Yes I am still on two plaqeunil and one solazopyrin. I should be on two solazopyrin but when I increased the dose I got terrible diarrhea
Good .... that could be a reason to try something else then! I know I'm sounding like I know stuff, I don't for sure. The clinical judgement of the professional should be paramount. It's just that they do seem to get it wrong, wrong, wrong sometimes hence this almighty battle you're going through. Oh let's hope the professionals come through for you.
Irishchick said:
Yes I am still on two plaqeunil and one solazopyrin. I should be on two solazopyrin but when I increased the dose I got terrible diarrhea
I’m a huge believer in respecting professions. I know he knows what he’s talking about it’s his job but I’m also a believer in listening.
I’ll do my best to put my case forward but they have this way of making you not want to question them.
I think, maybe, you need to stand in front of the mirror and practice asking the question "why do you think my symptoms and presentation are not consistent with psoriatic arthritis?"
If you have a clear understanding of the reasons they dismiss this as a diagnostic option then that will help you understand the direction they want to take this in.
Equally it is appropriate to ask for the exact reasons they think it is fibro or whatever. Ask them to explain the differential diagnosis they have performed in reaching their conclusion.
Even ask the rheumy to put it in writing .... if they do this to your GP anyway ask for a copy. It tends to focus their minds!
That’s a good idea. I’ll give myself a pep talk tomorrow
Fibro people have a collection of symptoms, but they are aall subjective. Swollen joints, sausage fingers or toes, redness and inflammation are NOT ever symptoms of fibro. Do you have the option of seeing another rheumatologist?
Irishchick said:
I have an appointment with the rhematologist on Wednesday to discuss the results. I don't know if that bit of uptake on the ankle will be enough?I am going to ask him though if the redness and swelling in my dip joints could be related in anyway to something else. I showed the pics to my GP and he said you don't get swelling and redness like that with fibro.
I just think I have too many other symptoms to rule out something else. If he really thinks I have fibro ( I still dont think I do unless fibro people can get pain solely in the joints?) then fine but there is also something else going on.
Sybil said:No way! Why the heck should a diagnosis of inflammatory arthritis rely on evidence of damage?? Others will tell me if I'm wrong, but I can't see that. The whole idea is to diagnose the damn thing before damage occurs.
You will be distraught right now I expect. You could, as an outside bet to my mind, have fibromyalgia and that could be treated effectively and you could get a whole lot better. But while you even suspect PsA please, please, when you've recovered from this setback, steel yourself to get a referral to the rheumy who has the best reputation in Ireland.
We're here, right? Many of us have experienced despair .... and unexpected turn arounds in terms of great medical care and considerable improvement. Don't give up now.
Irishchick said:I'm home. The technician said there wasn't much on it :'( A tiny bit of uptake on the ankle which they xrayed but he said it was barley enough to warrant an xray.
I just know that's the end of the road for me now. I'll be slapped with a fibro diagnosis and that'll be that. :'(
I'm really upset I was just hoping so much for an answer. My fingers are so sore I was sure they'd show something but no.
Sybil said:Good luck, thinking of you - keep us posted!
Not privately at the minute the last round of tests wiped my savings. On the public list the waiting list to see another rheumatologist would be at least a year and possibly closer to two.
Oh good lord. That is a really long time. It's almost too bad that you don't have skin problems; dermatologists will often prescribe biologics for that, and it might be easier to see one. You must be so frustrated!
Irishchick said:
Not privately at the minute the last round of tests wiped my savings. On the public list the waiting list to see another rheumatologist would be at least a year and possibly closer to two.
I know. My mom and brother have bad psoriasis. I have had some suspicious spots but nothing solid. They looks like psoriasis but unlike my mom and brother mine go as quick as they come with a little cortisone cream.
I do get an awful rash around my mouth and fingers though. My nails also have horizontal ridges, some yellow staining and recently some mild pitting in my nails
Oh dear Oh dear, Irishchick. I'm so sorry. But when the going gets tough, the tough get going. So let's make a list.
- Parent and sibling with severe psoriasis (apparently the sibling is the more significant)
- Transient unidentified rashes on face and fingers
- Ridging, staining and pitting of nails, mild but detectable
- Pain bad enough to stop a 28 year old from working, driving, and activities of daily living (and she wants to do all), and to have caused a hospital admission
- Painful hands and feet
- Hip pain and x-rays that show an abnormality of some kind
- Sausage toe
- Negative for rheumatoid factor, inflammatory markers in the normal range
- Symptoms alleviated by prednisone
- Absence of classic FM pressure points
OK, I don't know what that adds up to, other than a pretty long list of things that don't add up to fibromyalgia.
