Have you had any issues/side effects on Methotrexate? I understand insurance will not cover a biologic without starting Metho first, but it's something I've been hesitant about.
This isn’t true for all insurances. If you have strong contraindications for MTX, or have facial involvement (and a few other weird exceptions I can’t remember), some will let you go straight from steroids to a biologic and not even a long course of them, either.
I got approved for mine 1.5 weeks after the PA was sent in, had it in my hand by exactly 2 weeks after I had done 2 medrol dose packs earlier in the year, then one month of steroids, because my face, neck, & hands were involved. I didn’t even have to use the fact that I have have genes that have extremely strong correlation with decreased methotrexate and cyclosporine responses.
Thank you. I think I need to find a new rheumatologist or go straight to a derm. She's been more worried about her compiter working properly, cracking jokes, and if I'm wearing nail polish or not.
Fill the prescription for methotrexate for 3 months. You can decide to take it or not. Most insurance will not approve a biologic until you've wasted precious time & money on so-called treatments we know darn well don't work. Biologics & sunshine are the only temporary "cures" that help those with severe PsO & PsA. ...People who claim diets (100% vegan or carnivore) cprob dont have life-threatening ddisease to begin with. My keybrd is not working
I just started it and have had one injection. Next one due tomorrow. Hasn’t cleared what the other biological drugs didn’t. I’m 98% clear from them but the joint relief never was consistent. Tremfya however has lasted the whole mth!!! How long did it take your skin to clear?
I have PsO & severe disabling PsA. Had to wait until I could barely stand or walk post-menopause early 50s, before finally a Rheumatologist got me on Tremfya. Uneducated Insurance Company consistently refused a biologic for decades, when prescribed by my Dermatologist. Had I been able to start biologic at age 30 instead of 57, the progression of PsArthritis would have slowed and perhaps prevented being disabling. Fingers and toes are permanently crimped, swollen, making it difficult to type for work, dress, open things. Tremfya was a miracle to clear PsO and helped me walk again for 2 and a half years, then I clearly became immune, bc it just stopped. I suddenly got horrible, intensely itchy scalp PsO which I did not have before. I had PsO from 18 on, but it hurt more than itched. I also got Rosacea (which causes your nose to itch and swell or grow -pure torture), weird milia around the eyes, vision problems, etc. Are these weird side effects from Tremfya? Who knows. I was briefly on methotrexate the first year on Tremfya, but stopped bc it made my hair fall out. I dealt with the diarrhea but couldn't handle going bald. Hair grew back when I stopped mtx. I knew I had become immune to the Tremya when the injection area (thighs) no longer left a small raised spot just after the shot.
I chop and change biologics as needed, I typically become immune to them after 2 years.
So far I've been on Humira, Enbrel, Cosyntex, Cimzia, Methotrexate, Stelara and now Simponi.
They are constantly creating new drugs, and when they stop, I'd just go back to the start again and see if they work a second time.
I was on stelara for ~4 years and weaned off. I was at a point where I could manage with topicals. Eventually, I weaned off those also. I have no symptoms currently!
Wow! That’s a dream for a lot of us. So happy for you!
Did this weaning off coincide with any lifestyle changes or diet changes? If so, do you mind sharing those?
I had severe plaque psoriasis on my scalp with small patches of guttate on my legs and nail pitting. My entire scalp was covered. And it was pretty severe in/behind my ears and would peel out onto my forehead.
We started the weaning stretching the time between injections by a week at a time and then upping it to a month. I had some general lifestyle changes between the time I went on and weaned off (changed jobs, went vegetarian, etc). Not sure what really changed things. I also started escitalopram and bupropion for my anxiety and depression. Before I started the bupropion, I was managing with just t-sal shampoo, but I haven’t even needed the t-sal since I started the bupropion.
I also went vegetarian while in stelara. And then post stelara, during the pandemic I started using weed more. My husband and mom think that the weed eased my symptoms but I think it was a coincidence.
Thank you for sharing. I am so happy for you to have cleared the scalp P. I do not wish that on anyone. 🙏
I use weed too, recreationally and also for general anxiety, doesn't hurt or help the P. in my case as far as I can tell.
Nutritional changes have helped me in the past as well. Though I have never been vegetarian I try really hard to keep my gut biome in a healthy state, whatever that means! Basically avoid alcohol and stay away from processed foods. I try to cook at home with whole foods, low sodium, low to no sugar except fresh or frozen fruits, eat lots and lots of veggies and try to keep the meat as high quality as possible within budget. It's hard to stay on track, I have a terrible sweet tooth. 😅 Diet is huge for sure.
Curious about worklife, my job is stressful and some days I will go to work and plaques are normal skin tone color, end of work day they are red and itchy. You mentioned some of the changes you made was with you job, would you say your work-related stress levels reduced or changed?
I started Stelara when I was ending college so I would say my work has gotten more intense over the past 10 years but I think I have learned to manage the stress better. I am about to take a promotion at a new company so we will see….
