Thankyou

[Spanelmad]

Just a quick post to say Thank you for all the info on Peg and Angrelide.Just taken my first 45mg of Peg, which is taken fortnightly.

Feeling ok,sore leg( similar to Mtx )the big deal is no itching!!!!

Increasing water in take in case of headaches.

So hoping this is the right choice.

[PhysAssist]

Good morning Spanelmad,

[at least it is morning when I'm reading your post.]

I'm glad to hear that you felt you had enough information to make an informed choice!

I hope it is the right medication for your body.

As far as the right vs. wrong choice: in my world view- as long as it's not really a no-brainer bad decision [e.g., to drink and drive, to smoke or vape [anything], etc.]-

There are no wrong or right choices, just decisions and outcomes- and as I said, iI hope your outcome is optimal.

Best,

PA

[Spanelmad in reply to PhysAssist]

Afternoon here and thanks to you I had enough information to make a choice.Currently being looked after by a cocker spaniel( who thinks he's a medical professional) .Not allowed to move without his way so ! I'm wondering if my smell has changed?

[PhysAssist in reply to Spanelmad]

Good afternoon then, and thanks for the reply!

It's interesting that you mention increased doggy interest- a number of people [and I] have noticed that all dogs I meet seem to want to [try to] lick my skin excessively.

This has been evident over the past 10 years or so- and I meant to mention it here a few times past, to see if others had any similar history.

It has seemed to be not quite as bad recently, i.e., since I've been on the higher Besremi doses, but it's still kind of there.

When I was diagnosed in 5/22, SWMBO wondered if the PV could be the trigger for the interest in licking me, either from the metabolic changes it causes, or the increased sweating I seem to experience, because I'm always hot, even when others are feeling cold.

E.g., 3 of my colleagues have heaters under their desks, while I have a portable fan on my desktop.

The only parts of me that ever get cold are my hands and feet- and they can be cold even when I'm sweating otherwise...

Best,

PA

[Scaredy_cat in reply to PhysAssist]

Dogs can detect cancer see understandinganimalresearch...

[Spanelmad in reply to Scaredy_cat]

I'm aware, but Percy has only been interested since having the first injection

[PhysAssist in reply to Scaredy_cat]

Hi Scaredy_cat and Spanelmad,

I did read and see a video about at least 1 dog, who was trained to alert to some samples from patient with melanoma, but hat article goes way further.

I'm still curious what my family's and friend's dogs smell/taste on my skin that attracts them.

It hasn't changed with/since my starting treatment with Besremi, though, that much is clear.

Best,

PA

[Spanelmad]

Hi PA, Yes I agree hands and feet are always cold I had put it down to the RA but I'm not so sure now.Hands also seem to be quite sore a!most 'chillblain isn'psychic pink and very white.As to Percy (4 legs and a tail) he's not licking just lying on me head /👃 on injection site.He didn't seem to be as bothered with me taking the Hu.

[Carol0925]

Hi, picking up my Interferon today after FU yesterday in Oxford. A little apprehensive, but hopefully I won’t experience too many side effects. I wish you well with your therapy.

[PhysAssist in reply to Carol0925]

Good luck, and God bless,

PA

[Spanelmad]

Is it the needle thing making you apprehensive?It's really not that bad ,fiddly to get the dose right but otherwise quick.I have increased water/fluid intake to try and stave off the reported headaches(so far so good).

A bit of very mild itching last night so antihistamine at the ready and it was sorted.Erred on the side of caution this morning and have taken another.

If you've changed from HU, I had severe side effects 20 mins after taking the first pill with this morning for 8 hours and then really mild.

Hope everything goes well for you when you start taking .keep in touch.

[MAP44]

Good luck Spanelmad,

I had the itching long before being diagnosed and long before starting Peg. (PV Jak2+) I started out itchy after a warm shower and later on it change to just breathing made me itchy!!! Crazy times that are no more 🙂.

I purchase Beta Alanine from my local supplement store or available on line too. Small scoop included in the package.

I put a scoop in the water bottle in the morning and one with supper and my itch was totally eliminated. Learned all about on this chat from other itchy people who live perfectly normal lives now.

I am grateful for them sharing their successes and I love them all❤️❤️❤️❤️❤️.

[PhysAssist in reply to MAP44]

Hi MAP44,

I know what you mean- I love the stuff.

I just bought another [1 kilo] batch of Beta Alanine from Amazon, as I have just about finished the tub [500 grams] of it I bought this summer.

I take about 1.5 grams twice daily in my caffeine-of-choice [Diet Mtn Dew] .

There have been at least a few days where something kept me from taking it, and the difference in my comfort levels/itch were so obvious that SWMBO noticed and commented on it.

YMMV- Best,

PA

[Spanelmad]

Well didn't know that, will order some.Many thanks

[MAP44 in reply to Spanelmad]

When you take the beta alanine in your drink ( it is flavorless and dissolves quickly) it can give you a little tingle in the arms and feet.

I rather enjoy that tingle because I know is there to help. Good luck to you!! It was life changing for me. 🥰🍻

[Spanelmad in reply to MAP44]

Thanks for the heads up

[MAP44 in reply to Spanelmad]

Antihistamines never helped my itch.

Inflammation is a huge factor in this disease.

[PhysAssist in reply to MAP44]

Interestingly, I do not experience that at all- what I get instead is a hot and flushed sensation localized in my face. I also have what feels like like a much milder, non-itchy version of my aquagenic pruritus symptoms [pins and needles] but just in my face- and SWMBO says that there are days when she notices an increase in my facial redness after I drink it.

I do not find it uncomfortable, and as MAP44 stated, I find it somewhat reassuring because I know the miserable itch will be attenuated, if not gone ocmpletely minutes later.

Best,

PA

[Spanelmad in reply to PhysAssist]

Hi PA , like you itching( pins and needles) always around hairline and eyebrows.So I've got beta alaine on order

[PhysAssist in reply to Spanelmad]

I figured it was worth a try, and ended up pleased.

Hope it works for you as well.

Best,

PA

[Carol0925]

Hi and thanks for your reply. No not the needle, it’s just some of the side effects. This is my first treatment. Pleased you’ve mentioned antihistamine so will add them to my list along with paracetamol. I plan to start tomorrow and I also have a month of Allopurinol too. Will keep in touch.

[Spanelmad in reply to Carol0925]

Yes I was prescribed fenofexodenine 180 mg but you can get it from the chemist but at a lower dose 120 mg.It was originally given for the side effects with Hu.Good luck 😄

[PhysAssist in reply to Spanelmad]

Very interesting, it's Allegra [fexofenadine] which I take daily for my perennial allergies, but which has never really helped me with itching.

The usual once-daily OTC dose here is 180 mg.

There is a 120 mg dose, which is combined with 12-hour Sudafed, but it is exorbitantly expensive, so I buy them separately, using store brand 12-hour Sudafed and name brand Allegra. I tried the store brands, but they all wore off about 6-8 hours after taking them, at least that what my sneezing, runny congested nose and watery itchy eyes said happened.'

😇🙄

PA