Reacting to piqray.

[Timtam56]

Don’t want to worry anyone, but just wanting to know if anyone has had this reaction to Piqray. I’m into my second week. On Piqray and Fulvestrant. At first I thought it was only my bottom, (left side) near site of injection, that was itchy. Then I started feeling a prickly feeling all over my body. I got my daughter to take a pic for me as I live alone. This is my back, (and then, I realised it’s all over my body.) today.

Getting worried that if this is only week 2, what will happen now. And I must say I underestimated the calm of being on Ibrance and Anastrozole. The ride is getting rougher now.

[awesome4ever]

Timtam this type of rash is one of the most common side effects of Piqray and usually if it is going to appear it develops typically early in treatment. Please contact your oncology team or perhaps trial nurse. They can prescribe corticosteroids ..either topical or systemic. Oral antihistamines can help the itch but also can make you sleepy. I know you live alone so that is a concern. Since this side effect is common they should know how to manage it without you having to stop the drug. Take care.

[Timtam56 in reply to awesome4ever]

His miss Awesome. Thank you so much for replying to me and for your care. I can feel it across the waves. Yes, I’ve told the Trial team. Poor things I keep sending them photos of my left bottom. So yesterday Saturday, I had to send them one of my back and tell them that I knew that they weren’t at work, but they would be forewarned before my very early appointment on Monday/tomorrow. I asked them on Friday because of the itchy bottom if I could take an antihistamine and they said yes so I’ve been doing that.

[Pachira in reply to Timtam56]

I was in Anastrazole (Arimidex) for 5 years. After that there was some turmoil due to progression. A very nice doctor in Seattle told me to start Verzenio and Faslodex and i remember her looking me in the eye and saying “it won’t be quite as easy going forward”. I’ve got everything settled down now and I feel quite well with less fatigue. When I had a wobble after starting Verzenio. It was the dosage. After I reduced from 150 to 100 it worked well. I hope you find a balance soon. Those spots look like a lot of inflammation and itchiness. I feel your pain Chris hugs

[Timtam56 in reply to Pachira]

Thank you. This is not fun is it? We all have each other though.

[mariootsi in reply to Timtam56]

Yes we do. Sending hugs and hope you can get some comfort from this side effect.

[LDR1]

Developing a skin rash on Piqray is common, especially early on - my doc had me take daily antihistamines for the first month to help prevent them. Definitely ** contact your doctor asap to let them know you have this side effect** — they will want to address it promptly.

[Timtam56 in reply to LDR1]

✔️ tick. done that. Thank you so much.

[LDR1 in reply to Timtam56]

Great! And just fyi the antihistamine they had me take daily when I started Piqray was Claritin. I took it for a month then when I ran out, nothing happened so I didn’t take more. But people who do develop rashes on Piqray can be treated with a wide range of antihistamines (from over the counter to more powerful stuff) so I’m sure there’s a solution for what you’re experiencing. Hope it clears up soon!

[Timtam56 in reply to LDR1]

Thank you

[Dragonfly2]

hello Timtam…watching you carefully as I’ll be on this next month. I did want to say that I’ve been on daily loratadine (Claritin) for bone pain…your other replies suggest taking an antihistamine…Claritin is non-sedative which makes it great for daytime use…but yes, your ONC should be able to help! 😘🤞

[13plus in reply to Dragonfly2]

Wait. You take Claritin for bone pain? And it helps? I’ve been having to pop Advil around the clock lately

[Dragonfly2 in reply to 13plus]

I had read about Claritin here on this blog…bone Mets can cause pain because the cancer cells produce histamines…and cause the pain.

(It is thought that some of the bone pain that is caused by Neulasta is due to the effect Neulasta has on histamine, which induces inflammation and swelling in the bone marrow and results in pain. Claritin is an antihistamine that blocks histamine, so decreases the amount of inflammation and swelling in the bone marrow and therefore reduces the pain.). drugs.com/medical-answers/y...