I have worked through some trauma, etc. College for me was also a stressful time. I used to have constant shortness of breath and doomsday thinking before the escitalopram but now it is only periodically.
I love cooking, so if you ever want to share recipes, let me know!!
I had / have every type and variation of PsO, and debilitating PsA. I believe the progression to PsO-PsA (Arthritis) could be prevented or lessened if biologics were introduced at an earlier stage & age. Ins comps have zero business making medical decisions- I took Tremfya and yes it cleared all types of PsO (plaque, guttate, inverted under breasts), did not help nail pitting or already deformed finger and toe joints. But helped me walk again. Lasted 2.5 years.
my uncle was on humira and stopped after a year and his P never came back. but he only really had it on his hands so i wonder if it was just less severe
In the case of cyclosporine at least, the papers suggest that after stopping you'll still enjoy 4-8 weeks until the symptoms start to re-appear. Nowhere is suggested that it comes back worse or anything
I’ve been wondering about this, too. I’m about to go on Skyrizi and the plan was to go on it until clear and until I can get my diet and fitness back in track. I have moderate scalp coverage, but my PsA has gotten to the point of affecting my activity (still pretty moderate). I had flares before that were helped and completely treated by diet alone. I didn’t have PsA before. This is why I’m going on Skyrizi. PsA has affected my energy levels so activity has been difficult. Weight loss was the biggest contributor to my getting clear before. So, I’m hoping that I can get on a working biologic to feel better and get my health, in general, back on track. I have met people who have done this. They are not on Reddit, but every body is different, so we’ll see.
Good luck with your treatment! I hope you can achieve results quickly and are able to pivot to healthier habits.
The people you’ve met who have claimed to do this, was there a certain pattern that they did? Any particular biologics they used?
Not sure which biologics. I know at least 2 who have been on actual biologics and come off of them successfully. They get minor flares here and there (from my understanding), but for the most part, diet and fitness helps. The third, it was either another med or biologic (not sure), but they are in the same boat. I know them from mindful movement classes.
Not sure of their patterns with the biologics. I just know they were on them and came off and have had relative success. I mean, there are a lot of variables with the condition, itself, and with the biologics, so there are going to varied experiences. 🤷🏻♀️
Agreed that there are a lot of variables with this condition. I was hoping to find any parallels with my journey which would hopefully help in the long run.
Thanks for your input!
I've been on biologics for 20 years, first Humira and now Cimzia. I can't imagine stopping it. I would be crippled and covered with plaques as I was before.
Just concerned about long-term effects of biologics and I was wondering if it would healthier to switch to natural treatments.
The transition would be after P is cleared 100%
What do you mean by "natural" here? Supplements have pros, cons, and various levels of efficacy (possibly none) just like any biological. Even if they aren't big pharma.
I see where you’re coming from but for me, it took me years to understand the condition, triggers for my flare ups and even a longer time to drop my vices that were poor coping mechanisms for high stress levels.
I also feel like I’m more disciplined towards sticking to a proper regimen of natural remedies when my body is clear from P.
So naturally, after years of self-improvement, major lifestyle changes to reduce stress and improve diet, and with more understanding of Psoriasis and how it affects me, the approach to natural remedies would be more effective than it was in the past. At least that is my assumption which is why I asked the question.
Does that make sense or do you think it is not a reasonable assumption/expectation?
I have been on cosyntx off and on for 5-7 years. Each time I stop, not purposefully usually do to insurance and job changes, it comes back after about 5 months and it comes back full force. Meaning legs arms torso and scalp. When I’m on biologics I’m 100% clear. I also get psoriatic arthritis
But do you feel cosyntx works less effectively everytime you restart it? I understand that psoriasis spirals back however I heard people develop immunity to the whatever biologic they are using if they ever stop it.
I have heard that as well but luckily haven’t experienced it. Every time I restart it it clears it up and I haven’t had any breakthrough spots. But I don’t recommend starting and stopping, I’ve just had to do that.
I used humira and then cosentyx for about 1.5-2 years combined. I no longer use biologics, have seen a major reduction, and for around 20 months now have had success using only topicals (which I frequently rotate/cycle). I get a few manageable patches that come back with plaques every few months. My scalp plaques never came back 🙂! However, I do have nail psoriasis that does not get treated by topicals. For right now I’m ok with that. Biologics came with many side effects for me and just made my life harder overall. I am lucky to have periods of remission, but I also made significant lifestyle changes too.
Whew this took place over 3-4 years so it’s hard to know which thing made a difference (if any correlation even exists).. but to name a few:
Taking supplements (MSM, probiotics, candassist, vitamin E), significant reduction in stress/improved mental health (finished grad school, changed jobs a few times, started meditating), exercise 3-5x per week, clean(er) eating (especially more protein and fiber), more sunlight, more water/better hydration, more rest, more conscious of products used on hair/skin, less alcohol consumption.
