This team is a keeper Amos. At least they’re teaching you what to expect of rheumatologist specialist care. So if and when
Ridiculous computer posted too soon. So if and when they can’t treat you any longer you can tell any new rheumy precisely the type of treatment and care you now expect from them. Honestly some doctors do need to be taught how to do this and in my view there’s absolutely nothing wrong in teaching them either.
Had to get a steroid injection between C3 and C4 yesterday. Now I am running at 110 miles per hour!! They work, but I hate the side effects.
2 Likes
Update on the road to biologics…
I decided to save fuel and get the requested TB test locally. Two of the closest towns don’t do the test since Covid. The one that does it took 16 days to get the stuff in…kept “forgetting” to order. So the results were sent to the Super Rheumy this morning. I guess it will be a bunch of paper work and then perhaps some form of injection. Lately, I have been feeling pretty good as long as I take 200-400 mg of Celebrex each day. Two days off of it and inflammation pain sky rockets and fatigue returns. Here’s hoping!
2 Likes
It’s really good you’re doing OK now without the pred though isn’t it? Here’s hoping. I can’t remember which biologic your ‘super rheumy’ was thinking of starting you on? Was it Enbrel or Humira?
He mentioned Enbrel but j won’t know for sure til my Sept appointment. How does Enbrel compare with others?
Both Embrel and Humira are on the same sort of platform really. If one doesn’t work for you, they normally change you to the other as it’s likely one or the other should work for you. Having said that neither did for me, but the next one Cosentyx does. Thankfully. 
Basically Embrel circles the protein and humira attaches to it, that’s the only difference between them. Both are trying to manipulate it.
Enbrel is a good solid first-try biologic, part of the TNF-blocker type, with a good response rate. My understanding from research years ago (though this may have changed - always get advice from your doc) was that it doesn’t tend to be as helpful for PsA associated with eye problems or gut symptoms. It is one of the longest in use, therefore we have better long term information on its safety than some of the newer ones - both Humira and Remicade are also TNF-blockers that have been in use for a long time too.
Because Remicade requires an infusion so can be a bit inconvenient, and is made from murine (mouse) proteins and can rarely cause anaphalaxis, patients are often started on either Enbrel or Humira (self-injections based on humanised proteins). Then as Poo says there are many other types to try, including different classes (like IL-blockers, eg Costenyx, Stelara, or JAK inhibitors).
I’d jump on it! Loads of folks here do well on Enbrel.
1 Like
Today things progressed a bit more and my paperwork is underway for approval. Government will likely cover 80% of the cost once I reach a deductible. Looks like it will be Humira as the first biologic. Reading the potential side effects had scared me "&}#less! I think I need talking out from under the covers. Yeesh! As if I want a bunch of other stuff to make me regret starting on it. I know the typical answers but I think I might go into a head in the sand stance for a while. Reading testimonies from dead people doesn’t help.
In all honesty @Amos I’ve never felt so well otherwise since starting biologics. It’s amazing really when you have a more normally functioning immune system, which is what biologics do for us.
I guess all of this is part of the mental gymnastics…mind hoops of not living in fearful speculation. But sometimes fear is reasonable and when it comes down to it, life can be scary and none of us knows the future so we weigh the odds and make decisions. I am now at that decision point. A rep from Humira will be calling me within two weeks to discuss costs etc. I wonder how many people regret going on biologics because of nasty things that made their lives worse? Most of you have crossed this bridge some time ago and must think I am nuts in the head! I guess because I have very little psoriasis and no visible joint distortion or swelling I tend to think my condition isn’t bad enough yet to warrant biologics. But without adding Celebrex and Tylenol to my Dmards, I’m in too much pain to do much. I look very normal, all my issues are hidden deep within the joints. Sorry, I think I’m processing by babbling…again! I don’t remember signing up for this journey!
Amos, as you can read from the medication info, the chances are extremely slim that you are gonna get any of the scary side effects, whilst the chances of PsA progressing is almost certain.
And whilst only you together with your docs can decide, I’ll tell you my experience.
