Another break-up ahead?

As I consider my health diary for the last 2 years, I’m really questioning the value of Methotrexate in my life. The effects have been minimal and the evidence of it working seems mostly imaginary. I am all for “fear the disease progression more than the potential side effects” BUT if there is no proof that something is working, I have to just “believe” that it helps. My faith in MTX is irrelevant to its effectiveness. So I am contemplating quitting it. I tend to be a pretty logical person and taking this stuff which is likely taking it’s toll in some hidden way that will bite me in the ass later is lacking good reason. There seems to be too many “maybe” benefits like, “It has been shown to sometimes aid the effectiveness of a biologic”. (which might be giving nuances of improvement) I know, I’m looking for hard evidence in the presence of a mystery but sure don’t like it! 200 mg of Sulfasalazine proved to give me a headache, 100mg doesn’t. I can measure that. Or maybe no sulfasalazine would give less of a headache which I no longer have…
Was last night my last dose of MTX? Well, I have 7 days to decide. At least it would be a less painful break-up than with prednisone! Maybe I need talking off of a ledge? (my thinning hair and increased blood pressure may have triggered my rant)

The likes of Mr Lamb can probably explain better than I can why it’s considered a really good idea to take one DMARD alongside a biologic. Not only based on the science of the issue but also his own meds journey from memory. If I remember rightly for him, he doesn’t like to take folic acid with mxt either to improve its efficacy. So maybe he’ll jump in and explain.

Sadly I don’t take a DMARD. Mxt and me never got along at all. Sulfasalazine and me did but when I added in a biosimilar to Enbrel the two of them had an almightly row in my body and gave me 7 weeks of straight diarrhoea landing me in hospital. It’s a rare issue between the two meds apparently and unlucky me caught it. So since then I take no DMARD. I wasn’t offered leflunomide but would have refused to try it anyway. I loathe the idea that if something goes wrong with that one, you need the washout scenario.

I believe there is evidence that DMARDS help to stop you creating antibodies to the biologic thereby extending is effectiveness to you. However most of the tests used to see if you are creating antibodies to the boilogic aren’t really accurate enough. My rheumy refuses to use them saying there’s too many false positives and false negatives. However once you have created antibodies to the biologic the biologic stops working. And of course you can have the situation where like me you have to hunt some to find a biologic that wants to work for you in the first place. Remember I’m now on biologic number 3. Which is thankfully working very well as I head up to 13 months taking it.

It’s more normal though to only take one DMARD with a biologic and indeed often to reduce the dose necessary too. It seems you’re on two and at full dose so I’d question that bit first. And incidentally please don’t make any decision on your own, please initiate a decent conversation with your rheumy first. There’s nothing worse than a patient frolicking about making up their own decisions and then getting themselves into a needless mess. Don’t be one of those patients. You say you have a truly responsive rheumy now - so tell him what your present thoughts are. I’m sure he’ll find a way that makes better sense for you.

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@Poo_therapy is right Amos. It’s not just about the synergy, it’s also about preventing antibody development, which as I recall on Humira develops in around 4% with 10g MTX weekly, and 8% of those with no MTX. Though the nastier side effects are rare enough that makes the evidence is far from perfect, the theory goes that if you develop antibodies, not only is the drug more likely to fail, but you are more likely to get those nasty side effects. Lupus-like syndrome, demyelination (like MS).

Search up “Humira and possible rare side effects” and you should find a post from 2018 from me. It’s pretty understated as I didn’t want to scare people, but I had “mild” MS like symptoms for nearly 2 years before we figured out they were caused by Humira. So if you can reduce the risk of that without significant side effects, then it’s worth considering that.

It’s important to note that for this purpose, I don’t remember extra benefit from more MTX - you can check this with your Rheumy. Mine moved me from 20 down to 10 because MTX did nothing else for me.

Unfortunately I don’t really know if it would have stopped the side effects - I was really patchy about taking it during that period.

Needless to say, I’m religious now!

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Thanks for the replies, I’ve learned a few things that ease my frustration a bit. With the tight Covid lockdown, in person visits just don’t happen. My next rheumy appointment is at the end of January. I’ve probably had a few days of overdoing things thinking I can teach this damn PsA a lesson…“I’ll show you how hard I can work…take that PsA! I’ll walk as fast and far as I want!” Ya…kind of silly of me. Feeling another level of pain and new areas of hurting is just ticking me right off and MTX seem to be thinning my hair without visible positive side effects. Im still on 25mg MTX…but maybe that will be reduced. I really appreciate the dmard education.