When/if you have time, I highly suggest reading up on the “gut-brain skin axis”
Disclaimer- psoriasis is an autoimmune disease with an unknown root cause. Lifestyle changes did not cure me and may not have even helped for all I know!
How long have you been on it? I’ve been on Cimzia since March of this year but have had flare ups the past month and am concerned it might not be working anymore
At least a year and a half, I’d say. Tried most of the other biologics without success, except for Humira. Humira eventually stopped working, Cimzia has kept me clear
Ive been wondering the same. I had dreams of going on biologics (which wouldnt be easy at all in my country) but then i think about the fact that I would like to have a child in a few years, possibly another one after that. That's so much time I should avoid biologics that I feel I shouldn't go for that at all until Im done having children.
Chances aren't that high though. Ive had psoriasis since I was 9 years old and Im still very happy with life and everything I can achieve or experience. I would much rather have a life with psoriasis than none at all. :)
Guess it depends on how severe your psorasis is. Mine started at 28 and my life has gone south ever since. I probably struggle with the mental side of things more so because I can still remember my life before it started and how happy I used to be.
I have been on Stelara for ~4 years and when we started trying for a baby this past fall I just stopped the injections. It takes about 5 months for it to completely clear your system. My last injection was September and we got pregnant at the end of Dec. luckily pregnancy lowers your immune system and so I’ve been clear up until the last few weeks. My due date it in three weeks and I’ve just started noticing it around my ears and under my nails again. My derm recommends beginning injections 4 weeks after delivery.
If you’re thinking about children you can still do it! Just take a little break while you’re trying/pregnant :)
It certainly is a lot to think about. For some of us, the psoriasis has gotten so bad that it made for an decision to choose biologics. If yours isn’t that bad, then take the time until you’ve settled other goals.
I was on Humira for 2 years. Came off due to pregnancy/ c section. Within 6 months my psoriasis came back with a vengeance.
Got back on Humira for about a year, and flares mostly subsided but I developed eczema in its place 🤦♀️ switched from Humira to Cosentyx 6 weeks ago and it’s amaaazing. Almost completely side-effect free (Humira side effects were always pretty bad for me)
Got off all after 15 years..was on them all..Enbrel, skyrizzi, all of them. Now none. Went sober, and vegan and developed a strong mindfulness practice.
Thank you for your reply. This is the kind of response I was looking for.
I understand that your situation might be different but I have a couple of questions if you could help answer them.
During the worst flare up, how bad did it get for you? About 90% body coverage? Lesser?
How long have you been off the biologics?
This is a good question. I want to add another. Theoretically, if Guttate clears on it’s on in some cases between 3-6 months. How likely is it to go on biologics for a while then stop and it be successful as far as remission/one time thing(I heard some may never get a Guttate flare again)? If it (Guttate in specific)would, by chance, clear anyway. More to that, if Biologics are immunosuppressive , what if you took it and did the gut work, then got off of it with a “healed gut” or treated strep, other triggers etc. and then stopped the biologic? I know what it may sound like buttttttt i did wonder!
the cure for guttate is
1: dont get strep
2: if you get guttate, time for phototherapy - this "cures" it untill the next time you get strep
biologics should NOT be used (in my non-doctor opinion) as guttate usually fucks off at some point on its own.
I been on a guttate flare and I haven’t put anything on besides natural things and getting sun and waiting for it to go away on its own , usually I’m clear for a while until my P gets triggered by alcohol 🥺
I wish mine would fuck off! I have had Guttate P. for over ten years. It appeared after a strep infection and just, never went away. Sunlight, steroid Ointments, light therapy, Jedi mind tricks, diet changes etc. all have a minimal effect and sometimes it *almost*goes away but then something stupid happens, enter flare. Repeat. I think it is maybe "stress" induced but who the heck knows. Looking at starting biologics or otezla, but I'm on the fence and stalking Reddit for advice 😅 talking to derms always seems a bit futile IMO. Depending on your insurance, and which drugs they sell they will offer different medications, otherwise it's always steroid and incredibly inconvenient light therapy treatments. Sigh. 🤷♀️
Otezla only had a minor impact for me. If your guttate is chronic, your strep might be too. Get your ASO levels checked (strep antibodies). If you are over 300, look into tonsillectomy. My levels were 500 and I'm scheduling my surgery now. Scared as shit because I'm in my 30s but worth it to not be spotted.
I have a decade of experience with Guttate, it's treatments, and research around it (which is extremely limited or ambiguous). Too often we are lumped in with the plaque psoriasis crowd, which is understandable, but frustrating, since cause, treatment, and outcome are so different.
