Thank you Sybil. I’ve never really considered myself to have severe PsA as
I see others at hospital that look so much worse. I was pretty bad at the
start with my hands and wrists and my right leg especially - crushing pain
and disablement. My GP gave me prednisolone for five days at high dose and
it was like a miracle! Then I had a ‘steroid flare’. I had two more 5 day
steroids courses to help with pain and mobility but as soon as the five
days ended each time I flared really badly. I waited almost five weeks for
a hospital appointment despite being referred urgently by my GP, but I’ve
since heard that’s quick! My first appointment in Rheumatology I was
wheeled in unable to walk more than a couple of steps. I was given
Methotrexate and a kenalog injection plus a steroid injection directly into
my right knee. Within a couple of days I could walk again. I consider
myself lucky. I believe my consultant offered me the trial because they’re
both biologics that are known and already used, and he knows I want to help
too. We have a really good relationship and I know he will do his best for
me.
Hi Katie,
I looked at your Art Page and your work is beautiful! You must be busy! And, the pics of your hand–ouch!!! It looks swollen. I also have drawn in the past and keep telling myself I need to get back to it–I stopped when my hands were sore–most of my work is in pencil and colored pencil of faces (mostly) and I wasn’t enjoying drawing anymore because my hands and fingers were stiff and sore…since I’ve been on Enbrel they feel better, but I gained 5 grandkids in the past 2-1/2 years so I’m really busy with family and my part-time jobs.
It was fun looking at your work–you are very talented and I’m following your page. I know another artist here, and that’s Sybil…she’s really good, too, but IDK if she has a facebook page. Sybil, are you present? Will you share some of your work? I think we have a section on this site on Hobbies or Art, but I haven’t really looked at it…there are probably many more talented artists among us!!!
So glad you found this and you have such a positive attitude! I really don’t know how you continued drawing/painting with your hand in so much pain. Makes me feel really wimpy!!!
Ahh thank you for the lovely comments about my artwork, that means a lot.
I’ve only managed three paintings in the last six months but hoping to
get back into it asap- it’s my therapy. I’ve found fatigue to be the
biggest obstacle!
My hands aren’t swollen at the moment, not like the photos anyway. They’ve
just sort of gone thin and twisted looking now! Very peculiar!
You really should go back to drawing ️ as it’s such a good way to
de-stress, but it sounds as if your hands are pretty full right now! I keep
busy as it helps my state of mind. I’m quite a positive person on the whole
and very spiritually minded (not religious!!) but I still have my moments
of depression like everyone else! And you’re NOT wimpy!! ️
I guess I was lying about the section on Hobbies/Art…I thought we had one, but maybe that was before the website was changed.
Yes, drawing or any hobby, for that matter, is good for de-stressing. I was off in another world while I drew! I know it’s good for my health.
Sorry your hands look twisted. My right wrist curves weirdly, the left one not so much. They used to be so stiff and sore—constant tendinitis before I went on Enbrel—it’s unreal the damage taking place while the pain is active
I tried to take a pic of it but I’m not sure this will work. It doesn’t look bad, but I know it looks different than it used to. My hands have washed a lot of dishes and scrubbed a lot of floors, so they’re very old-looking!
I was always a positive person although I do worry. My motto is it’s good to be a little pessimistic because when things turn out good it’s a pleasant surprise and you’re never disappointed because you didn’t rely on a positive outcome in the first place! It works for me! LOL
Wow! You’re sooo like me! I think we’d get on well if we met. Your hand looks quite a lot like mine! My right side is worst too. And oh boy I’ve done some hard graft in my time too. ‘Experienced’ hands eh? Character, not age. I’m 66 and my hands look it, I’m fortunate with good genes as far as wrinkles on my face are concerned though.
I’m a worrier too - I could worry for Britain!! But I try to stay as positive as I can - my blood group is B+, so I make my mantra for life ‘Be Positive’. Doesn’t always work ha ha!!
Several of us here have met in person, and it’s amazing how well we seem to get on. The odd thing is, meeting in person feels like meeting a very good old friend. Everyone LWPsA member who I’ve met in person is pretty much exactly as I’d imagined them to be. (But better, 'cuz you can hug them.)
I think of you guys as my BFFs…I can’t talk to my family, my coworkers or my friends here at home like I can talk to you about my concerns and it does me so much good! We have an understanding of each other that can’t be matched, even (for myself anyway) with my rheumatologist!
So many people here have listened to me rant and whine and worry and maybe it gets old, but nobody has told me I complain too much. I don’t have any support from my husband and I don’t want to worry my kids and grandkids so I try not to bring up my “issues” to them too often. My one daughter has told me it’s so hard to see me get old and that just breaks my heart. I know she means well, but I had hoped to stay young like my parents until my 80s, but at 64 I see myself how my parents were at 80! I can be depressing.
So Katie, nzbee, Sheila, Nancy–all you newbies within the past couple of weeks (if I missed anyone I apologize because I have a crappy memory)–stick around! This is a great place for the support and reassurance you need!
And, I also wish I could meet everyone! I wish we could have a “re-union”. I don’t have a passport (yet) so we’d have to do it in America!
Hi again @nzbee, I had a hunt around online and found the pharmac guidelines for Enbrel here: http://www.pharmac.govt.nz/2018/01/01/SA1620.pdf
Have a look at page 5 of the document to find the process (all the boxes to tick) for approval.
