Stelara 16 Months On.

[Fred]

There is a thread on the old forum about Stelara. It was mainly me talking about my time using it, and it had received a lot of hits. so I thought it could be of interest to someone if I gave a run down of my past 16 months.

I started Stelara in May 2010 after Humira failed. I have also tried Remicade & Enbrel but I have to say that Stelara has been the best for me. I noticed a change within a week as my skin started to improve, and within 4 weeks the scales had gone and my skin started to feel smooth again. you could still see the patches but it wasn't flaky / red / & sore. this progress has continued to the stage of you could hardly notice any sign at all.

Stelara has not been so good at helping with the Psoriatic Arthritis as the other biologicals, and I do get a bit of pain when it's damp and cold. having said that it's not been bad enough to stop me getting about to much and I did manage to get through the winter without to many problems.

Side Affects: I have noticed a few mild side affects that come and go. After the injection I can feel tired, I sometimes get a Flu feeling, and some mild headaches. this usually lasts for a week or two and it is not severe enough to put me off, and I have got used to it now. Apart from that I have had no side affects, although my blood tests have been showing a high reading for the Eosinophils. they are keeping a good eye on me and say it's not to much of a problem but I must let them know if I get any infections.

The Stelara Tail Off: I have noticed that the Stelara is not working for the full 12 weeks, It seems to tail off after about week 8. I sometimes get a small flare up but it soon goes away again when I have my injection. I have also noticed that it's not working as well as it used to but I guess after 16 months I suppose your body gets used to it. it's still working but just not as good as it did when I first started. I often get chapped lips and sometimes have to resort to Dovobet between my toes.

All in all though I have been pleased with it and will just have to see if it gets me through another winter, or if they decide my blood tests have been to high for to long they may take me off it! got an appointment next month so will update after that.

I hope this has helped someone and if I can I will answer your questions.

Fred.

[Fred]

Had an appointment with my dermatologist today (my usual one is back) the stand in one was ok but I just find it better to speak to someone who knows you better and has seen you go through the ups and downs of your treatment.

Anyway after a long chat and check up, we have decided to keep with the Stelara and have increased the dose to a shot every 10 weeks instead of 12. hopefully this should help with the problems of it tailing off and we will then look at it again. She did say we could look at going for 8 weeks between shots but lets try 10 and see.

So I have ordered my shot for Friday and have another appointment in 10 weeks time.

Watch this space.

[Fred]

Oops I got a bit of a shock today.

10 weeks have passed and of I went for my appointment with my dermatologist. She was a bit disappointed to see some plaques on my legs and said we have to do something about this as 10 week shots are obviously not working.

Anyway to cut a long story short, she asked me my weight, and I replied usually 85 kg but I think a little more at the moment. In came the scales, on I get, and

Spoiler

102 kg!

I was shocked! I knew I had put a bit of weight on after loosing my dog and not walking so much. but I have to do something about this.

So I'm back on a 12 week shot but have been given 90mg instead of the usual 45mg. and it looks like a new years resolution for me.

[Fred]

One month on from the double shot. Been feeling more tied that usual and having a few headaches not to bad just sort of light fuzzy head. also noticed my eyes are more sensitive to bright sunlight but sunglasses help.

Haven't noticed any different improvement for psoriasis or psoriatic arthritis than with just one shot.

I'm beginning to think the Stelara is not helping with my weight! I have been walking regular again, and my diet is about as healthy as I can get I have even been munching on dried prunes I did get down to 99 Kg but it's back up to 100 now, so no great improvement there.

OK Fred lets go loose another Kilo

[mickyfinn007]

Thank you Fred for this invaluable update, I am very interested in alternative avenue's of treament, as ny consultant is considering a change from my MTX.
The information about potential side effects and any other factors, is always very useful, as, if my treatment is changed, I like to be armed with as much information as possible about anything they may be considering.
So once again Fred, thank you for enlightening the masses, as, forewarned is for-armed.

Cheers mate
Regards
Micky

[Fred]

Two months on from the double shot, and I'm thinking it is not worth having. I have no more improvement than I did with one shot, and I feel like a bit of a zombie sometimes Yes I know! I have noticed I seem to be forgetting things and have been feeling more tired than usual.

Just not with it a lot of the time. Oh and the weight hasn't gone down any. 1 month to go before next visit with my dermatologist, but I'm thinking of saying I will go back to one shot.

[Fred]

Hello time for an update.