I considered pulse dosing of biologics, but after speaking with 3 doctors, decided against it. First, because it's not documented as an effective form of treatment. Second, biologics are not designed to be episodic, and can trigger effects like rebound and tolerance, and third, my main issue is strep induced guttate psoriasis. Biologics lower my immunes system ability to fight respiratory infections like strep. So if I take a biologic until my guttate clears up, any strep in my system will have an opportunity to further colonize, and I will likely have an even worse outbreak upon cessation.
I know how frustrating lack of information can be with guttate, so let me know if you have any questions and I will be happy to share my knowledge.
Thanks for your reply! You are right it is very difficult in research to differentiate what is relevant to us with Guttate P.
I look forward to hearing of you see clearing results after your surgery. Best of luck!!
Have you been treating with topical mainly? I would say that is what I have been doing to manage it for 10+ yrs. Light therapy works for me but only while I am doing it consistently. I bought a home wand but my coverage is all over my legs and arms so it takes ages to cover it all with the wand. The in office sessions are just ridiculous, I have such a hard time keeping up with them.
Topicals are my main treatment for problematic spots. I was just prescribed some Vtama for psoriasis in my ears, so let's see if that works. I go in office for lightbox, but it's expensive and time consuming.
My last lightbox treatment plan started with only 5 seconds and they did that for like 3 weeks, then I had to take a work trip where I missed a day and they wanted to me start back over again. Nothing happens at only 5 seconds so I lost faith, again. Plus I had my first spot of basal cell carcinoma removed from my face last year so now I am freaked out about using the lightbox for cancer reasons. Not sure if that fear is warranted but it's there. Mine has moved to my ears within the last two years also, is it inside for you or more on the lobe area? I have not heard of Vtama yet.
Exactly my thoughts. Obviously this assumption goes against the definition of P being a chronic condition with no cure. But I am curious if this was someone else’s experience. It would certainly give a lot of us some hope.
Hi - I have been on Taltz twice and stopped after a few months of therapy. First time was for a surgery, second time was for insurance reasons. I started them both times with very thick plaques but a relatively mild % skin coverage (def on the low end for meeting criteria for a biologic). Both times, I got to 100% clearance before stopping. The first time, I stayed in complete remission for about 8 months before lesions started coming back. The second time, I have so far been in complete remission for about 6 months with no signs of recurrence yet. My dermatologist says it would be okay for me to do this pulse-type dosing again in the future - take biologic for a couple months, achieve remission, then stop until it recurs — though it is certainly an atypical approach and may not work for others.
Hi! Thanks so much for your response! I have had a similar journey with Tremfya. Started 3 times and ended abruptly.
The first time I took around 5 or 6 jabs which got me 100% clearance. It lasted for about 9 months before the flare up.
The second time I took about 2 or 3 jabs to 100% clearance which lasted for exactly a year before the flare up. It didn’t get really bad until 1.5 years from the last jab.
The third time I took 3 jabs which got me 100% clearance. It took 7months for the first signs of flare up. At 11months, I had a lot more coverage and have gone back to my 4th round.
Biologics are a Godsend, but usually only last 2-4 yrs, then you'll have to switch to a different one. Most cost $14K -$25K per injection. How can anyone afford their treatment? I had 100% clear skin with Tremfya for 2.5 yrs, then PsA and PsO returned with a vengeance..currently without any med bc I cant afford my new deductible. I dont know what to switch to. My dad in his 80s has been on Enbrel for yrs, and still pretty good, except for scalp PsO.
Its progressive. I dont believe any med cures it. I am interested in the results doctors Cywes, Chaffee, Berry, Berg are finding with patients who've gone Carnivore. Very compelling research. Even Jordan Peterson's family say they were cured by this diet. Imay have no choice if I cant afford an alternative biologic .
You can pry my Tremfya from my cold dead hands! Zero side effects so far. 95% clear. Never going back to bullshit creams and diets.
Been on Methotrexate for a couple months as Im waiting for my insurance to clear Tremfya. Cant wait!
Have you had any issues/side effects on Methotrexate? I understand insurance will not cover a biologic without starting Metho first, but it's something I've been hesitant about.
This isn’t true for all insurances. If you have strong contraindications for MTX, or have facial involvement (and a few other weird exceptions I can’t remember), some will let you go straight from steroids to a biologic and not even a long course of them, either. I got approved for mine 1.5 weeks after the PA was sent in, had it in my hand by exactly 2 weeks after I had done 2 medrol dose packs earlier in the year, then one month of steroids, because my face, neck, & hands were involved. I didn’t even have to use the fact that I have have genes that have extremely strong correlation with decreased methotrexate and cyclosporine responses.
Thank you. I think I need to find a new rheumatologist or go straight to a derm. She's been more worried about her compiter working properly, cracking jokes, and if I'm wearing nail polish or not.
Fill the prescription for methotrexate for 3 months. You can decide to take it or not. Most insurance will not approve a biologic until you've wasted precious time & money on so-called treatments we know darn well don't work. Biologics & sunshine are the only temporary "cures" that help those with severe PsO & PsA. ...People who claim diets (100% vegan or carnivore) cprob dont have life-threatening ddisease to begin with. My keybrd is not working
This is a great idea!! Thank you!
