I was diagnosed with PV in 2021 and on Hydroxy for about a year. Then in December 2022 was switched to Besremi. I've been on Bes for a little over a year and gradually increased dosage to current 300 mcg. My platelets and HCT kept rising until my last blood work when finally the platelets and HCT dropped. However, in January I started having severe itching after showering and antihistamines did not help. My MPN specialist suggested that we might try adding a low dose of Rux. I have a 6 month appointment on Monday and I wonder if any of you out there have been on a combined treatment of both Besremi and Ruxolitinib? If so, I would very much like to hear your thoughts. This forum is so VERY helpful, I continue to learn and benefit from all of the posts. Thank you!
Besremi and Rux Combined: I was diagnosed with PV... - MPN Voice
Besremi and Rux Combined
Hi C_Anne_Orange,
I have no experience w/ Rux, but given the possibility of side-effects**, [which admittedly may be reduced if you're taking a low-dose regimen], I feel like it's wise to ask about what other treatments you have tried that didn't help.
My experiences with pruritus have not been limited the aquagenic triggering that is regarded as classic for PV- just sitting with my shirt off for 5 minutes or more can trigger it- and it's more like a painful stinging and/or burning itch than just pure itchiness.
What I have found, is that a twice-daily dose of OTC Beta-Alanine [I think I take 3 grams] mixed into a drink has been essentially life-changing.
It's something I learned on here, and I have using it for a little less than a year, but while it's not anything like a permanent cure, nothing to do with MPNs seems to be permanent, except having it.
To read more about Beta-alanine and it's more general use as a 'fitness' supplement - look here:
healthline.com/nutrition/be...
For what it's worth, before I started taking it, I did a search of the medical literature, looking for any contraindications, medication interactions, and/or adverse effects, and did not find anything.
The only possible exception is the [well-known and harmless] post-dose tingling and/or paresthesias, which I do not find uncomfortable, or bothersome, and which I mainly feel in my face.
As we're both here in the states, if you like, I can send you a link to the Amazon site where I sourced it, and found it reasonably inexpensively.
I hope this helps [but at least it can't hurt you]!
Best,
PA
**Rux adverse effects: "Jakafi can cause serious side effects including low blood counts and infection. Some people who take Jakafi have developed certain types of non‐melanoma skin cancers. Increases in blood cholesterol levels can also occur" .
Source: jakafi.com/
Thank you for your very helpful response! I agree and I’m reluctant to add on another heavy duty drug. I would love to try the Beta Alanine and would appreciate the link on a specific product. My itching is also like yours- not always water related but more intense after water. Will try your suggestions and talk with my Doc on Monday! Very timely and so helpful! Very much appreciated!
hi PhysAssist
I have a question for you. I have both pruritis and skin tingling/numbness mostly in the arms/hands. I thought I had read on this site that BA was being used effectively for the tingling. If a side effect of BA is tingling would you recommend I not try it? My skin tingling bothers me incrementally more than my itch, btw, I have PV diagnosed in late 2022. Appreciate your thoughts and if you do think I can try BA, because there little to no downside, I would love the link of the product you like since many pop up on Amazon.
Hi rmfisch,
I was also concerned about the side-effects from B-A, because my "Aquagenic Pruritus" [AP] is only partly itchiness, the more troubling part being painful tingling and pins and needles sensations, but when I take the B-A, I mostly experience flushing sensations and only slight tingling which [for whatever reason] is limited to my face, and which I find very tolerable.
For a bit after starting to take the B-A, I questioned how much it was working, but all I had to do was skip it one morning, and I was miserable again, so it clearly improved my otherwise intolerable symptoms.
Ironically, although the AP is regarded as a classic symptom of MPN's and PV, especially, I had it [the AP] for at least a decade prior to my eventual PV diagnosis- as my Hct and Hgb continued to climb, and my primary MD had me trying to control it by donating to the blood bank [Red Cross]- something which is actually taboo once you [we] have been given the MPN diagnosis.,
The B-A I bought wasn't that expensive [about $20 US for 1 pound [500 grams] or $1.11/oz] on Amazon, especially at the 3 grams/dose that is recommended. I started at 1.5 grams, and once I saw how well it worked, and I tolerated it, I increased to 3 grams twice daily.
On my 2nd purchase, I looked around more and found a less-expensive source that is only $0.59/oz., and it is working just as well as the more spendy brand.
