Stelara round two

[Bill]

You have my sympathy Fred. From the pic it looks like you will have to try something else. I think that all psoriasis sufferers plug away at treatments well beyond the use by date in the hope that they will again deliver. It is a mongrel of a disease: here I am with only a few spots left, yet a few feeds of pasta has caused the spinal arthritis to flare. Ouch! Like Caroline and Jim I am a big fan of DMF. I would be happy to email you some past and present pics if you want to see what it can do.

Cheers,

Bill

[Fred]

Thank you everyone.

@Quest: I won't be trying occlusion as I can't be bothered with it to be honest, I'm just slapping a bit on to get this little patch down at the moment as it's annoying me. I do use coconut oil regularly every day, and that usually does the trick.

I have a Water Softener, but not a green house. Also I know what Stelara is and how it works, I've been on it for 5 years.

@Matari: Yes I'm thinking it's because I have upped to 90mg that it needs time still to settle down, I'm only on month 5 with 90mg so that could be what's happening. Time will tell, I shall be taking another 90mg in a months time and then seeing from there.

@Bill: I have accused Stelera of failing me before and like you say I think sometimes we do go past the efficacy of a treatment and can take it for granted, but to be fair on it it has given me the best 5 years ever on any treatment so I'm not giving it up just yet.

I've also decided even reading your posts along with Caroline's, Jim's and others using DMF that it's not for me in any form, I would try it if I got desperate but I'm along way off that at the moment and I wouldn't be fair to it if I'm honest.

Thank you all but, I'm going to get on with it and take the next shot before my break and see how it goes. In the meantime I will try and get this annoying patch down or at least stop it spreading, then I will see where I go next around October when it will be time for the next shot.

Stelara has been very good to me and it gave me back my life, so it makes me hesitant to just dump it as we have become good friends. And like all good friends sometimes we fall out, but I'm sure this is just a little setback due to other things going on.

[Fred]

Went yesterday for my double appointment with Rheumatology and Dermatology, they didn't seem to happy that I had asked my usual dermatologist for more Stelara but when I explained I couldn't get an appointment with them before my break I decided to go for it they shrugged their shoulders and said OK.

Not much has changed, psoriasis is still much the same and psoriatic arthritis is about as it it was (no worse, no better, so at least it's holding it's own) Anyway they asked me which was most important to get help with psoriasis or psoriatic arthritis, I replied psoriatic arthritis is the most important to me. OK they said "Have you tried Methotrexate?" Well let me just say they were lucky they were females or I would have grabbed them and shoved all my notes down their throats.

After calming down (Mrs Fred sees to that) I explained about our last meeting and we decided not to try Methotrexate again, they said what about Acitretin .................................................... I stopped them there and said "I have just taken my shot of Stelara that you wasn't able to supply me with and I'm not going onto that crap so wake up and tell me where we go from here".

After a bit of chatting away amongst themselves they asked if I had tried Remicade, Humira, Enbrel. I just replied can I go back to my original dermatologist?

So to cut a long story short I'm going back to my original dermatologist (who is a very nice lady who listens to her patients) in October and the two of us are going to talk about my options which obviously are still limited as there is nothing else. But I have got rid of the double appointment they were trialling which obviously wasn't helping me or going to work as they didn't know my history.

I shouldn't complain to much as it is still one of the best hospitals In France and it was a trial idea, but mixing Rheumatology and Dermatology in one appointment isn't going to work for someone like me. It's not that they didn't give me time or anything like that, it's just that with two doctors doing two different things and offering stuff that I had already tried, had a reaction to, or just wouldn't take isn't the best way to go.

Oh and the best of it is they didn't even believe me when I said I had been on Stelar for just over 5 years. they gave a stunned look and siad No it's not right. Grrrrrrrrrrrrrrrrrrrrrrrr read my notes ..................................... Oh yes said one to the other he has been on it that long.

So there is nothing the two can do for me and I'm back with my favourite dermatologist in October and we will go from there.

[Caroline]

Well Fred, you know I am with Bill on this matter.
You have certainly great hospitals, I have been in them also, after slipping out in a river and hurting myself against a rock. But... They don't have DMF, and that is really an omission.

Anyway if everything fails, if nothing works anymore, there is still DMF to try. As a last option. Hi hi while here in NL, voices are going that it should be the first option to try. The most well known dermatologist in NL Dr. Bing Thio states that DMF could be the aspirine of the future for auto immune treatments.

But let's not continue on that, it's late already, and I have to go to bed.

Of course I feel very sorry for you that you have the flare ups, and of course hope the stelara and the derm can do something for you.