The antihistamine does help to interrupt this effect.

Is it really effective? I wouldn’t be able to say definitively. I started back 3 years ago and have always used it. I still have had to use Tylenol and naproxen (3 times a day) recently from the new Mets that had to be radiated - the Mets had inflamed the SI joint. Now I’m starting to feel better for longer periods of time 🤞. But the Claritin is always there!

[Timtam56 in reply to Dragonfly2]

Oh gosh. Youi sound like me with your painkillers. I am on 20mg targin (slow release Oxycodone) twice a day. Paracetamol (Slow release for osteo arthritis) 2 x 3 times a day. Lyrica/pregabalin 75mg twice a day….. Feel like now with blurred vision and tiredness, I may have to give up driving while I’m sorting myself out.

[Cherry38 in reply to Dragonfly2]

My oncologist put me on claritin for allergic reaction and also for bone pain, he said it helps quite a bit and I find it does🩷

[13plus in reply to Dragonfly2]

That's fascinating! I never knew that. And I've had Neulasta in the past and after one particular shot I had THE worst head pain ever for a few hours, all I could do was clutch my head in agony. It was quite horrifying because I was alone at the time too. ugh. Anyway, you've made me realize my current pain episodes are similar (fortunately not as bad as after the Neulasta) and I've been popping Advil pretty much at the max dose for up to a week per "event". I will definitely try the Claritan for bone pain now! Thank you for sharing the link too

[Timtam56]

Ohhh. I’ve been taking a thing called Telfast. (I have a few sleeves of this left over from my hayfever last year). they said that was okay. But I’ll have a look at the difference on the Internet and see if I’m taking the right thing. I’ll ask them tomorrow about Claritin. Thank you dragonfly2.

Oh…..and I’m very keen to hear about this use of Claritin for bone pain which I have a lot of or is it nerve pain in the bone? Can you tell me more?

[Dragonfly2 in reply to Timtam56]

drugs.com/medical-answers/y...

Here’s the link to learn about Claritin for your bone pain…🙌

[13plus in reply to Timtam56]

I've got to the point where it is quite hard to discern the different pain origins at times. Some times when I have pain, I know for sure it is the bone, for me it's like a deep ache, throb, or simply very sensitive to hard surfaces sitting, etc. The last 6 months I keep getting a recurring problem from my groin down into my inner thigh (on one side). It typically feels like the muscle aching, or the muscle feeling very tight, and yet, if the pain is not controlled during the night lying down, the whole right side of my pelvis is just "pain". I really can't tell what specifically is hurting. So frustrating to not be able to pinpoint the source but I have finally concluded that the "muscle" pain/discomfort is really probably stemming from nerve inflammation. There aren't any nerves within the bones themselves but all structures within the body: bones, tendons, ligaments, muscles, organs, are all enveloped in fascia (and muscle also has fascia lines running right through the individual muscles). Fascia, as one of it's functions, helps transmit nerve signals, so I can imagine (without knowing if this is scientifically fact) that if our bone is having an issue, that that gets relayed via the fascia to the surrounding tissues (and in my case ends up feeling like the muscle aching and over contracting , as has been happening). Not sure if this makes any sense to you or not.

[13plus]

Hi TimTam, I don’t know about Piqray and I agree to call your doctor so you can get on top of it asap. I used to take Claritin after the Fulvestrant shots because otherwise my two bum lumps would itch like crazy! It’s just an over the counter antihistamine here in the US. They must have something the same over there too. Hope it gets resolved quickly. I know how you feel with the ride getting rougher. I’ve had a challenging year!

[Timtam56 in reply to 13plus]

Ohhh thank you.

[Bettybuckets]

Hi Chris, I am so sorry to hear how itchy you are at the moment. Hope they can give you some pre meds to nip that in the bud.

[Timtam56 in reply to Bettybuckets]

Or nip it in the butt!

