Referral to rheumatology came through... for two weeks from now!!

[araorun]

Hey all, 

thanks so much for supporting me and following me through this hell I've been going through with the severe flare-up of my plaques and the edema. I'm on my sixth day of a gigantic predinisone burst and it's helping very much to clear up the immediate problem, although i am having about every side effect in the world (retaining enough water for a third-world country, insomnia, etc.) 

I had gotten a call from the local referral center Monday morning around 9, and I had phoned my PCP around 820 before work to inform him of the issue and ask for a topical steroid that my insurance would cover (and perhaps a diuretic). The referral center told me even with an urgent referral, the doctor they were going to call my PCP to get me scheduled with wasn't seeing anyone til June. Great, i thought... i'll finish this awful round of sugar-raising, dehydrating prednisone and by the time the appointment happens, it may start flaring up again and i'll be back in misery, hopefully not in the ER getting put back on 47 prednisones in 10 days! 

yesterday, i got home and I had a letter from my PCP's office. Two days after I called them, they had sent this letter and it already reached me. Rheumatology referral made and appointment scheduled for... wait for it... March 28!! that's less than 2 weeks from now... and i told my boss, she's been watching me struggle with the prednisone dose and everything so she completely understands i have to go. it's still going to possibly upset the company owners, but they can't deny the referral order. SO RELIEVED!!! 

i also talked to a coworker and she told me that asparagus is a natural diuretic, and a local store has it on sale for $.98/lb, so I'm going to be buying myself a big bunch of asparagus to roast and eat the next few days. i literally drink nothing but water all day long but only go to the bathroom a couple of times... i have moon face, i hate the side fx but i have to say it did help with the immediate issue in a huge way. sooooo glad i'm going to rheumatology in 14 days!!!!

[Fred]

That's good news araorun. Fingers crossed you get some answers.

We grow our own asparagus it's a welcome treat for the early growing season. I would suggest steaming it rather than roasting it as sometimes roasting can destroy some plant benefits. *I'm not an expert though so enjoy it as you like but for me it's steamed with a knob of butter. Yum.

Good luck with your appointment.

[jiml]

Good to hear araorum. It looks as if they realise that urgent in your case was really urgent and have squeezed you in in very good time ....I hope you can get rid of some of the fluid you are retaining ...thank goodness your boss is understanding and realises that if you get a good treatment it will control the psoriasis

Dandelion ( we used to call it wet the bed when I was young)!and parsley are good natural diuretics you can get dandelion root from a health food stores ....how you take it I don't know but you can find out by googling it it might help a bit

The asparagus if you eat a lot don't be alarmed if your wee is tinted green

Good luck
Jim

[Turnedlight]

That is a relief, not long to wait then. I was going to suggest dandelion as well, or ‘piddle-the-bed’ (presumably medieval families learnt the hard way when they gave the kids a dandelion salad for tea!) asparagus is nicer though!

[araorun]

I appreciate all the feedback... i didn't buy any dandelion because I've been eating asparagus every night and it helps. also i am starting my taper on prednisone as of yesterday, so I'm really glad i'm seeing rheumatology sooner than later. the sores are much improved and not painful or itchy, but i still have some edema and i still have to put cover up on my upper arms to wear a 3/4 length shirt. 

anybody here see a rheumatologist for their psoriasis? Any advice on how I should approach my 1st appointment? you guys have been so helpful... wish I'd reached out years ago. been noticing improvement also with the coconut oil, as far as healing... way better than vaseline!

[Grizzly Bear]

Good morning Ara,

Thank you for your write up, most interesting indeed

Here in the uk, I have seen a rheumatologist but unfortunately for me, I explained my finger joints hurt like hell when my psoriasis flares up on my body and my nails are pitted etc and my fingers hurt.
The twaddle he came out with literally put me to sleep coma.

Fred mentioned that those whom are in rheumatology don’t seem to understand about psoriatic arthritis etc.


Glad to see the coconut oil working, that’s fantastic news Ara.

