Psoriasis

Melendez

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Melendez

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Gael23

Melendez wrote: »

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I went private for the first appointment and then got transferred to the public clinic, but then I think that’s the process in Vincent’s. I was going in twice a week at one point so public is the only way to go in that respect. But it takes a year to get an initial appointment as a public patient.

DickSwiveller Returns

Gael23 wrote: »

I went private for the first appointment and then got transferred to the public clinic, but then I think that’s the process in Vincent’s. I was going in twice a week at one point so public is the only way to go in that respect. But it takes a year to get an initial appointment as a public patient.

I had to wait almost 2 years to get an appointment in St James'. It's a joke.

Melendez

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brevity

Gael23 wrote: »

It’s incredibly expensive, something like €10k every 3 months.

Really? That's nuts. What would we do without the DPS?

0lddog

brevity wrote: »

Really? That's nuts. What would we do without the DPS?

Really? - yes

That's nuts. - it is

What would we do without the DPS? - exactly


For example 40mg Humira pen has a figure of €1104.72 against it

( From : https://www.sspcrs.ie/libr/html/monthlyproductupdate.pdf )

Gael23

0lddog wrote: »

Really? - yes

That's nuts. - it is

What would we do without the DPS? - exactly


For example 40mg Humira pen has a figure of €1104.72 against it

( From : https://www.sspcrs.ie/libr/html/monthlyproductupdate.pdf )

There was something on the radio and in the papers in the past week about the cost of Biologic medicines, it’s phenomenal and they are all patented so no proper generics.
Is that €1104 for the box or each pen? I thought Enbrel was €800 per box but I’m open to correction on that.

0lddog

Believe per pen ( based on throw away remarks made to me )

There are a number of presentations of Enbrel listed on the PDF. Have a look yourself to see which one matches the one you are thinking of.

wonga77

How much does it actually cost to manufacture I wonder? It's scandalous pricing really

eeloe

Probably pennies to manufacture. The mark up on pharmaceutical manufacturing is scandalous.

It’s the parents, that’s where the money is. Patent a product, name your price!

brevity

I did a bit of googling and the Reddit thread makes for some interesting reading

https://www.reddit.com/r/Psoriasis/comments/3oow8r/so_how_much_does_stelara_actually_cost_price/

eeloe

Jaysus!

huskerdu

eeloe wrote: »

Probably pennies to manufacture. The mark up on pharmaceutical manufacturing is scandalous.

It’s the parents, that’s where the money is. Patent a product, name your price!

Im not going to defend the profits of pharma companies but the millions it costs to develop a new drug have to be recouped before they make any profit.

Correction - the average development cost of a new drug is $2.6 Billion

https://cen.acs.org/articles/92/web/2014/11/Tufts-Study-Finds-Big-Rise.html

Mountainsandh

Melendez wrote: »

This post has been deleted.

I'm still private with the rheumy, but it stings badly to fork out 100 euros per consultation, plus the blood tests and medication... I'm getting worried now that if he offers alternatives or complementary medication to methotrexate, I simply won't be able to afford it.

What did you guys do ? just ask the rheumy if you could switch to public ?

Gael23

Mountainsandh wrote: »

I'm still private with the rheumy, but it stings badly to fork out 100 euros per consultation, plus the blood tests and medication... I'm getting worried now that if he offers alternatives or complementary medication to methotrexate, I simply won't be able to afford it.

What did you guys do ? just ask the rheumy if you could switch to public ?

I’m in Dermatology and on High Tech medicines. I think the procedure is that you switch. But they have a specialised Psoriasis clinic there too so maybe that’s why I was switched. My insurance only allows 7 consultants visits per year anyway so would have had to insist if I wasn’t,
I was waiting 4 months for a first private appointment with Professor Kirby back in 2014 so wasn’t all that quick.

eeloe

So according to the receptionist last week, Prof.Kirby is going to be ringing me back today about the whole MTX thing.

Fingers crossed he can suggest something else, if not i'll just ask him to refer me for phototherapy in UHW.

qo2cj1dsne8y4k

4th week on MTX. I take it on a Saturday night as advised, as Sunday and Monday are my weekend. I was so worried and upset about taking the medicine but it’s been fine. No real side effects at all. The only thing I’m struggling with is this weekend my gums are very sore and I feel as though I’m coming down with a cold or a flu as every muscle I own seems to hurt. The pharmacist said not to take any OTC cold meds but to see my gp, I’ll feel like a right dose going to the dr with a cold

0lddog

For a good while after starting MTX I had monitoring bloods done once a month.

What did y'all do on this when starting off ?

eeloe

0lddog wrote: »

For a good while after starting MTX I had monitoring bloods done once a month.

What did y'all do on this when starting off ?

I was told recently when i start it(won't be starting it now) that i would be getting bloods done every 3 weeks.

Robin132

0lddog wrote: »

For a good while after starting MTX I had monitoring bloods done once a month.

What did y'all do on this when starting off ?