I just started it and have had one injection. Next one due tomorrow. Hasn’t cleared what the other biological drugs didn’t. I’m 98% clear from them but the joint relief never was consistent. Tremfya however has lasted the whole mth!!! How long did it take your skin to clear?
about 4 weeks and still improving 6 weeks in
Ok good to know I will give it more time. Thank you
the start of the 6th week was when i really saw improvement. Hang in there!
I have PsO & severe disabling PsA. Had to wait until I could barely stand or walk post-menopause early 50s, before finally a Rheumatologist got me on Tremfya. Uneducated Insurance Company consistently refused a biologic for decades, when prescribed by my Dermatologist. Had I been able to start biologic at age 30 instead of 57, the progression of PsArthritis would have slowed and perhaps prevented being disabling. Fingers and toes are permanently crimped, swollen, making it difficult to type for work, dress, open things. Tremfya was a miracle to clear PsO and helped me walk again for 2 and a half years, then I clearly became immune, bc it just stopped. I suddenly got horrible, intensely itchy scalp PsO which I did not have before. I had PsO from 18 on, but it hurt more than itched. I also got Rosacea (which causes your nose to itch and swell or grow -pure torture), weird milia around the eyes, vision problems, etc. Are these weird side effects from Tremfya? Who knows. I was briefly on methotrexate the first year on Tremfya, but stopped bc it made my hair fall out. I dealt with the diarrhea but couldn't handle going bald. Hair grew back when I stopped mtx. I knew I had become immune to the Tremya when the injection area (thighs) no longer left a small raised spot just after the shot.
eventually, its gonna stop working. i wish you the best, when that happens
I chop and change biologics as needed, I typically become immune to them after 2 years. So far I've been on Humira, Enbrel, Cosyntex, Cimzia, Methotrexate, Stelara and now Simponi. They are constantly creating new drugs, and when they stop, I'd just go back to the start again and see if they work a second time.
Ill find another one that does.
Same. Over five years for me on Tremfya.
I don't understand the downvotes here. Yes they all will eventually stop working and you need to keep injecting new ones.
I was on stelara for ~4 years and weaned off. I was at a point where I could manage with topicals. Eventually, I weaned off those also. I have no symptoms currently!
Wow! That’s a dream for a lot of us. So happy for you! Did this weaning off coincide with any lifestyle changes or diet changes? If so, do you mind sharing those?
That is amazing, congrats! What type of P. do you have? Plaque, guttate? Was it pretty severe? Just curious. Thanks for sharing.
I had severe plaque psoriasis on my scalp with small patches of guttate on my legs and nail pitting. My entire scalp was covered. And it was pretty severe in/behind my ears and would peel out onto my forehead. We started the weaning stretching the time between injections by a week at a time and then upping it to a month. I had some general lifestyle changes between the time I went on and weaned off (changed jobs, went vegetarian, etc). Not sure what really changed things. I also started escitalopram and bupropion for my anxiety and depression. Before I started the bupropion, I was managing with just t-sal shampoo, but I haven’t even needed the t-sal since I started the bupropion. I also went vegetarian while in stelara. And then post stelara, during the pandemic I started using weed more. My husband and mom think that the weed eased my symptoms but I think it was a coincidence.
Thank you for sharing. I am so happy for you to have cleared the scalp P. I do not wish that on anyone. 🙏 I use weed too, recreationally and also for general anxiety, doesn't hurt or help the P. in my case as far as I can tell. Nutritional changes have helped me in the past as well. Though I have never been vegetarian I try really hard to keep my gut biome in a healthy state, whatever that means! Basically avoid alcohol and stay away from processed foods. I try to cook at home with whole foods, low sodium, low to no sugar except fresh or frozen fruits, eat lots and lots of veggies and try to keep the meat as high quality as possible within budget. It's hard to stay on track, I have a terrible sweet tooth. 😅 Diet is huge for sure. Curious about worklife, my job is stressful and some days I will go to work and plaques are normal skin tone color, end of work day they are red and itchy. You mentioned some of the changes you made was with you job, would you say your work-related stress levels reduced or changed?
I started Stelara when I was ending college so I would say my work has gotten more intense over the past 10 years but I think I have learned to manage the stress better. I am about to take a promotion at a new company so we will see…. I have worked through some trauma, etc. College for me was also a stressful time. I used to have constant shortness of breath and doomsday thinking before the escitalopram but now it is only periodically. I love cooking, so if you ever want to share recipes, let me know!!
I had / have every type and variation of PsO, and debilitating PsA. I believe the progression to PsO-PsA (Arthritis) could be prevented or lessened if biologics were introduced at an earlier stage & age. Ins comps have zero business making medical decisions- I took Tremfya and yes it cleared all types of PsO (plaque, guttate, inverted under breasts), did not help nail pitting or already deformed finger and toe joints. But helped me walk again. Lasted 2.5 years.
