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Living with Psoriatic Arthritis (PsA)

Feeling Frustrated in the dreaded Gap


#21

Thanks Grandma_J!! No worries about losing the reply, these things happen :smile:

I’m sure we are not the only ones who are unsupported by those around us… thank goodness for this forum, you have all helped me in so many ways, mostly to maintain some modicum of sanity… errmmmm… well… I’d like to think I’m still mostly sane :laughing:

Yep, I try to hang on to the idea each step through the meds is one step closer to getting something that works, or at least helps, sometimes it gets a bit tough to keep chin up though… a break from it, for even a few days would nice… ah, well, such is life I guess.


#22

I’m a great tantrum person. I throw them very judiciously though but boy do they work when I do. I’m fairly brutal when doing so too.

Janson that’s an awful big gap. A far too big gap. Throw the tantrum and we’ll all be here to catch you after. Honestly. Huge hugs.


#23

Awww… thanks Poo!! And, yep, tantrums can be very productive… I do tend to throw fairly quiet ones, but I need to do so when I’m “on form”, otherwise I just end up bloody crying and that doesn’t usually prove very effective lol I’m just one of those people who cries as an emotional response to almost anything, happy, sad, angry, frustrated etc etc… geezzz I wish I could control that better :laughing:

Yeah, it sure is feeling like an awful big gap, and I have to admit I’ve had about enough of it… could really do with some decent relief about now, although I have had response to some of the meds, mostly it has been minimal response to date (to everything except prednisone).

Still working through the try this/try that stage I guess, frustrating… but will let you know how I get on if I do throw a doozy trantrum :laughing:


#24

I’m a total cry baby too. Truly. And totally lose it in tears when in a tantrum too. But I tend to throw the tears at the person I’m having the tantrum with as well. As in now ‘look at what you made me do as well?’ And none of my tantrums are at all quiet either. They happen rarely but once out of the box, they usually get the desired response. I start off icy cool and ready to do ‘murder’ with words and by the end I’m in tears though. But I use those tears too.

I don’t know, I must be in something of a mood today as I’m posting on here telling everyone to have a ‘go’ given things are not happening for many of you. I must be coming across as some crazed Irish woman presently. Honestly I’m not, (I am Irish though) but truly we have this awful disease, is it really too much to actually be treated effectively for it without enduring years’ of ‘gaps’ or being asked to reprove our disease yet again?

I’ll step off my soapbox now, promise. :confused:


#25

You stay right up there on your soapbox Poo!! You are quite right with everything you have said, it is absolutely absurd the “systems” and “protocols” people have to work through to get anywhere, with anything these days… more should join you on that soapbox, it might help to make a difference.

Thank you for your support!! It’s nice to know you are there!!

Oh, and by the way… I have little Irish blood running through my veins, add that with the half that is scottish, and oh, boy, can that give an interesting tantrum :laughing:


#27

I haven’t been able to keep up on all the discussions, so I’m wondering if the increase of Leflunamide has helped any? Like you said, hopefully it’ll get you one step closer to a biologic!
Back to your earlier comment, too, about your son—my kids all have small signs of either psoriasis or weird aches and pains, but the 3 oldest are in denial it’s anything autoimmune. They get the genes from my side and my husband’s—his dad and a couple brothers had psoriasis. And it’s sketchy as to whether or not my husband has either PsA or RA. My son has had weird patches of flaky skin since he was in high school (he’s 38 now). His doctor has always said it’s dermatitis, but ruled out psoriasis…I asked him if he mentioned his mom has psoriasis! Nope! Two older daughters have trouble with unusual aches and pains that seem to come out of nowhere…the youngest daughter is the only one who constantly tells me she aches all over, is extremely fatigued all the time, and of course this causes depression…she’s going to mention all of it in her upcoming physical…I told her to get it in her chart so if her complaints continue or increase, it’ll be documented in the first place. I really do worry about my kids and grandkids—if there was a way I could take it all on myself so they wouldn’t have to, I would!!!

I’m sure you worry, too…I think it’s part of a mom’s makeup. I hope you’re doing better if the increase of Leflunamide has happened!


#28

Hi Grandma_J :slight_smile: Yes, the increase in Lef. has happened, no noticeable benefits or SE’s from yet… I didn’t really expect it would kick in too quickly, my understanding is it takes about a month for it to build up in your system anyways. When I first went on the half dose I thought it was helping, but I guess that was just wishful thinking :laughing: I am still hoping it might help my spine some (apparently Lef can be OK for spinal involvement), if my spine does show some signs improvement that might prove that at least some of that has been coming from the PsA, which could mean hope for a more positive outcome there… only time will tell I guess.

Yes, we do worry about kids/grandkids, that’s only natural… I’ve had just one child (my son) and no grandchildren yet… and if he is having aches/pains he hasn’t said anything to me yet… my sister on the other hand has many of the same aches and pains as I do… since I started this journey with docs and rheumy’s she has brushed a lot of my joint issues as “normal” for our age… it has taken a lot to convince her to tell her doc about her aches and pains (constantly reminding her that he can’t do anything for it if he doesn’t know it’s going on)… yes, it is important to have those aches/pains etc recorded, to help build up the whole picture… I keep hanging on to the hope that if I can get some effective treatment and she can see the difference it makes in my life, maybe that will be enough to convince her to push a little harder too. Only time will tell if that happens or not.

At least with us having been diagnosed it might make for a faster route to diagnosis and treatment for our family members when they start to show symptoms (if they do) and will maybe save them years of misdiagnosis, like a lot of us seem to have had.

