Still haven’t been properly diagnosed. My next appointment with the Rheum is end Jan but she spoke to me on the phone after my MRI (I did hip only) and said I haven’t got anything to worry about - the MRI came up with possible sacroilitis - and told me to take Arcoxia 90 which is a NSAID for a month (my GP told me that this is dangerous to take long term). Anyway she didn’t seem to relate to my other symptoms - Achilles tendonitis, psoriasis of the nails, OA in hip and thumbs (came up on xray), very very mild guttate psoriasis .
All tests say mild but I can tell you the pain is not mild at all…especially in the morning, after sitting or standing for a long time.
I also told her that I was very tired all the time and she dismissed this as being irrelevant.
I am not sure whether to get a second opinion or wait to see if the NSAID helps.
Love to hear what you think
I started off with just and NSAID for a while too, until the fatigue was completely overwhelming. When I first presented to the rheumatologist it was with finger pain and swelling, and fatigue. It spread to pretty much everywhere, and within a year I was on my first DMARD.
Mild doesn’t necessarily refer to the amount of pain, but to number of joints involved, inflammation, etc. Being fatigued IS relevant.
In terms of a second opinion, it’s your right. I’ve had a few times when I’ve considered seeking a second opinion rheumy. After meeting the one that my husband saw twice, I’m not impressed. The longer that I’ve been with my rheumatologist the more respect I have for her. Personally, I would probably try the NSAID for a month and see what happens. You can always seek out a second opinion in a month or two if you still feel that this is a good option.
What does ‘you haven’t got anything to worry about’ mean? I haven’t really got anything to worry about in the grand scheme of things but I have got PsA. A little too non-specific for my liking, I’d be thinking ‘second opinion’ for sure.
Tiredness … irrelevant!!! That’s why I won’t call my fatigue ‘tiredness’. At the beginning I was too ‘tired’ to engage with anything or anyone unless it was absolutely necessary i.e. a rheumy appointment. Fatigue is a classic symptom of PsA, for many of us it’s the worst one.
Do you know how long you’ll have to wait for another appointment? If it’s a short period of time and she’s therefore keeping a watchful eye on you at this stage, that could, possibly, be encouraging. But if it’s a case of go forth & take NSAIDs for evermore I’d be wary.
Thanks Sybil and Stoney - I do have an appointment at end Jan so maybe I should give the NSAID a chance. Thanks for your input…its good to hear from people who understand.
By the way - are hot hands and hot feet part of this? Both my hands and feet often feel as they are burning but they are not hot when touched.
It is a sensation I often get & which I am pretty sure is associated with PsA. It could also be part of something else of course but you could do with a diagnosis.
End of January sounds pretty good relatively speaking so perhaps it is worth waiting. But while the NSAID may help with pain I just don’t understand how it could help clarify the picture. You may feel more comfortable but while a good response to steroids can help to nail a dx of inflammatory arthritis, NSAIDs don’t have that use as far as I know. Plus if you do have PsA NSAIDs won’t control the disease. If you do hang on until January I’d quiz her about why she’s prescribing them, or if at all possible could you email / write / phone to ask what the plan is, if any?
Hello again yael
As Sybil says, the NSAID may relieve some of your pain, but it’s not going to do anything for your PsA if that’s what you have. (And I’m no doc, but it sounds like you have a lot of PsA evidence to me.) I also have a problem with the rheum declaring your tiredness as irrelevant. I think it’s very relevant: for me, fatigue is often a better indicator of the state of my PsA than pain.
I think that if your doctor is diagnosing you or treating you in a way that doesn’t make sense to you, then you need to get a second opinion. It’s not a case of finding someone who agrees with what you think, it’s a case of your understanding why they are diagnosing or treating you as they are. From what you’ve said, there are too many things about your rheum’s approach which don’t make sense to you. Second opinion territory, I think!
Why wait until the end of January to start the process for getting a second opinion? If I were you, I’d be lining up a second opinion right now. It may take a few months to get the appointment. Meanwhile, if you see the rheum again and what she says, and her treatment plan, now make logical sense to you, the second opinion appointment can always be cancelled.