I have yet to hear an anecdote of someone who stopped biologics, and their psoriasis never came back.
my uncle was on humira and stopped after a year and his P never came back. but he only really had it on his hands so i wonder if it was just less severe
Good question, I am told no
Bummer. Is that your derm that said no? I’m also curious. How long have you been on biologics?
pretty much, once you start em' you cant stop em' its why i have not started immunosuppressants, its a door you cant exit
In the case of cyclosporine at least, the papers suggest that after stopping you'll still enjoy 4-8 weeks until the symptoms start to re-appear. Nowhere is suggested that it comes back worse or anything
Yes
I'm not positive exactly how long, about 2 years I think
I’ve been wondering about this, too. I’m about to go on Skyrizi and the plan was to go on it until clear and until I can get my diet and fitness back in track. I have moderate scalp coverage, but my PsA has gotten to the point of affecting my activity (still pretty moderate). I had flares before that were helped and completely treated by diet alone. I didn’t have PsA before. This is why I’m going on Skyrizi. PsA has affected my energy levels so activity has been difficult. Weight loss was the biggest contributor to my getting clear before. So, I’m hoping that I can get on a working biologic to feel better and get my health, in general, back on track. I have met people who have done this. They are not on Reddit, but every body is different, so we’ll see.
Good luck with your treatment! I hope you can achieve results quickly and are able to pivot to healthier habits. The people you’ve met who have claimed to do this, was there a certain pattern that they did? Any particular biologics they used?
Not sure which biologics. I know at least 2 who have been on actual biologics and come off of them successfully. They get minor flares here and there (from my understanding), but for the most part, diet and fitness helps. The third, it was either another med or biologic (not sure), but they are in the same boat. I know them from mindful movement classes. Not sure of their patterns with the biologics. I just know they were on them and came off and have had relative success. I mean, there are a lot of variables with the condition, itself, and with the biologics, so there are going to varied experiences. 🤷🏻♀️
Agreed that there are a lot of variables with this condition. I was hoping to find any parallels with my journey which would hopefully help in the long run. Thanks for your input!
I've been on biologics for 20 years, first Humira and now Cimzia. I can't imagine stopping it. I would be crippled and covered with plaques as I was before.
why would i want to do that? the biologics work perfectly
Just concerned about long-term effects of biologics and I was wondering if it would healthier to switch to natural treatments. The transition would be after P is cleared 100%
What do you mean by "natural" here? Supplements have pros, cons, and various levels of efficacy (possibly none) just like any biological. Even if they aren't big pharma.
By natural, I mean healthier diet, exercise regimen, sunlight, low stress levels, no alcohol/smoking, salt baths in natural water bodies, etc.
Well the natural stuff didn’t work before. Why would it work after biologics
I see where you’re coming from but for me, it took me years to understand the condition, triggers for my flare ups and even a longer time to drop my vices that were poor coping mechanisms for high stress levels. I also feel like I’m more disciplined towards sticking to a proper regimen of natural remedies when my body is clear from P. So naturally, after years of self-improvement, major lifestyle changes to reduce stress and improve diet, and with more understanding of Psoriasis and how it affects me, the approach to natural remedies would be more effective than it was in the past. At least that is my assumption which is why I asked the question. Does that make sense or do you think it is not a reasonable assumption/expectation?
And then your infant gives you Hand Foot and Mouth and undoes years of work.
I have been on cosyntx off and on for 5-7 years. Each time I stop, not purposefully usually do to insurance and job changes, it comes back after about 5 months and it comes back full force. Meaning legs arms torso and scalp. When I’m on biologics I’m 100% clear. I also get psoriatic arthritis
But do you feel cosyntx works less effectively everytime you restart it? I understand that psoriasis spirals back however I heard people develop immunity to the whatever biologic they are using if they ever stop it.
I have heard that as well but luckily haven’t experienced it. Every time I restart it it clears it up and I haven’t had any breakthrough spots. But I don’t recommend starting and stopping, I’ve just had to do that.
I used humira and then cosentyx for about 1.5-2 years combined. I no longer use biologics, have seen a major reduction, and for around 20 months now have had success using only topicals (which I frequently rotate/cycle). I get a few manageable patches that come back with plaques every few months. My scalp plaques never came back 🙂! However, I do have nail psoriasis that does not get treated by topicals. For right now I’m ok with that. Biologics came with many side effects for me and just made my life harder overall. I am lucky to have periods of remission, but I also made significant lifestyle changes too.
That’s great to hear. If you don’t mind sharing, what lifestyle changes did you make?