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I thought the same till recently … lots of stray hairs everywhere, in my dinner (sorry!), all over the place … and a parting like a pink highway. But now I seem to be getting my winter coat. You men are not meant to care, but of course you do. Just thought you might like to know that this may be just a fluctuation.

And yep, chances are the Mtx could be reduced. I do okay on much less these days.

I’m not sure, but I think that adequate folic acid actually helps to prevent hair loss, amongst other things. Worth checking both the amount you take and whether there’s any truth in this with your rheumy.

I’m not really qualified to speak on these matters as I had an apparently rogue case of major hair loss when I stopped Mtx i.e. big bald patches. Plus an extensive psoriasis break-out. So for this reason I’m particularly wary of doing without the stuff.

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But you can still communicate with your rheumy on the phone and/or by email. Your concerns are really valid @Amos and discussing them with your rheumy without the face to face appt or indeed waiting till the end of January is surely permitted too?

Hair loss issues. - look up Nioxin shampoo, and look up biotin and there’s another supplement called Youtheory too I believe. All three might help.

We shed hair for all sorts of issues, the main one being seasonal as @Sybil says, which can sometimes be over enthusiatic too especially if things like stress and chronic pain are added in. Every single one of us has been hellishly more stressed this year due to Covid 19 just anyway and your pain levels certainly don’t seem well controlled yet. It’s a bit like a oak tree doing its ‘mast’ mass of acorns once every decade or so (there was one this year here and in the rest of Europe) and so too can seasonal loss of hair just shed too much as well. My guess is that’s it’s not really the mxt more likely lots of stress and pain as well as the seasonal fluctuations.

It’s so frustrating too, waiting for a med to work too like you’re doing now, when as the weeks go on it’s not quite yet doing what they said it would. So you get to wondering if it ever will. It’s like being perpetually in suspended animation - just waiting. Extraordinarily tedious.

As for teaching PsA a lesson - sneak up on it by pacing. Slowly but surely you can increment capacity that way. But again that’s woefully tedious to do too.

I can so remember being in that place. I’m not a patient person, I’m impetuous and impatient and enthusiastic. I like to make fast decisions and get on and just do things. So I spent a lot of time in tears of frustration but I’m also stubborn so I damned well paced and paced and then found I was making progress just anyway. I measured it obsessively and the slight increases in capacity did actually make me feel a lot better emotionally if nothing else. I’m just back from walking my dog and I was only thinking when walking him, how now I don’t need to worry about how far I should go today. The difference between me now and Autumn 2019 is truly quite extraordinary. So please have hope. Lots of it. And some cyber hugs too.

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So feel for what you are feeling now. Personally was horrified at idea of life long chemo after extensive bouts for breast cancer many years ago, a psychological crackdown at idea of continuing that period, even though cancer treatment doses are at a completely different intensity, and when 20mg dose made me lose my hair spoke to rheumatologist, freaked out, and he reduced dose to 10mg, resulting in visible hair loss stop. My misgivings regarding side effects of medication we use are sure shared by many of us, but my experience so far has me still using it after maybe 4 years. Had to stop two years ago to heal after femur graft operation and picked up again when was allowed. Cosentyx was working for me and antibody build up apparently could have led to relapse and other therapy experimentation for a new biologic. At the moment am having 85 per cent approx symptom success with combination of biologic, methotrexate, intermittent fasting and carnivore diet. Body and soul seem ok today, all the best.

Another point of interest on the subject, article came up yesterday on Italian media reporting initial success and testing with methotrexate use to treat serious issues in case of catching Covid. An Italian patient from an Italian rheumatologjcal patients group reported catching Covid even though was on methotrexate, but 1) she had recovered and 2) she had not needed hospitalization to recover.

Thanks to all for the good advice. I’m kind of shocked and maybe a bit embarrassed at how long its taking me to accept this disease as life long. I think in the back of my mind that treatment is temporary and I’ll just heal up…I always have from all sorts of bumps and physical issues. Maybe I’m just acting out against the reality thinking…sort of like “I feel like crap. give me antibiotics and in 48 hours it will go away”. So, while I waiting for “healing”, I’m impatient with the meds and having moments of doubting the whole process. Management not healing, right? Anyway…I just reordered 3 months supply of MTX and I’ll check in with the rheumy regarding dosage etc.

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Believe me it does take a long time to come to terms with this. And we all do it differently as well. There is no right or wrong way to come to terms with it either. But we all do know your struggle and can hear it.

@Poo_therapy is right. We all accept it differently, but honestly for most of us it takes a really long time. I think it’s fair to say I wasn’t real quick, after 12 months of sheer panic and “my life is over”, it then probably took me at least 5 years to even START to accept the medication, even at its best, was not going to “fix” me.