Going back to my earlier post, yes the prednisone can come into it too, IF you are like me and don’t have high inflammatory markers, 3 months+ on over 5mg daily, plus 2 DMARDs, plus enough joints swollen… etc… etc…
Don’t despair though… from what I have read there are ways around those requirements if your rheumy feels it is necessary to get you onto a biologic (perhaps the need to be able to continue your work might come into it).
All the best with your next rheumy appt… do go armed with all the questions you can think of…
Ahhh… I see you are in the South Island… I love it down there… hope to get down there again sometime!! I lived in Oamaru for about 3 years some years back and just loved it!!
Hi, Thanks so much for that. I am now in the process of weaning off the prednisone which I am glad to be doing. Once that is done I need to see what the sulfasalazine is doing by itself. Fingers crossed
Hi Jen,
So now I am doing the prednisone wean. Did you feel like you had the shakes? and kind of wired at times?. I have dropped from 7.5mg daily to 5mg daily, this is the biggest drop I will have, it will be 1mg per month from here. Thanks for your help,
I felt like I was very weak all the time (shaky, rather than shaking), exhausted, generally low mood (like something bad was about to happen - all the time), and a lot of headaches.
I had started Enbrel by the time I weaned off of prednisone - so my joint pain had just about disappeared, but whilst weaning of prednisone I had random muscle aches replace it!
Don’t forget I was on it for 9 months though - it really is more severe the longer you take it for - I have had a couple of sessions with it (both before and after that 9 month stint) which were around 3 weeks, and though uncomfortable at times (usually just because the PsA symptoms were returning), I really didn’t feel anywhere near as bad tapering off the shorter scripts (mostly a headache would signal I was trying to go too fast).
Though I did want to confirm what you said - it was 1mg per month taper - is that right? I don’t have any expertise in this area, though my target was 1mg per week (perhaps thats why it was so damn horrible - though I did really want to get off it). I had a few times (going from 5 to 4, and again from 2 to 1) where I had to take two weeks to lower the one mg. My taper started at an average of 10-12 per day.
Maybe one of the other members can help suggest why our prescribed tapers seem so different?
With regard to feeling wired, well, hopefully that is your very own cortisol switching back on (and possibly over-estimating how much to make until all your hormones get re-established), because feeling wired is usually something more prednisone (or cortisol) makes you feel.
Its a great question and I’d be interested in hearing what other members experiences are with steroid tapers after being on them for a while
Hi nzbee, Im in Chch and have recently joined the site as well. Looks like we will get lots of helpful advice here. Ive had PsA for quite a few years but didnt know what it was, other than aches and pains that Id put done to the age thing. Ive not been prescribed anything but anti-inflammatories at this stage. Rheumy wants to wait another 6 months and will recheck. I’ve always been really active my whole life and have struggled with accepting there are things I can’t do now. My hands and ankles are prety painful and its a mission simply getting out of bed some mornings.
That is very hard to accept…the new normal, I guess. IDK about you, but I get a little twinge of envy when I see people my age jogging or even going for a “walk”. But then I realize that at 64 there are lots of people in worse shape than me and lots of people suffering or dying at a much younger age than me. I think it all balances out, but it sure would be nice to experience life without a chronic inflammatory disease!
I get where you are coming from as an active person, it drives you nuts when you can’t do things at your usual pace. I have been diagnosed since August 2017 as having inflammatory arthritis, possibly psoriatic.
I have done the trial of anti- inflammatories too, mine was 3 months and I found no difference. I then got a rheumatology appointment and started prednisone and sulfasalazine. I am now at the stage of weaning off the prednisone and waiting to see how good the sulfasalazine will be by itself. The difference once I started the meds was really great, no more painful feet and hip joints and no more sore ligaments. Also a let up in the fatigue, I hear you on the mission getting up.
I really hope you find the anti inflammatories help, but if not that you can start some other meds on your next rheumatology visit.
Hi GJ,
Yes I know what you’re saying. I’m 63 but feel 90 some days. Once I’m moving around things get a bit better but the first couple of hours each day…ouch!!
My back has been giving me grief for a good while whereas it was mostly in my feet. Left hand fingers swollen and sore and as I’m strictly a leftie I find that hard to cope with most days. Things like turning off taps, opening jars etc…poor old long-suffering husband has to do those things for me. He never complains though and is a real gem.
Hi fellow Cantab… I will jot that med down Sulfasalazine and ask rheumy about it when I see her next. What are the side effects of it, do you know? I guess they all have them, sadly.
Hot day today yeah? Not that I’m complaining, I hate the winter😰
I’m on sulfasalazine. I was lucky as it gave me no side effects. But those are feeling very nauseous, sick etc. They build you up to taking 4 tablets at day. On that it helped but not enough, so after three months they put me on 6 tablets a day and that works so much better. So for now that’s where I am. Hope this helps.
Hey there MillieB! If you key “sulfasalazine” into the search feature (magnifying glass to left of your avatar upper right) you’ll hit a great thread. SSZ is one of the milder of the DMARDs, as well as being one of the ones that isn’t exactly a stellar performer.
I hate winter too. Here, that’s NOW. LOL I’ve often thought that we should have house pairing between hemispheres: we’ll just swap lives every six months.
but hoping to
️ as it’s such a good way to
️
