Crohn's Disease

OUTDOORLASS · 05-04-2021 5:08pm

Hi guys, Hope ye are all doing ok. I got a text this morning saying that CUH had put my name forward for the Astra Vaccine.
Booked in for Weds morning. I.m on 2 imuno suppressors. Humira and PuriNethol.

The_Conductor · 05-04-2021 5:22pm

OUTDOORLASS wrote: »

Hi guys, Hope ye are all doing ok. I got a text this morning saying that CUH had put my name forward for the Astra Vaccine.
Booked in for Weds morning. I.m on 2 imuno suppressors. Humira and PuriNethol.

Good to hear it.
I'm on two immune suppressants here- Stelara and Imuran (Azathioprine) and haven't heard anything at all.
My little wifey is a type 1 diabetic- and got her initial AZ injection today.
It'll be good to get out of the house again.

essgee268 · 05-04-2021 8:42pm

Im on Humira and Imuran goy AZ 2 weeks ago all fine took Paracetemol before and after woke during first night and took a Paracetomol and went back to sleep. Slight Flu like symptoms afternoon of next day but fine since

OUTDOORLASS · 05-04-2021 10:35pm

Thanks for that. Seems to hit people differently.

05-04-2021 11:02pm

Ya I got hit a bit heavier than the above. So got chills and a migraine. But was all good after 48 hours.

Northern Monkey · 06-04-2021 9:56am

Great to see a few people getting called. I haven’t heard anything yet but it gives me hope!

OUTDOORLASS · 06-04-2021 11:11am

I just saw a notice on local FB Covid page that local GP is doing immuno compromised people in month of April. So it's looking good for us all .

Ravage1616 · 06-04-2021 11:32am

I attend Connolly Hospital, I got a text on Thursday just gone asking did i still require the vaccine and asking for me to reply.

Got my 2 appointment's today and my first jab is this Thursday.

The_Conductor · 06-04-2021 2:47pm

OUTDOORLASS wrote: »

I just saw a notice on local FB Covid page that local GP is doing immuno compromised people in month of April. So it's looking good for us all .

You're Cork?
No such luck here- I was onto our local GP today- they still haven't done the 75s-80 group- and are consistently getting far fewer vaccines than they need, they reckon they won't have the over 75s done for another 2-3 weeks.

Its so frustrating- we're not taking biologics and immune suppressants for fun- yet we all seem to be treated differently- it seems to be a lottery depending on where you live and who your consultant is.

0lddog · 06-04-2021 2:53pm

The_Conductor wrote: »

...
Its so frustrating- we're not taking biologics and immune suppressants for fun- yet we all seem to be treated differently- it seems to be a lottery depending on where you live and who your consultant is.

Isnt it just.

I'm on a biologic ( HiTech list ) thru a public hospital. Still dont know if Hospital or GP should be doing me.

saneman · 06-04-2021 3:47pm

0lddog wrote: »

Isnt it just.

I'm on a biologic ( HiTech list ) thru a public hospital. Still dont know if Hospital or GP should be doing me.

I also use public clinic, I'm on Amgevita (Humira biosimilar). I had been in contact with both my GP and the clinic about 3 weeks ago but neither were able to enlighten me on when I could expect the vaccine other than "the HSE are looking after it" and that I should be considered in Group 7.

I received a text message on 26th Mar stating my appointment for AZ vaccine was on 30th at the local vaccination centre. I had no side effects but probably should have taken a paracetamol beforehand, just in case. I will for the 2nd dose.

It's a waiting game unfortunately and no doubt based on the efficiency of the vaccine roll-out in your particular region.

Gael23 · 06-04-2021 3:52pm

Is anyone attending a private hospital?

The_Conductor · 06-04-2021 4:05pm

Gael23 wrote: »

Is anyone attending a private hospital?

