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Living with Psoriatic Arthritis (PsA)

Taltz,prednisone, meloxicam--Systemic inflammation

#1

Hey all I am still around and haunt around here occassionly. I am about 3 months in on biweekly injectionsof Taltz for PSA. I noticed improvement in generalized pain. I am now starting to notice my immune system is hindered somewhat. For those who know and are experienced with biologics understand what I am saying. What I need to know is other peoples experience and if it improved the perception of pain. What I have found now is personally as I become normalized to experience subtle changes in the perception of pain, that that leads me to believe that my symptoms are better when systemic inflammation is reduced.

I also have used prednisone 15mg a day along with Meloxicam 15mg. With the biologic, meloxicam, and prednisone I get the most relief in pain. The two biologics that worked best where humira for a year or so, cosentyx for a out 8 months, and taltz. Of course I am using one 7.5mg of opiod for break through pain. I would use more but no funds to see a pain clinic. What I am trying to say is when I use all three options is when I feel much much better. The problem as I see it is that taking all three long term is not good. Can anyone with severe or moderate psa report on the use of biologics and other medications to what they find works or does not please. I need frequency, dosage, and name of the drugs. I am wondering if others have noticed the subtle changes in pain perception to indicate that the drugs are reducing systemic inflammation.

ty
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#2

I’m not 100% clear on what you’re asking regarding the perception of pain. I think you’re asking if people feel that their pain perception has reset with the use of biologic so that they are more sensitive again? I just I just am not sure.

Regarding your combination of meds, 15 mg of Prednisone daily over the long term is likely to high. My understanding is it 5 to 10 mg daily is typically acceptable over the long term. This is clearly something to speak to your doctor about.

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#3

Hey Stoney thanks for replying. I will make my thoughts clearer in question forms.

  1. Does anyone with PSA notice increased levels of pain when inflammation levels from blood test indicate normal ranges?

  2. Can anyone speak to the medicine routines involving two or more drugs and how they perceive how well a drug is working? Is it related to perceptions of pain from PSA? For example, when taking a biologic and prednisone and you suddenly stop–can you feel the difference in regards to pain sensations.

  3. The issue as another way to ask. Has anyone noticed when dropping a medicine that appears to work based on pain response to the body? For example, you take two meds and you pain is reduced and then you drop one and notice your pain increases.

Stating my hypothesis–Pain levels should in theory become controlled and reduced as drugs to limit the immune system response enter the body unless x, y, and z are unknown factors contributing to subjective response not relating to a causal relation.

thanks.

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#4

Hi Woodworm,

There was a very interesting study done a few years ago that showed amongst a population arthritis patients novel to biologics who took remicade, that patient perception of pain reduced significantly in the responders BEFORE there was any measurable reduction in inflammation in the tissues in MRI. In the non-responders, there was no significant reduction of pain perception, though interestingly in the long-term outcomes, there was a reduction of progression in radiology scores, even in those who did not respond on pain or swelling scores.

The authors speculated that because many of the molecules involved in the inflammatory cascade are also involved in pain pathways, people’s sensitivity to pain was very quickly dialed down, but it took longer for the inflammation in and around the joints and tendons to subside.

If you get into the details of pain systems, this indeed makes sense. So if I understand your question properly - yes, I think if you are responding to a DMARD (or multiple) and you stop taking it, then it is quite possible your pain perception (eg even to something unrelated to the PsA) may increase.

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#5

Hey, that is interesting Jen75. It is also troubling in that it becomes hard for an individual to figure out what is going on in relation to symptoms. In a sense does it matter if inflammation or the destruction of the joints is prevented if the perception of pain relating to the joints gets worse or does not change. Yes, in one way due to keeping the body from breaking down but no in another due to crazy pain levels. This makes incredibly hard to figure out a path forward and if what you are doing is working to control symptoms. The two can coexist but it does not mean it will and that is a dreadful problem. I would argue that does it really matter to the individual if symptoms of pain are not controlled?

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#6

My blood work is always normal, so blood work is never a good indicator of disease activity for me.

I started off on plaquenil and added in leflunomide. I added in a biologic for probably 6 months before taking away plaquenil. It minimized transition issues and gave time for the biologic to work.

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#7

I think pain perceptions are fascinating but I truly don’t understand them at all from a medical perspective. My experience with PsA was at the beginning the pain levels were intolerable, I would literally rock back and forth humming in distress unable to do anything other than that for hours even days. PsA hit me though suddenly, it didn’t come on slowly at all. And as it rampaged around my body in the first two months attacking different bits for the first time, the pain for the new bit was likewise intolerable initially. I wasn’t really appropriately treated for at least a year due to my stubborness but was on varying amounts of pred only. I also don’t really know really know what my inflammation levels were for that year either as other than pred I was stupidly refusing treatment. But as I got used to the pain and indeed obviously the pred helped I never hit those pain levels again even when the issues sort of settled in the various parts of me where I guess it thought it could damage.

