I’ve tried… I really have… really hard too… to be a patient patient while working through trials of different meds since March 2016… but I must admit the latest flare, which started a couple of days ago and has meant worsening of pain in feet, ankles, knees, hips, shoulders, elbows, wrists and hands, despite all the meds (currently Tilcotil (with omeprazole), Mtx (with folic acid), amitriptyline, and the latest addition 10mg Leflunomide), has really pushed me to the edge of my tolerance.
Oh, and add to that the fatigue that has me barely functioning at any level.
Sooo… I rang the rheumy nurse and asked if it might be OK to increase the Leflunomide to the full 20mgs… given that I’ve had no noticeable benefits or side effects from a month at 10mgs… and yep… that’s OK as long as I get monthly bloods done on time to keep an eye on liver function and keep a close eye on BP… which I will do.
I’m hoping increasing the Leflunomide will prove to be beneficial, but if not at least it will get me one step closer to maybe getting a biologic to try… well… hopefully!!
I know (and understand) the need to go through “the process”, that doesn’t make it any easier though… and to be fair, I’m getting close to throwing my toys out of the cot and packing a real tantrum… fortunately not something I do too regularly
Thanks Cynthia… yep… it sure feels pretty drawn out… I do keep my fingers crossed that the “thing” to help is just around the corner, and each time we try something new I do so with a hopeful heart… but it is getting harder just now… I’ll get over myself, I always do
Cynthia is right Janson, that is one big gap! Maybe it actually is time to think about some well-placed tantrum-like behavior, if you think it might get you to those biologics?
I know that often when I think I’m throwing a tantrum, others don’t even notice that I’m upset… they just think I’m unusually persistent about something they don’t think is a big deal
Hi ya Jen75… yep… I’m seriously thinking that maybe a wee tantrum might be in order I guess I’ll need to at least give the full Leflunomide dose a decent try before I go jumping up and down… at least phoning the nurse today has got me on the full dose a couple of months ahead of my next rheumy appt. (March 16th apparently lol), which if I hadn’t spoken up today I would have had to wait for before increasing the Lef lol
My biggest problem with throwing a tantrum is I’m sure I just get looked at as a crazy person… so instead I’m more inclined to just sit back and not say too much… ahh… but I’m getting to the point where “enough is enough already” lol
I even told the nurse today that “I’ve had enough” lol
It’s sad but it really works when you throw a tantrum… then suddenly people will be like “ooh your in pain! Why didn’t you say so!” When you’ve been saying “I’m in pain” on repeat for ages…
You are right Cynthia, it is sad that it becomes necessary to throw a tantrum before your reality gets noticed (even by those who should understand that reality already).
I’ve counted myself fairly lucky that my pain levels from the PsA have been mostly fairly mild… but maybe that is not such a blessing after all… I don’t know… it would just be nice to get some real relief for a change.
I’d trade short bursts of 8-9 pain up to a couple times a day for constant 4-5 pain without thinking… Especially because you can still do things and you feel like a failure if you don’t… it’s exhausting! To be constantly in pain!
Yes, I know what you are saying… I’ve had constant pain/stiffness in my ankles since March 2016… the only relief I’ve had from that was 4 days when I was on 40mg of prednisone (for asthma)… the pain level is mostly pretty low (maybe a 2 or 3 most of the time, sometimes up around a 5), it’s the consistency of it that wears me out I think… I can still do most things, most of the time, in very short bursts, but the fatigue really knocks me, so I don’t really function at all. The meds have reduced my need for 4-5 hours daytime sleep every day to now where I mostly need only 1/2-1 hour, and can go a couple of days without a day sleep… a small improvement for which I remain grateful
I also try to hang on to knowing that things could be a lot worse, and try to remain positive, just every now and then it gets on top of me some… as I say… I’ll get over my current self-pity party It does help to know you guys understand!! Thank you again!!!
I wouldn’t call this a pity party… it’s necessary to look at how things are going… and when it’s not good of course you’re not happy about it! This"party" got you on the higher dose of leflunomide in stead of waiting until march! I really hope this will work! But if it doesn’t maybe you will be ready for the next step in march instead of June!
Of course it’s not something to wallow around in for ever… but it’s not a bad thing
Hey janson—your situation sounds a lot like mine was…when I was diagnosed, the pain wasn’t really bad enough for me to justify taking meds (other than a few OTC pain meds occasionally). But over several years, the pain increased and spread to many joints, as yours has…fingers, wrists, elbows, shoulders—continuing on down my back to my feet. Only a couple prednisone bursts made me feel better for a short time. You mentioned usual pain being a 2-3 on the pain scale…when that’s ALL the TIME it wears on you! It’s something you can push past but feel totally wiped out at the end of the day (or really throughout the day because the crushing fatigue never stops, either!)…
It’s looking better and better for you to get on a biologic! I hope soon and I hope you have good and fast results like I did!
Thanks Grandma_J!! Yes, my back is a problem too… that’s been an issue for many years, so not sure if it’s part of the PsA or and old injury or two… I’ve been 17+ years with constant pain there, it varies in intensity, but never goes away. As the years have gone by shoulders, hips and knees jumped on the band wagon too… but it was always put down as Osteo, overuse, etc etc it wasn’t until the ankles and feet started in March 2016 then the hands and wrists a month later that the dots started to get joined up.
