Woah - Wish I had a chance to get to this earlier. I’m down the bottom of SA and currently a patient through the Repat Hospital in Adelaide (1000km round trip). I’ve been on MTX plus Biologics (Embrel) for 18 months now. This was only after failing at MTX plus Sulfazine for 3 months each. The hoops I had to jump through was insane. I had to come off all DMARDS and steroids and survived on paracetamol and extreme pain killers for about 8 weeks until I got my inflamatory markers up high enough to qualify. (The trick to get them up was to eat lots of potato - seriously!! I got the tip from one of the members here - and it worked!)
I suffered the ‘middle aged woman’ diagnosis for 10 years prior to diagnosis but it wasn’t until I said “this inflamed wrist can’t be blamed on being over weigh/unfit/etc” that they took me seriously. I have some great days and some not-great days, BUT I am still working full time, volunteering to 2 different community organisations and having a great time with my grand kids.
Oh AND that ‘fungusy nail’ is your psoriasis. It is what pointed to the diagnosis for my GP. I spend an hour once every 3 weeks getting false nails put on to cover what I call my ‘witches nails’. They looked totally disgusting, with thick crusting underneath, and I lost toe nails before I started on biologics. My plaque is virtually gone, my nails look not too bad except for the one thumb and my joints only give me a big issue when the weather is changing. Good luck and please feel free to PM me if you want to chat more.
Bec
Sorry for not responding been in a bit of a flare. No I hadn’t heard about the steriods trick. Will investigate further. Good luck and would love to hear how it goes for you. Best wishes
Becstar that’s such a useful contribution for me. Resonates with what Koala is saying too. 1000km round trip…whoa that’s a drive! Sounds like you have been through a lot. Would love to pm to find out more. Potatoes … who would have thought. My nickname as a kid was …spud…
I am not.
Wanted to go on them and my Rehumy was happy to put me on them but first told me a little story.
He had a patient who was bedridden. Their was no question - he should go on them. Instant cure. He went back to his normal life and in celebration went to the Philippines on holiday.
He came back with a big mass in his stomach. His GP thought he was a goner with cancer. Anyway tests showed, while he was very sick, it wasn’t cancer - he had a weird form of tuberculosis. Biologics puts a superhighway through your immune system and you are susceptible to any infection going around.
I said forget it - I will get by with just Methodrexate.
Thought it was time for a review so made an appointment with my Rheumy, Saw my GP today before seeing my Rheumy tomorrow. The previous max my ESR had been was 69 - its now 78. Biologics may now be unavoidable - we will see.
Thanks
Bill
There’s more terrible stories about people who didn’t have good treatment then people with…
As has been mentioned elsewhere here, it’s sometimes a matter of folks getting the relief they need and then not talking about it as much. You’re much more likely to vent if things go badly then go well.
Hi there bhobba!
Good to hear from you, but I’m confused … your rheumy was both happy to put you on biologics but at the same time told you this horror story …?
I have read thousands of posts (here and elsewhere) from people on biologics. Some have problems, many are doing okay … but people with weird forms of tuberculosis seem a bit thin on the ground!
I’ve been on Humira since 2014 and in that time I have had one cold. One. I never hide myself away either, so it’s not that I’m avoiding sources of infection. When I was exposed to TB recently, I had to have a course of tests. I asked if I should stop Humira until I got the results, but was told not to. The expert nurses in the TB team told me that they do not find that people on biologic drugs seem more susceptible to TB than others.
It didn’t confuse me at all. It meant - don’t enter into this lightly.
Thanks
Bill
Agree with you there Bill, it’s a big decision. For me not so much though, it was biologics or struggle daily ad infinitum. Just saying that the tales of what seem to me very unusual situations are not a good way of informing that decision. And I think the evidence suggests that these are actually pretty safe drugs.
Anyways, we may agree to differ on this, but, importantly, how are you doing?
Saw my Reuhmy yesterday and he looked at my ESR which didn’t worry him - it was 73 not 78 like I thought. My GP told me I had been up to 69 before - at least that’s what I thought he said.
My Rehmy said that sort of difference is not worth worrying bout. But it does indicate its very active,
He examined me and my knees had a lot of heat in them and angry as he said - which is exactly what he would expect with that sort of ESR. While high for PA he has patients with PA well in the 100’s.
I was in hospital recently for another reason no need to go into (bad reaction to a usually safe drug - Backlofen - I was out of it delusional for a week or so) and the Rehumy there said I didn’t need Biologics yet.
Well you wouldn’t believe it but my usual Rheumy is his Registrar (here in Australia that’s what they call newly qualified specialists who sort of apprentice themselves to a senior one for a while - or it’s part of their final training - not sure which).
He said I most definitely need biologics, recommended one to me, and asked me to think about it - will see him again in 3 months. He is going to have a bit of a chat to his registrar - I guess that’s why they have a registrar system here.
So I will talk to my other doctors and see what they think (I have Diabetes and some other things). But my Rehumy was a country doctor for 12 years before he became a Rehumy so has a lot of experience with a wide variety of disease. That’s why he is the most popular Rehumy where I live because GP’s hold that experience in very very high esteem. He was only qualified for a year when I first saw him 15 years ago. Gives you a bit of a though going over while there like checking weight, blood pressure, ears etc I have been told other Rehumys most definitely do not do - in fact they thought it a bit weird for a Rehumy.
Thanks
Bill
I was extremely skeptical about meds-NSAIDs, DMARDS and biologics, and held off taking anything until my PsA was unbearable and now I have permanent damage.
