New diagnosis of psoriatic arthritis

[JohnB]

Hi Nancy and a warm welcome to our club it is so good you found us.

Wow you have been through the wringer. It takes a special person to go through all that and still work as a nurse.
Fortunately I can comment on the Otezla .

Oh the weight loss . . . . . I wish no such luck. I was rather hoping - I could do to lose a few tens of pounds, this working from home doesn't help the waistline.
I did suffer from loose to very loose stools for around the first 14 weeks or so, before returning to normal.
I also had a few dull 'cant be bothered to take any paracetamol' headaches for the first few weeks. I can imagine wearing full PPE for 12 hours wont help with those.
I also had a bout of very mild nausea for the second week once I had gone on to the full dosage.
I can't say I have had depression though, it's not something I  have ever suffered from fortunately.

So does it work? For me yes. After some of the unpleasant side effects I have suffered from on other medications, this is a breeze. It did take an awful long time to kick in though. I was just starting to see substantial clearance when I had to stop for medical reasons for a fortnight recently and most of the hard work was undone in the first week. So I have been back on it for a fortnight and my PS has started to pink up and thin out. All in all I'm very happy with it.

If you have any questions please don't hesitate to ask, non of us bite . I'll be hiding in a cold dark corner in the Bar

JohnB

[Wooley]

Welcome Nancy.....

Sounds like you have had a rough few years.....

I also can't comment on Otezla, but can totally sympathize with you re the menopause!!  I too had cancer a few years ago now and having chemo sent me straight into menopause - I was 39   luckily for me it didn't treat me too bad.... the worst thing were hot flashes, but like you I was going through so many things related to this, in the way of medication/treatment etc, I couldn't pin any symptoms to anything in particular (menopause or medication or both). 

Huge thanks for all you do as a RN, I take my hat off to you.

Enjoy the club and welcome again...
 

Wooley

[Roadrunner]

Thank you everyone for the wonderful and warm welcome!!  I'm thinking  I have found my people!  I'm sorry I haven't replied to your posts until now.  I have had a few hard days (depression?...feeling sorry for myself...who knows?) but a good husband and a good friend helped me through it. And then, of course, I had to get back to work and put my best face on!  My patients and coworkers have enough to deal with, during all of this pandemic madness, without  me losing my mind! I am definately  in the mindset right now of just doing the best I can, day by day. 

To answer the RN question, yes it is Registered Nurse.  It is so interesting to learn other terms used, in other countries!   

The Otezla does seem to be working.  The psoriasis has cleared up very well on my scalp. My GI system is still not too happy with me but it does seem to be leveling off and the headaches have thankfully stopped. I am not noticing too much of a difference yet in the joints and pain in the bottom of the feet. But I will faithfully keep up with it. I do see my dermatologist later this month and I will be discussing all of this with her.  Have any of you gone onto seeing a rheumatologist? I am thinking that I probably should make that my next step.

I was really hoping the weight loss would be a noticeable side effect!   But I know better than that.  I know I am going to have to do the hard work on that one.     I'm just hoping that between the high cortisol levels and the menopause, it won't be too much of a battle!  

Thanks again for listening and for being so welcoming!  I will have to peruse this site more so that I get comfier with it. 

Take care!

[Fred]

You are welcome, we are just people like you with psoriasis. Some come and go and some almost live here, but yes you will find a friendly bunch ................................ if not let us know and we will soon look into it.

Re depression: We have a dedicated thread for our members should you ever need it here [Group Specific]

What does GI mean ?

Rheumatologist: Yes I have seen one twice and my personal opinion is they don't have a clue about psoriatic arthritis, plus they can't or won't prescribe much more than poison methotrexate. I found that department of no help whatsoever.

Yes do dive in on the members only boards you will find a lot to take your mind off things, if it's not there feel free to start something.

[Roadrunner]

Hi Fred!

Please forgive me, I tend to abbreviate alot of things (blame the job!)  
GI is gastrointestinal.  And mine wasn't very happy but I think its starting to like  me again! 

I will definately check out the other boards!

And thank you for giving me info on the rheumatologist question.  It will save me some steps I think.  Do you all primarily see your dermatologist for psa?

Thanks again!

[Kat]

Different people, different experiences as I too have seen a Rheumatologist who I felt was very knowledgeable about psoriatic arthritis! So I think that's an individual choice and also depends on who you are seeing and your confidence level in them. I'm sure you know better than most (being an RN) that some doctors are better than others.

There's a ton of info on this thread, which makes it a great place to be. Also a friendly group of people always willing to answer any questions that they can. Sometimes our opinions differ but that also is one of the things that makes it a great place!

Welcome again Nancy and hang in there!

[Fred]

Hi Fred!

Please forgive me, I tend to abbreviate alot of things (blame the job!)  
GI is gastrointestinal.  And mine wasn't very happy but I think its starting to like  me again! 

I will definately check out the other boards!

And thank you for giving me info on the rheumatologist question.  It will save me some steps I think.  Do you all primarily see your dermatologist for psa?

Thanks again!

No need to apologize Nancy, I'm and old bloke and don't use text speak, I also find some American abbreviations don't match my Franglais. 

Most with psoriatic arthritis have been referred to a rheumatologist at some point, most say they are not much help. But you don't have to take my word for it and I'm sure others may have a different view ................ See Kat's post before this one.

But again don't hesitate to start a new thread in Psoriasis And Psoriatic Arthritis Topics to ask the question if you wish.

[Caroline]

Hi Nancy,

So many people, so many experiences.
Also here in the Netherlands, I have heard very different opinions with other people with Psoriatic Arthritis over here.
The natural reflex of virtually every rheumatologist is to give MTX, that is because he/she mostly equals Psoriatic Arthritis with rheumatic arthritis, but... it is quite something different, as you can “prove” that RA is RA because of markers in the blood. On the other hand you cannot do that with Psoriatic Arthritis, because that is not detectable by markers in the blood.

Yes, MTX may work, it is a strong suppressor, but there is research that says that in fact it works badly for Psoriatic Arthritis. I am with Fred and also have been prescribed MTX by my rheumatologist. After only a few months I have quit it... I did not want that anymore.

[Roadrunner]

Thank you Kat and Caroline for responding!  You are correct Kat, I am unfortunately too aware of the good docs vs the not so good docs.  My dermatologists are excellent and I do trust them explicitly. So I am sure I will be following their lead in this and they haven't mentioned seeing a rheumatologist yet.  And thank you Caroline for the heads up on the MTX. With my being a newbie on this, I am barely out of the gate as far as learning about all of the different therapies.  A coworker told me the other day that her sister in law wanted to treat her psa holistically so she shaved her head, applied liberal amount of olive oil to her scalp and sat in the sun every day.....I think I am going to skip that one!   

[Caroline]

Can imagine that Nancy... but it is not totally weird, at least the part of sitting in the sun.

When doing that your skin is making vitamin D, which is very good.
I personally do take an extra supplement of vit D, and I think it makes a difference to have a measurable value of that that is somewhat above the average. My previous doctor, an internist, has also prescribed that.
Why an internist, or specialist on internal diseases?
Well... that is obvious.. Psoriasis is not a skin disease, but an system disease, so in fact a team of doctors, derm, rheum, but certainly an expert on the metabolism should be involved. At least that is what I think of it.

Sleep well, at least I am going to