Yes. No idea what is happening. GP says the HSE will look after it. HSE don't want to know if you're not attending an acute hospital. Private GI Consultant will only assess on the basis of GI- and not other conditions (so haematology issues, sarcoidosis and other issues- get ignored in the assessment).

Its annoying as hell.

The only news I got from the HSE was 'well, you'll be included in the Group 7 immunocompromised patient list from the 3rd May anyway- but you'll probably have your first dose before then, as you'll be on the list sent over from the private hospital'......... Nope. No idea how I'll be in Group 7 either- if the private hospital aren't sending patients over..........

Apparently some GP surgeries are doing both Group 4 and Group 7s- but there isn't a list anywhere- and you can't get on the list anyway- as the HSE admin run it, not the GPs- who just send you back to your consultant...... again...... in a maddening loop.

To say this is frustrating is the understatement of the decade.

Gael23 · 06-04-2021 4:50pm

What hospital are you in?

Northern Monkey · 06-04-2021 4:54pm

My gp had a pre-registration page on their website for the vaccine where you pick your category but I’ve no idea what their process is for verification after that.

Ravage1616 · 08-04-2021 10:00am

Got My vaccine today. I'm on entyvio infusions. If you have an IBD nurse in your hospital contact them and them maybe able to help get you info on when you will get your vaccine.

The_Conductor · 08-04-2021 10:45am

Northern Monkey wrote: »

My gp had a pre-registration page on their website for the vaccine where you pick your category but I’ve no idea what their process is for verification after that.

Wish all the GPs were as organised as yours- I suppose the bigger issue with Group 4 and 7- is that the GPs are out of the loop, its up to the consultants and the clinics- and they just seem to be completely arbitrary in how they are approaching these things.

Worse case scenario- I imagine most of us who haven't be caught in Group 4 will be mopped up in Group 7 in Week 1-2 of May- aka 4 weeks time. After 16 months- we're almost there.

The bigger issue for a lot of people seems to be that they are lengthening the gap between injection 1 and injection 2 to between 12 and 16 weeks- to try and fit as many people in as possible. It sounds like they are doing this to be seen to be doing something to as many people as possible- rather than on scientific grounds- aka giving as many people as possible something- even if its not ideally what they need.........? Its similar to what they're doing in the UK- 68% of people have received a jab but only 11% of people have gotten the second jab.........

08-04-2021 10:54am

The_Conductor wrote: »

Wish all the GPs were as organised as yours- I suppose the bigger issue with Group 4 and 7- is that the GPs are out of the loop, its up to the consultants and the clinics- and they just seem to be completely arbitrary in how they are approaching these things.

Worse case scenario- I imagine most of us who haven't be caught in Group 4 will be mopped up in Group 7 in Week 1-2 of May- aka 4 weeks time. After 16 months- we're almost there.

The bigger issue for a lot of people seems to be that they are lengthening the gap between injection 1 and injection 2 to between 12 and 16 weeks- to try and fit as many people in as possible. It sounds like they are doing this to be seen to be doing something to as many people as possible- rather than on scientific grounds- aka giving as many people as possible something- even if its not ideally what they need.........? Its similar to what they're doing in the UK- 68% of people have received a jab but only 11% of people have gotten the second jab.........

The spreading out of dose 2 to 16 weeks worries me in general tbh. It's setting up a scenario where efficacy could be negatively hit.

Also I feel pretty lucky to have gotten into group 4 as I don't exactly match with the criteria but assume my doc has taken into account my history which puts me at higher risk. But the random nature of getting into group 4 or 7 seems so disorganized.

patnor1011 · 08-04-2021 7:17pm

I do not much about how these groups are organized but I got text message last week with appointment but since it was astra zeneca vaccine I declined.
I am not comfortable at the moment to give it a go I guess I will wait few more months and see how it all goes.

iano.p · 08-04-2021 10:01pm

I got the astra zeneca Tuesday in kilkenny. Felt sick yesterday and a sore arm today hopefully that's all I get. After weighting up the pros Pros and cons I'm delighted I got it now.