For many years I have been pretty conservative about taking meds for anything (probably due mostly to a lot of allergies etc) but right about now I’m ready to start screaming “what else can we throw at this thing?” whether a biologic is the answer for me or not I guess can only be determined by trialing one, I’m only hoping that when we get to that stage there is some benefit from it, and fairly quickly too… I’m tired of this roller coaster ride of hope and disappointment… so will need to find a way to curb that hope a little, while not giving up on it completely… at the moment I’m starting to question the value of any of the meds I’m taking right now, I will keep on taking them though, at least until I see the rheumy again in March and see where we can go from there… who knows, by then the meds might have started to do some good
I had a terrible fear of biologics and then when I finally sucked it up and decided to go on Enbrel I was afraid it wouldn’t work anyway and then it’d be a hopeless situation…I really am lucky it worked so well for me. At the time I said it was miraculous!!! But, after awhile the damage I got from not treating my PsA for so many years started giving me trouble in my back and feet…I still feel lucky, though—I feel tons better than I did before Enbrel and I’m being careful to avoid any further injury or stress to the places that are damaged.
This is unrelated sort of, but my husband mentioned to me today he saw an ad about Enbrel that claimed it cures PsA. I told him he’s mistaken—nothing cures PsA and you can expect it won’t be 100% effective. Then I realized he said that because he thinks I’m fibbing about the pain and weakness in my feet/legs!!! He’s probably the most unsympathetic person in earth and for some reason he doesn’t acknowledge any of my suffering, but he sure expects everyone to feel sorry for him. Sorry, it made me mad that he said said that like as if I’m lying about my feet…
I hope in March your rheumatologist is ready to try a biologic.
Grandma_J, what a frustrating situation! That attitude is not just unhelpful, it is unacceptable (unless he is hiding medical and pharmaceutical degrees and a career specialising in PsA!!).
Perhaps you need to tell him you have found something that cures his lack of sympathy… [insert imaginative cure here]
Oh gosh Grandma_J… I know what you mean about people not being supportive… I don’t have a husband so don’t have that worry… but my Mum, Sis, and Son really just don’t get it…
I know they all mean well (although sometimes I do wonder about that too lol)… but it really surprises me sometimes at how cutting they can be especially when:
Mum has joint issues too, which I suspect have probably been from PsA too, but she was told years ago it’s all Osteo, and she’s hanging on to that diagnosis (rightly or wrongly)… she was also told years ago by a skin specialist that she had dermatitis/eczema and is sticking to that too… If I mention anything about joint pain, or anything, she just goes “oh, everyone has that” or “get over yourself” or her other favourite “what’s the matter with you now?”… all said with a very cutting edge to her voice… I try to make allowances for her as we believe she has early stage to moderate dementia… but it is still hard to not take those comments personally at times… especially when it is constant lol
My Sister: has many of the same issues I do, and has wicked psoriasis on her scalp too, she moans and groans about her aches and scalp all the time, but when I as much as mention anything she always says I’m a hypochondriac… hmm… but I am pleased to report that she has finally started to mention her aches and pains to her doc and has started a trial of celebrex… it doesn’t seem to be helping her yet, but I hope she will persist and push to try something further or for a rheumy appt/diagnosis. We will see.
Even when my voice went croaky neither of them “could hear it”, it was all my imagination (funny how 3 GPs heard it straight up lol) and mum was shocked when I told her I was off to an ENT to have a camera down my throat to check it… incredulous would be a better word for her reaction, even after I told her they had to rule out cancer lol
3. My son at age 33 just doesn’t want to know, even though I have explained to him that this can have a genetic component… He is already showing ridges in his finger and toe nails (which is exactly how my nail involvement started). I guess at 33 he still thinks he’s invincible lol
Because of these reactions I tend not to say too much, it’s just not worth making myself feel worse than I already do… Oh, please understand, I do try not to “complain” as such, and rarely moan or groan, but even just trying to discuss any of it brings about a harsh response… mostly it’s better to just not say a word lol
There’s no sympathy around here , not that I want sympathy at all, a minutiae of understanding would be nice for a change though
I doubt if my March appointment will be the start of a biologic, that will be only 2 months on the full Lef. dose and I’m pretty sure it needs to be 3 months, then probably another 3 months with prednisone added (according to the protocol that needs to be followed here), but at least by then I will be nearly one step closer. Grrr… I can be extremely patient with some things, but this would be enough to try the patience of even the most patient person I think.
I am so sorry that your husband isn’t more supportive… perhaps the next time he has any issues you could point out his behaviour by saying something along the lines of “perhaps I should respond to your pain the way you do to mine [add the type of comments he uses here]” that might give him some idea of how it feels… or not lol
Jen, I’m so used to it, it’s our way of life. His mom was very unhealthy, so she was a person you’d never even mention you had a headache to. If I said to her, boy I had a splitting headache today, she’d say, you shouldn’t complain, you don’t know what pain is—I have pain all the time. And I wasn’t complaining, just commenting about a bad headache I had. And I did have some splitting headaches back in the day. So bad my eyes would water, I’d get nauseous and I’d have to be in a dark room and sleep it off. I’m sure they were migraines but I never told the doctor. Finally I discovered Excedrin and if I took it at the very onset of the headache I could nip it in the bud.
Anyway, I don’t mean to highjack this discussion, but I also read janson’s reply and sounds like we can relate about the people at home and how they don’t try to understand our situation…I have a reply to janson’s last comment, too…
Hi janson, I replied but the site seems to have locked up on me and my reply vanished…maybe that’s all good, it was pretty much saying I could identify with you as far as the disinterested people at home…
I also wanted to say you’re at least headed in the direction of a biologic—just gotta go through the meds required. I know it’s difficult when you’re in a flare all the time. Hang in there!