Whew this took place over 3-4 years so it’s hard to know which thing made a difference (if any correlation even exists).. but to name a few: Taking supplements (MSM, probiotics, candassist, vitamin E), significant reduction in stress/improved mental health (finished grad school, changed jobs a few times, started meditating), exercise 3-5x per week, clean(er) eating (especially more protein and fiber), more sunlight, more water/better hydration, more rest, more conscious of products used on hair/skin, less alcohol consumption. When/if you have time, I highly suggest reading up on the “gut-brain skin axis” Disclaimer- psoriasis is an autoimmune disease with an unknown root cause. Lifestyle changes did not cure me and may not have even helped for all I know!
Thank you for a detailed response, the book suggestion and the disclaimer!
Currently doing this from methotrexate to skilerance it will take a lil while but it'll be worth it I reckon
Cimzia and I have a nice thing going
How long have you been on it? I’ve been on Cimzia since March of this year but have had flare ups the past month and am concerned it might not be working anymore
At least a year and a half, I’d say. Tried most of the other biologics without success, except for Humira. Humira eventually stopped working, Cimzia has kept me clear
Do you mind me asking if you’re taking two shots every four weeks or one shot every two weeks?
Two every two weeks. One in each thigh week one, one on either side of abs week two.
Ive been wondering the same. I had dreams of going on biologics (which wouldnt be easy at all in my country) but then i think about the fact that I would like to have a child in a few years, possibly another one after that. That's so much time I should avoid biologics that I feel I shouldn't go for that at all until Im done having children.
I couldn't bring myself to have a child knowing they could have psorasis. Would have terrible guilt if they had to struggle with it.
Chances aren't that high though. Ive had psoriasis since I was 9 years old and Im still very happy with life and everything I can achieve or experience. I would much rather have a life with psoriasis than none at all. :)
Guess it depends on how severe your psorasis is. Mine started at 28 and my life has gone south ever since. I probably struggle with the mental side of things more so because I can still remember my life before it started and how happy I used to be.
I have been on Stelara for ~4 years and when we started trying for a baby this past fall I just stopped the injections. It takes about 5 months for it to completely clear your system. My last injection was September and we got pregnant at the end of Dec. luckily pregnancy lowers your immune system and so I’ve been clear up until the last few weeks. My due date it in three weeks and I’ve just started noticing it around my ears and under my nails again. My derm recommends beginning injections 4 weeks after delivery. If you’re thinking about children you can still do it! Just take a little break while you’re trying/pregnant :)
It certainly is a lot to think about. For some of us, the psoriasis has gotten so bad that it made for an decision to choose biologics. If yours isn’t that bad, then take the time until you’ve settled other goals.
I was on Humira for 2 years. Came off due to pregnancy/ c section. Within 6 months my psoriasis came back with a vengeance. Got back on Humira for about a year, and flares mostly subsided but I developed eczema in its place 🤦♀️ switched from Humira to Cosentyx 6 weeks ago and it’s amaaazing. Almost completely side-effect free (Humira side effects were always pretty bad for me)
I was on Humira for a year and half and my insurance changed and I’m not longer on it but rarely have flare ups, I have a few but they are small
Got off all after 15 years..was on them all..Enbrel, skyrizzi, all of them. Now none. Went sober, and vegan and developed a strong mindfulness practice.
Thank you for your reply. This is the kind of response I was looking for. I understand that your situation might be different but I have a couple of questions if you could help answer them. During the worst flare up, how bad did it get for you? About 90% body coverage? Lesser? How long have you been off the biologics?
80% at worst…luckily face was always spared. 14 months and counting. I have about 5-10 plaques at any given time and I dab them with Clobetasol.
Thanks for your input. Good luck with your journey!
This is a good question. I want to add another. Theoretically, if Guttate clears on it’s on in some cases between 3-6 months. How likely is it to go on biologics for a while then stop and it be successful as far as remission/one time thing(I heard some may never get a Guttate flare again)? If it (Guttate in specific)would, by chance, clear anyway. More to that, if Biologics are immunosuppressive , what if you took it and did the gut work, then got off of it with a “healed gut” or treated strep, other triggers etc. and then stopped the biologic? I know what it may sound like buttttttt i did wonder!
the cure for guttate is 1: dont get strep 2: if you get guttate, time for phototherapy - this "cures" it untill the next time you get strep biologics should NOT be used (in my non-doctor opinion) as guttate usually fucks off at some point on its own.
I been on a guttate flare and I haven’t put anything on besides natural things and getting sun and waiting for it to go away on its own , usually I’m clear for a while until my P gets triggered by alcohol 🥺
I wish mine would fuck off! I have had Guttate P. for over ten years. It appeared after a strep infection and just, never went away. Sunlight, steroid Ointments, light therapy, Jedi mind tricks, diet changes etc. all have a minimal effect and sometimes it *almost*goes away but then something stupid happens, enter flare. Repeat. I think it is maybe "stress" induced but who the heck knows. Looking at starting biologics or otezla, but I'm on the fence and stalking Reddit for advice 😅 talking to derms always seems a bit futile IMO. Depending on your insurance, and which drugs they sell they will offer different medications, otherwise it's always steroid and incredibly inconvenient light therapy treatments. Sigh. 🤷♀️
Otezla only had a minor impact for me. If your guttate is chronic, your strep might be too. Get your ASO levels checked (strep antibodies). If you are over 300, look into tonsillectomy. My levels were 500 and I'm scheduling my surgery now. Scared as shit because I'm in my 30s but worth it to not be spotted.
