Evening all 👋 : Hi everyone! Bit of an up and... - MPN Voice

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Evening all 👋

Mackydee123 profile image
25 Replies

Hi everyone!

Bit of an up and down week for me, my part time job quite literally went up in flames last week, when Primark Belfast caught fire and the beloved Bank Buildings got destroyed. I stood and watched her burn and I gotta tell ya, I was an emotional wreck! What a beautiful building with an amazing and defiant history. I really loved working in it. Jobs are safe for now but we need a new home in time for Christmas 🎄

However, I got good news today! Platelets have dropped again to 375!! Yay! I’m finally in the “normal” range! 😀

Doc has told me to stick with the Peg for another 4 weeks to see if I level out. Energy levels are not too bad either although I’m putting that all down to the Vit B I take as when I don’t take it I really feel the fatigue kicking back in.

Oh and grapefruit is bad 😂

Hope everyone is well!

Kerry :-)

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Mackydee123 profile image
Mackydee123
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25 Replies
Inca profile image
Inca

Awful to see,My neighbouring farm,the ancient house there burned down ,we could only watch in horror,so fast,Iheld on to my neighbour,we were horror struck,so I can imagine how you felt,it's a sight you do not forget.Well done your platelets and being much better,Best to you,Sally

mhos61 profile image
mhos61

A real mixed bag for you Kerry!

I saw that beautiful building on the news; It was quite upsetting to see, so I can imagine how you must feel. Again, in Liverpool last night another beautiful Art Deco building destroyed by fire.

Great news on the platelets however. Long may it continue.

Mary xx

GolferCL profile image
GolferCL

Great news on your platelet count! I’m nearly there (465 today) after 8-9 weeks of interferon. Hopefully I’ll be able to move onto Peg once I’ve levelled out...i’m on “standard” interferon and at this rate (appointments spreading out) I’m going to need a bigger fridge 😂 haven’t tried Vit B...did the Haematologist suggest it, or your own research? I’ve not suffered with too much fatigue but every little helps!

Elab profile image
Elab in reply toGolferCL

What is the difference between interferon and peg? I thought it's the same.

I also take B12 to give me a boost of energy....well I wouldn't say it is a boost of energy for me but every little helps

GolferCL profile image
GolferCL in reply toElab

Hi. Peg is a longer acting version of interferon, so you take it less often. I currently take “standard” interferon 4 times per week. With Peg, I think it would only be once. No big deal, other than storage in the fridge and disposal of 48 cardboard cartons for 12 weeks worth of meds...

Elab profile image
Elab in reply toGolferCL

O I see thank you for letting me know. I am on peg once a week 45mg atm.

Hope u are moving to peg soon

Mackydee123 profile image
Mackydee123 in reply toGolferCL

Someone on here suggested it. Also magnesium but my Doc told me to hold off on it whilst starting the meds. 2000u Vit B under the tongue (I got it in Holland and Barrett’s) twice a day and I’ve got enough steam to keep me alert in work and make it past 8pm without falling asleep on the sofa!

It has not messed with my counts either so I would highly recommend it!

Kerry

Aime profile image
Aime

Great news about your platelets but not about your workplace.xx. Kindest regards Aime xx😺😺

Superwoman profile image
Superwoman

So so sorry to hear about you job, it was a very sad day, such beautiful buildings. But good to hear that your platelets are all good and in the normal range, let’s hope they find another store soon and in time for Christmas. 🎅🎄

Jean

Timjonze profile image
Timjonze

Really pleased to hear about the platelets Kerry - that’s a great result from the Peg and long may it continue

Elab profile image
Elab

Good news bout your platelets level......I am too in a normal range , slightly higher than you 411.

Had problem with dizziness and light headed feeling 4 weeks ago but since my dose was reduced from 90 mg to 45 a week I feel much better.

I also take heart tablet to stop my palpitations....to be honest Iam not having palpitations anymore but keep taking the tablet ( as doc instructed). Will ask when can i stop next time i see my doc.

Apparently my dizziness and heart palpitations could be side effects of higher dose of interferon.