Gael23 · 30-04-2021 10:41am

Got the Pfizer vaccine yesterday. Not feeling great if I’m being honest.

Only that work is fairly hectic at the moment I’d be taking a sick day today

The_Conductor · 30-04-2021 10:56am

Gael23 wrote: »

Got the Pfizer vaccine yesterday. Not feeling great if I’m being honest.

Only that work is fairly hectic at the moment I’d be taking a sick day today

Nada here, thus far.
Not going to call them- will wait and see what happens.
Was told I have a collapsed lung during the week and am on antibiotics for pneumonia- I need to get this vaccination sorted, I don't need Covid ontop of everything else.

Gael23 · 30-04-2021 11:01am

The_Conductor wrote: »

Nada here, thus far.
Not going to call them- will wait and see what happens.
Was told I have a collapsed lung during the week and am on antibiotics for pneumonia- I need to get this vaccination sorted, I don't need Covid ontop of everything else.

I actually got it from my GP rather than through my Gastro but you won’t be getting it when on antibiotics

Northern Monkey · 30-04-2021 11:32am

Nothing here either sadly but the HSE website says group 7 should be getting vaccinated currently.

Edit: phoned them there and they said they expect to have vaccines mid-May. I don’t know if that means they are only starting at that point or if that is specific to our group.

Northern Monkey · 04-05-2021 2:30pm

I got a call from the GP today. First injection on Saturday!

OUTDOORLASS · 04-05-2021 10:34pm

You.l prob be getting the Pfizer so. Hope it goes well. I was told take an antihistamine and paracetamol an hour before getting my jab.

jellybear · 14-05-2021 10:06pm

Just some info which may be of interest to some- A family member who attends TUH received a text for a vaccine appointment today for Citywest, Pfizer vaccine. Text stated they had been referred by their consultant.
Hope anyone still waiting hears soon.

Northern Monkey · 14-05-2021 11:34pm

jellybear wrote: »

Just some info which may be of interest to some- A family member who attends TUH received a text for a vaccine appointment today for Citywest, Pfizer vaccine. Text stated they had been referred by their consultant.
Hope anyone still waiting hears soon.

I got the same text today but have already got my first dose via my GP

Gael23 · 15-05-2021 6:41am

I got a phone call from Vincent’s yesterday from someone doing up lists asking do I still need a vaccine

jellybear · 15-05-2021 7:29am

Northern Monkey wrote: »

I got the same text today but have already got my first dose via my GP

Family member was the same so declined it. At least it'll free up 2 more vaccines

BobMc · 16-05-2021 10:52am

My son is getting 2nd Pfizer shot this Wednesday. Paeds consultant organised it. He's nearly 17 due to covid we've not been moved to adult consultant yet

The_Conductor · 17-05-2021 8:30am

Gael23 wrote: »

I got a phone call from Vincent’s yesterday from someone doing up lists asking do I still need a vaccine

Ditto. Got a follow up text on Saturday afternoon with a date/time for Citywest. Its a Covax Moderna vaccination I'm down for. What a relief. St. Vincents said they assumed I had received it- but were calling all Group 4s and Group 7s to make sure. Phew. I'm like a giddy kid on Christmas morning waiting for my vaccination.

Gael23 · 17-05-2021 9:31am

The_Conductor wrote: »

Ditto. Got a follow up text on Saturday afternoon with a date/time for Citywest. Its a Covax Moderna vaccination I'm down for. What a relief. St. Vincents said they assumed I had received it- but were calling all Group 4s and Group 7s to make sure. Phew. I'm like a giddy kid on Christmas morning waiting for my vaccination.

Citywest wouldn’t suit me, I’m on the total opposite side of Dublin so I’m glad I got it from my GP.
Do you live out that side?

