Hi there all you good people! Long time no message. Mea Culpa!
After seeing 3 rheumies I finally found one who takes me seriously and who I think is FABULOUS! He’s not sure if I have PsA or seronegative RA (way my luck runs maybe both) but he prescribed sulfasalizine. I actually tolerated it fairly well. Until I developed the most HORRENDOUS taste that would not go away and could not be drowned out by chewing gum like a 1950s teenager, brushing the enamel off my teeth or nearly sipping Listerine all day. Even my skin tasted awful. Not that I lick myself like a cat but I do lick my lips and fingers on occasion. I just about stopped eating, food was so awful! So we stopped that and now I’m going to try Humeria.
I know this sounds odd but after 10+ years of trying to find a rheumy who would take me seriously and actually start treatment, now that I’ve found one I still have a bit of trepidation about taking DMARDs and now starting a biologic. I’ve never taken much in the way of any sort of med, other than chemo. (But cancer is a bit of an extenuating circumstance and premature death is really sucky) So I know, I know. Fear the disease, not the med. And my wonderful rheumy plainly says the biologics are actually safer than the DMARDs so I am taking the plunge. That said, is there anything I should know before I start? As wonderful as both my PCP and rheumy are there’s nothing like some input from the peeps who actually live with those meds.
You’re going to be fine. You might feel a little woozy after the first injection but that’s short lived. I tend to take all biologics on a Friday evening as I work Mon to Fri. I like the chance to rest up afterwards if needed. Biggest tip - take it out of the fridge a good few hours before you intend to inject. As in take it out in the morning and inject in the evening. You want the liquid inside the pen to be at room temp too. Humira can be kept out of the fridge for 14 days and you must use it within those 14 days. So you’ve got no problems leaving out all day. Every biologic has a different time period it can be unrefridgerated for so it’s always worth googling that.
Ask this rheumy to do a PsARC exam on you. That is physically examining all 68 joints by his own hands deemed to be affected by PsA. They check for swelling, sponginess indicating inflammation and they watch your face to see if it hurts. Then they count up the number of swollen and or inflamed joints versus just the tender painful ones. That will show him whether you have PsA or seronegative RA. As RA only affects 28 joints and the physical exam for that is called a DAS. So if you have any of the 40 joints not capable of having RA inflammation suffering inflammation instead - there is your answer. Yes indeed it can be that simple.
Now to the harder bit. What type of cancer did you have? People who have suffered cancer tend not to be given Humira as a first choice. They tend to be prescribed what’s called an interleukin biologic instead and for us that would be Cosentyx, Talz, Stelera (no use if you have spinal symptoms though) Bimzelx, Tremfya to name most of them. Huge research has gone on with biologics and cancers and what type of cancer of you had is relevant to the choice of biologic. Initially they thought all biologics could increase the risk of cancer and now that’s been totally debunked altogether. It could well be perfectly safe for you to have Humira but it would be something I would get fully checked out. Just to be sure. It’s always better to be safe than sorry.
Thanks!
I’ll have to wait till April to ask about the PsARC exam. He’s in Seattle, Washington and I’m 1,200 miles away in Alaska. Fortunately AK and WA have a telemed agreement so we can do a face to face via video. But actual hands on takes a lot more planning.
He did ask about my cancer history. I’m a 21 year survivor of ovarian clear cell carcinoma, not a lot of us out there of that particular ball o’ fun. It’s very nasty. Fast growing and drug resistant. So it was treated extremely aggressively with high dose chemo and follow ups for 5 years after treatment. Even now they still do a CA125 test annually. One of my old doctors always shook his head when he saw me saying something to the effect that he still could hardly believe I was alive. I always say that I was born for a purpose and dying of ovarian cancer ain’t it! But I digress.
