Psoriasis

eeloe

Yes mine used to get better on one side and worse on the other.

It was terribly annoying. Happy for clearance, but also depressed due to it getting worse on the other side! Haha

eeloe

Grace Thoughtless Mortal wrote: »

Haven’t been to gp, forgot to get bloods done last month too
Have app with consultant on 16th and will mention it then
On 25mg of mexothrexate

Make sure to get bloods done ASAP.

And how is the MTX working for you?

qo2cj1dsne8y4k

eeloe wrote: »

Make sure to get bloods done ASAP.

And how is the MTX working for you?

Skin is amazing!! Haven’t been so happy with my skin ever.
Joints feel worse to be honest but not consistent. This all started with my index finger being stiff two years ago. Last year I was in physio with my ankle. Then feb of this year my ring and middle finger of same hand became so bad I couldn’t close my hand around my hairbrush. My hand was so swollen it would throw while I slept and would be severe enough to wake me up. My own gp did blood test after blood test but nothing ever showed up. He told me I had all the symptoms of arthritis but the blood work didn’t support it.
Next time I was a locum dr who saw the psoriasis on my hair line and with a glimpse of my hand he said “psoriatic arthritis” and put me on steroids immediately. They worked amazingly. As soon as they ran out I was back to square one. Couldn’t even put my feet into proper shoes.

Asked gp for more and he was very reluctant to put me back on steroids. Eventually gave me a script and told me only to start them if I REALLY had to. By the time I went for my 3rd script he gave me a talking to that these weren’t suitable for long term use, he’d give them to me but he wanted me to see the rumathologist, said approx a week for the app.

In the mean time my entire hand flared up, my back hurt, my lungs hurt, I was hospitalized for pooping blood. I went to the accident and emergency dept because I’d rather pay 100 and be seen for sure than arsing around with my gp. They did my blood and told me my esr was extremely high, and they doubled my steroids. I went back to the a and e dept ten days later (was pooping blood) and again they checked my esr. It was doubled to like 80 or 90 in ten days and my haemoglobin had dropped a good bit.

I saw the consultant shortly after that, I’m going to say maybe a week later. Skin cleared up. Swelling is gone down. But the aches are so bad. My knees my wrists my neck my fingers my elbows. I feel like I’ve no real strength left in any joints. I’m just left with the ache and no other symptoms

eeloe

That does sound like a right dose!

Hopefully you can get sorted, I know they can give a bio on top of MTX to help with PsA, so hopefully you’ll get somewhere with your appointment in a few days.

Mountainsandh

Grace Thoughtless Mortal wrote: »

. I’m just left with the ache and no other symptoms

That sounds eerily familiar to how I'm feeling right now...
Although on the lower dose of Mtx the pains had pretty much all gone, now (with 5 mg more) I get more specific, more pointed pains in random joints. Well, the random bit was similar before anyway, but before it was diffuse pain + pointed pain occasionally. Now it's fairly specific.

Still have that pain in the foot joint, it is super specific so I was able to find out exactly the spot on diagrams, it's the dorsal calcaneocuboid ligament. And possibly the ones beside it a little.

eeloe

10euro reduction in the drugs payment scheme for anyone who's using it!

eeloe

Right, so....Stelara.

I'm due my next injection next Thursday.

For the last 3 weeks, i've been having some side effects, mainly extreme fatigue, nausea(not all the time) dizziness, back pain, head aches....

Been to my GP, and spoken to my derm, and they are all of the opinion they are expected side effects and they will pass. I'm worried that when i get another 45mg dose and they'll either get worse, or just continue on.

I'm due the next shot on October 17th, and i'm flying to Florida(first world problems i know) on October 28th, and i DON'T want to be feeling like this while i'm traveling, i don't want to risk having to go to a doctor/hospital while i'm there and ruining the trip for my wife.

I've been to my GP a few times, and i'm sure they think i'm blowing it out of the water and being a hypocondriac, they've given me anti inflammatories for my back, and some xanax for the anxiety(i haven't taken these, nor do i intend to). and my Derm thinks the symptoms will pass, and i shouldn't get them on my second shot.

What would YOU all do?

*EDIT* I forgot to mention that i got my bloods done recently(got the results last week) and they are 100% perfect, they are the exact same readings as i've had for many years...so i don't know what to do really.

brevity

I’d keep going. I have some tiredness and back pain too but I’m putting that to sitting at a desk all day, 2 hours in the car, doing **** all exercise and running around after a pregnant wife and a 3 year old. But you probably have a different schedule.

At then end of the day you have to weigh up the pros and cons. They might put you onto another drug or it might be biologics aren’t for you. My dermatologist said there are always options and these drugs aren’t cornflakes, they are serious stuff so if you’re not comfortable with them then speak up.

I’m sticking with the stelara anyways.

brevity

Also, can I have your Xanax?

Mountainsandh

eeloe wrote: »

Right, so....Stelara.

I'm due my next injection next Thursday.

For the last 3 weeks, i've been having some side effects, mainly extreme fatigue, nausea(not all the time) dizziness, back pain, head aches....

Been to my GP, and spoken to my derm, and they are all of the opinion they are expected side effects and they will pass. I'm worried that when i get another 45mg dose and they'll either get worse, or just continue on.

I'm due the next shot on October 17th, and i'm flying to Florida(first world problems i know) on October 28th, and i DON'T want to be feeling like this while i'm traveling, i don't want to risk having to go to a doctor/hospital while i'm there and ruining the trip for my wife.

I've been to my GP a few times, and i'm sure they think i'm blowing it out of the water and being a hypocondriac, they've given me anti inflammatories for my back, and some xanax for the anxiety(i haven't taken these, nor do i intend to). and my Derm thinks the symptoms will pass, and i shouldn't get them on my second shot.

