Besremi Rash

[hunter5582]

This is the second time that this sort of rash has appeared as a side effect from Besremi. It started on April 24, primarily on the left arm. In a more minor way on the left leg as well. It was rather itchy, but not too bad. I continued to take Claritin and treated the rash with Eucrisa, which helped. It gradually resoled over a few days, just like the last time this happened.

It was annoying but not a big deal. The benefits of Besremi far outweigh minor adverse effects like this. My quality of life is so much better that I will take managing an AE like this as well worth it.

Wishing all of you all equal success in managing the MPNs.

[Ovidess]

How close was rash appearance to the day of injection, Hunter? I have not had anything like that on Besremi, but good to be aware of possibility. Glad you have calming tricks up your sleeve so to speak.

[hunter5582 in reply to Ovidess]

The rash appeared 12 days after the Besremi injection, 2 days before the next injection. The next injection did not make the rash worse. The other itching I encountered has likewise not been related to the date of the injections. Fortunately, I do have a few strategies to deal with the itch and rash that work.

[bordeauxgirl]

Hello Hunter, well you have the same sort of rash I have had since starting off with PV ,that is now 9 years ago, after years of my GP trying me on every sort of cream / ointment, Biopsy's and UVA treatment's, he just threw up his arms and just said 'well I don't know what it is'. So I resorted to trying a cream made up of Cannabis extract , Hemp extract, Bee's wax and Paraffin wax , allowed by law here now and it cleared the rash, which circled both my whole lower legs in 2 weeks. I am on Hydroxy and as I had the rash before starting it, I know it wasn't caused by the drugs, it seems to be part and parcel of our blood conditions. Good Health to you for the future.

[hunter5582 in reply to bordeauxgirl]

Glad to hear you found something that works for you. I never had the pruritis that is commonly associated with PV, though I do get episodic eczema. These rashes and itching only started after is went on Pegasys and continued on Besremi. I am fortunate to have found something that works to control the issue.

[Hidden in reply to bordeauxgirl]

ahh, that Gallic shrug. 😊 My husband has a bad form of eczema and/or psoriasis, and hopefully an upcoming derma appointment but if that doesn’t give solutions, is what you describe an all-in-one cream and where do you get it? TIA for letting me know

[hunter5582 in reply to Hidden]

I also do have eczema. The dermatologist had some good suggestions. Eliminate triggers like laundry products and soaps/shampoos with scents or dyes. Maintain a healthy skin moisture barrier. I use Cere Ve cream on areas where I have had repeat outbreaks. When I do have an outbreak, Eucrisa ointment works very well. It usually eliminates the outbreak in a few days. Hope you husband finds something that works for him. .

[Hidden in reply to hunter5582]

Thank you Hunter! We did the soaps and detergents already. I will look out for the other products. Keeping fingers crossed! Thanks again. All the best always to you.

[PhysAssist in reply to Hidden]

I have had eczema primarily on my hands for around 30 years- and besides steroids, a cream of doxepin [which is an antidepressant] which originally sold under the brand name of Zonalon has been a godsend.

I can't us a ton of it or it makes me sleepy, but even a little really knocks the itch away for a long time. I don't know that you could use it on a large area without pretty much guaranteeing at least some of that [its primary side-effect].

Reference: dailymed.nlm.nih.gov/dailym...

Best,

PA

[Hidden in reply to PhysAssist]

Thank you PA. I will put forward these tips to hubby and he’ll have to take it up with either his GP or dermatologist. I’m glad for you to read you’re able to manage your itch.

[bordeauxgirl in reply to Hidden]

Hi Anouchka, Here is the address in the UK you were interested in, CBD BROTHERS, 1010 FARM, IP 309QR. It is called CBD BALM. I have to warn you it is a bit expensive, but so worth it.. Also it is very slippery so goes a long long way.

[Hidden in reply to bordeauxgirl]

Thank You! All the best to you.

[Jennytheb in reply to bordeauxgirl]

Hi that cream sounds great, I have had a permanent rash on lower legs which instigated my visit to GP to find I had JaK2ET (8 years ago) this has now also gone onto feet but nothing gets rid of it. It isn't itchy but looks rather redder than yours and more all over. with summer coming up I will be unhappy to display my legs as often hear remarks about it. I would love to try your mix, can you get it over the counter or do you make it up, I am in UK, assume you're in France? Thanks.

[Hidden in reply to Jennytheb]

I too am interested in that cream 😊

[bordeauxgirl in reply to Jennytheb]

If you see my answer to Anouchka all the details are on her reply , I can recommend the cream , no nasty ingredients so is safe. I have used it successfully for two years when my rash appears. Which it does every so often. Best wishes from Guernsey.

[Jennytheb in reply to bordeauxgirl]

Thank you for responding, I will see about getting some of the cream. Very best wishes, Jenny.

[Hopetohelp]

Thanks for sharing and great positivity. Do you take Claritin every day, rash or no rash? Or just when rash or itching starts?

