Long term effects of Stelara
1
Posted Mon 3 Jun 2019 12.23 by Simon Hastings
I have been on Stelara continuously since 1st October 2013. Make no mistake, for those for whom it works, it IS a miracle drug! I had been covered with P since my twenties and nothing else (not even another biologic called Humira) had worked. Yet, the moment I started Stelara it worked so fast that I was already 100% clear in time for my 50th birthday party a month later! And don't forget your P has to be really bad and unresponsive even to qualify for the drug.
I have remained clear ever since. The only way I know that I still have psoriasis, is a tiny bit of P in one or two of my finger nails, but even my finger nails look great on a passing glance. So I don't want to bleat, when there are so many poor souls on this site who are (as I was, for decades) coping with the daily challenges of active P on their bodies. I am very grateful.
A year or so ago, I was dropped from the 90mg dose which is recommended for people weighing more than 100k, to the 45mg dose for smaller people, again without any recurrence of P. So what's the problem, you ask?
The problem is the side-effects. I have had a sometimes-raging ache in my right knee for well over a year now, that can keep me awake at night. I don't know if this is psoriatic arthritis which the Stelara is failing to subdue, or actually a side-effect of the Stelara.
And I am getting regular bouts of flu. I have flu now and have been sick for a week. And the previous bout was just 2 months ago. Hopefully, once I get over this bout, that will be it for the summer, but it still makes it hard for me to hold down a sensible job, if every couple of months, I have to take a week or so, off sick.
To use the terminology on the Stelara leaflet, I am getting the classic 'upper respiratory tract' infections with raging sore throats, coughs and runny nose that goes with that (and bowel problems!), and it takes me ages to shake them off. I don't want to come off the Stelara and go back to having my life blighted by being covered in psoriasis but now I have to contend with the ill-health caused by Stelara, so it is not an entirely free ride.
So far is is a price worth paying. But I would like to hear from anybody else on this forum who like me has been on Stelara for many years, especially if like me it has cleared your skin but not without a price to pay in terms of your general health.
Thanks, Simon
1
Posted Mon 3 Jun 2019 13.47 by John
I have suffered with it for nearly forty years.
Dear Simon
Although I have had 'P' for over 40 years I didnt realise that any drug existed to clear this dreadful debilitating problem that more than takes its toll on its sufferers.
In some respects considering how devastating this can affect people of all ages not only in the physical way but can cause severe depression too, perhaps on balance you might consider yourself very fortunate that on balance the relief more than outweighs the disadvantages? I am sure so many people that are unfortunate enough to suffer this almost life changing problem would agree with me.
May I ask as I am a little out of touch living in the far east the majority of the time now. Do you suffer from any other noticeable symptoms i.e. hair loss etc when on this Stelara?
Long may you benefit from this freedom.
Kind regards
John
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Posted Mon 3 Jun 2019 17.31 by Simon Hastings
Hi John,
Thanks for your response.
Of course you are right, and I was careful to make it clear that I am grateful, I know I am luckier than so many on this site and I called it a miracle drug.
However, the long term effects of biologic medications are still being evaluated, as one would expect, and as (now) a long term user myself, a reputable forum such as this association needs to be somewhere where patients can share, compare notes and learn from, the experience of others of taking particular medications and I hope this does not offend those people who maybe cannot get biologics or for whom they haven't worked.
So I would still very much like to hear from others out there who have been on Stelara, ideally for even longer than I.
Thanks, Simon
Posted Mon 3 Jun 2019 18.14 by John
I have suffered with it for nearly forty years.
Hi Simon
Thanks for your prompt reply and it was very nice of you to share this valuable info with us all.
What I did ask was if there were any other effects other than what you had initially described?
Many thanks
John
2
Posted Thu 21 Nov 2019 09.43 by Simon Hastings
Dear John,
Dear Forum, I have not posted for ages, as I have lost confidence in this forum. Does it have no expert moderators?
I took the trouble/risk of exposing my ill-health to public/forum scrutiny, in the knowledge that there are by now thousands of people who have been on Stelara for years, and I wanted to see if anybody else would take the trouble to share their own ill-health side-effects stories, to see if there was a pattern, and also to see if those who (like me) are suffering adverse health effects had found any solutions that worked for them. That, surely, is the point of reputable forum.
Yet after all these months, I have had only ONE reply, and that is from John, who I feel just gave me a lecture about counting my blessings, because others are not as fortunate as I. am . I am aware of that, which is why I was sensitive enough to acknowledge that in my original post. I don't feel that sensitivity was reciprocated.
To answer your question John, No, other effects. Endless ill-heath (currently getting sick every two or three weeks) feels like enough to me!
Yours unhappy and disappointed.
Simon
Posted Sun 18 Oct 2020 21.13 by Sizzy
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
Hi Simon, I hope you are still on this forum. I was wondering if you were still on Stelara and how you were doing?
I started stelara a couple of months ago and am due my 4th injection soon (having had initial, week 2 and week 16 injections). My skin is totally clear from having severe disease so really happy with that. However, having had only ever very mild PSA, I now find the joints nearest my finger tips are so sore its becoming really bothersome. I've also had several skin infections and been on antibiotics in the last couple of months.
