ET diagnosis finally sinking in

Watch and wait
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Good evening @Chrispy and everyone else, hope you are as well as can be and have all been enjoying the recent better weather.

Chrispy, I was wondering how you have been getting on with your 3 weekly Besremi Injections? I am due my second one this coming Friday, although I am still on the Hydroxy at 1 capsule a day, 5 days per week. It will be interesting to see what the combined effect of these two drugs will have had on my blood work, although I’m currently not due any blood tests until the first week of June, with my next Consultant appointment on the 6th June.

I have to say that my energy/fatigue levels are still very poor, and feel to be getting worse, and also the tongue ulcers have made an unwelcome return, which is rather annoying. Such is life.

Take care all, stay safe, be kind to yourselves and keep on smiling.

Best wishes,
Jimbo165

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Hi @Jimbo165 I am due to my 2nd besremi on wednesday and hopefully this will go more to plan and the safety guard over the needle will move as it is supposed to. I got a reply from the haematology pharmacist today in response to mine nearly 3 weeks ago and it just gave me another copy of instructions and wishing me well. I think after seeing an online video (in German) i have confidence i was doing every thing right so assume it was just a problem with the needle. Have you been told to use the same pen for 2 injections of 125? The instructions say only use twice for 100 so i hope there is sufficient in it to inject.
I have been feeling tired but that was more in there first week after injecting.

Sorry to hear about the mouth ulcers. That must be very uncomfortable. Can they give you a prescribed mouth wash? I had problems a few years ago during chemo for breast cancer and they gave me a mouth wash to help with the ulcers. I think it is expensive so the nhs are reluctant to prescribe it. Might be worth asking about though.

I will let you know how the 2nd injection goes and please let me know how you do. My next appointment is 23rd April and a blood test will i assume be done then. She usually then phones me the result a few days later.

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Hi @Jimbo165 @Erica @Gillyj and everyone else. Just a short update about my Besremi injection tonight. I did as instructed and as last time but this time it all went as it should so i am relieved that i am confident the full load went in this time.
x

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Oh, that is great news @Chrispy you have done absolutely brilliantly having the confidence to try again.
Really be kind and really look after yourself and celebrate

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Good evening @Chrispy, and everyone else, hope you are all doing well. Very glad to hear that your Besremi injection went well today and I hope that this will auger well for my own second stabbing later this week! :syringe:

Take care all, stay safe and keep hydrated during this sudden outbreak of spring sunshine! :sun:

Best wishes,
Jimbo165

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Well done @Chrispy that is excellent news :clap::clap::clap:

It’s one less thing to be stressed about isn’t it!

I hope you’re coping with the tiredness- did it improve at all?

Take care

Gillyj

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Good morning @Chrispy, and others on this thread, following on from Chrispy’s recent post, here is my own Besremi update. I had my second Besremi dose last night and feel that it went well, although I feel rubbish this morning, as per usual after my last Besremi and all of my previous Pegasys jabs. The Besremi is definitely a “different beast” when it comes to the injection as there is a lot less of a piercing sensation, at least in my case, and I guess that I will know how effective it is being after my next blood tests in early June. Sadly I am stilling the unwanted appearance of ulcers on my tongue, and my fatigue and energy levels are becoming more onerous, but I keep plodding along.

Take care all, stay safe, be kind to yourselves and carry on smiling.

Best wishes,
Jimbo165

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Hi @Jimbo165 I haven’t felt too bad on the Besremi but the tiredness appears to be the day after the injection wheras the pegasys too longer to kick in. Yes there was a lot less of a stabby feeling with this device but there was a weird tight feeling across the injection site for a few hours. Definitely different but as you say we won’t know how good it is working until blood tests.

All the best
xxx

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Good evening @Chrispy and everyone else reading this thread, and a very Happy Easter to you all. I hope that you are well and that your tiredness has eased somewhat now.

Having had my second Besremi jab 8 days ago now I thought a further update was in order. I’ve had a trying and tiring week, with both a B12 and this Spring’s Covid injections, both on Tuesday afternoon, with my annual Asthma review in between those jabs, all in the space of 25 minutes! I like to think that I am getting my money’s worth out of the NHS. I felt thoroughly awful on Wednesday, to the extent that my work colleagues all avoided me (probably for the best!) as I wasn’t my usual cheerful and sunny self. I wonder if anyone else has had similar after effects following the Covid jab this Spring? By Thursday afternoon I was approaching normal, well, my normal at any rate, but I have noticed that a rash has appeared on my stomach at the Besremi injection site. As always seems to happen, this sort of thing has occurred on a Bank Holiday Weekend! I’m sure that there must be a Law, along the lines of Murphy’s or Sod’s Law, that governs these occurrences!

My energy levels have felt at their usual “insufficient” level, but I keep plodding along, as we all do.

No overdoing the Easter Eggs tomorrow folks!

As always, stay safe, take care, be kind to yourselves and keep on smiling.

Best wishes,
Jimbo 165

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Hi @Jimbo165 it seems to have been a rough week for you, I always gauge it by whether your work colleagues avoid you or not.
I was fine after my spring jab, although I have been after all of them, which is too many for me to count on my fingers now.
If your rash gets worse don’t forget you can always ring your haematology ward, before 111
A very happy Easter to you all too and I am smiling looking at my Easter Eggs

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Hi @Jimbo165 and all the others following this thread. Sounds like you have a lot going on medically in a small space of time and the tiredness can’t help matters. I also had a very exhausting weekend but it is never clear if it is the Besremi or something else. I had to cancel my appointment for the covid jab as i had a 2nd procedure on my back where the instruction said no covid jabs within 2 weeks before or after it. This involved sedation but i wouldn’t think the effects would last this long so i am wondering if it is a mixture of things. I don’t like to give in to the tiredness but on 2 occasions i actually went back to bed which is not like me at all. Bought up by parents who insisted you had to be t deaths door to go back to bed i have found it difficult to allow myself to rest.