I will say that I waited far too long before I sought a second opinion. I had a rheumatologist who diagnosed my disease as mild, and who ran me through all of the DMARDs over the course of a year. None of them helped. I was frightened the whole time, because I was worried that my disease was worse than she thought. I restrained myself from seeking a second opinion, though, because she was qualified in rheumatology and I wasn’t. During the course of that year, my hips were so badly damaged that they needed replacement. At that point, I got angry and sought a second opinion. The second doctor explained why he thought my disease was severe, not mild. What he said made sense. If I had listened to my body, trusted my instincts, and gone to a rheumatologist who said things that made sense to me at the time, I’d be in a lot better shape today than I am. Live and learn.
You may be dealing with a brilliant Rheumie with zero patient skills. There are a lot of them out there. When he says things like mild moderate or severe describing your “arthritis” that has nothing to do with how you feel but rather with the number of joints that he can palpate, xray or otherwise chart as being effected. As Sybil said Fatigue is a classic symptom of PsA BUT it isn’t specific to PsA and isn’t part of the diagnostic criteria. So at this point it isn’t important to him. Most new PsA patients find this kind of honesty off putting some get used to it some don’t and others eventually figure it out.
What is part of it and something you should start tracking immediately is “morning stiffness” specifically how long it takes you to get moving in the morning. (Most of us have a wake up routine even with good meds) The other thing to keep track of is what exercise does to your symptoms.
ITs rare that there are personable Rheumies. Docs only become rheumies for one of two reasons, they couldn’t get “better” residency/ fellowship Or they love intellectual/diagnostic medicine. The former got into medical school because of reaswonably good grade and test scores and a great personality, the latter because of incredible skills. The two don’t often mix. Yes the NSAID is the first step in the process by all means take it and keep your Jan, appointment. 3 month or less appointments means he is VERY concerned something is going on.
BUT just in case he is a DUD, Seenie gives great advice. Make an appointment for a second opinion you can always cancel.
Wow - thanks so much. It really helps to hear what you all think and what you say makes so much sense. Yes I will take Seenie’s advice. I’ll let you know
Yael, the difference between you and those of us who are generous with our advice (or bossiness, depending on who you ask 
) is experience. Between us, we’ve been brushed off, blown off, misdiagnosed, convinced that we are JFN**, and hurt physically by this disease. We hate seeing other people learn the hard way, like we did!
Take very good care, and keep us in the loop!
Seenie
** Just Plain Nuts
Just ? Nuts? I saw an F in there.
The burning could be neuropathy. And I also want to ask, is the fatigue maybe sometimes a byproduct of all the pain? Sometimes I do think it’s an actual symptom, because for several years leading up to my pain I had so much fatigue. I honestly thought I had narcolepsy.
About the morning stiffness, yes, even with Enbrel working for me, I do have some stiffness in the morning and when I get up from sitting, but nowhere near as bad as it was before starting Enbrel. 
@Grandma_J - The fatigue can be a symptom of it’s own without pain. But yes, pain can also cause fatigue. I’ve struggled with fatigue for years, the kind where I need to lay down an hour after I’ve gotten out of bed, and then again a few hours later.
Oops, how did a “P” sneak in there?
I hope nobody (our own Grandma_J for example) is suggesting you could possibly be using profane words about something as innocuous as PsA. I mean, why would anyone do that? I certainly aspire to much higher standards and only swear about it Monday through to Sunday.
Hi guys! Love your humor!! Humor actually is the best way to deal with lots. Anyway just to update. The earliest second opinion appointment is the day before my regular Rheum Dr. appointment!! In the meantime I have decided to focus on other things and not just my aches and pains. I went on a NIA course. Nia is a technique using movement dance music and self-healing. It was amazing and during this week I had a lot less pain. I really recommend you look it up and give it a try if there is a class in your area. https://nianow.com/.
Seenie use profanity? Why would I ever suggest that? I imagine her to be a very sophisticated young lady, although she is excused whenever she’s describing PsA. It’s almost impossible to think about it, talk about it, or endure it without the use of bad words! And, Sybil, that big F word is so often the only word that works–it’s really a great stress reliever, isn’t it?!! (I just refrain from using it around the grandkids!)
Ha ha ha you’ve forgotten that I spent the last several years of my career working with troubled, high-needs adolescents. That did my vocabulary all kinds of good, not to mention my “general knowledge”. Those kids knew more about the seedy side of life than I was able to imagine. Learned a lot from them.
And now you’ve got us.
What a heartwarming thought.