We did talk about my cancer history and he didn’t feel I was at particular risk taking Humeria. Now if it had been a lymphoma he probably would have felt differently. He also said if I have spinal involvement Humeria won’t do anything and I’ll have to move on to something else. Fortunately and unfortunately my biggest problem is with the enthesis, not so much the actual joints. (I believe Amos has a similar situation) Here I will say that way too many drs are way too ready to shuffle you off into ‘just tendonitis’ land and look no further. But how the heck could I have done something in my sleep to suddenly give myself tendonitis, have it for sometimes months on end and then it just suddenly go away in a day or two? But I generally got brushed off when I asked that question. Which is one reason it took me 10 years to find a rheumy that didn’t diagnose via flow chart. (Wow! That was a serious digression! Sorry)
Back to the spinal thing, X-rays don’t show bone erosion but a huge amount of OA and significant disk degeneration. Shocker. Of course X-rays are useless for soft tissue/inflammation. Recent MRIs show stenosis, some very herniated disks and some ‘inflammation’, which the orthopedists kind of skip over. We don’t have a spine dr in town so they tend to just focus on what they know and do. I have known for years that my spine is an issue but it has progressed to the point that a couple of functions are being effected. Hands losing strength, problems with grip, legs tend to go numb, that sort of thing. Fortunately my drs are not among those silly people that think it’s impossible to have both OA and an inflammatory arthritis. So we are currently trying to concentrate on the most pressing need. Whenever my insurance gets around to approving it I’ll have a couple epidural steroid injections. Then before we do anything surgical (I have other problematic body parts) we are going to see what Humeria does or doesn’t do and take it from there.
Wow! That’s WAY more than you’re interested in, I’m sure!
Thanks again!
So so glad the whole cancer thing was fully discussed and thought about. And Humira is deemed safe with it. I was worried mentioning it, but felt it needed to be said.
Most of my PsA pain issues are tendon based too. Presently sitting here with a swollen knee solely from a tendon issue not the joint given where the swelling on the knee is. Came up last night as I was lying on the sofa watching TV doing absolutely nothing at all with my knee. The joys of PsA. It’s now causing issues using it. For me these things tend to die down in a couple of days. So we’ll see the outcome this time, more so as I’m between meds presently.
Now here’s the thing with OA issues. OA issues tend to be age related only. So if we’re older like above 55 then I agree we possibly can have both. But PsA damage and OA damage look precisely the same on x-ray and scans, so how on earth can they distinguish cogently which is caused by OA and PsA? More so if you have had untreated PsA for years and years. PsA unlike OA can cause damage really fast literally overnight if it wants to. The stupid default is always to call it OA because PsA is so rare people reading x-rays and scan rarely come across patients with PsA so they plum for calling it OA only.
Sadly that affects treatment ideas for PsA as PsA is then deemed as not causing the damage. Whereas PsA could have well caused the damage looking like OA just anyway. And if you have PsA damage occuring you are treated more aggressively to try and bring that level of disease activity down faster. Ergo it’s hugely important to always challenge that ‘darn it’s just OA’ edict.
Spine issues and damage, hand issues with numbness, numb legs,etc can also all be caused by PsA inflammation too and indeed tendon issues too.
Oh and there are varying exam protocols to check for tendon issues along with to check for joint issues. One is called the Leeds Index score (LEI) but it only checks 6 tendon sites and PsA can cause way more tendon tendon issues than in just 6 sites. I’ll find out the names and bounce them back for you.
Thanks. The ‘just OA’ thing is SO irritating! Among other things. I had more ‘just OA’ at 40 than most have at 60, which made me wonder what the heck was going on. No one, and I mean NO ONE, in my family has as much ‘just OA’ as I do, even now. And I’m the youngest by many years (67 soon to be 68) So years ago I was not convinced it was ’just OA’ and started doing some research leading me to PsA. Incidentally my Ps was undiagnosed my entire life because I’ve always had ‘beautiful skin’. Except for my classicly Ps fingernails/fingertips which no one bothered to associate with Ps. And it was all over my scalp as a child, which was ascribed to ‘just dandruff because the child just doesn’t wash her hair enough.’ Every other day isn’t enough? (I hate ‘just’!) Oddly the scalp suddenly and mysteriously cleared up in my late 20s/early 30s. I wish my fingers/fingernails would. When they flair up life can be pretty special. I’m hoping the Humeria will help that.