I will tell you, and I wonder if some others will offer their thoughts, I’ve read that there is more effect on your immune system if you combine DMARDs and biologics. But there are people on here who never catch anything even though they’re on both. I’m doing well on biologics alone–Enbrel. My WBCs are low but my neutrophils (sp) are good and I don’t catch every virus that goes around. Like Sybil, I don’t catch colds and I’m around children a lot. It got to the point of life was not worth living when my PsA symptoms were at their worst. We all have our breaking point–I was so scared of the meds, but Enbrel has improved my life so much I don’t worry anymore about the rare chance of getting TB or anything else. It is scary and it’s a big step to take–it doesn’t make me happy that I have to give myself an injection every week, but I accept it because it has made my life better.
The only time I’ve had an ESR that high was when things were pretty much unbearable. In fact the ol’ Mtx did get it down to almost nothing and it has stayed that way over the years. But Mtx didn’t tackle swelling, only biologics have managed that.
I get weight, blood pressure etc. checked too, it does seem to be best practice, I agree. As I said, I never feared biologics. I read everything I could find on them and on balance they seemed safe. The only time my heart really sank was at the very first rheumy appointment, waiting in a wheelchair at the pharmacy for the big bag of ‘goodies’ - steroids and Mtx - thinking ‘so this is how it’s going to be.’
We have other members here who have diabetes, I’m sure you’ll find many who face similar challenges. I guess this is decision time for you, hope being here will help with that decision and more. Good luck with all this Bill, please keep us posted.
Like I said he is not that worried about ESR - he has seen higher - it simply indicates it’s quite active. The strange thing is you can have horrid ESR and yet have symptoms so mild you can continue to play profession football (he has one patient like that) and people with pretty normal ESR in a lot of trouble.
Of relevance to this thread I asked what percentage were on Biologic’s for PSA. Strangely only 10% were. Most of his PSA patients on it have much worse Psoriasis and are on it for that. Its just they meet the criteria for using it for Arthritis, but not Psoriasis alone. He works closely with the dermatologist and often will give it to them because what the dermatologist says. The criteria for PSA is weaker than Psoriasis alone.
My psoriasis was pretty bad (it is pustual) and I saw a dermatologist who prescribed diprozone OV that if I used it a lot worked. But since being on MTX its very mild and easily controlled by Elocon. They didnt use it in hospital and it got pretty bad - my Reuhmy in there had to prescribe it - the other doctors for some reason didn’t worry.
Thanks
Bill
I’m starting Humira next week. My PsA is kind of mild at present - although I’ve had some bad flares.
But I’ve had severe uveitis which still hasn’t resolved after weeks of oral steroids and a steroid injection in the eye, and that has made it easier for me to access them.
I still had to qualify (Australia) but rheumy and ophthalmologist were right on the same road/page to biologics. I’m not sure with just my PsA symptoms, even though I just qualified, he would have supported it so strongly.
uveitis is a big deal. sounds like Humira is on your menu
@koala I hope it goes well on Humira and the uveitis resolves. Glad both your Docs are on the same page…don’t want to mess with the eyes. Sounds like it has been rough lately. Hopefully Humira will fix it.
Hi Bill, your Rhemy sounds eerily like mine. He didn’t say he was against biologics, but oh the stories he’d tell of terrible outcomes when the subject came up!
I would describe him as being very against them, despite the fact he never voiced it openly - after a fair bit of discussion it seemed likely that he was more scared of the possibility of killing a patient than he was worried about quality of life - which is totally understandable if you’ve never had / lived with someone with PsA, but you have seen one of your nearest and dearest die (which br middle age, almost all of us have).
The last time we spoke of it, he told me that he had had 4 patients that year admitted to hospital with pneumonia and other infections that were on biologics (remember we don’t know if the biologics caused this). I asked him how many total he had on biologics. About 400.
That’s consistent with the studies that show serious infection risk among biologics seems to be similar or slightly higher than the general population - the main issue being we are unsure if the slightly increased risk is due to the biologics or the PsA.
And Seenie is right - though MTX can really help symptoms for some people, studies show it does little to nothing to prevent damage in PsA (even though it seems to work for some people with RA - oh the things we don’t know about this disease yet!
Anyway, the point of this rather long, waffling post is that for me, I decided it shouldn’t be my rheumy’s fears that determine how I am treated, it should be my informed decision based on my risk profile - am I willing to accept the possible risks of biologics for the potential of a much better outcome with PsA?
The answer for me was yes. I’ve been on biologics for 4 years and am in what I would say is pretty darn close to Remission!
As to the Australian data, we have a low proportion of biologics users here for a few reasons; our medical profession and governing bodies are more conservative than in the US, but most importantly, biologics are eye-wateringly expensive and our government pays for them through the pbs, hence they make it incredibly difficult to access yhem.
My Rheumy might not like biologics, but he knows how to get through the hoops and certainly didn’t refuse them once I’d made my decision, but he was never going to offer them to me, so if you de use you want to consider them, it’s good to have the info before your appointment. Take care
Jen
(P.S. I go to a Rheumy in Brisbane)
Recently, my biologic failed and I am doing very well just on methotrexate. I inject it once a week. I have PsA moderately and I have no arthritis symptoms now except for extreme fatigue. I take narcolepsy medicine and it isn’t helping enough. I feel I need to go back on a biologic to just help with the fatigue. I’m battling with my rheumy about this now.
I met with my primary care physician last week…I haven’t seen him since the nightmare started last March…He was very sympathetic and agrees with the speculation that the 5 rheumatologists I’ve seen are in fear of liability since there are no concrete diagnostic results…He’s now willing to meticulously examine the progression of my disease and research the possibility of him administering a trial course of Enbrel to see if I respond to the biologics since the plaquenil and MTX of 6 months are only offering slight relief…I didn’t know whether to cry or curb my enthusiasm…Does anyone have reservations about an INTERNIST/GP/MD doing this for me??
Jen, bhobba is in Brisbane as well! Maybe you both see the same rheumie!