What would YOU all do?

*EDIT* I forgot to mention that i got my bloods done recently(got the results last week) and they are 100% perfect, they are the exact same readings as i've had for many years...so i don't know what to do really.

Well, I haven't tried the injections, but in your situation I would go for the second dose.

America is the best place to get something to alleviate any of the ailments you've described above, and if it takes a firm over the counter medication counter attack to make your stay enjoyable, I'd just go for it.

It just seems like they have a lot of "better"/more potent over the counter choice over there, I don't think you'd need a doc ?

edit : I had to use a CVS pharmacist counter last year while there, and their advice was great.

jamesbondings

Just as an FYI. I heard on Newstalk today that there is a pop up stand in Dundrum Town centre from 9-4 this Saturday. They will have people there advising people how they can get some relief from this horrific affliction. I am lucky enough not to be directly affected by it but my sister has it so kept an ear out on the topic for her. Her head, god love her is terribly itchy and flaky and nothing thus far has helped,so I'll be sending her in!

Hope this helps someone.

eeloe

brevity wrote: »

I’d keep going. I have some tiredness and back pain too but I’m putting that to sitting at a desk all day, 2 hours in the car, doing **** all exercise and running around after a pregnant wife and a 3 year old. But you probably have a different schedule.

At then end of the day you have to weigh up the pros and cons. They might put you onto another drug or it might be biologics aren’t for you. My dermatologist said there are always options and these drugs aren’t cornflakes, they are serious stuff so if you’re not comfortable with them then speak up.

I’m sticking with the stelara anyways.

I’m gonna see how I go this week, and then make a decision.

My schedule is almost the same as yours lately, just without the pregnant wife or the 3 year old.

I may be just in a bit of a slump lately too which is making the side effects worse?

eeloe

Mountainsandh wrote: »

Well, I haven't tried the injections, but in your situation I would go for the second dose.

America is the best place to get something to alleviate any of the ailments you've described above, and if it takes a firm over the counter medication counter attack to make your stay enjoyable, I'd just go for it.

It just seems like they have a lot of "better"/more potent over the counter choice over there, I don't think you'd need a doc ?

edit : I had to use a CVS pharmacist counter last year while there, and their advice was great.

Thanks for that, at least I know I could always drop in to CVS or Walgreens for some advice....as I said in the post above, i’m gonna give it another week before I make a decision, surely 21 days is enough for the side effects to run their course? Hopefully i’ll Start feeling better tomorrow.

brevity

eeloe wrote: »

I may be just in a bit of a slump lately too which is making the side effects worse?

Yeah probably. Changing of the seasons and all that.

eeloe

Hopefully it is just that!

We’ll see, I guess!

Gael23

Brevity you took Humira before didnt you?

brevity

Gael23 wrote: »

Brevity you took Humira before didnt you?

Yup, sure did.

Gael23

brevity wrote: »

Yup, sure did.

How did you find the loading dose? I’m a little worried about it?

brevity

Gael23 wrote: »

How did you find the loading dose? I’m a little worried about it?

I didn’t notice too much wrong really. It’s two shots one after the other isn’t it?

For me, getting rid of the psoriasis was the priority. I could live with most side effects if it got rid of the psoriasis and especially the itching. Jesus Christ the itching. My legs were like they had been whipped raw when I was finished scratching.

I wouldn’t be too worried. Think of the positives.

sundodger5

what is the loading dose. i know they have a 80mg pen know so less needles if on a higher dose

Gael23

brevity wrote: »

I didn’t notice too much wrong really. It’s two shots one after the other isn’t it?

For me, getting rid of the psoriasis was the priority. I could live with most side effects if it got rid of the psoriasis and especially the itching. Jesus Christ the itching. My legs were like they had been whipped raw when I was finished scratching.

I wouldn’t be too worried. Think of the positives.

It’s Four shots. Mine are all 40mg pens

brevity

Gael23 wrote: »

It’s Four shots. Mine are all 40mg pens

Hmmm...I had 2x40mg. I’m sure they know what they are doing. They might be trying to get a head start on it. Was it Enbrel you were on before? Has the psoriasis come back stronger?

Gael23

brevity wrote: »

. They might be trying to get a head start on it. Was it Enbrel you were on before? Has the psoriasis come back stronger?

I’ve got Chrons Disease now as well and Enbrel doesn’t work for that. Psoriasis is doing good apart from a few hiccups every so often.

brevity

Gael23 wrote: »

I’ve got Chrons Disease now as well and Enbrel doesn’t work for that. Psoriasis is doing good apart from a few hiccups every so often.

Ahh now I remember. Must be the reason for the high dose so.

eeloe

I’m pretty sure the dose is doubled on most of the bios for chrons patients, I know Stelara is 90mg for chrons, i’m on the 45mh dose for just psoriasis.

sundodger5

For Hunira they definitely have an 80mg pen now. For that loading dose.

Gael23

eeloe wrote: »

I’m pretty sure the dose is doubled on most of the bios for chrons patients, I know Stelara is 90mg for chrons, i’m on the 45mh dose for just psoriasis.

We considered Stelara and the first dose is given by IV in hospital.

eeloe

Sorry yes, first is IV then the maintenance doses are 90mg!

Misguided1

Happy Monday folks!
Just back from my consultant so I'm coming off Stelara and going to try Humira.
Stelara didn't work at all for me. Psoriasis and arthritis much worse since I started it and then there's the itching......

First dose next week so hopefully this one works. Enbrel worked great until my Psoriasis started coming back.

eeloe

Best of luck with Humira!

Hopefully it works for you, and quickly.