Ya know what I think I hate just about the most in all this? When I tried to get answers I was generally made to feel like it was my fault because I was substandard or I didn’t do something or did do something or was being a drama queen or imagining something or (the absolute WORST) because I’m a girl. Yes, that was actually said to me. Also that I was a bored middle aged housewife who sat on the sofa eating potato chips watching soap operas all day. You have got to be %@#$& kidding me! The really galling bit was that the dr in his godlike wisdom produced that diagnosis without benefit of any sort of exam, test or anything. Nada. Zip. Zilch. At the time I didn’t even own a TV, lived on a working farm and was the head grower in a modest commercial greenhouse. Not exactly a sedentary lifestyle. He has no idea how fortunate he was that I stifled the urge to see if I could pull his stethoscope all the way through from top to bottom.
WOW! Poo, you seem to be able to get me going into all sorts of digressions. Sorry ‘bout that! Hope your knee resolves quickly. But tell me, were you eating potato chips (crisps to you) watching soap operas while laying on that sofa of yours? Apparently sofas are vicious vicious creatures…
I’m sitting here at my laptop drinking my first coffee of the day in giggles at what you wrote. No there were no crisps available to me on my sofa that night as my knee blew up, sadly. All that was available to me was some fizzy water. And believe it or not I was watching some interesting TV programme, (can’t remember what now) but no soap operas are ever watched!
You make a very valid point at ‘the just a girl/woman’ stuff from medics or ‘it’s the perimenopause/menopause’ issue otherwise. It’s a world wide problem sadly. I’m so grateful my rheumy is a woman consequently. But even she extremely occasionally thankfully can fall into the ‘it’s just OA’ nonsense. She stops dead when she sees my face… However at 62 even I’ve got to admit the ‘just OA stuff’ can happen regardless. But I’ll take an awful lot of persuading. An awful lot.
The just osteo thing. . . When my mom was in her late fifties, her hands started to swell and deform. The hand doctor told her it was just osteo. About ten years later, after many joint replacements, auto fusions and surgical fusions, she asked the doctor if it could be psoriatic arthritis because her daughter had it. All of a sudden, she’s got the same diagnosis. She’s been on disease modifying meds since then, but the damage to her hands was done.
I was diagnosed at 36 years old but can track it back to about 19 years old. In my early (mid?) forties I had x rays of my hips that already showed joint space narrowing. Thankfully it hasn’t progressed significantly, but my knees have. I’m 53 now and looking at knee replacement in the next few years most likely.
The point is that early osteo in someone with a history of inflammatory arthritis should be looked at and managed more aggressively
Oh momcat I feel your pain. I once had a doc (in my 8 year diagnosic journey) tell me it was my hormones…menopause? Hmmm…you know like all women have so much pain at this time (and Im 55 now…6,7 years ago?). Combine that with the anti depressants they want to give us…ahhhhhhhhhhh!
I guess I can also relate to most of what you wrote…scalp pso back in the day, etc.
Now I have an image of Poo feet up on the coffee table in a ratty robe in England somewhere eating crisps…lol.
Well, hard for a guy to offer much at this point. My 62 year old wife likes the t-shirt I made her but won’t wear it out of the house. “It was Menopause NOT Climate Change!”
Said with fear and trembling!
Awwww! How sweet of you to give such a delightful gift! If my hubby gave that to me I would oh so proudly wear it. To wash the car or maybe the windows.
I have for many years now tried to tell people that it’s not global warming. Just all the Baby Boomers going through menopause! As soon as we’re all flushed out I’m sure all will be well.
It’s very nasty. Fast growing and drug resistant. So it was treated extremely aggressively with high dose chemo and follow ups for 5 years after treatment. Even now they still do a CA125 test annually. One of my old doctors always shook his head when he saw me saying something to the effect that he still could hardly believe I was alive. I always say that I was born for a purpose and dying of ovarian cancer ain’t it! But I digress.
I’ll have a couple epidural steroid injections. Then before we do anything surgical (I have other problematic body parts) we are going to see what Humeria does or doesn’t do and take it from there.
Yes, that was actually said to me. Also that I was a bored middle aged housewife who sat on the sofa eating potato chips watching soap operas all day. You have got to be %@#$& kidding me! The really galling bit was that the dr in his godlike wisdom produced that diagnosis without benefit of any sort of exam, test or anything. Nada. Zip. Zilch. At the time I didn’t even own a TV, lived on a working farm and was the head grower in a modest commercial greenhouse. Not exactly a sedentary lifestyle. He has no idea how fortunate he was that I stifled the urge to see if I could pull his stethoscope all the way through from top to bottom.