The_Conductor · 17-05-2021 9:45am

Gael23 wrote: »

Citywest wouldn’t suit me, I’m on the total opposite side of Dublin so I’m glad I got it from my GP.
Do you live out that side?

Lucan- so its not a million miles away- and my GP is apparently still on the over 70s...........

Honestly- if they'd told me I had to drive to Galway- I'd happily hop in the car, with a smile on my face- and the miles would flash before my eyes.

Getting a vaccination is really like Christmas for me!

BobbyMalone · 30-05-2021 1:36pm

The_Conductor wrote: »

Ditto. Got a follow up text on Saturday afternoon with a date/time for Citywest. Its a Covax Moderna vaccination I'm down for. What a relief. St. Vincents said they assumed I had received it- but were calling all Group 4s and Group 7s to make sure. Phew. I'm like a giddy kid on Christmas morning waiting for my vaccination.

Do you know whether this is based on severity of disease or the amount of medication you are taking (or both)? I ask because I have not heard anything from Vincent's, despite trying to make contact about whether I might be able to get an early vaccine.

Gael23 · 30-05-2021 3:38pm

BobbyMalone wrote: »

Do you know whether this is based on severity of disease or the amount of medication you are taking (or both)? I ask because I have not heard anything from Vincent's, despite trying to make contact about whether I might be able to get an early vaccine.

What medication are you on?

30-05-2021 3:53pm

I'm not sure if anywhere is consistent on what grounds consultants or gps are selecting tbh. Eg I'm not currently medicated but I've been on immunosuppressants, infliximab fairly recently so I'm assuming that the risk of me going back on something was enough to consider me high risk. But then heard of plenty that have heard pretty much nothing in spite of being on biologics etc.

BobbyMalone · 30-05-2021 4:52pm

Gael23 wrote: »

What medication are you on?

Azathioprine, 50mg/day.

Deleted User wrote: »

I'm not sure if anywhere is consistent on what grounds consultants or gps are selecting tbh. Eg I'm not currently medicated but I've been on immunosuppressants, infliximab fairly recently so I'm assuming that the risk of me going back on something was enough to consider me high risk. But then heard of plenty that have heard pretty much nothing in spite of being on biologics etc.

It's quite frustrating, and doesn't make any sense: if the risk of you going back on something is enough to get an early jab, surely actually being on something would result in the same?

30-05-2021 6:08pm

BobbyMalone wrote: »

Azathioprine, 50mg/day.

It's quite frustrating, and doesn't make any sense: if the risk of you going back on something is enough to get an early jab, surely actually being on something would result in the same?

Yep, it's incredibly inconsistent unfortunately and there really should not be a luck of the draw element to this. I'm not really sure how it's working atm but it might be worth contacting your gp or consultant about it.

Gael23 · 30-05-2021 7:07pm

Yes you should be in group 7 on Aza

The_Conductor · 30-05-2021 8:46pm

Deleted User wrote: »

Yep, it's incredibly inconsistent unfortunately and there really should not be a luck of the draw element to this. I'm not really sure how it's working atm but it might be worth contacting your gp or consultant about it.

GPs are (allegedly) putting together Group 7 lists (subject to their preceding groups being completed, which isn't necessarily the case).

@BobbyMalone - if you haven't heard anything from your GP (thus far)- how about ringing your consultant and asking whether they will add you to their list?

The list SVUH and SVPH were using- was the hi-tech list (so I was told)- and they went through all the recipients of high tech prescriptions in the previous 12 months to check their status. Nonetheless- azathioprine does classify you as group 7, even if its not on the hi-tech list- so I'd still suggest you should contact your consultant and try to see what is happening.

BobbyMalone · 30-05-2021 10:25pm

The_Conductor wrote: »

GPs are (allegedly) putting together Group 7 lists (subject to their preceding groups being completed, which isn't necessarily the case).

@BobbyMalone - if you haven't heard anything from your GP (thus far)- how about ringing your consultant and asking whether they will add you to their list?