[D Foster]

I hope that you can get sorted in October Fred , I have several small patches at the moment but my Stelara seems to be holding things at bay. It's real sod this bloody P. Did you find that the aches got worse as you continued with the Stelara ?

[Fred]

Well Fred, you know I am with Bill on this matter.
You have certainly great hospitals, I have been in them also, after slipping out in a river and hurting myself against a rock. But... They don't have DMF, and that is really an omission.

Anyway if everything fails, if nothing works anymore, there is still DMF to try. As a last option. Hi hi while here in NL, voices are going that it should be the first option to try. The most well known dermatologist in NL Dr. Bing Thio states that DMF could be the aspirine of the future for auto immune treatments.

But let's not continue on that, it's late already, and I have to go to bed.

Of course I feel very sorry for you that you have the flare ups, and of course hope the stelara and the derm can do something for you.  

Yes I know your feelings and Bill's, but even if DMF was available to me I'm not sure if I would take it to be honest. I think my biggest problem is that in my younger days before psoriasis I would take anything in tablet or sugar cube form and wouldn't think twice about it, but as I got my self sorted out and then ended up getting sick as hell with methotrexate I shudder at the thought of even having to swallow a pain killer which I do sometimes need.

So I can't see any oral form of treatment ever working for me, unless it can be sneaked in my Merlot without me knowing.

I guess it's more of a phobia than anything else, but I put myself against popping years ago and it's stuck.

[Fred]

I hope that you can get sorted in October Fred , I have several small patches at the moment but my Stelara seems to be holding things at bay. It's real sod this bloody P. Did you find that the aches got worse as you continued with the Stelara ?

It's difficult to say, I do think Stelara has sometimes let me down, but then again it has helped me a lot with psoriatic arthritis. It's been just over 5 years now and this is probably the worse it has been, and now the psoriasis seems to be coming back.

I'm of the thought that my body is getting immune to it after so long and even the double dose isn't having any better effects, but it does seem to be holding rather than going further down if that makes sense.

The trouble is Dave we all want to be 100% but that isn't going to happen, and when we do find something that gets us to 90% it feels so bloody good that we can swing from the chandeliers. But when it starts to fail (even just a little bit) it brings us back down with a bump and we are not happy, we need to be happy to help the treatment work so it's catch 22.

[jiml]

Very true Fred it does help the psoriasis if we can stay happy ( it won't fix it but it will help) and I can relate to a phobia of taking pills after methotrexate ... I have probably mentioned this before on here but I had to psych  myself up on a Monday and literally force the tablets into my mouth, and gagged whist trying to swallow them sometimes actually bringing them back up ... So I have done the methotrexate thing ...
I decided I would give the fumaderm tablets a chance .... I thought I might have trouble with them but they slip down very easily with either a beer or some wine  ( not the breakfast ones those I take with coffee)

I know you aren't likely to get it in France as it hasn't got approval and you are anti pill but if you ever get the chance I'm sure it would work for you
On here you have seen a few quit due to the side effects but many more are still on it enjoying a scale free life
I also know it's not approved in the UK for PsA but that doesn't mean it doesn't work as Caroline will tell you
I'm not trying to convince you to try it I'm just pointing out that it's a good treatment that could work

[mataribot]

Fred, check to see if you have a drug called Orencia available. It's approved here for PsA/RA and works wonderfull for hands and feet. The KICKER is that it can take WITH Stelara. It's a shame they are only considering one form of treatment. Orencia can be taken via infusion, so weight isn't much a problem.

My suggestion is too look for medications you can add to Stelara. Just my opinion.

[D Foster]

I hope that you can get sorted in October Fred , I have several small patches at the moment but my Stelara seems to be holding things at bay. It's real sod this bloody P. Did you find that the aches got worse as you continued with the Stelara ?

It's difficult to say, I do think Stelara has sometimes let me down, but then again it has helped me a lot with psoriatic arthritis. It's been just over 5 years now and this is probably the worse it has been, and now the psoriasis seems to be coming back.

I'm of the thought that my body is getting immune to it after so long and even the double dose isn't having any better effects, but it does seem to be holding rather than going further down if that makes sense.

The trouble is Dave we all want to be 100% but that isn't going to happen, and when we do find something that gets us to 90% it feels so bloody good that we can swing from the chandeliers. But when it starts to fail (even just a little bit) it brings us back down with a bump and we are not happy, we need to be happy to help the treatment work so it's catch 22.

You are right Fred we find something and it does bring you back to earth when things happen, Stelara has not really ,for me, been that good for my PsA though it has helped. It just shows how different we all are.
My thoughts are with you my friend .