I had both great results from Humira (for around 3 years), and later on one of the scary side effects. I had a version of the neurological side effects - slow onset and relatively mild - they were still scary, like mild MS. and the slowness of onset which is not typical meant it took almost two years for us to realise what the problem was. Not the easiest two years of my life, but thankfully reversal was almost immediate when Humira was stopped.
Now I’m being monitored for a pre-cancerous bone marrow state. Whilst there is an increase in a certain type of cancers in kids, mostly with Crohns, It’s likely that my pre-cancerous state has nothing to do with TNF-blockers (I started with Enbrel, then Humira, then moved to Cimzia), certainly there is no published evidence for that in the hundreds of thousands of people who take them, though there is a theory that suggests it’s possible.
In some ways, it seems I’ve had an improbably bad run, but that’s not the way I see it - I can’t overstate the difference the biologics made to my quality of life, my ability to function. So much so, I’m really not sure I would have pulled myself out of my self-pity and depression without them.
I’ve certainly never had the infection problems that a very small percentage of people on Humira get. I’ve had both Salmonella and Dengue (for the second time) whilst on Humira, both of which can be quite dangerous to the average person, but for both of which I took a only a day off work and had a really mild infection (though I jumped on the Salmonella super-fast with antibiotics).
Wow, I’ve really rambled on with my life story 
I don’t remember many people on the forum having experiences with the scarier side effects, and it seems they truly are very rare (though skin cancers that need to be removed do seem to be more common).
Even with some negative experiences, I don’t regret taking Humira or the other biologics. They can be an absolute game-changer for PsA.
1 Like
You’re not nuts. As @Jen75 mentions, I have ongoing issues with actinic keratoses which are pre-cancerous lesions. As I understand it the cancers from these things typically take 20 years or more to develop, but they still concern me.
Sometimes I get kind of angry with Humira on the assumption that it has predisposed me to these little things (and they are little). But over time I’ve had an increasing number of joint erosions … so far they haven’t really impacted on my mobility, they seem to worsen extremely slowly. I didn’t have any when I started biologics, it seems to me they’re the result of having PsA for a long time. It also seems to me that it is the biologics that have slowed their progression considerably.
I’m not expressing this well but I now understand that I too can get erosions … I thought at first that I never would. And yet … they almost stand still. With multiple small erosions in my feet I suspect that every step would by now be painful had I not started biologics and that there would be a wheelchair parked in the hall.
Over time, having read thousands of posts on here, I’ve reluctantly come to the conclusion that moderate to severe PsA is an extremely insidious and potentially destructive disease. The NHS does not like prescribing expensive biologics for so many patients … yet it does. I believe the rationale for that is that PsA has been well-proven to be very destructive in the long-term and therefore drugs that slow the disease save money down the line.
2 Likes
That’s the whole idea, too slow things down. While I continue to have damage, I know that my quality of life is significantly better with the biologics, and that the disease has slowed.
2 Likes
@Stoney , I was diagnosed w same keratosis when was investigating possibility of psoriatic arthritis, so had both before starting any medication for psa. Possibly fact many of us have multiple autoimmune issues, as well as cancers possibilities which need to be detected and monitored.
Also am having issues with feet, have got to have x rays to assess possible fractures and or erosions. Am definitely glad we are also on medication to possibly slow psa damage. All the best to everyone.
2 Likes
Just wondering if anyone knows people in their upper years (80’s)? with PsA and their treatment and condition. Is loss of mobility and other function common or inevitable?
All we can do to future-proof our aged selves as much as possible is to get the best treatment and stay active.
2 Likes
I’m hoping that Humira will help settle the unexpected flares. I can make a comment to my wife that I’m having a pretty good day and be in high levels of pain an hour later! Or occasionally the opposite occurs. I’ve heard people think, “you seem fine”…had they seen me yesterday when I was having trouble getting out of the car…It should be called RPsa…RANDOM PsA!
3 Likes
YOU FOUND A GOOD ONE!!! I am doing a happy dance for you, Amos. Enbrel or Humira, doesn’t much matter: if one doesn’t work, you will try the other.
I guess the bad news is the fact that you need to pay a co-pay. BUT I’m guessing that it will be worth every penny.
Congratulations on finally making major progress! 
4 Likes