I still think it wasn’t an unreasonable reaction in the situation - and particularly to cross-reference @tamac’s post, when response is so variable, and it seems like some do get a fix, or at least close enough too, that sticks for many years.

We all want, and sometimes delude ourselves that’s us. I’m still doing it - I was working my leg so hard today (relative to what I should be doing) it precipitated a cramp the full length of my glute and hamstring. I can vouch that big-muscle cramps are pretty uncomfortable, not u to mention the complication that I was sitting on a horse and I didn’t quite know what the heck to do :rofl::rofl::rofl::rofl:

Thanks and its so good to hear that you are in the saddle! My wife and I both brought horses into our married life and would find a baby sitter for the kids so we could get out for a ride. We haven’t been able to ride for a number of years but have many fond memories. AND we shudder at how recklessly we rode through the bush trails at full gallop! Youthful abandon…thankful we could got away with it. I was 21 years old when I proposed to my wife 39 years ago…I didn’t have any money so I sold my prized Western roping saddle to buy her an engagement ring. I rode without a saddle for a year. It has been a worthwhile trade.
Cramps are so painfully weird! Yesterday I was helping a friend butcher a Moose and my left hand spasm pulled my thumb into my palm so tight and I couldn’t get it to release even after the muscle relaxed.
Its been good to hear that I’m not the only one that gets “waves” of medication fear. I think we all fear regret and don’t want to look back after many years and wish we had made a different decision. And it is difficult to trust science as it always is the truth in the moment but time changes the truth. Prednisone was given out like candy and at reckless doses but now is the one that is avoided…how do we know if 10 years from now MTX will be the nasty that should never have been given? Or Humira? Our options are really limited and none of us are in complete control of our future. So we choose to trust the current science and press on with hope…it beats the heck out of despair!
Apologies for the random nature of my post!

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This place is like a cultural exchange forum sometimes.

I’d prefer to talk about mooses, in a way. But as for Mtx, it has been around for a very long time, relatively speaking. The story of how it came to be used in rheumatology is interesting. As far as I know, back when it was used as chemotherapy (in much larger doses) doctors observed that cancer patients who also had RA etc. reported that their arthritis was improving.

And the biologics have now been around a fair while and are used very extensively worldwide. Any really significant long-term issues should have come to the fore by now.

Even so, I understand your concerns. I have many friends and acquaintances who ‘would never take prescription drugs long term’. They also tend to be people who don’t need to. I tell them that I really don’t want to take drugs either but I do because I have a condition for which there are potentially very effective drugs. And that sadly that is not the case with all chronic diseases by a long chalk.

I tell them that PsA has caused me fairly serious disability in the past and that I have reason to believe that it might well cause irreversible disability if I didn’t take the disease-modifying drugs.

By the time I’ve finished my little speech, they are usually nodding off but I have reinforced my own understanding of why I take these drugs. That is it … the drugs are relatively good ones and I don’t want my joints destroyed. I give myself this pep-talk when I start thinking that maybe I could ‘go it alone’.

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In November 2019 when faced with starting my 3rd biologic and feeling pretty awful PsA wise given the last time anything worked for me was the previous March, nonetheless I hesitated and then had a complete meltdown before I got over myself and went ahead. My fear then was what if I had horrid side effects like I did from Imraldi (Humira) again? I was astonished to get such side effects from biologics in the first place so they threw me significantly. And having had a major fight between Benepali (Enbrel) and sulfasalazine which hospitalised me the previous year, yes I was pretty scared really.

But here I am thankfully 13 months later doing fabulously. Phew! Back then though it felt like I was playing a nasty game of roulette. But as @Sybil says many of these meds have been around a long time and have been taken by millions all over the world. The fact remains that PsA is a significant and serious disease and actually we are incredibly lucky to have such an array of treatments. But getting our respective heads around both those issues just takes time. But we can do fabulously as I am currently and that’s thanks only to the science. The current science is pretty good too.

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I love this, so true :joy::joy:

Without those of you who have stayed in communication with Living With Psoriatic Arthritis even though feeling good, this site would have much less credibility. Thanks for staying around! I hope to do the same.
The only time that I have had a real break from the persistent pain in the last 2+years is when hit with 10 day stints of prednisone. But that mercy ship has sailed. Psoriatic ARSritis is a pain in the ass! (Quite literally right now)
Pressing on til the end of January rheumy appointment. Happy 10th anniversary!

