Thank you all too for sharing, the information I have gleaned from sifting through your posts has been invaluable.
Preliminary diagnosis is PsA (from GP), after developing stiff-ish (mild pain) ankles in March last year, then hands and wrists started too. I already had mild OA in both hips. Now shoulders, elbows, knees and feet have joined the party too. I feel very fortunate to have mostly mild pain levels, and very lucky to have stumbled on (not literally) a GP who suspected PsA as soon as I mentioned psoriasis (which is only mild too).
For me the biggest issue is the incredible fatigue.
I am grateful for the low pain levels and lack of xray/blood āevidenceā, and thankful for a GP who was willing to throw some methotrexate at it despite not having a diagnosis from a rheumy, it seems to have reduced the fatigue (a little) if not the pain
Rheumy now seems to agree with GP (although with some reservations I think)
Keeping positive (at least with a diagnosis there is hope of successful treatment).
I hope you are all feeling as well as you can be today!!!
Hi, welcome!
that is fortunate to get a early Dx on the disease, a lot of people can wait 10 years to get a Dx. then it is kind of late for the poor joints. You sound a lot like me, mild Ps, not very visible, the fatigue is a big problem. A lot of Rheumyās tag on Fibro to the Dx, but I think fatigue is primarily PsA. My tech who used to do ultrasound imaging with me, would find enthesis inflammation, one of the primary mechanisms with PsA, and chuckle when I told him, they were calling it fibroā¦ Not to say that a Fibro Dx does not have a place as a real disease, it is just the lazy doctor is fast to Dx you with that, then case closed.
Are you just starting treatment with DMARDās or are you still on NSAIDās?
Hi Jon, thanks for the welcome!!
Hmmmā¦ not sooo sure the Dx was as early at it sounds, although the lack of damage on xrays it may be so, looking back I suspect I may have been dealing with this since I was a teenager (at least 40 years), have had back problems and varying levels of fatigue since about age 15. Still, am grateful for lack of bone erosions
Yes, I think it is enthesitis in my elbows at least.
Still taking Mtx and tilcotil (since October last year), although needed to reduce Mtx due to some pretty nasty mouth ulcers after last increase ā¦ disappointing especially as it did seem reduce the fatigue and I was losing weight on it too lol
Havenāt had any u/s done as yet, they donāt seem to do them here (unless you are able to pay for them lol)
Yes, the fibro thing seems to be an easy Dx often, (no way to prove or disprove it) I was lucky, rheumy says that I have no signs of chronic pain syndromes (I think fibro fits into that category).
I hope you are keeping as well as you can!! Cheers!!!
Oops, well you sounded so young on the first post!
MTX didnāt seem to help me much, Remicade seems to be helping with my fatigue, but it comes and goes, so hard to gauge!
Good luck!
Awwwā¦ itās nice to know at least I sound young
Sorry to hear you have yet to have good luck with meds!! I do hope they come up with something that works well for you soon!!!
Good luck to you too!!! The fatigue certainly interferes with my life more than the pain does, so I understand that all too well
Hi Janson,
My PsA started slowly like yours and also, looking back, fatigue was a problem for me at least 15 years ago (not in my teens or middle age, but in my late 40s for sure) which was about 5 years before my internist sent me to a rheumy and 6 years before I was diagnosed with PsAā¦like you, the pain was mild for a long time.
Beware, it seems the damage shows up laterāI think more damage showed up in this body after I started Enbrel 3 years ago! I felt cruddy all over before I started Enbrel, but now my pain is more concentrated in my damaged feet and lower back (which I honestly didnāt think were too damaged when I started Enbrel, and judging from how good Enbrel made me feel at first I had no idea what was lurking!).
It sounds like Mtx is helping you, but has your rheumy discussed biologics with you? Iām not sure, but I think my damage-and pain-would be a lot worse if I hadnāt started Enbrel when I did.
Hi Grandma_J, thank you for your response, most appreciated!
Yes, I have been concerned about how quick the damage can go once it starts, which is why I asked my doc for something more aggressive by way of treatment when something doesnāt seem to have worked, and I realise the Mtx wonāt stop damage from starting but it is a requirement to try it before going on biologics here. I havenāt asked rhuemy about biologics yet, will see how the next appointment goes, I think that should be next month, just waiting to get the letter in the post I am hoping my ārealā rhuemy will be there this time, so far I have seen locums lol
When I hear the stories of some of the PsA folk on the forum my heart goes out to them (you too), and I feel like such a wimp, as my pain levels seem to be so light in comparison, I know the tilcotil does help keep the pain down though, only have miss one and the next day my body reminds me to take it lol
As far as know no damage yet, unless since last x-rays (it is 15 years since my back was looked at)ā¦ a little osteo in spine, hips and knees has me wondering if it might be secondary though.
I have been doing heaps of dr google over the last year or so and thought I had a bit of a handle on how this can go, but āmeetingā all of you I realise I really had no idea.