As for dandelions, try horse apples

Horse apples are tasty

BIG hugs for Ara

[Bill]

Really nice to see you getting yourself out of a rut. I couldn't suggest anything beyond telling the rheumatologist the importance for you of keeping your job and your fear that psa may spoil this life goal for you.

Cheers

[Fred]

anybody here see a rheumatologist for their psoriasis? Any advice on how I should approach my 1st appointment?

I been sent twice to rheumatology for psoriatic arthritis. But they don't have a clue and will only prescribe anti inflammatory or methotrexate. Your health system may be different to mine  but I don't see how a rheumatologist is going to help as they no nothing about psoriasis and have never trained in it. Hopefully I'm wrong and they do indeed know about psoriasis, but here they are useless.

I'm with Bill, I would tell them how important it is for you to be able to keep your job. Also fill in a copy of Dermatology Life Quality Index (DLQI) and take it with you.

Good luck.

[Caroline]

anybody here see a rheumatologist for their psoriasis? Any advice on how I should approach my 1st appointment?

I been sent twice to rheumatology for psoriatic arthritis. But they don't have a clue and will only prescribe anti inflammatory or methotrexate. Your health system may be different to mine  but I don't see how a rheumatologist is going to help as they no nothing about psoriasis and have never trained in it. Hopefully I'm wrong and they do indeed know about psoriasis, but here they are useless.

I'm with Bill, I would tell them how important it is for you to be able to keep your job. Also fill in a copy of Dermatology Life Quality Index (DLQI) and take it with you.

Good luck.

Same for me here.
I have been to a rheumatologist long time ago. His, a Belgian rheum, diagnose was correct. Later on his colleague prescribed MTX (methotrexate), pure garbage, what I found out in a few months.
I stopped, went to another doctor, and got DMF.
Nowadays over here in the Netherlands, rheumatologists still prescribe MTX, while in the guidelines and pharmacological compass of the dermatologists, DMF is now the first in line. Unfortunately a good acquaintance of mine, who suffers from PsA, went from the derm who prescribed DMF to the rheum and yes... their standard reflex is MTX. So she is now on MTX and I am very worried.  
The say that everyone has to go their own way, but well you can learn from experience, unfortunately they don’t listen to me, but to the doctor. Normally that makes sense but not always... you can read that on this forum.
You have Psoriasis, go to a dermatologist.

This is my view. You can nuance it a little and of course go to the rheumatologist. The answer will be MTX. It certainly may work for you, but because of your other problems I would try it shortly to control your situation and perhaps have a next appointment to a derm and get something different.

[araorun]

So I got voicemails today... I couldn't answer b/c my demanding job and restrictive cell  phone use... Had a voicemail AT&T wouldn't let me retrieve so I had to just count on the recording.Apparently she called form another number a few days ago and left a message I couldn't retrieve. She says she's from the rheumatologist and "Dr.M" doesn't treat that type of disease... then says something like "sorry" and another referral... Dr. M isn't even the doc my appointment is with. It's Dr. A D, a woman. I called immediately after spending hours fixing this phone issue, and left a quite detailed message at 830 p.m. telling her this came from the Er, then minor med, then PCP. I have two autoimmune diseases and just stopped the prednizone burst today and two days ago noticed the edema and psoriasis flaring back up and said I don't know who Dr. M is, but I'm having problems retrieving voicemails, but please call me ASAP. If I cant get into a specialist I will end up back in the ER, and that's a guarantee. 

i need all the thoughts, good karma, prayers, energy, whatever right now.. the fact my PCP and my insurance worked so fast to get me the emergency referral SUCH A RELIEF. I'm now scared it's gotten screwed up. I hope, hope, hope she calls and this will not delay treatment. Plaques started recurring on last two days of taper and edema. My ex called 911 Saturday because I bottomed out with glucose below 20 because I apparently overdosed my insulin, and just started the taper. That was bad--woke to EMTs pumping me full of sugar with my 7yr-old watching. 

 i just need this to work out. i am so glad i have you all because this is just an embarrassing and physically, emotionally and socially debilitating problem now.

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Edit by Fred: Doctors names removed.