I have been to see my dermatologist today, and after a long discussion we have decided to go back on to one injection of 45mg. I explained that the 90mg made me feel very tired and a bit like a Zombie, and made no improvement on the odd few patches of psoriasis or the psoriatic arthritis than the one injection.

She did mention Methotrexate again, and maybe I should try a small dose. but I told her I refuse point blank to ever touch Methotrexate again, and that it wouldn't work because of my negative attitude towards it. she agreed

So I have gone back to 1 injection of 45mg but for 10 weeks again to see how it goes, after that I may try 8 weeks. she also mentioned the professor at the hospital could be looking for people to try a new JAK inhibitor. more on that here: JAK (Janus Kinase) Inhibitors

Will keep this thread updated, hope it helps someone. and like I have said before if anyone wants to know more about my use of Stelara for almost 2 years now, don't hesitate to ask.

Fred.

[Caroline]

Only one thing I want to say Fred: Good of you that you don't go back to methotrexate, that is so immense poisoness.
in the mean time I wish you luck with your treatment.

Carol

[Fred]

Only one thing I want to say Fred: Good of you that you don't go back to methotrexate, that is so immense poisoness.
in the mean time I wish you luck with your treatment.

Carol

Thank you, Careful you almost gave me a

[Treatilicious]

Interesting reading from other psoriasis sufferers.

I have had this rotton condition since 2006, starting out with spots on my lower legs and blind boils under my arms (not actually in the armpit thou) armpits were like itchy red welts. My back used to drive me nuts itching. This really got me down as I was wearing a silky halter top to get married in and was paranoid about my spots, boils and crunchy back being on show.

I saw the dermatologist who prescribed dovobet ointment, wrapping the legs in clingfilm at night. Well to say my legs felt like they had permanent sunburn all the time the ointment was on is an understatement! So cream was prescribed, again, once in contact with my legs, which by this time were basically covered (75% of both lower legs) with thick scaley psorasis, the same burning sensation and continually itching. It also affects in my hair, when it flares up, itches and then looks like cottage cheese in the hair, capasal shampoo seems to take it down, but that makes you smell like a coal tar tub!

After 6 months ish of creams and ointment, I went onto uvb treatment, what a lovely all over tan i got from 3 treatments a week for 11 weeks! Took the psorasis back to nearly normal. But within a week of stopping the uvb, the crunchy legs, back, bum, elbows, tummy and bikini line were covered again. Wanting to scratch yourself continuiously all day, never quite making the itch stop made me feel like i was lousy! Next was Methotrexate, what a waste of time that was, saw absolutely no change whatsoever whilst on it. By this stage, my fingernails and toenails are now affected. Now i keep my fingernails short due to scratching in my sleep, but the toenails are so hard with it, makes it extremely difficult to cut them, so i get left with sharp bits. yes you've guessed it, i scratch my legs in my sleep with my toe nails!! Next I had uva treatment, twice a week for 12 weeks, lovely tan and nearly clear skin til it stops then boom, within a week, scaley scabby itchy skin all over again! Next was Cyclosporin, high doses, took it down a bit, but it seemed like my body just got immuned to it or rejected it, whichever it was, did nothing for the psorasis! I went on holiday for a week to Lanzarote, hoping the sunshine in winter would take it down a bit - no such luck, i walked into the sea, dunked my shoulders and more or less came out crying due to the stinging of the salt water on my skin. The last straw came when I saw the dermatologist last july (2011) and practically broke down in the office, depression was starting to set in. I'm a woman and have lived in trousers since 2006 to cover my vile legs. I cant take my daughter swimming to the local baths, as soon as the water hits them, they go blood red and itch like hell, making me more paranoid that everyone is looking at them! Which now brings me up to the subject of this topic, Stelara. I had my first implants in October 2011, but I have found that they only last between 6 - 7 weeks then the spots/scabs/flare ups start to reappear. Dont get me wrong, its not a patch on what it was this time last year, but just not clearing the permanent redness behind the psorasis or lots of the spots. The itching becomes more intense again at this stage, so this either wakes me up in the night where i have scratched myself sore, or i cant sleep due to itching. I have antihistemines to take at night, but they make me feel like death warmed up the following morning and if i have to drive, i dont dare to take them the night before, it would be an accident waiting to happen.
I get assesed from the consultant in june (should have been april but they changed the appointment) they dont assess until you have had 3 treatments. well by the time i get to see them, i will be 7 weeks into my next lot of stelara, so hoping they will prescribe a more frequent dose to see if this has better effect.

sorry if i have bored you with my tale of psorasis, but its only other sufferers that can really appreciate what we go through!
Tracey xx