IChick, Your GP is now going to be your strongest ally in sorting this mess out. And it is a mess. I'm sorry that this has happened to you, but rest assured that many of us have met similar resistance, except that at the time we did not realize that we were being fobbed off. Please don't give up, and please keep us in the loop.
You deserve so much better than to be suffering and having doctors messing around with you like this.
Irishchick, I've got some literature somewhere that I'm going to try and find for you tomorrow when I can get on my desktop ... 2:00am in bed on a tablet when I can't sleep limits what I can find lol.
Thanks for all of your support I really appreciate it. I'm sycking myself up big time for tomorrow. Someone told me to make a list like you have seenie and give it to him. I'm going to do that and use your list seenie.
I'm not leaving his office tomorrow without having this out with him lol
Irishchick, absolutely that list is a brilliant starting point. Here is the link to some reference material that may be helpful in making sure your list is as complete as possible http://www.uptodate.com/contents/psoriatic-arthritis-beyond-the-basics?source=related_link
I always make sure I take all my reference material with me so that if I'm challenged I can whip it out and say "here, look, this is what I get/have/reason I think ...." etc etc. It has served me well to turn up at my appointments with a copy of Drs Gladman & Chandran's books that I lay on my lap. It sends a clear message that I am informed and I'm getting informed by the worlds most expert doctors in this disease.
And remember. if he says it's not PsA then you have to push for him to give you the detailed explanation as to why.
Do you have anyone who could go with you to the appointment (your mum/brother with their psoriasis even)? I've noticed that the doctors who try to run roughshod over us and our questions are less likely to do it when there is someone else with us ... the companion doesn't have to participate unless you want them to but just having them sitting there can alter the dynamic of the consultation significantly. It can also be helpful if you are trying to get across quite how debilitated you are to actually have someone else there who can express it from their perspective of seeing you every day.
I do so hope it goes well for you. I'll be thinking of you.
Thanks for hat link, very helpful. I think my symptoms match that list in the article very well. I brought my mother in with me before and she told him that I had no quality of life and that I was dependent on her a lot. I don't know of he paid any heed to her but I will try it again.
Before I have always been too intimidated to question consultants but not anymore.
Jules G said:
Irishchick, absolutely that list is a brilliant starting point. Here is the link to some reference material that may be helpful in making sure your list is as complete as possible http://www.uptodate.com/contents/psoriatic-arthritis-beyond-the-bas...
I always make sure I take all my reference material with me so that if I'm challenged I can whip it out and say "here, look, this is what I get/have/reason I think ...." etc etc. It has served me well to turn up at my appointments with a copy of Drs Gladman & Chandran's books that I lay on my lap. It sends a clear message that I am informed and I'm getting informed by the worlds most expert doctors in this disease.
And remember. if he says it's not PsA then you have to push for him to give you the detailed explanation as to why.
Do you have anyone who could go with you to the appointment (your mum/brother with their psoriasis even)? I've noticed that the doctors who try to run roughshod over us and our questions are less likely to do it when there is someone else with us ... the companion doesn't have to participate unless you want them to but just having them sitting there can alter the dynamic of the consultation significantly. It can also be helpful if you are trying to get across quite how debilitated you are to actually have someone else there who can express it from their perspective of seeing you every day.
I do so hope it goes well for you. I'll be thinking of you.
Take no prisoners Irishchick. Your health and well-being is MUCH more important than the bruised ego of a "specialist."
Irishchick, this may seem strange, but how is your digestive system?
I get IBS every now and then. I take spasmanol when it gets bad but If I avoid very fatty foods then I'm usually fine except for the very odd bout. It hasn't affected me in quite a while
Seenie said:
Irishchick, this may seem strange, but how is your digestive system?
Ok then add that to your list. IBS is one of the things that comes with PsA
OK I will thanks
Seenie said:
Ok then add that to your list. IBS is one of the things that comes with PsA
Just wondering if butt pain is also part of PSA? I always feel like I am sitting on my bones so I have to sit on two cushions on my computer chair?