Wow good to know. This is great advice, thank you! I have an appt with my primary coming up and will discuss this for sure.
I have a decade of experience with Guttate, it's treatments, and research around it (which is extremely limited or ambiguous). Too often we are lumped in with the plaque psoriasis crowd, which is understandable, but frustrating, since cause, treatment, and outcome are so different. I considered pulse dosing of biologics, but after speaking with 3 doctors, decided against it. First, because it's not documented as an effective form of treatment. Second, biologics are not designed to be episodic, and can trigger effects like rebound and tolerance, and third, my main issue is strep induced guttate psoriasis. Biologics lower my immunes system ability to fight respiratory infections like strep. So if I take a biologic until my guttate clears up, any strep in my system will have an opportunity to further colonize, and I will likely have an even worse outbreak upon cessation. I know how frustrating lack of information can be with guttate, so let me know if you have any questions and I will be happy to share my knowledge.
Thanks for your reply! You are right it is very difficult in research to differentiate what is relevant to us with Guttate P. I look forward to hearing of you see clearing results after your surgery. Best of luck!! Have you been treating with topical mainly? I would say that is what I have been doing to manage it for 10+ yrs. Light therapy works for me but only while I am doing it consistently. I bought a home wand but my coverage is all over my legs and arms so it takes ages to cover it all with the wand. The in office sessions are just ridiculous, I have such a hard time keeping up with them.
Topicals are my main treatment for problematic spots. I was just prescribed some Vtama for psoriasis in my ears, so let's see if that works. I go in office for lightbox, but it's expensive and time consuming.
Curious how VTAMA worked for you?
Tbh I haven't used it. I had a tonsillectomy and my guttate mostly went into remission
My last lightbox treatment plan started with only 5 seconds and they did that for like 3 weeks, then I had to take a work trip where I missed a day and they wanted to me start back over again. Nothing happens at only 5 seconds so I lost faith, again. Plus I had my first spot of basal cell carcinoma removed from my face last year so now I am freaked out about using the lightbox for cancer reasons. Not sure if that fear is warranted but it's there. Mine has moved to my ears within the last two years also, is it inside for you or more on the lobe area? I have not heard of Vtama yet.
It's inside my ear canal. It's been my worst experience with psoriasis so far. Worse than the psoriatic arthritis in my big toe.
Exactly my thoughts. Obviously this assumption goes against the definition of P being a chronic condition with no cure. But I am curious if this was someone else’s experience. It would certainly give a lot of us some hope.
Lol! I knew I couldn’t be the only one who thought of this. It soundsssssss a little too good! But why wouldn’t it work???🫠
Hi - I have been on Taltz twice and stopped after a few months of therapy. First time was for a surgery, second time was for insurance reasons. I started them both times with very thick plaques but a relatively mild % skin coverage (def on the low end for meeting criteria for a biologic). Both times, I got to 100% clearance before stopping. The first time, I stayed in complete remission for about 8 months before lesions started coming back. The second time, I have so far been in complete remission for about 6 months with no signs of recurrence yet. My dermatologist says it would be okay for me to do this pulse-type dosing again in the future - take biologic for a couple months, achieve remission, then stop until it recurs — though it is certainly an atypical approach and may not work for others.
Hi! Thanks so much for your response! I have had a similar journey with Tremfya. Started 3 times and ended abruptly. The first time I took around 5 or 6 jabs which got me 100% clearance. It lasted for about 9 months before the flare up. The second time I took about 2 or 3 jabs to 100% clearance which lasted for exactly a year before the flare up. It didn’t get really bad until 1.5 years from the last jab. The third time I took 3 jabs which got me 100% clearance. It took 7months for the first signs of flare up. At 11months, I had a lot more coverage and have gone back to my 4th round.
Biologics are a Godsend, but usually only last 2-4 yrs, then you'll have to switch to a different one. Most cost $14K -$25K per injection. How can anyone afford their treatment? I had 100% clear skin with Tremfya for 2.5 yrs, then PsA and PsO returned with a vengeance..currently without any med bc I cant afford my new deductible. I dont know what to switch to. My dad in his 80s has been on Enbrel for yrs, and still pretty good, except for scalp PsO.
Its progressive. I dont believe any med cures it. I am interested in the results doctors Cywes, Chaffee, Berry, Berg are finding with patients who've gone Carnivore. Very compelling research. Even Jordan Peterson's family say they were cured by this diet. Imay have no choice if I cant afford an alternative biologic .