So since being treated properly with one DMARD and now only one biologic (as in the DMARD had been dropped due to it reacting badly with the biologic), plus standard inflammatories and pain killers, (and pred only very rarely) I’ve also never experienced those levels of pain again whatever my treatment other than when I discovered I had two fractures in my pelvis which wasn’t the flare I thought it was. So of course the pain from them was then ‘explained’. Even bi-lateral hip bursitis whilst being painful wasn’t as painful as what I initially experienced. Neither is costo when it ocassionally but fairly regularly happens. I can suffer incapacity, but never to date have I suffered those levels of pain again and long may it stay that way.

I think though I was influenced by what happened with my mother. She didn’t have PsA (actually she might have had but only in her wrist at the end of her life) but she did have chronic diverticulitis which caused her excessive pain indeed most probably excessive to the level of her diverticular disease too. She could also get anxious and it in turn would affect her stomach which in turn would affect her bowels. And it was explained to us and indeed her that she had literally developed a ‘groove’ of reaction to pain which at her older age no amount of pain drugs could undo. It was though set off on a psychological basis as in her reactions came from her perception which had literally become skewed.

PsA hit me about a year after she died at the grand old age of 86. I was acutely aware then in the initial stages of this disease that I must not let my reactions to pain get in a ‘groove’ as otherwise I’d be ‘done for’ on pain reaction like my mother was. So far my reactions haven’t got in such a ‘groove’ as in I don’t suffer intolerable pain much anymore despite my disease activity levels warranting and passing all the tests in the UK for funding biologics. Yes I can suffer some pain but it’s my fatigue levels which for me are the indicators of how well I’m doing or not doing, not pain. Nor indeed inflammatory markers in my blood which can be high when I feel just fine, or can be low when I feel just awful. So much so that I pay little or no attention to such blood tests results. I only look at my blood test results for potential damage to liver and kidney function and nothing else.

Maybe I’m just lucky in that, as I’ve really no idea on a scientific basis on any of the above. Or if indeed it’s got any rational base. But I would agree with you @Woodworm controlling symptoms of pain is essential. But how to do that effectively I don’t know other than I know mine now are effectively controlled.

Psychologically I treat my PsA as a ‘wayward entity (primarily my immune system, rather than x or y joint(s) or tendons) which is like the worst teenager imaginable, prone to irrational tantrums and irrational destructive tendancies’, and my job is to keep one step ahead of any of those tantrums always. So in my head it’s like I’ve been invaded by something that isn’t the real me but I’m better than it. It helps me to think of it like this as something almost detached from the real me as that helps to keep the core of me just more capacitated (psychologically at least) in sorting out the various attempts at tantrums etc.

So whilst to many of you this might all just indicate I’m totally bonkers, maybe I am, but I keep functional presently at least and I don’t suffer those intolerable pain levels anymore. I’m fine with that.

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#8

Woodworm - I totally agree, it’s both damage we are trying to prevent, and quality of life we are trying to regain. Although most Rheumys are more focused on damage, thankfully “response” to a DMARD is usually measured by swelling, pain (to a lesser extent), and quality of life questionnaires- simply because no-one wants to wait till there is damage evident in radiology to realise the med isn’t working.

As such, in the end, it usually is symptom control that defines whether we are responders, or not, and move onto the next meds. The good news being, that in some cases, even if you trial a med for 3 months and are not a symptom responder, there’s a good chance it is slowing down radiologic damage to bones, at least.

Edit; and therefore, with the biologics according to the studies they’ve done, if you are a symptom responder, then you are getting damage prevention, at least radiologically on the long term studies.

This does not follow with, for example, a mix of NSAIDs and pain medication, change in diet, or indeed any thing that is not a DMARD - which may control the pain and even some other symptoms for some time (but will eventually bite you in the butt), but symptom control will NOT equal damage prevention.

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#9

Sorry if I’m blunt here. Permanent damage creates permanent pain. As patients we tend to evaluate arthritis meds based on pain management. If we do we will always be disappointed. ALWAYS. Flare will and do occur with the best med regime, after all we still have the disease. But pain will be worse when it is associated with damage and not inflammation. That is why bio/Dmard regimes are often supplemented with NSAID/steroid therapy. Those meds directly effect inflammation levels.

Those of us that have had joint replacements understand this only too well. Those of us who need replacement parts but can’t get them (feet etc) really understand the difference. Communicating ":there is pain and then there is PAIN, to others is a problem. Suffice it to say it can be worse - much worse. Then there is the issue of damaged organs… Nurse Cratchet and I just spent another quality night together in the CCU.

So yeah the Docs are right on when they concentrate on “damage” If your Doc is “patient focused ie pain” you need a new doc IMMEDIATELY. I had one who took great care of pain issues. Only after I was told that my CHF was the result of uncontrolled PsA and would not be fixed by a massive open heart surgery (valve replacement or heart transplant) did I figure it out

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#10

Good points Jen75. Yes the good of any biologic is it can do good at slowing damage without handling symptoms.