Everyone's journey is different, not every treatment works for each of us, and by the time we end up on biologics (I was on Humira for 5 years before Stelara), we are all too aware of the stress this awful disease causes.
Other than this association, I have not been able to find forums for stelara so there never seems to be anyone to chat to. Even on here, no-one really seems to answer.
Its great that we have access to these treatments but the shear stress of having to use them can be debilitating in itself. I find as much stress dealing with the meds as dealing with the severe disease! It may sound selfish but its how I feel. I hate having to inject this stuff in my body but really had no choice due to the severity of my psoriasis after stopping Humira for 1 year.
Its a double edged knife - if you don't treat severe disease you chance issues with connected diseases such as increased risk of heart and other organ issues or inject a biologic which may clear your skin but causes other minor/major health issues!
Rant over lol, would love to hear from anyone else on stelara xx
Posted Mon 19 Oct 2020 10.10 by Simon Hastings
Hi Sizzy.
I do know what you mean about not getting replies. Given that this is the most well-known UK-based forum, I was surprised that when I posted I didn't get more replies. You'd think there would be loads of isolated P sufferers, only too keen to share their experience and learn from the experience of others? So I hope I can do better by replying to you immediately.
I have been on ustekinumab since 2013. For me it has been a wonder drug. I have been almost clear throughout. I did not have any of the side effects you are having. I did have side effects, but then I was left wondering if they were due to the drug, or just due to being 'me'. In my case it was sudden sensitivity to high FODMAP foods, and getting flu-type illnesses, that would knock me out, more often than seemed reasonable. That was why I posted originally.
I hear what you say about weighing the risks, but, until covid, for me the scales were firmly tilted in favour of staying on ustekinumab. Now with covid around I have not taken my injection for ages, and my P did not come back until recently, and then only a tiny 1 cm patch, which feels like a minor miracle in itself. But, I have now got the worst swollen agonising knee, which has been going on for a few months, and is really debilitating. I am advised that ustekinumab is not good at alleviating psoriatic arthritis, so I am currently awaiting investigation of my knee (which again ist taking months in our current NHS) to confirm if this is psoriatic arthritis, or another cause (e.g. osteoarthritis, bone spur, torn meniscus, etc.) But if it is the former, then the plan is to switch me to secukinumab, which feels scary ... but apparently great for psoriatic arthritis. So, if you are suffering with your joints, that might be a better one for you?
You should in any event talk to your dermatologists urgently, as I don't think the side-effects you are suffering are 'normal' for ustekinumab and you should never leave unexpected side-effects unchecked by a dermatologist.
Sorry that this answer has strayed a lot into my own stuff (!), but I feel for you about the stress. of it all. You feel so alone with this stuff. The doctors are great, but they're not the ones putting this stuff into their bodies. Feel free to message again.
Best wishes, Simon
Posted Mon 19 Oct 2020 10.28 by Sizzy
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
Hi Simon, thanks so much for replying so quickly.
I have messaged my clinical nurse team this morning so hoping they will arrange an appointment before my next dose.
I was on Humira for 5years and it was great but I had to come off that due to tingling/vibrating sensations in feet and hands and despite many tests (including MRIs, nerve conduction etc) no cause was found but they wanted to stop the humira anyway (I'd also had bouts of abnormal heart ryrhmm whilst on humira, again, despite tests results were clear). The tingling remains! It took about 6 months for my Psoriasis to return properly and another 6 together me to agree to starting further treatment!
I was due to start stelara in March but refused it due to covid but psoriasis got so bad they were concerned so agreed to start Stelara. I am definitely a panic patient with high stress levels. Every little thing becomes major and I find it hard coping with these niggle pains and discomforts. But how do we know they are not more than that without asking? The problem with this disease is that it does cause other issues. I'm pretty sure that if I had not developed this disease at aged 11 I would be a different person both mentally and physically. It does more than cause skin issues!
I'm hoping that its not the stelara causing the finger joint issues, seems funny I'm still getting the tingling as well soma not be related to new drug.
I hope your skin remains good and that you get some relief with the knee ( I had to have physio on mine - not the same but the nagging ache not nice). I keep my fingers firmly crossed for you. Xx
Posted Mon 19 Oct 2020 11.18 by Simon Hastings (edited Mon 19 Oct 2020 11.19 by Simon Hastings)
Hi Sizzy. Thanks for the reply. Yes, I too suffer from anxiety. You wonder sometimes how much is cause, and how much effect, of being a psoriasis sufferer. Yet I felt quite 'safe' on stelara, till the virus, and was going to take it again, despite the virus, as I don't think it is particularly risky... until my dermatologist threw this 'curve ball' at me saying they are going to switch my biologic. Now I'm in limbo till I can get a diagnosis for my knee. Good luck with your treatment. I don't want to make you anxious and can say that stelara has given me a 'normal life' for years, during which (the occasional flu-type illnesses aside) I could almost forget that I was a P sufferer! I still have to pinch myself sometimes and remember all those years (decades!) of misery with creams that ruined my skin and did nothing to stop the psoriasis x
Posted Mon 19 Oct 2020 12.55 by Mac
Hi Simon.
