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Living with Psoriatic Arthritis (PsA)

Today's the day!


#21

@DougE thank you for your encouragement. I think in time and with the right meds, I’ll get to a new normal. But yes, I believe I’ve been in a flare for months. I’ve been having pain, swelling, aches, etc from my head to my toes. I have good days and bad days. Lately the bad days have been more often than the good days tho. On a bad day, I stay home and can do little. I can’t cook, clean and even getting a shower is so draining of any energy I did have that I have to take a nap. When I do have a good day, and go to town, people ask where I’ve been. I tell them I’ve been hiding out. Lol
So yes I do know what you’re talking about.


#22

Yes, fatigue is horrible with this. I hate to say, unless you go into remission it will only get worse. You’ve got a long road ahead of you to get used to your new normal. I’ve been in a flare up since February '18. One thing I can suggest is to get into a study. Go to the NIH - National Institute of Health website and see if there are any openings for PSA studies. I am in one myself for PSA and Heart Disease. They test you very thoroughly and you go back once per year for 10 years. The docs at NIH will take very good care of you AND work with your current medical team to share what they find. It’s helped me with almost 7 weeks of peace since February and believe me though it doesn’t sound like much time, if I didn’t have that little bit of relief I would be looney with pain. Make sure you have a safety network of people you can rely on and Good luck on the journey. It’s not an easy one.


#23

@DougE hey hun. Yes I only thought I was tired before this pesky disease! For sure! And yes it’s gotten worse little bit at a time. Just walking to our mailbox drains me, when that is that I have enough energy to walk that far. (We live in the country and have a long driveway.) I was "diagnosed in about 2004 but never seen a rheumatologist before and didn’t have much problems until after I had a hysterectomy Feb 7th this year. I guess surgery pissed off my body cause since then if it isn’t one thing, it’s 3 or 4.
I’ll check out the website. I haven’t had a formal diagnosis from a rheumatologist yet. Just getting started on it. Praying he’ll tell me in September what’s going on with me for certain.
Yes pain relief and some energy would be the most wonderful thing!! Thanks and Hope yours continues.


#24

Prayers for you, hang on in there, you’re not alone…


#25

Hey all. Thanks for all the information and well wishes. My tests results and xrays results are online. I can’t make sense of them. I asked Dr goggle but that didn’t really help. Most were normal or within range. RDW was high at 15. Chloride was low at 100 glucose was high at 101. B12 was >1500 but wasn’t indicated that it’s high or low CRP was <0.5 no idea what all that means. Dr Google’s explanation just made me worry. So I’m just going to wait for the appointment in Sept or them to call me to come in early.
If any of y’all know what these results could mean, please let me know. Maybe it will ease my mind. Thanks in advance. God bless.


#26

Hey AngieB, I’m in Australia, so they report blood tests a bit differently, but usually if they report a “<“ or “>” then it means you are within range, the range for health just being below or above a certain amount.

The others are done in different units in the US and Australia, so I can’t provide any useful info, but hopefully someone else will chime in. They are usually part of a bigger picture though, so to really get an answer you need to see your doc - most of us have one or two out of range from time to time, and that’s not always meaningful.


#27

Hi @AngieB, if you phone your rheumy’s office they should be able to tell you over the phone what the results mean… that might put your mind at rest, or at least give you the opportunity to sort out a list of questions ready for your Sept. appt.
Failing the rheumy’s office, does your GP get those results too? One of the nurses there might be able to explain them to you.
I always get a little anxious waiting for results (or finding out what they mean), and find it really helpful to have the results explained :slight_smile:
Best of luck!!!


#28

Update on meds. I couldn’t take it. Felt no difference honestly. It increased my headaches and acid reflux. Doctor agreed with me and stop it. We’ll see what he tries today.


#29

Hey y’all. Haven’t updated in this post in a while. From reading the notes from the PA from yesterday’s visit, it seems they (the doc and the PAs) don’t think I have PsA.
Here are her visit notes.

SUMMARY FOR VISIT : 10/16/2018

Visit Date:10/16/2018 with Tracy Creed, FNP
Notes:

  • Tapering round of prednsione. If no response. Reccomend cymbalta.
    B12 and TSH normal. Check on status of EMG
    No synovitis or dacylitis on exam. I suspect OA/ fibromyalgia. However, want to rule out inflammatory arthritis. Provide a tapering round of prednisone 3 tabs daily X 5 days, then two tabs daily X 5 days then one tab daily X 5 days then return in 3 weeks. If she responds may consider DMARD. If not or minimal response, consider a dryg like cymbalta.
    Xrays reviewed of lumbar spine. May benefit from cymbalta in the future.

But at least she said she wants to rule out inflammatory arthritis first. I guess the ANA test will decide that?? I’ll update when I get the results.
Hope and prayers with y’all for a good pain free day and night!


#30

ANA is pretty specific to lupus. It’s just one more thing to rule out. While they may suspect something other than psa they want to try prednisone first to see your response. Fibromyalgia won’t respond to prednisone.


