Peg update suprize

[Spanelmad]

Hi to you all,Well you could have knocked me down with a feather platelets at 295!!!

Been on Peg since Nov at 45 mg fortnightly so even the Heam was surprised.

Thanks to epguy we had a long auto immune conversation ,so more bloods to do and retina scan!

One liver enzyme isn't happy ,so if no improvement in 2 week's it's an ultrasound.( It's the bile one? Normally you would think gall stones but no gallbladder)

Have agreed to stay at 45mg and move to 3 week jabs.

Overall the best appointment I've had and I think asking for the second opinion has done this the Heam really listened today.

[PhysAssist]

Hi and Congrats!

All kinds of minor LFT elevations can happen at any time, and may not be treatment-related- if it's one of the bili's, then you might still have a stone in a bile duct, even w/o a gall bladder.

My own ALT and AST levels sure seem to fluctuate at least somewhat randomly, but I'm also too lazy to keep a food diary, so I can't really relate it to fatty meals, or other intake-related sources.

We had patients in the past who needed and got [temporary] biliary duct stents inserted after even distant gallbladder removals [look up ERCP- endoscopic retrograde chol-angio-pancreato-graphy]- because the process that causes them isn't dependent upon having a gall bladder- it's the bile stasis. and metabolic variations.

"hopkinsmedicine.org/health/...

Best of luck with the rest of this, but I'm very happy for you about your response to treatment so far.

Best,

PA

[Spanelmad in reply to PhysAssist]

Thanks for the detail!!The fall bladder removal was messy and they had to go back in 2 days latest remove 3 from liver duct.So I wouldn't be surprised if There was a stray

[Spanelmad in reply to Spanelmad]

Spelling mistakes alert!! Gall bladder

[PhysAssist in reply to Spanelmad]

Just to make sure- you do know that you can go back and edit your spelling, right?

Just click on the "More" drop down and then edit.

It does sound like it could be a retained stone that shifted to block some bile flow in one of your ducts.

Regardless- congrats again, and best wishes!

PA

[Spanelmad in reply to PhysAssist]

Didn't know that either.Don't know what I'd do without you

[PhysAssist in reply to Spanelmad]

Hi again,

It's funny- the email message I received about your post contained the typo "so" instead of the "do" that you edited it to.

...and the answer is- you'd do fine- as you always have before...

Best,

PA.

[Threestreams in reply to PhysAssist]

Trying to work out how to spell checker .. thanks for info

[MaggieSylvie in reply to Spanelmad]

not spelling - typos. F is next to G; easy finger slip.

[Spanelmad in reply to MaggieSylvie]

Yes with swollen fingers it's very easy

[mhos61]

That’s a great response in such a short period of a time. Glad to hear they’ve also acted upon your autoimmune concerns. You couldn’t ask for anything better.

I’m presuming this was your local hospital? It’s a great feeling when we’ve had a good consultation.

Good luck

[Spanelmad in reply to mhos61]

Very surprised with the results considering what we been discussing with regard to my immune responses but all the regular bloods are within normal range even my white count is at 6 which is unbelievable good, considering the RA.My local locum Heam today totally different or it might have been me .

Knowledge is power

[mhos61 in reply to Spanelmad]

Good news on the wbc. Hope the spaced out dose will prove to be beneficial. It’s early days, and things may settle.

I suspect the locum is aware you’re able to advocate, and is responding accordingly 😂

[hunter5582]

Glad to hear the good news. Pegasys can work even if it may take longer. It does require that you monitor and respond to any side effects that may occur. Elevation in LFTs is fairly common on PEG though your situation may be something else.

I experienced an elevation in AST/ALT=3X/ULN and in AlkPhos due to the Besremi. My Integrative Medicine doctor prescribed a milk thistle extract, which returned the LFTs WNL. My MPN Specialist was interested in this response as she was not familiar with the use of this supplement and elevations in LFTs is something she sees with patients on IFNs. Note - I recommend consulting with a medical professional familiar with complementary health about the use of any supplements we choose to try.

Wishing you continued success.

[Spanelmad]

Yes Ast and ALT were within normal range.

[Carol0925]

Great news 👏🙌 I started Peg 45 weekly nearly 7 weeks ago and my last count showed platelets at 390. My potassium and alt were slightly raised but was told that can happen with Peg. Had blood done yesterday so will see what these are like.

[Spanelmad in reply to Carol0925]

Great news on platelet s, hope the pesky bits are back in control on the next bloods

[Lyndjs]

Great news, so happy for you. My liver levels increased at first, but recent results are good. Finger crossed for you too.

My haematologist has said my platelets 'aren't playing' 😂 I love the term but it's disappointing. I've had 7x45 & 3 x90 doses of peg/ weekly, so early days and holding on to the information shared, low and slow. Platelets are now 806.

Reading your post gives us all hope. Please keep us updated on everything.

If you're in the UK, I hope you enjoyed the sunshine forecasted for today too 🤞

X

[Spanelmad]

Not sure if you remember ,mine weren' t

very high start at 526 .So slow and steady is good! Mine have to now stay there and liver buck it self up

[Lyndjs]

I really hope they do stay low and your liver does, 'buck itself up.'

Enjoy your day xx

[lizzziep]

Good news! Speaking of spelling should your user name actually be Spaniel mad? 😁 just going on your photo, which looks like our much missed Jess. We’ve got a golden cocker now, 4 months old.

[Spanelmad in reply to lizzziep]

Yes probably!! Although I think you've got to be a bit loopy to have a working cocker!Percy aka "The Pest" is definitely a mad spaniel.As you will know with the new pup.All great distracts from all the health stuff.

Enjoy your walks.

[lizzziep in reply to Spanelmad]

Maisie certainly takes my mind off the MF. She’s got me moving more too, our other dog is a springador but she’s nearly 15 now so obviously not as active as she once was.

[Spanelmad in reply to lizzziep]

I hope she's not to naughty!!! Percy at that age was in to everything and ate a sheepskin boot

[lizzziep in reply to Spanelmad]

Definitely into everything! Very curious about what’s going on around her. Mostly good, has her moments, doing well with training. We know what times of day she needs to let off steam , goes mad racing round the garden, then she takes herself to bed for an hour, the lawn will never be the same - wish I had an ounce of her energy. We’re retired so have plenty of time.

[Exeter21]

brilliant progress . I have great results on interferon too 45 monthly now . Well done 👍 Julia

[Spanelmad in reply to Exeter21]

Still early days so we're hoping they'll stay low.Great to hear your now monthly that's where I would like to get to , as other meds that are injected for RA are weekly

[DougyW]

That is great to hear. Hope the good news keeps growing

[Spanelmad in reply to DougyW]

Yes fingers crossed for the next blood test

[AndyT]

Great news - definitely sounds like it’s time to try extending the interval between jabs. I’m on 4-weekly 45mcg.

I’ve had occasional liver function anomalies in blood tests but they’ve always resolved by the next test, so hopefully that’ll be your experience too.

[Spanelmad]

I think that's plan if everything holds after and appointment

[Skyehope]

Great news for you and I hope the liver enzymes settle down 😊

[Spanelmad in reply to Skyehope]

I hope so too