I have not seen any effect on my strength or muscle endurance yet, but one can always hope... 👍😄.
As always: YMMV [Your mileage may vary.]
Best,
PA
Thank you so much PA. One last question on the BA-it looks like you’re taking powder and I see it comes in tablets as well. Is there a difference in your mind or just preference. Seems like the tabs are easier
Hi again,
My only issues with tablets are what are the fillers and binders used to make them, and will they dissolve quickly enough to be absorbed.
Both questions are easily answered: the 1st by reading the label ingredients, and the 2nd by dropping them in a suitable liquid.
The first question comes up because I have seen at least a few medications which used lactose as a filler- which caused tolerance problems in sensitive patients. Weirdly, if I recall correctly, one of them was the earliest formulation of Prilosec- samples of which caused a couple of our patients no end of lower GI distress- the upper GI form of which it was supposed to relieving.
I will say that the B-A I have received has been crystalline in form, readily dissolved in everything I mixed it into, was easily measured using the provided scoop, and did not add or have any discernable flavor or aftertaste.
Best,
PA
The combo of interferon (e.g. Besremi and Pegasys) plus ruxolitinib (Jakafi) is considered the most effective (and expensive) and easiest to tolerate treatment for aggressive cases of PV. That's because only low doses of both are needed to mitigate both disease progression and symptoms.
Excerpt from a 2020 paper about the combo: "In conclusion, combination treatment improved cell counts, reduced bone marrow cellularity and fibrosis, decreased JAK2 V617F burden, and reduced symptom burden with acceptable toxicity in several patients with polycythemia vera or myelofibrosis. ncbi.nlm.nih.gov/pmc/articl...
What an interesting article! It’s the first discussion I have seen on a combination treatment. While I struggle to follow the complex details it is well written and will help in meeting with my MPN doctor. I’ll be interested in her thoughts on this. I can’t thank you enough for sending the summary and reference! I’d be interested in hearing your thoughts & experience and that of others on this forum. What a complex disease we have. I am grateful for your response.
Hi C_Anne_Orange,,
The study/article in Monarch's post was the second thing I thought of on reading your post, the 1st being that trying an OTC that has really limited adverse effects, wide usage [in exercise circles] , and is relatively inexpensive would be worth trying before taking something more expensive, with known adverse effects, and that has been taken [and tolerated] by significantly less people.
No slam on Monarch's post- I was considering asking for this low-dose combination therapy myself, until I found that B-A helped me enough to tolerate life again.
Which is no small thing, given that while I understand that thrombosis is the thing that would most likely kill us, the part of my PV that has been the most bothersome for the past decade+ has been the aquagenic pruritus [which for me at least had stopped being just aquagenic and was becoming more and more generalized- and troublesome].
Best,
PA
Good post
I can’t speak on the combo, but I can help with the itching. One thing OTC you should try is dermaleve. This works great for all kinds of itching. Maybe worth a try. Of course prescription topicals like Eucrisa or topical steroids may help. But keep us posted on the combo. It has already been interesting to see how treatment has changed in the last few years!
Thank you for your reply. I have added your suggestions on the itching to my list of things to try and to discuss with my hematologist. I know this has been a chronic issue for many of us but the last few months are the first time it has become so disruptive for me so I'm so happy to get multiple recommendations on potential solutions. Appreciate your response! THANKS!
Hi KLCTJC,
You just [unintentionally I'm sure], sent me down an interesting internet rabbit hole in search of active ingredient information about Dermaleve's "proprietary topical formulation" including a strontium compound they call: "SRX-38".
It led me here: connect.mayoclinic.org/disc... Where in addition to a few testimonials that sound kind of spammy, they had some discussion of a weird amino acid treatment for skin itching- surprise, it's called Beta-alanine. 
I'm going to continue the deep dive until I learn more...
Best,
PA
when this stuff works, it works! Will work within 5mins. And they just came out with a scalp solution which is awesome. One of the dermatologists that endorses this, is know as the “itch” guy. In fact, I think that is all he sees is complicated itch. I love listening to his lectures. He uses a lot of old meds, off label for itch. But I have experience with Dermaleve and it is great and safe to give it a try.
Hi KLCTJC,
I was in no way questioning that it worked, or your endorsement of it. As you may note below, I even recommended it while endorsing your expertise in skin matters.