The list SVUH and SVPH were using- was the hi-tech list (so I was told)- and they went through all the recipients of high tech prescriptions in the previous 12 months to check their status. Nonetheless- azathioprine does classify you as group 7, even if its not on the hi-tech list- so I'd still suggest you should contact your consultant and try to see what is happening.

Thanks for that - I never heard of the hi-tech list, but I think that's a good idea to contact my consultant directly. I had been trying the nurses in SVUH but maybe a more direct approach would work.

The_Conductor · 01-06-2021 5:44pm

If you're in SVUH- ring the IBD nurse, they're probably the easiest people to contact- and ask if they'll add you to the St. Vincent's list.

frosty123 · 01-06-2021 6:47pm

Does C D basically mean going to do a number 2 is extremely uncomfortable?

The_Conductor · 03-06-2021 7:49am

frosty123 wrote: »

Does C D basically mean going to do a number 2 is extremely uncomfortable?

Lots of us with Crohn's have painful bowel motions- however, there are a list of things longer than my arm that could cause difficulty or uncomfortable toilet issues, it is not a good idea to assume that its Crohn's (or anything in particular). If symptoms persist- let your GP know, and have it investigated properly. Using Boards, or Google- to try and find a diagnosis for your symptoms is a very bad idea. You only get the very worse case scenarios, alongside absolute miracles, on the internet- you do not hear what happens with 90% of people.

If it persists- talk to your GP and get it checked out- but don't make any assumptions/presumptions.

frosty123 · 03-06-2021 4:33pm

Nothing wrong with my bowel movements..I was just curious, hence the question

Gael23 · 04-06-2021 9:02am

frosty123 wrote: »

Nothing wrong with my bowel movements..I was just curious, hence the question

My main symptom was extreme fatigue. In July 2018 I fell asleep at work and the resulting trip to A&E got me finally diagnosed after 4 years of symptoms

17-06-2021 6:56pm

So in the process of getting my mortgage and signing up for mortgage protection. The provider has requested a report from my gp. I've never had surgery, currently medication free and been years since last flare. I did have a reaction to infliximab last year but that's it. Regular bloods and stool tests done, I'm assuming all of the above makes me reasonably safe to get cover but probably a higher premium. Anyone faced similar scenario?

Ravage1616 · 18-06-2021 9:53am

Deleted User wrote: »

So in the process of getting my mortgage and signing up for mortgage protection. The provider has requested a report from my gp. I've never had surgery, currently medication free and been years since last flare. I did have a reaction to infliximab last year but that's it. Regular bloods and stool tests done, I'm assuming all of the above makes me reasonably safe to get cover but probably a higher premium. Anyone faced similar scenario?

Literally in the same boat as your self. Except i have had surgery and have a permanent stoma now but surgery was 4 years ago and Crohns has been complete controlled in that time by entyvio. So hoping it will be ok!

Another option is to look at Laya Life Insurance. you can get a quote of them without a medical and get cover immediately. But it will be pricey. It's my back up plan if there delays with the broker.

TessC · 18-06-2021 12:16pm

Deleted User wrote: »

So in the process of getting my mortgage and signing up for mortgage protection. The provider has requested a report from my gp. I've never had surgery, currently medication free and been years since last flare. I did have a reaction to infliximab last year but that's it. Regular bloods and stool tests done, I'm assuming all of the above makes me reasonably safe to get cover but probably a higher premium. Anyone faced similar scenario?

My situation is very similar to yours—no surgery, years since my last flare, though I am on medication. I got mortgage protection insurance late last year. I went through lion.ie but the policy was through Aviva. They did load the premium but not as badly as I expected. I'd guess maybe an extra 10-15 euros a month compared to what someone without my medical history would pay. Don't be surprised if they end up going back to your GP for more information. I worried it was a bad sign when that happened to me, but I think sometimes GPs err on the side of giving as little information as they have to.

Crohn's Disease

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