[hunter5582 in reply to Hopetohelp]

The itching was so persistent after I started the Besremi that I started taking Claritin daily. It does a good job controlling the itching. The rashes are episodic and I treat them topically. What I experience does not appear to be the pruritis associated with PV since I never had that issue prior to starting on the IFNs. The itching and rashes are not associated with showering or changes in temperature.

[Hopetohelp in reply to hunter5582]

Thank you

[bordeauxgirl in reply to Hopetohelp]

I take anti-histamine tablets twice a day , have done since 2014 when my PV started, don't think they make much difference, but my Hemo/doc wants me to carry on with them so no I find no problem there.

[Hidden]

thanks for sharing. Certainly good to be aware of these side effects- best wishes your helpmates do the trick and at least give relief..

[gjh8733]

this looks somewhat like the rash that I developed last October when I started on Besremi. I did not have any wheels which I think I see in you photo Hunter. Location for me was also predominantly on my torso I.e. not on arms or legs. It is still present. Luckily it is not pruritic

Photo of rash

[hunter5582 in reply to gjh8733]

That is how the rash on my legs looked, though that time there was no itching. This time there was moderate itching, but it responded to the Eucrisa. I have had a different rash appear on the abdomen. Just red skin in that case. In all, not a big deal in the great scheme of things.

All the best.

[KLCTJC]

I have had a few unexplained “bumps” since starting Besremi. Mostly on my left side. Figured it maybe from the medicine or weird bug bites! But doesn’t bother me too much. Just put topical steroid on it. But mine hurt more than itch. Figured like you more annoying than something to complain about and in my case who knows maybe it is a weird bug bite! But last 2 injections I did them on my right! And I get mine in my arm because my husband gives it to me or nurse at work. Do you have any topical steroids? Even cortisone 10 could potentially help. You are doing all the other things I would recommend.

[hunter5582 in reply to KLCTJC]

I have some topical steroids available but the Eucrisa works better, so that is my go-to.

I like doing the injections in the abdomen. Plenty of flab there to pinch-an-inch.

[Plate]

I am glad it wasn’t severe and you were able nip it in the bud early!

[PhysAssist]

Hi Hunter5582,

I totally agree with all of your statements.

However, in our [family] practice, we have found that Claritin hasn't been too awfully useful or effective when prescribed or recommended for itching and/or rashes, but instead our default/go-to has become Zyrtec [cetirizine], which is more effective and safe [depending upon normal kidney and liver function] at up to 4x's the recommended daily dosing.

I first heard this at a conference on Asthma and Allergy in Boston, Ma, and later found out that my B-I-L had started taking 40 mg daily for his intolerable reaction to poison ivy [despite my recommendation at max 20 mg/day].

However, what's best iswhatever works for you, of course,

Best,

PA

[hunter5582 in reply to PhysAssist]

Thanks for the information. So far, Claritin has worked to control the broad itching that is the more frequent issue. The occasional rashes typically fade after a few days with just the Claritin. If the itching picks up at bedtime as the Claritin is wearing off, I will take a Benadryl.

I will keep the Zyrtec in mind should I find the Claritin loses efficacy. I would also consider Beta Alanine, which some have reported success with.

All the best.

[PhysAssist in reply to hunter5582]

Hi Hunter,

You are entirely welcome!

It's interesting that you mentioned beta alanine as a treatment for itch and/or rash, because I'm more familiar with it being the cause of itching- like paresthesias.

What causes beta-alanine itch and how to treat it...

Source: medicalnewstoday.com/articl...

Mechanisms of Itch Evoked by β-Alanine

Source: ncbi.nlm.nih.gov/pmc/articl...

Unfortunately, I was not able to find any references that supporting taking it to treat itching.

Best,

PA

[hunter5582 in reply to PhysAssist]

I heard about β-Alanine being used to manage MPN itch here on the forum. Several people have reported success with it for MPN itch., EleanorPV and SweetLucy both report success with it in this old post, I have heard the same from others as well. healthunlocked.com/mpnvoice...

There is also this twitter post that popped up on a search. twitter.com/NickNap22/statu...

None of this is research, but has some heuristic value. I have not looked into β-Alanine in any detail as I have not had e need to pursue other options. It seems that te\he oral form seems to help some people, but for others cause itching. Most interesting.

[Dane12 in reply to hunter5582]

Hi all,I have tried many antihistamines alone or in combination for my itching, without too much success. The only thing that worked is to have 1g beta-alanine 30 min before the bath (shower), which prevents the itching crisis to arrise. Bare in mind, if one takes more than 1.5 g of beta-alanine, it can get the opposite effect , meaning itching. It worth mentioning that the itching caused by a biger beta-alanine dose has a different manifestation comparing with the MPN one (more beareable).

Also, when taking beta-alanine, you might get a stange sensation on your face ( not annoying) - at least in my case.

[hunter5582 in reply to Dane12]

Very interesting how Beta Alanine can either prevent or cause itching. Glad you found something that works.

[PhysAssist in reply to hunter5582]

Hi Hunter,

Thanks for the links- and yah, it's interesting.

It is good that you haven't needed it!

PA

[PhysAssist]

Hi Blondie,,

Have you tried Zyrtec for your allergic rash and itch?

As I said to Hunter- it's our go-to.

Best,

PA