Iāll be keeping in touch, but trying not rant and rave too often hahaha
Thanks again, was lovely to hear from you!!!
Hi Poo_therapy, from what I understand it can take years for damage to start, or it can start really quickly, but once it starts it seems it can run rampant pretty quickly (in some cases)ā¦ I guess like a lot of things the progression can be a bit of a mixed bagā¦ trying very hard to be the eternal optimist, I keep hanging on to the hope that if we can hit this hard enough with the right meds I might be able to keep the damage from starting for as long as possible, I guess only time will tell.
When I had my first scans there was no / not much damage, and as I got onto DMARDs and then to biologics fast, Iām very optimistic there still isnāt much.
Iāve had not much in the way of scanning since then, but as on good days I have almost full function and little to no pain, I remain very hopeful that It will remain the case for some time to come . Hopefully as diagnoses get earlier and earlier, that is the outcome for more.
HI Jen75, they donāt seem to do the scans here, or at least they havenāt for me yet, I can only go on x-ray results at this point, a little disappointing as I understand that damage needs be getting along before it might show in x-rayā¦
Iām not sure at what stage they will/might offer biologics here but I āthinkā you have to have tried 2 DMARDS or have erosions already showing on x-raysā¦ hopefully I will find out more at my next rhuemy appointment (I think sometime next month).
Awwwā¦ full function and little to no pain sounds a bit like such a long way off for me right now lol (but I do remain hopeful, and I guess the benefit I have had from Mtx makes it seem not quite so impossible I am thrilled to hear that is where you have been able to get and genuinely hope that continues (and improves enough to have you feeling completely back to ānormalā) for you!! It helps to boost the hope to hear such promising results thank you soo very much for sharing that!!!
I had to effectively demand a scan, it was only of my hand (not my worst joints), and I still paid a lot out of pocket for it (hence I havenāt had them redone yet). I only ever had X-rays of my back.
At my worst, which was about 6 weeks after major onset (Iād had 2 years of niggles by then), the inflammation in my back was so bad my feet and legs started to go numb (it was scary, but hey, at least they didnāt hurt ).
So, although it seems a long way off, you have both the right, and good reason, to be hopeful for a return to most function and little pain
Hi again Jen75
Thank you for clarifying that!! Yes, I guess you can get scans here if you are able to pay for them lol I have a feeling they are not covered in our āsystemā.
Awwwā¦ numb feet and legs would be VERY scary!!! I certainly donāt envy anyone that!!!
Iād like to think I have been lucky to have what appears to be a slow onset PsA, hmmā¦ although maybe a severe onset would mean getting stronger treatments sorted out a lot quicker, not that I would wish it on anyone!!
Thank you for your support, it is most appreciated!!!
Keep as well as you can and enjoy the good in every day!!!
hay janson,
im a kiwi too,your not the only one.
i donāt have supportive words of wisdom for you as this thing has got meā¦well you know.
kia kaha anyways mate.
Hi there randomā¦ I didnāt realise you were from NZ tooā¦ I donāt really expect supportive words of wisdom, itās just nice to know we are not alone in this
Oh yeahā¦ I know how this thing can āget youāā¦ what medications are you on? and how are your symptoms doing?
Kia kaha back to you!!
sulphasalizine and 5mgs prednisone,symptoms are back in a low level way,they fluctuate day to day,prednisone didnāt agree with me mentally at 20 mgs which i was on initially,but it did stop the pains in their track,im at about the 8 week mark with the sulpha,so waiting to see if its working,the prednisone is not something that i want to be taking much longer,i will stop soon i think.then i will know if sulpha is working or not for sureā¦like you i havnāt had anything done in terms of an MRI scan ā¦just some initial x-rays that were done when the flare up landed me in hospital.Initially i thought i was getting good treatment but as i learn more im not so sure.I donāt have much faith in our system here.
I can understand not wanting to stay on prednisone for too long, it can be pretty rough for someā¦ hereās hoping the sulphasalizine has kicked in and prednisone wonāt be necessary for you. But yes, prednisone is the only thing that controls my pain and fatigue levels sufficiently for me to function fairly well, at this stageā¦ and I only get 10 days worth occasionally lol.
Yep, our system, is not the bestā¦ hmmā¦ I wonder if it is good anywhere these daysā¦ I wouldnāt be too worried about not getting scans, from what I can see they miss some stuff too (like enthesitis). It seems āgetting it rightā with PsA is a bit of a trial and error, hit and miss type thingā¦ on a good note though, there is always hope of something working for youā¦ more than can be said for some health conditions.
Take care and keep in touch!! Best of luck with beating the beast
Kia kaha
ā¦ disappointing especially as it did seem reduce the fatigue and I was losing weight on it too lol
. Hopefully as diagnoses get earlier and earlier, that is the outcome for more.
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