If you are comfortable on stelara and not fussed on changing bio's, it might be worth asking about MtX along with the stelara.
Good luck.
Posted Mon 19 Oct 2020 13.31 by Sizzy
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
Simon, I spent my teens and 20's in long sleeves and trousers all because one person said my legs looked horrible! One comment can cause so much anxiety. From my 30's onwards I couldn't care what people thought but was really conscious of the skin flakes I would leave wherever I'd been! It just makes you very aware. In my 40's, the psoriasis just does not accept any topical treatments. They work, then I get a flare and they no longer work! My psoriasis seems to be rather intelligent!
I had heard that although Stelara is given for the arthritis side, it does not really work for many. I am hoping though it hasn't caused it!
As for MtX Mac, taking alongside Stelara puts you in the high risk covid category 'rather than the medium on one drug'.
I was on MtX for skin years ago (the tick box of treatments to get to biologics), it helped skin for a while but soon stopped working. Had substantial hair loss on it as well!
I hope you find something that works for you again, and keep safe everybody xx
Posted Mon 19 Oct 2020 13.37 by Sizzy
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
Ps. I've got my appointment for the 5 November. I attend a London clinic and they are closely linked to Rheumo so hopefully get all sorted quickly! X
Posted Mon 19 Oct 2020 14.01 by Mac
Hi Sizzy.
I would have thought if you where on any them drugs you would be high risk to covid.
I'm on both, and don't even think about it, it's either no drugs no life, or take the meds and have some sort of life. It'll be the latter for me every time, just need tobe careful.
Hope all goes well on the 5th.
Good luck.
Posted Mon 19 Oct 2020 14.18 by Sizzy
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
Hi Mac
I attend Guys Hosp and they done a whole update on risk (as well as a global questionnaire/data gathering tool called PsoProtectMe (worth a look), my consultant, Prof Smith was a major part of it) .
If on two meds (one biologic) you are high risk and I think you should have had a government letter. If one on med being biologics or MtX, you are medium risk and no letters. However, I've kept my risk fairly low as being able to WFH and stay in 99% of the time. xx
Posted Mon 19 Oct 2020 14.31 by Mac
Are you sure that's right Sizzy, a friend of mine that attends, or should i say attended the physio at the same time as me before covid, is on humira and she was in the high risk. I also was under the impression that if you where on autoimmune drugs you got a letter to shield, if that's the letter you are talking about.
1
Posted Mon 19 Oct 2020 15.07 by Sizzy (edited Wed 26 May 2021 08.16 by Sizzy)
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
Deffo. If on just one drug you do not shield just 'very careful social distancing'. It did confuse me so I spoke to my clinical nurse specialist and she said there's no greater risk of getting it but could get complications. If on two drugs, much more risk so 'high'. I also hot letter from hospital stating I was 'medium' whilst on Stelara only and no need to shield x
Thumb down not necessary!
Posted Tue 25 May 2021 21.44 by Şenol Karayılan
First of all, I wish all of you health as far how much it is posssible..For about 15 years, p has been with me.. Tomorrow morning we are going to meet with Stelara..l need a quick and certain answer or advice..Should I start to use it or just live with my p considering side effects?
Looking for any reply.
Senol
Posted Tue 25 May 2021 22.40 by Sizzy
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
No-one can answer that for you Senol. It has to be your decision. I thought I could go drug free, but for me, I really don't have a choice. I'm never Psoriasis free, but I have a 95% plus reduction when on biologics.
Also, our disease has other health risks if severe and untreated. (Sorry, don't want to worry you).
For me, conventional creams, lotions and such like, become useless. My skin seems to adapt and they stop working. I had loads of light treatment years ago, so not willing to go that route for obvious reasons.
I battle with fear of illness through using biologics, but being able to move freely, not covering everything in flakey skin or blood and not being embarrassed by my skin, makes it bareable. Also, just having this disease makes us more likely to suffer anxiety and depression which makes these decisions harder!
It's never an easy choice, but you need to do what's best for you.
Good luck xx
Posted Tue 25 May 2021 23.15 by Şenol Karayılan
Dear Sizzy..Thanks for the reply..
One more question please..can you say that there is a correlation between your tonsils and p?
Posted Wed 26 May 2021 08.11 by Sizzy
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
Hmm, there's a question. I do.
I used to get a lot of throat infections when I was younger. Every year I would have tonsillitis, laryngitis etc. I also get lots if tonsil stones. Certain foods, even if no allergies, give me worse tonsil stones (nuts and dairy for me).
My son started to get regular tonsillitis when he was younger, which concerned me ( no-one wants their kids to get this). We had a consultation with a Ears, Nose and throat Dr and he really listened to my concerns re the suspected link between regular tonsil infection and psoriasis (didn't think I was a crackpot) agreed to remove may sons tonsils.
So far so good (that was about 6 years ago so fingers crossed). He is a teen now.
However, that's just my opinion but your tonsils are supposed to be first line of defense against infections. Perhaps in people with t-cell issues, this is the first warning of possible health issues as getting older. Hmm.
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