Touch wood ...I feel better in myself but now Iam dealing with sleepless nights....

Does anyone expieriencing something similar.

I used to sleep so well at night....now I am Ian not....mayby that's another side effect of interferon.

Any tips for good night sleep?

Ela

Elab profile image
Elab in reply toElab

And I am sorry bout your place of work. V sad.

Mackydee123 profile image
Mackydee123 in reply toElab

I had restless sleep on my meds night so I started taking herbal Nytol after my injection and it works a charm!

Now it’s part I my routine, nice dinner, early night, jab, nytol, episode of something on tv and I fall asleep before it’s over for a dreamless full nights sleep 💤

Kerry

Elab profile image
Elab in reply toMackydee123

O great thank u for the tip. Will go to chemist and buy some.

Had another night without sleep.🙄

Take care

Elab profile image
Elab in reply toMackydee123

Do u take it only once a week just after injection?

Mackydee123 profile image
Mackydee123

Thanks guys!

Such a shame about the job but currently still being paid and just waiting to hear about a new premises. Was also so shocked to hear about the Littlewoods Building and the Art museum!! Crazy fires at the minute on such beautiful old buildings, it such a fast destruction! I know that Belfast City Council, the Heritage Committee and the Architectural Chambers are working together to save the Sandstone Clock Facade so hopefully they can restore at least that part.

Kerry :-)

Tico profile image
Tico

Hi kerrx, like a lot of people i saw the Belfast primark go up in flames,very sad when a beautiful building which had stood so long gone in a flash. Could you further enlighten me regarding grapefruit & platelets? I know you should avoid grapefruit when taking statins. Atb tina.🤗

Mackydee123 profile image
Mackydee123

Hey Tina!

It’s something to do with the Peginterferon, it interacts with the medication...something I forgot last weekend out at a leaving do. Too many G&T’s with grapefruit and I had ants in my pants for days!!

Lesson learned...I was covered in bruises from the scratching 😖

Kerry

Tico profile image
Tico in reply toMackydee123

Ha ha, your reply had me gagging! Great news about your platelets, i hope to follow you & elab in the "exclusive normal range club" tomorrow. Got a visit with Dr blood (haemo) don't think i've ever hit normal range. Hope a new building is soon found regarding work! Atb, tina🤗

Wyebird profile image
Wyebird

Mixed feelings Kerry. Having something to do is so important for us. Getting up and sticking to a routine keeps me going. The loss off your beautiful building and the uncertainty of not having your job is a huge blow. It takes the icing off your cake knowing your platelets are down. I do hope they stay down for you. After almost three years of unstable platelets I will find out on the 11 September if the anagrelide I’ve been taken for 2 months continue to stablize them.

Mackydee123 profile image
Mackydee123 in reply toWyebird

Oh I hope your platelets stabilise! I do feel so much better that mine are low now. Yes, the loss of the store is a huge shock. I still have my full time job but I had put Primark in place to provide part time income for when I return to Uni full time next year. A way to pay the rent while I gain my Law practicing certificate before returning to work at my firm, so that’s a lot of stress when I should be concentrating on the admissions process. The last thing I need at the minute is worrying if I can actually afford to finish my training for a career that I’ve sacrificed so much to achieve!

Anyway, the most important thing is that no one was hurt and that hopefully we get a new premises before Christmas. I have great support from my boss so hopefully things will fall into place.

Kerry :-)

Tico profile image
Tico in reply toWyebird

Hi wyebird, just want to say good luck to you on the 11th sept with Dr blood, mine is tomorrow.long may yours keep stabilizing wyebird.x tina🤗

Wyebird profile image
Wyebird in reply toTico

Keep me posted good luck

redumbrella profile image
redumbrella

Had a similar experience many years ago when the Railway Workshop I was attached to was burned down, it was by no means Art Deco but an emotional experience just the same But like the Phoenix it rose from the ashes and is still there even though I retired 9 years ago. Great news on the platlets though.

All the Best

Garry

Johnsb profile image
Johnsb

Great news Happy for you!

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