It's just that I was born with an inquiring mind, and as the advert went... "Inquiring minds want to know..."
Thanks,
PA
I havnt been on the Bes/Rux combo but I have been high dose Rux for PV for 6 years , it has been excellent so far , no sides, it eliminated my horrendous itch , I did get shingles but just had Shingrix vaccine, tendancy to increase weight for some but controllable. Ideally less drugs the better BUT our MPN’s are serious and dangerous conditions and hence unfortunately they do need potent treatments to control or improve them. If you can sort the itch with Beta alanine or say UVB phototherapy that’s great but I wouldn’t be too concerned about trying some Rux, I know several who sorted the Peg itching by adding Rux. You should in theory need less Bes. Physassist has posted the Jakavi side effects list and noted low counts and infection. You can have low counts on Jakavi only IF the dose is too high particularly with PV, similarly if you take too much Bes or Hydroxy you will also have too low counts, I asked Dr V about (along with another 90 questions) before starting Rux , he said it’s simple just reduce the dose. Some can have increased infections but sadly it’s more likely but not always with MF. I have to say my health overall is very good on Rux.
Re skin cancers, I asked my expert Haem at Mount Sinai about that , he said Rux doesn’t cause skin cancers, I have heard similar from some other expert haems, they reckon previous heavy hydroxy use or sun damage is the cause. Personally I think possibly and this is just my personal view Rux may for some may speed up skin cancers that were already there but not yet showing. In my case I had 10 years of low dose UVB for itch , my mother died from melanoma spreading, I have fair skin, yet 6 years on high dose Rux my skin is perfect at each 6 month check. I have not been on Hydroxy and I use factor 50 in sun and wear sun protective clothes,hat, and keep under umbrella on holiday.
I was surprised to read in the Jakavi leaflet about clots, I have spoken to all th Rux experts and read everything and attend all the conferences, what I learned is Jakavi/Rux REDUCES thrombotic risk. I note that when I read the side effects list for baby aspirin it is equally scary. Most haems will confirm Rux is one of the easiest and safest drugs to take for MPN with the least side effects.
I asked my expert Haem if there would be any benefit for me adding Bes to my Rux, he said no because although the work differently , effectively they give the same result.
I hope that helps
Very helpful post! It's good to hear of someone's long term and successful use of Ruxolitinib - you're right about those scary list of side effects of EVERYTHING, it's hard to sort out and balance the risks with the potential benefits. As for the skin cancer, I am also fair and at risk and have had 2 squamous cell cancers removed in the last 2 years. I was on Hydroxy for a year and it was part of the reason I was moved to Besremi. Luckily I had the shingles vaccine before I was ever diagnosed with PV so hopefully that is extra protection. I would love to be able to be on a lower dose of Besremi but after a year it only recently seemed to start working to get in normal range for HCT and Platelets. Thank you so much for sharing your personal experience and expertise. It helps to balance my fear of trying yet another drug. We shall see! THANKS!
I’m in England. I’ve read lots about the combo and how good it is. Sadly not approved in England- only available on trials which I can’t get on to due to low kidney function. I’ve been on Peg and now on Jakavi due to post pv Myelofibrosis. Read around the topic there is lots of literature. Wishing you all the best whatever you choose.
Thank you or your response. I did not know there was so much literature on the combo. So sorry to hear it's not an option for you., hoping access in England will change in the near future! Wishing you the best of luck and hope in resolving the kidney function and successful treatment for your post PV MF. Thank you.
Go to YouTube.com and type in RUXOPEG and hit the Search button. Will bring up several videos about studies that combined Jakafi with Pegasys. The combo has been studied for 10 years, although mainly for myelofibrosis. The combo induces "Minimal Residual Disease" in some PV cases at which point the patient no longer needs the Jakafi and only needs a small, infrequent dose of interferon.
Hello there,
I have been on Rux for 5 years now after trying Hydroxyurea which I could not handle.
Rux stopped my itching within a few days! It was great because the itching was horrible.
Your Dr. will find the right dose for you that works to keep your blood levels at bay.
I really don’t understand why you would need Besremi and rux instead of just taking the rux.
Also, rux is not known to cause your hair to thin or fall out but I’ve heard Besremi does,,,if that is a concern also.
Good luck!