I suppose we all live in hope that our children/grandchildren/family members will be spared from any real nasties in their lives, unfortunately life just isn’t always that kind, so perhaps the best we can hope is that they will learn/benefit from our experiences.


#29

It’s funny, janson, now that you mention your sister in denial I realized my sister is the same way. I don’t talk with her about my PsA symptoms, partly because she’d say something like, oh I’d never think of that as some kind of disease. When I started having all sorts of symptoms and my doctor told me I had PsA, I started looking for info online. She says she’d never do that. We both have heart disease, her’s is worse because she had an actual heart attack at 51 and she has several stents to my one. She just doesn’t worry like I do. She’s had weird skin problems on her hands—to me it looked like pustular psoriasis but her doctor said it was allergies. Oh and she’s had itchy, flaky scalp which her doctor says is something else. IDK how long her back has been stiff—she finally started seeing a chiropractor for that. I wonder how long it would take her to ask her doctor if she could have PsA? If her nails start putting I’m going to insist in her telling the doctor about my PsA so they can at least consider it!
Ugh, I’m falling asleep while writing this…


#30

Someone liked this post and then I realized I forgot to clear up that I actually meant 2-4… any pain that’s constantly nagging you is horrible! Much more then you imagine even when you are having the pain… it drains your energy!


#31

@Sybil posted this response on this thread, but it doesn’t seem to be showing up (I got it in an email) so I will copy and paste it here:
Sybil said:
I’m not sure about tantrums. On the rare occasions I lose it I don’t have an ‘Off’ button. I believe I’m a bit Irish too, quite a lot maybe, but I don’t think that’s the reason lol.

Nearly 20 years ago my husband was wrongly diagnosed with an inoperable brain tumour following a stroke at the wheel of his car. It was all very confusing plus we were rather immature for 30 somethings I guess, disinterested in medical stuff and recently married. We took little notice of anything.

As soon as he’d recovered enough, off we went on holiday with strict instructions from doctors that I had to do all the driving. Whilst being forced by me to traipse round IKEA he had another stroke and became nearly blind.

He told me to drive him back to the hospital in our home town a couple of hundred miles away ASAP. Once there, he parked his backside in the relevant department and refused to budge until he’d had a brain scan. Possibly that was the day we grew up, well he did anyway. He was an awesomely polite squatter, prepared to sit there forever.

He got what he wanted and his obstinacy led to a correct dx. I’m not like him but what I took from that incident is that it’s vital to identify what we want and need from the health service and then to pursue that end with dogged determination. With PsA that’s a tough call. PsA symptoms and their impact on us aren’t as clear cut as sudden blindness. I think the beauty of this site though is that it helps us work out what we can reasonably expect. I reckon nearly 2 years of NSAIDs and DMARDs is enough Janson. If the protocols require another couple of months then so be it, but in your shoes I’d want to know that biologics are definitely the next step and I’d want to know which biologic was being considered too. Knowing that a definite plan of action is in place is therapeutic in itself.

Gosh, @Sybil did your husband recover his vision? I ask because I had a small stroke a couple of years ago that has left me without approx 1/4 of my visual field (initailly I lost 1/2 my visual field)… I guess I was lucky in the sense that it was only my vision that was affected (but that means I am no longer able to drive)… It was disorienting enough at age 54, I cannot imagine how that would be for someone who was only 30 something.

Yes, I have got to the point where I feel I have had enough of this wait and see game… my next rheumy appt is in mid March, I think I will be standing my ground a little stronger than I have to date… in the meantime if I have any new issues crop up I will definitely be contacting the rheumy nurse for advice, at least that way things should get recorded too. I tend to feel there has been a bit of mucking around in my case due to having seen different rheumy’s each time too, locums etc, perhaps now having the registrar sort of taking over my case I may get more of a continuum of care… I think there has been a bit of question over whether or not this was inflammatory arthritis, let alone PsA, but I think that was resolved at my last appt at least to a definite inflammatory arthritis.

I am aware that the first biologic may not prove to work either… but am pretty keen to at least give it a try.


#32

Yes @Cynthia, you are right… constant pain is draining… sometimes I think I’d just love to get a couple of hours break from it… I think I have forgotten what it is like to not have pain.


#33

@Grandma_J, I guess it will be interesting to see how our sisters react if they ever get diagnosed with PsA too… It might be nice to think it might help them to understand more of what we go through, but it probably won’t work like that… I’ve heard people say “but yours couldn’t possibly be as bad as this or you wouldn’t be able to do xxx” over many different things over the years, very rarely will people say anything along the lines of “gosh, now I understand, I’m sorry I didn’t get it earlier”… ah well… such is the way of things I guess…

The most important thing is they do get a point where their issues are diagnosed and treated appropriately.


#34

Trust me it’s worse when the pain comes back later… I seem to only notice that I had a break when it comes back… I cleaned 2 drawers of hobby stuff yesterday and my body hurts now! (I wondered where I got the energy I guess it was just left because it wasn’t drained by pain)


#35

@Cynthia… yes I do understand what you are saying… Good for you cleaning out some drawers… I’ve got heaps of cupboards and draws that need sorting out… I get short bursts where the fatigue lets up just a little and I seem to get stuff done, but it is soo short lived that I don’t seem to be able to get on top of all the chores that need doing lol


#36

Yeah it’s really annoying! When I noticed my energy was gone I was in the middle with everything still on the floor and on Clemens’ desk so I still had to put everything away… I bought a truckload of hobby stuff (someone died and they sold everything she had in 1 big sale) together with Clemens’ sister so I need more space! Haha