#31

Oh ok. Thank you @Stoney! I wasn’t sure what the ANA test was for. I was thinking just another test for inflammation of sorts. Well I took my first dose earlier today and actually feeling a bit better already. More energy and hips and lower back are not hurting as bad as usual from getting up from a sitting position. But Idk if it is real or imagined really. Maybe just so hopeful of improvement. Does that make any sense??

Oh neurologist office called to schedule appointment already! Thank God!! Nov. 19th for the nerve conduction test. But she said it’s going to be only on my arms and hands. But really need em to check my back and neck too tho. I’ll ask them about it at my appointment, I guess. But at least got appointment scheduled.


#32

I quite like that little summary … the fact that 3 different conditions are being considered shows she has her thinking cap on.

That does make sense. But as time goes by you’ll have a much better idea of whether or not the steroids are really helping.


#33

Got ANA test results

F Antinuclear Antibodies, IFA Positive A TA
- Negative <1:80
- Borderline 1:80
- Positive >1:80
Homogeneous Pattern TA
Nucleolar Pattern TA

|F|Speckled Pattern|1:640 H|TA|

||Centromere Pattern||TA|
||Spindle Apparatus Pattern||TA|
||Nuclear Membrane Pattern||TA|
||Midbody Pattern||TA|
||Nuclear Dot Pattern||TA|
||PCNA Pattern||TA|
||Centriole Pattern||TA|
|F|Note:||TA|
|- A positive ANA result may occur in healthy individuals (low|
|- titer) or be associated with a variety of diseases. See|
|- interpretation chart which is not all inclusive:|
|- .|
|- Pattern Antigen Detected Suggested Disease Association|
|- ----------- ---------------- -----------------------------|
|- Homogeneous DNA(ds,ss), SLE - High titers|
|- Nucleosomes,|
|- Histones Drug-induced SLE|
|- ----------- ---------------- -----------------------------|
|- Speckled Sm, RNP, SCL-70, SLE,MCTD,PSS (diffuse form),|
|- SS-A/SS-B Sjogrens|
|- ----------- ---------------- -----------------------------|
|- Nucleolar SCL-70, PM-1/SCL High titers Scleroderma,|
|- PM/DM|
|- ----------- ---------------- -----------------------------|
|- Centromere Centromere PSS (limited form) w/Crest|
|- syndrome variable|
|- ----------- ---------------- -----------------------------|
|- Nuclear Dot Sp100,p80-coilin Primary Biliary Cirrhosis|
|- ----------- ---------------- -----------------------------|
|- Nuclear GP210, Primary Biliary Cirrhosis|
|- Membrane lamin A,B,C|
|- ----------- ---------------- -----------------------------||
|


#34

I was having a hard time reading this. Interpretation? Did you test positive for lupus?


#35

Hey @Stoney. Sorry about that. But didn’t think it would be that hard to read but man, I can’t make heads or tails of what I copied and pasted.
Antinuclear Antibodies, IFA Positive
Speckled Pattern|1:640 H|

from what I gathered is yes it’s positive result but it doesn’t necessarily mean I have lupus. Doctor notes that I will have more blood tests to determine whether it is lupus or something else. But from what I got from researching the results, it’s a good possibility it’s lupus instead of PsA. Or maybe in addition to PsA. Prednisone is working somewhat. But Idk what that means. I go back on the 8th of Nov.


#36

Hi Angie, sounds like you have a pretty good handle on it (ie in that the test result doesn’t rule out Lupus). Keep updating us!


#37

Hey @Jen75 thank you. I will keep y’all updated.
Feeling pretty horrible this morning. I’m so ready to KNOW for sure what is going to with me. But this test proves to the doubters that it is NOT in my head. Thank God! But kinda sad and scared about it too. The waiting, the unknown is hard for me.


#38

Gosh I hate that sort of ‘waiting’ too Angie. But at least 8 Nov isn’t horridly far away. Big hugs.


#39

Thank you @Poo_therapy. Yeah it will be here before know it. Hugs back. Having muscle pain and spasms horribly last night and now woke up with it too. Praying for all of us!


#40

From what you describe there, I’m wondering if it is fibro. Not that I’d know, just that you set a few little bells ringing. We have a family member who has been to hell and back with fibro … that’s the bad news. The good news though - there would seem to be quite a few new strategies for managing it and wowzer, she is doing so well these days. ‘Well’ as in she’s got her life back and then some!

Keep praying if that helps, but also keep in mind that there are some very good treatments and management strategies for all the conditions which are currently being considered. Unless you are superwoman, there probably will be occasions when you start thinking (for the millionth time!) that it is all in your head. Or when others imply that and bring you down. But it is not and your doctor knows it is not. That alone is a massive step forward. You’re doing brilliantly the way you’re ploughing through this process.

Oh dear, I feel a hug coming on! What’s happening to me lol!