I hope your rash has improved by now. I had a problem with one of my pegasys injections affecting my skin but it was just the one so hopefully yours will just be a one off. Fingers crossed.

Haematology appointment at 9am tomorrow and assume I will have a blood test afterwards so will hope for a drop in platelets.

All the best to everyone
x

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Good evening @Chrispy, and everyone else, I hope you’ve all survived the Easter Holidays and that things are returning to “our normal” once again.

I know what you mean about not giving in: it really does go against the grain despite the potential “harm” that our stubbornness (I prefer the term determined!) may be causing us.

Thankfully the rash has settled down some, although it is still there, or I am getting used to the itch! I’ve been taking a daily over the counter Antihistamine for several months now, just to try and take the edge off of the daily itchings.

Good Luck with your appointment tomorrow and I hope that your blood tests have some helpful results for you.

Take care, stay safe and be kind to yourself.

Best wishes,
Jimbo165

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Hi @Jimbo165 , @Chrispy , @Erica and everyone else on this chain!

Hope everyone had a good Easter? Tiredness does seem to be the theme amongst us doesn’t it! I had a lovely Easter but was incredibly busy with granddaughters ponies/ riding and a big family lunch- pegasys injection on the Sunday. I was then more tired than normal all this week which is not like me at all and I’m still not back to normal! Serves me right for doing too much! Does anyone else get snappy when they’re tired? I certainly do :weary_face:.

This sunshine is wonderful isn’t it although I then feel I’ve got to do loads of gardening ( it never stops!)

Take care everyone

Gillyj

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Yes, I know if I chose to to overdo it I will pay the price for twice as long.
I either retreat into myself or get snappy when I am tired.
Be very kind to yourself and the ‘got’s’ are usually my word and lead to me feeling resentful and not anyone else’s word.
Be kind to yourselves, everyone

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Good evening @Gillyj, @Chrispy and @Erica, along with the rest of our fellow, and fellowette, travellers. Yes thank you, I managed to survive Easter, and also avoided receiving any Easter Eggs too, although I was able to dispense enough eggs to make a hen feel exhausted!

I’m glad you had a lovely, if busy, Easter. You seemed to pack more into yours than I did with mine!

I’m glad that you are still managing well on your Pegasys though. Yes, we all seem prone to using the slightest hint of feeling “well” to go and overdo things, with the usual follow up of then feeling rubbish for a while.

@Chrispy, how did your appointment go the other day? I hope that your blood work results were at least neutral and with luck promising ones for you and that your Besremi injections haven’t increased in frequency for you. Also that your back is improving now too.

For myself, and I may have mentioned this fact before, it’s funny how “things” occur at weekends! I was out for lunch today, with my sister and Brother-in-Law, for a belated Birthday meal and catch-up. We were enjoying a nice carvery at The Pretty Pigs (where do they get these names from?) when, in mid-chomp, one of my dental crowns decided to detach itself from its expected and required position! As you will know, it can be difficult enough to make an appointment with the dentist, let alone on a weekend, so my gnashers will have to wait until Monday at the earliest to be seen. Other than this calamity, I am my usual self, dog-tired and achy and, in all honesty, feeling as though my fatigue is getting worse.

Such is life.

Take care and stay safe all, be kind to yourselves and keep on smiling.

Best wishes,
Jimbo165

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Yep, it’s always the weekend isn’t it.
If the resulting gap left from detached crown is visible to all @Jimbo165 I will give you dispensation from keeping on smiling till it is reinstated.
Best wishes to all

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Fatigue is such an understated word and no one understands it unless they have truly experienced it .

Sorry @Jimbo165 about your crown- hope you’ve managed to get an appointment? And I do emphasise with you for feeling so tired all the time.

This is only a thought but if your HB is at borderline normal level you might ask your doctor if you could go on iron tablets to see if it makes a difference to your energy levels- mine were on the lower side of normal and it really improved my energy when I went on iron.

Take care everyone

Gillyj

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Fortunately, if that is the correct word, said iffy toof is one of my molars so is helpfully hidden from everyone else, unless I am within biting range! :rofl:

TTFN,
Jimbo165

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My next blood tests are currently due in early June, so I won’t know until then, but I am reluctant to add to my medication as I am already on more than I want to be, currently 9 tablets/capsules plus the Besremi.

TTFN,
Jimbo165

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Hi @Jimbo165 I hope you manage to get your crown sorted soon as that does sound a pain.

I had my appointment on wednesday and blood was taken but i haven’t been told the result yet. Usually she phones on the friday but nothing this time. Of course i am now expecting bad news that she didn’t want to give me before the weekend but is probably just that she forgot. I have emailed her PA this morning asking for the results. Besremi is being kept at the same frequency and amount for now so due on wednesday. I think you are two days behind me.

My back is feeling improved so i plan a trip to the gym this morning but just a light session on an exercise bike and see how that goes.

I have my shingles jab on friday and was told there would be little reaction and it was nothing compared to the covid one. This is not the case for me. I dont react to the covid jab after so many but the shingles one has left me with a painful red itch arm most of the weekend. It is feeling a bit better today though.

Hope everyone is enjoying the sunshine
x