Thank you for your response. It is encouraging to hear success stories from long time Rux users! The thought of conquering this itching is enticing. I agree about the question of needing both ‘big guns’. I am very interested in what my doctor will recommend. Thank you for your experience and your good wishes. Sending you best wishes and continued success in your journey!
Rux and Besremi both help prevent blood clots, but the main cause of death in PV patients after about 12 years is disease progression rather than blood clots. Jakafi, by itself, is not known to greatly slow or prevent progression for 10+ years after diagnosis.
Interesting. Where did you get this information and can you cite your source?
Thx!
Hi,
Hello to this wonderful community. Itching is a side effect associated with Besremi. You are on a higher dose than I (75mcg). I have had itching for at least 3 years and it has affected my quality of life. I have a fear of showers (aqua-phobic) and even taking sponge baths come with it's own misery. Short lived, yet very bothersome. I am considering trying Beta-alanine since antihistamines only make me sleepy and do little else. I am on blood thinners, so just wondering if there could be any contraindications. I would appreciate to hear from anyone who has PV and is also on blood thinners. The good news is that even though I am on a low dose of Besremi my WBC numbers(10.2) Hematocrit(42.3) and hemoglobin(11) are now finally in normal range. My platelets(650) are high still but trending down from the 800's. I only want to be "free" of this itching! Is that too much ask?? Thanks!
Hello,
Before I got on Ruxolitinib(Jakafi) my itching was horrible. I feared showers as well. The Rux stopped the itching period!
But, before using Rux, the only thing that would stop my itching was getting some sun or the sunbed. It didn’t take much but it did stop my itching.
Good luck.
Hello and Welcome Pogm,
Did you have itching prior to starting Besremi?
It is a really common- especially the aquagenic [water-caused]- symptom of MPN's and specifically of polycythemia. Despite that no one- I mean NO ONE could explain my intense post-shower itching.
Despite there being no associated rash, it was attributed variously to hard water, soap allergies, and most frequently- to my atopic eczema- which is fortunately limited to my hands and unrelated to the generalized aquagenic pruritus.
Even my [otherwise very clinically astute] dermatology MD was clueless.- I was beginning to think I was [even more] mentally disturbed than SWMBO [a retired psych RN] thought I was... 
My itching predates my PV diagnosis by at least 10 years- coinciding with my rising Hct and Hgb levels.
While Besremi hasn't relieved my itch [yet] it certainly hasn't worsened it either.
Best,
PA
Husband has been on Rux for 6 years a pure blessing as his itching was so bad he couldn't have water anywhere near him and in the end he was allowed Rux. He was on 30 mg a day and everything was fine after every 3 months check up. 12 months ago he had 3 squamous cancers removed on his head and they where intense and for the following 6 months he had another 3 removed off head and one on shoulder. After all of this he was advised to stop taking Rux because they do believe it enhances and causes skin cancer. He has just tried low dose of PEG weekly and stayed on 5 mg of Rux. But after 10 weeks the PEG has caused him so many problems so he has stopped the PEG. So now he's just on low dose of Rux until they can find a different drug. What I should say is definitely give Rux a try wonderful drug for the itching
to waddles22
I see your recent post he was on 45 of PEG and muscle aches were extreme. Did he try less than 45 in the combo? Is a low dose Besremi with Rux an option? Some members have had better outcomes with one or the other of Bes vs PEG. (most auto immune reactions excepted)
Is HU an option? It also has been used in combinations.
Thanks for your reply but as yet he hasn't had a reply from his haems!! He didn't try a lower dose as they thought after 10 weeks enough was enough. I don't think we have Bes in the UK as yet. With regard to HU !! this wasn't discussed. His biggest problem is the itching as his bloods and counts are fairly good and acceptable so really at the moment it is stalemate. Many thanks for your reply.
HU is probably not so good anyway as it also is associated with skin cancers.
Hi Waddles22,
Maybe Beta-Alanine is worth trying for him- it really helps me, and it is just an amino acid supplement after all.
Or, if you're concerned about taking something systemically, try the Dermaleve that KLCTJC recommended- the rumor is that she really knows her stuff- especially in the skin care/treatment game.
Best,
PA
Thank you for your reply. I’m happy to hear that Rux was so successful but sorry to hear that it may have led to squamous cell skin cancers. I have already had 2 but over a year apart. Best of luck on getting a treatment combination that works.
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