[Nocillo]

I understand your comment about the calm of certain treatments. Some are quite tolerable and then, boom, you get one that isn’t. Hope it improves for you.

[Timtam56 in reply to Nocillo]

Yup. You got it.

[HelenWi]

Hi Timtam,

As others said, this is a common side effect and should go away after about a week. I took Claritin and I think it helped. My oncologist gave me a cream to use also.

Definitely speak with your oncologist.

Best,

Helen

[Fiercefighter13]

I had a similar rash starting to intensify on day 9 and a fever that accompanied the rash. By day 11 the rash covered every inch of my body including under my nails and in my eyes. My doctor took one look at me on day 11 and pulled me off Piqray. It took 20 days on steroids and antihistamines to clear up. Onto Xeloda from there. Hopefully your rash settles down as each treatment line gives us more time on this journey. Best wishes, and hoping it settles down.

[Timtam56 in reply to Fiercefighter13]

Tomorrow’s appointment will be interesting. How are you going on Xeloda? And how long have been on it if you don’t mind me asking.

[Fiercefighter13 in reply to Timtam56]

Hi Timtam56! Xeloda has done it's job double duty on my cancer. I have had the best response as far as therapies with Xeloda. My markers went from the 600's to none now for months and it worked right off the bat. I started it in January of this year, so going on one year next month. I have to admit, it has been the hardest therapy to tolerate, but the best results of any.

[Timtam56 in reply to Fiercefighter13]

Oh that’s so great to hear. Especially as I itch even my scalp from this bloody rash I’ve got on Piqray.😆🙈🙈🙈

[13plus in reply to Timtam56]

I hope your skin gets resolved quickly! That sounds pretty unpleasant

[JustmeMary]

I started Piqray December 1st and the rash appeared on the 11th along with blurry vision. My onc stopped the Piqray and put me on a steroid for 6 days. I’m supposed to start again next week with possibly lower dose and as others have suggested, I’m going to take an antihistamine along with the Piqray.

[Timtam56 in reply to JustmeMary]

I’ve got terribly blurry vision. And THE driest mouth I have ever had and that I think anyone could ever have. An insatiable thirst also.

[JustmeMary in reply to Timtam56]

The thirst could be from high blood sugar caused by Piqray as well.

[Timtam56 in reply to JustmeMary]

Got my finger pricked today. Sure enough. My glucose is 11.3. They didn fasting bloods, but the nurse didnt make my vials properly. So pathology wouldn’t accept them. Got to fast tomorrow as well and go in again to see if I’m heading towards Diabetes. 🙈🙈🙈🙈🙈🙈🙈🙈

[awesome4ever in reply to Timtam56]

Hi Timtam. Fingers crossed that your fasting blood sugar levels will be ok tomorrow. However if not, hyperglycemia is also common with Piqray so they often start patients on Metformin or similar to control the glucose levels. Please keep us updated.

[Timtam56 in reply to awesome4ever]

Yes. Let’s hope that miss awesome.

[Poet21]

i also got the same rash that covered my back and other parts of my body on the 11th day of Piqray. I took pictures and my Onc took me off it immediately . I was taking an antihistamine prior to the outbreak. Never went on it again.

[bikebabe]

just a thought it might it be worth doing a small patch test with a topical application of witch hazel as well as speaking to oncologist. Its been very effective in suppressing my own itching for different reason but similar principle.. i got my first decent night sleep after one week of intense, scream inducing, itching when I wrapped my entire lower leg in compresses of witch hazel solution and bandaged them loosely in place overnight. I have Gilbert’s syndrome which means intense itching after bruises/rashes. It does say it can make skin drier due to the alcohol hence patch test a small bit first.

[Timtam56 in reply to bikebabe]

Thanks for that. I’ll give it a go.

[bubblystream]

this is normal reaction. It goes away after a week. I had lots of reactions to Piqray but they all settled down after two weeks to a month.

[Timtam56 in reply to bubblystream]

Thanks