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#11

Hey tntlamb, I like blunt. While I agree about being disappointed with results relating to pain, I cannot help but notice if one of my medications that I am currently taken is taken away that my symptoms of pain increase. I makes me think that the prednisone along with the other drugs (taltz and meloxicam), lower my pain levels. How and why I am not sure but thinking simply about the relation makes me think there is some immune system pathway or pathways that the prednisone addresses that the nsaid and biologic does not cover. I think it is possible that there are different pathways that the immune system functions. I consider it the overlord for bodily processes and imagine that it is aggressive, clever, and has a huge tool box. The other way I think of my immune system is a drunken idiot that instead of pissing in the toilet is relieving him self on the closet floor.

It could be as you said that we are talking about pain relating to damage and pain relating to something else entirely that accompanies the PSA disease and a multitude of coexisting disease. For me the pain is a you say bad but sometimes way worse. Pain as a normalized condition is probably different for everyone depending on various conditions. It can always be worse is a mantra that keeps me balanced with expectations. Having pain along with organ failure and not being able to walk or use hands is definitely worse. My point was just that pain alone can be enough to wreck a person even if the destruction of organs, joints, and other things are slowed or halted. I think the issue of pain is hard for lay people and doctors to understand the level of pain due to so much variance within each persons biology and disease portfolio.

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#12

Don’t misunderstand me, of course pain can wreck a person. The rheumatologist 's job however is not to control pain ( at least not chronic pain) but rather to control the disease, and the communicating with those specialties what are expert in pain management. It is rare that aPsA patient experiences chronic pain that does not have OA (which is caused by PsA)

The good news in all of this is you get relief from predi. That is proof is inflammation.

As caution discussion only, I personally am not a fan of Taltz for PsA. It’s great on the P, incredible on the P but recent studies indicate that IL-17 may contribute to neuropathic pain by promoting the proliferation of astrocytes and secretion of proinflammatory cytokines in spinal nerve ligation-induced neuropathic pain. There isn’t in all honesty a damn thing that can be done for neuropathic pain (antisiezure meds help) Pain meds make it worse on rebound.

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#13

I see your point tntlamb. I agree the rheumatologist must focus on lessening the destruction from PSA. As you know pain is a tricky symptom and it can be frustrating that the solutions or process for this particular problem is expensive and hard to deal with. Expensive in that one must go to a pain clinic and pay for room visits, co payment if you have insurance, and even more for medicine, along with all the urine tests.

As you say the good news is prednisone helps dramatically if taken out of my rotation. If I were to drop meloxicam or my biologic we are talking the 6th level of hell scenario. I have been on both for a time and it definitely gets worse all around without them. I am interested in your knowledge and take on Taltz. I have become kind of uninterested and desensitized in the specifics of a drug because I have cycled through at least 4-6 biologics and quit reading the in depth part of the drug and its review. A person can get desperate considering the untreated options. I know Taltz seems to help at least in my case about as well or as well as consentyx. From what I understand Taltz is considered a relatively new drug?

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#14

Taltz is was approved only for the p not the a of PsA until very recentlyand then based only on ACR20 and a 24 week endpoint. Lily has a case of the red ass for Abbvie and only used humira in their study. It was only a compaitove study not a clinical trial.

So we have an effetive psoriasis drug not being used as a PsA drug. that begs the question which is the cart and which is the horse? The more one trys to work through it the more confusing it gets. Taltz binds with IL-17 and suppresses the inflammatory cytokinesis. The more traditional biologics bind to TNF. What really wacks things out is the traditional biologics often increase psoriasis levels for a short while and then it settles down. Taltz increases general inflammation but so far not much evidence exists that those levels reduce.

I have never been covinced from a purely statistical standpoint that PsA even exists… Only 30% of psoriasis patients develop PSA. A numbers guy would tell you there is not a statical significant relationship unless that number exceeds 57%. (a gambler would tell you this is like making a row bet in roulette (1/3 of the numbers) and expecting to beat the house) conversely only a third or less of spondylaropathy patients have psoriasis. As a washed up stats guy, I would conclude they are separate conditons that sometimes happen together and we have yet to identify a common factor. The Taltz/tnf conundrum would seem to confirm it.

Fwiw, I’m pretty tied in to the rheumatology community at a major a academic center and none of those guys are prescribing taltz yet.

That being said. It makes sense for you to try given your failure with the antitnfs. Either it works or it doesn’t…

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#15

That is interesting. I had to go look at the public material. I see that it does deal with the immune system somehow. Whether or not psa travels similar areas I suppose it could help but maybe not. All my biologics have made an impact on my psoriasis to a degree. Some have helped with both and I am wondering if there is a possibility that it is helping psa. I happen to have both so… I get what you are saying from a scientific data study. I would rather not be the test subject but… Most of this problem within science and the human condition is causal relations and what it really means for the subject and the world is not definitive. I think my specific problem is liver enzymes so that knocks out some traditional medications which help psa alot.

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#16

And Ty for the info.!:+1:

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