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@Amos hang in! A MAJOR part of our treatment lies within our coping mechanisms, both emotionally and practically. Especially since every body is so different and there are so many treatments available now and in future.

It makes all the sense in the world to feel the way you do. We live with an incurable disease that can cause disability, and it confusingly often looks different from day to day. We have other people telling us how it “should” feel, what treatments “should” work, what the drugs “should” feel like. It sucks, no way around it. It is often invisible, especially if you have limited skin involvement, so we can have the added burden of “proving” to ourselves and others that the disease is “real.” That alone can really mess with your mind. Also it is a horrid thing to deal with when pain migrates, fatigue eats you up, mood holds you back. I think possible mental changes should always be included any medical discussion of PsA and I’ve noticed over the years that this language has gotten more consistent and holistically part of it, though maybe that’s only my experience.

Give yourself a break! You are dealing with a shit ton. And if you’re anything like me you come across random people in life, acquaintances, doctors, whoever, who play down the seriousness of the disease and the drugs we take. That kind of undermining is seriously damaging, and not just mentally:

My old rheumy described how she often saw patients with overuse/strain injuries because of how many of us push past our limits because we might feel a little better when we warm up, or try to keep up with those around us. Go go go and then you cross the line and hurt something. The same doctor also told me i should have no limitations. I understand what she meant, but practically speaking this language is unhelpful. It’s important to set reasonable expectations through reasonable limitations rather than getting hurt because we “shouldn’t” have limitations. Promising us that we can go back to our old lives is misleading and probably unethical.

I myself have had a really difficult time hearing these contradictory statements from professionals. To me it’s evidence that they might not fully comprehend what is like to live with PsA, again not necessarily a dealbreaker but definitely a red flag if it is matched by an inability to listen. These are the kinds of things that drive me crazy. The way a doctor can go from sounding so confident when they feel they have the answers to flipping the switch and saying well, we don’t have all the answers when an issue arises they can’t explain. Again, I think this is the kind of stuff we as patients have to deal with that go a long way to undermining our own mental health, that lead to all these useful questions. We should be questioning everything we put in our body, especially when it’s other people telling us to do it.

Trust yourself and your body. You are the only one who experiences PsA and treatments the way you do and the only one who knows how your body and environment affects these things.

Surround yourself with love. If ANYONE in your life cause you stress over your health, then at minimum don’t discuss with them. And maybe consider if they are truly your friend (or a good doctor) and if they truly have a place in your life. I’m not suggesting you have to wholesale cut people out of your life. We all have well meaning but brutish folks offering input. My advice: unless they are your trusted doctor or your most trusted loved one then don’t feel like you have to listen or defend your choices. Sometimes you’ll be in the mood to educate another about your condition, and other times you’ll want to shut down. Both are ok.

Everybody loses ability over time. Some of us just lose it faster… I’m a professional pianist. PsA nearly destroyed my life, physically and emotionally. Forget my hands - I can’t even sit long enough to practice due to SI pain. It’s taken me years and years and years to accept this. I even forced myself into a masters program to “prove” that I could do it. One of the hardest things I’ve ever accomplished but I think making that challenge, doing it unapologetically on my own terms, and seeing the doors open with that degree has given me a lot of strength. Now, would I do it again? I’m not so sure, but I’m glad where it got me…i make a living through piano which is a blessing, but guess what? Now I’d rather be in the garden.

You’ll deal with a lot of questions, scrutiny, judgment. There’s always gonna be someone saying you should be experiencing life X Y Z ways but these people are just closed to the possibilities that exist for YOU in YOUR life. They only have their perspective. And we have ours. Again, trust yourself.

We with PsA also can have a sped-up physical timeline, encroaching disability or what have you, and we can either ruminate on that or we can get on with it. Where once I was depressed because I lost the musical career i knew, I came back like the proverbial phoenix when I realized that as a human being I have other interests and abilities. I had never wanted to or thought I could be a good teacher. Now it is my passion and actually affords me a better and more relaxed life. Not always easy, not always doable, but compared to the alternatives it’s my best option. A perspective change may not be easy but it may be necessary. Again, doctors and drug companies push the narrative that we should be running through fields of daisies with zero limitations in our life with their help. It’s not reality, and it shouldn’t even be a goal necessarily. Finding a “new normal” should be. I don’t say this to be negative. I say this because I think we PsA patients have to deal with a lot of unreasonable expectations and I think it’s time we insist on ones that are a bit more rooted in each of or personal experiences.