I got bloods done after a trial dose, then a month after starting and then 3 months after that.... which scares me a little when most people seem to get them done every few weeks!!

huskerdu

Grace Thoughtless Mortal wrote: »

4th week on MTX. I take it on a Saturday night as advised, as Sunday and Monday are my weekend. I was so worried and upset about taking the medicine but it’s been fine. No real side effects at all. The only thing I’m struggling with is this weekend my gums are very sore and I feel as though I’m coming down with a cold or a flu as every muscle I own seems to hurt. The pharmacist said not to take any OTC cold meds but to see my gp, I’ll feel like a right dose going to the dr with a cold

I have a lot of mouth ulcers. The doctor upped my dose of Folic acid as it might be a side effect of lack of folic acid. Mention it to the doctor . Don’t suffer unnecessarily

huskerdu

Robin132 wrote: »

I got bloods done after a trial dose, then a month after starting and then 3 months after that.... which scares me a little when most people seem to get them done every few weeks!!

I was the same. The results were always good so no need for any
More. It might be a good sign that you don’t need them more often

rubadub

huskerdu wrote: »

I have a lot of mouth ulcers.

I rinse with salt water to keep them in check. Have not had full blown tonsilitis in years which I reckon is due to salt water. Used to get it almost yearly.

Many reckon the old Jewish Penicillin (chicken soup) is since you are downing salty thick liquid which knocks out nasties in your mouth and throat. Goes down deeper than shallow gargling would do.

Mountainsandh

0lddog wrote: »

For a good while after starting MTX I had monitoring bloods done once a month.

What did y'all do on this when starting off ?

Had a blood test before starting.
Then every second week for the first 3 months.
Now I have a blood test every month.

Last one wasn't great so I don't think that'll be stopping any time soon.



Huskerdu I had mouthsores at one stage too, pharmacist gave me a gel, not bonjella now, something a bit more potent I think, like an anesthetic or something ? that was good.

I was taking the folic acid in one dose 4 days away from the methotrexate at the time. Dr adjusted that to taking Folic Acid 4 times a week, not the 3 days before-on-after Mtx. It worked.

I think opinions are a bit divided on that, but folic acid basically cancels out the action of Mtx, so the less the better, and the longest after Mtx dose, the better.

My rheumy here has said that studies have shown a decrease in efficacy of Mtx when folic acid was taken too close, or increased.

Then again, on an American group I was following on Facebook, some woman came on to say this had been refuted by a more recent study.

I since left the group, the Americans are gas, they were all taking tonnes of over the counter medication along with whatever treatment they were on, and trying to fiddle with side effects by self medicating with extra folic acid etc...

Every sneeze, every itch, any and every symptom they would ever have in their life would be attributed to Pso Arthritis.

I had enough of that after a while !

huskerdu

Mountainsandh wrote: »

I'm still private with the rheumy, but it stings badly to fork out 100 euros per consultation, plus the blood tests and medication... I'm getting worried now that if he offers alternatives or complementary medication to methotrexate, I simply won't be able to afford it.

What did you guys do ? just ask the rheumy if you could switch to public ?

Its irrelevant whether you are a public or private patient.
If you are on a prescription medication which costs more than €144 a month, you only pay €144 and you can claim €28 of that back on tax.
THis is the case for most medication and for all non-medical card holders.

The biologic i was on (Simponi) was covered and I think all the others one are too

qo2cj1dsne8y4k

My rumathologist has me on folic acid 6 days a week (except for the day I take mexo)and I can’t recall when he told me to get my blood checked. He gave me a little book I have to get the nurse to fill in.

ibarelycare

huskerdu wrote: »

Its irrelevant whether you are a public or private patient.
If you are on a prescription medication which costs more than €144 a month, you only pay €144 and you can claim €28 of that back on tax.
THis is the case for most medication and for all non-medical card holders.

The biologic i was on (Simponi) was covered and I think all the others one are too

It’s €134 now. Not a big saving but every little helps.

One little bonus I find from having this illness is that all the money I spend on medical expenses results on a nice little lump sum from Revenue every January. This year I got over €550 and was able to book a holiday for my bf and I. Every cloud...

0lddog

huskerdu wrote: »

Its irrelevant whether you are a public or private patient.
If you are on a prescription medication which costs more than €144 a month, you only pay €144 and you can claim €28 of that back on tax.
THis is the case for most medication and for all non-medical card holders.

The biologic i was on (Simponi) was covered and I think all the others one are too

Huskerdu, is that €144 €134 per month still a total aggregated over all the people living at the same address ( and not just for each person ) ?


( I believe only items listed on

https://www.sspcrs.ie/libr/html/mont...ductupdate.pdf

Qualify )

Mountainsandh

ibarelycare wrote: »

It’s €134 now. Not a big saving but every little helps.

One little bonus I find from having this illness is that all the money I spend on medical expenses results on a nice little lump sum from Revenue every January. This year I got over €550 and was able to book a holiday for my bf and I. Every cloud...

I'd love to benefit from that, but Mr M is self-employed, so guess what... it just gets taken off his tax, and that's still humongous.

I've never bothered doing the Drugs scheme thing, but now I think I'll have to, between blood pressure medication and whatever other treatments might be in the pipeline, it really adds up.