exactly what the risks are in reality without better data
The only advice I have for this is have a long discussion with your doctor. There are risks with both. Looking at this from a positive angle you have choices! We didn’t always have choices and there will be more probably in the near future! Medicine is a fine balance of risk vs benefit. Both are good meds. Both have amazing potential and both have potential side effects. You could decide on one and if it doesn’t work out if safe they can try the other. I know this is a big decision. I really foresee other options coming out in the next 3-5 years and I feel it will be multiple. (This is my attempt at optimism). Good luck!
Thank you. Yes, you are right, I need further discussions with Haematology. I'm not sure I'm the right person for choices - I think I would rather just be told what to do. I think its the fear of making the wrong decision.
A lot of my patients are like that too. They just want me to make the decision for them when there are choices. I would discuss it with your doctor if they really felt one of these were the wrong choice they will tell you. And if not then listen to your gut! I try to always listen to my gut as it always seems to have the right answer! Good luck
Hi. I’ve been on rux for 6 yrs plus now. Started at 15 mg twice a day. Do watch out for skin cancers-I developed a nasty sarcomatoid scc on my face that was excised, recurred, re excised and then treated with 50 gy radiotherapy. Not necessarily a causal connection- tho the face cancer did develop fast after the dose was increased to 20 mg twice a day. There are now better warnings on packs. Rux is controlling my blood counts well. I take lots of extra vitaminB12, and alsi vit D and get monitored by dermatology. So far so good. Now I’m injecting EPO to keep Hb up. Tho that may have bumped it up too high recently.
Main practical problem is the new computer system supplied by EPIC (MyMarsden Huh) that makes it really hard to get one’s own results. Maddening. Anyone else had similar probs? Other English hospitals use it too- Guys? Certainly UCLH, and Cambridge.
Anyway, the ruxopeg results do look very good - and Claire Harrisons team are excellent.
Thank you it's helpful to hear from people that have been on rux for a while and I'm glad its working well for you, although I'm sorry you have had to suffer some concerning side effects.
You have already received some excellent feedback and suggestions. About the specific drugs available. You are correct to think that there is a risk/benefit profile for each of our choices. Since you are refractory to hydroxycarbamide, that brings it down to ruxolitinib or one of the interferons. Note that there are also drugs in clinical trial that may be an option.
You mentioned that you had not considered a shared-care arrangement. This would be an excellent idea. Consultation with a MPN Specialist is the best way to ensure optimal MPN care. this is particularly important when you have a more complex case. I am using a shared-care model for my MPN treatment. It works quite well.
Suggest that the optimal way to move forward is to review all of your options with a MPN Specialist who can best walk you through the risk/benefit analysis in your case.
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