Nearly a decade after my diagnosis and I’ve learned so many wonderful silver linings and I’d like to share them. We all have a different experience, yet all of our experience is painful. Pain provides a pathway for empathy. Limitations and boundaries don’t have to be negative things. I used to be such a pushover of a person, generally submissive to others around. Now I do want i want how I want when I want with who I want (all because of what I learned with PsA) and I’ve never been happier. Even though physical symptoms are consistently disabling I’m happy because I exert some control over my life, even if I don’t have complete control over everything, like PsA.

Figure out who in your life helps and who doesn’t. Physically and spiritually. We all have different roles for all the different people in our lives. Maybe you have a friend who is a great listener but can’t help with the physical stuff. Or vice versa. Don’t mix the two unless you know you can. I figured this out after a lifetime of trying to communicate verbally with my dad, failing to do so effectively, and ultimately feeling bad about it until it dawned on me that he’s so old school and the only real way he demonstrates his love is by doing, helping physically. He may say insensitive things but it doesn’t mean he doesn’t care. Acceptance brings peace.

What does this mean? Am I suggesting that we focus on the transactional nature of our relationships? Well, yes, why not. We are all here to help each other, in different ways. We don’t live in vacuums. I’m also suggesting that we bear responsibility to ourselves and to others to only commit to doing what we are capable of and accepting of those things we aren’t. We’ve gotten so inundated (in the US, at least) with messages of personal and individual responsibility that I believe that many of us here actually have not learned healthy skills regarding interpersonal help and that these messages have crept down into our personal lives, making us feel even weaker and more pathetic for needing to rely on the community, rather than empowered.

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And none of my post mentions mtx, which I took for years despite complaining about side effects. Apologies!

My whole ramble was to say “trust yourself”. 25 mg Mtx may have helped humira work for me, it might have slowed the disease, whatever, but it also made me feel like garbage. My rheumy was unable to accept this for years until she finally switched me to 2000mg daily sulfasalazine. It doesn’t feel as effective, but it also doesn’t cause noticeable side effects like mtx. Except for super yellow pee lol

I think rather than weighing hypotheticals you would do better to weigh reality. An updated version of the benefit/risk profile: what are the felt benefits weighed against the felt negatives? Based on what YOU know and feel?

Thanks @gianduio for taking so much time to share your thoughts and information. Much appreciated. I’m slowly learning the benefit of preventative living rather than reactive and regrettable living. I applied for a permit to use a crossbow for hunting because I can’t draw back on a regular bow without feeling like something is going to tear in my elbow and shoulder. My rheumy was very supportive and said it was a good move…he sees too many who have damaged themselves by not being proactive enough. So he signed the official paper work application and checked the box, “permanent disability”. My last rheumy said my PsA was temporary.

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Good luck with the crossbow @Amos ! I think it’s so great that your doctor is on your side. I think so many are afraid to engage with the semantics of the term “disability”

There are shades of gray to the term and I think it’s important for us to be able to rely on it as needed.

For example I’m not about to declare myself fully disabled in order to stop working and take government cash, but I did work with my doctor to get him to sign a piece of paper that helps me get subsidized transportation and housing. This allows me to keep working - because these costs are lower for me, I can continue to work at a pace that is acceptable to me ( basically 25 hours) a week while comfortably covering my rent and ride to work, and will continue to pay taxes and contribute in that way.

I am unable to work enough to pay full rent and transportation costs, but I’m well enough to do some of it without being an unnecessary burden to the system or having low self esteem issues because of it. It’s a game - ethics, money, politics, self worth and disease all dance an intricate dance. I think sometimes doctors think of disability as “all or nothing” and I believe this attitude HAS to change, particularly in light of how much of a rollercoaster it is to live with an autoimmune condition.

Anecdote:
I just met a guy who is on full disability because he got into a drunk driving accident and apparently found a doctor willing to go to bat for him. The doctor said he could just check in every week and if he feels pain they’ll extend his disability claim for the week. Now, I’m not a violent guy but the rage I get when I heard this story most have been palpable - It took everything in my power not to haul off and give him another disability. Like, I’m sorry for your accidente, dude, but honestly you made a terrible DECISION that you are expecting the state to pay for. So gross. People are so gross and awful and I just use this example to bitch how these buttheads make it harder for the rest of us. Like all the dope fiends who created a problem with opioids and have made them so hard to come by for those of us who may benefit from them from time to time. It’s an unfair game and we just gotta do what we gotta do. Things are stacked against us. I’m not saying this to be negative, but rather to adopt the attitude that we’re also allowed to seek changes in our life, that we didn’t DECIDE to have this condition but we have to DECIDE how to live with it and often these decisions are taken away from us, or at least attempted.

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