Stelara round two

[Fred]

@Jim Even if it is made available I doubt I would go for it, I've made my mind up now that DMF's are not for me. Maybe as a very final option, but I would rather try another bio or stay on Stelara.

@Matari I will mention it at my next appointment, I doubt it is available to me as they would have mentioned it at the double meeting. But it could be worth an ask, thank you.

@Dave Thank you, I have a thought that there are different types of psoriatic arthritis like there are psoriasis and it's never been picked up on. For example plaque is different to pustular, so is there type A psoriatic arthritis and a type B, Type C, Etc. Maybe that is why Stelara has worked for psoriatic arthritis in my case but not in yours.  

[Bill]

It is a rotten disease and you have my sympathies. I was reading about hematopoietic stem cell transplantation (not with regard to psoriasis) and realised it was the possible permanent cure that Caroline was talking about, although I am a little skeptical about its efficacy. What did interest me was the idea that auto-immune disease can result from specific leukocyte clones which tend to displace other lineages. HSCT attempts to restore variation to the immune system, although it is a little less successful at this with one type of T cell. The disease model fits for psoriasis, where it is easy to imagine a plaque causing lineage of T lymphocytes becoming dominant and wreaking havoc. Maybe DMF works by creating a better balance of leukocytes?

Anyway, good luck with your treatment. I think I can definitely add curries to the list of no-go foods for DMF. No headache thankfully, but a kick in the guts I could have done without.

Cheers,

Bill

[mataribot]

Roughly about 2/3 of the patients received a 20% reduction in symptoms of PsA. That number is probably a lot lower in the general population. A 20% reduction mathematically is not much. It becomes simply idiotic to find one treatment that give you enough relief with PsA and P.

[Fred]

Anyway, good luck with your treatment. I think I can definitely add curries to the list of no-go foods for DMF. No headache thankfully, but a kick in the guts I could have done without.

Cheers,

Bill

Thank you Bill. What! No Curry that's helped my decision even more, I love a nice curry.

Roughly about 2/3 of the patients received a 20% reduction in symptoms of PsA. That number is probably a lot lower in the general population. A 20% reduction mathematically is not much. It becomes simply idiotic to find one treatment that give you enough relief with PsA and P.

Mmmmmmmmmmm doesn't sound so interesting now with those figures is it worth the extra risk, or am I better just muddling through and popping the odd pain killer when it's bad. I have another three months before next appointment so it's something to think about.

I'm hungry now, think I will have to go and make a nice curry for dinner.  

[mataribot]

The TNFs do not do much better statistically than Stelara they just work faster. I know you're not a fan NSAIDS (don't know why), but honestly they are best for PsA pain. Narcotics don't do much for pain, unless your pain is the result of permanent damage or possibly OA. I stopped taking mine and I am glad I did. Feel better now that I did.

Besides the NSAIDS I found a couple shots of whiskey helps with sleeping...

[Fred]

The TNFs do not do much better statistically than Stelara they just work faster. I know you're not a fan NSAIDS (don't know why), but honestly they are best for PsA pain. Narcotics don't do much for pain, unless your pain is the result of permanent damage or possibly OA. I stopped taking mine and I am glad I did. Feel better now that I did.

Besides the NSAIDS I found a couple shots of whiskey helps with sleeping...

I don't like any form of pill, it's probably more of a psychological thing than anything else. I stopped popping "recreational drugs" after a few years of abuse as a young man and decided never to pop any again, unfortunately that also put me off taking any form of a pill. When they convinced me later on in life to use methotrexate it was hell, then they put me on some other anti inflammatory's which made my guts feel like Mie Tyson was in there doing some training.

I will sit with something like toothache for ages before backing down and taking a paracetamol, I will take one if the psoriatic arthritis is really bad and I need to do something. I know they don't have much effect, but again it's a psychological thing (placebo if you like) it is as far as I will go for pill popping these days. Though I do have some Tramadol left over from my trapped nerve that I have had to use on occasion, but that is rare.

As for the Whiskey, I don't like Scottish Whiskey. I do like Bourbon or Canadian Whiskey though. But a few buckets of Merlot a day usually does the trick.  

My own crop of Skunk always worked well, but I had to rest my brain so stopped growing it.

[Caroline]

It is a rotten disease and you have my sympathies. I was reading about hematopoietic stem cell transplantation (not with regard to psoriasis) and realised it was the possible permanent cure that Caroline was talking about, although I am a little skeptical about its efficacy. What did interest me was the idea that auto-immune disease can result from specific leukocyte clones which tend to displace other lineages. HSCT attempts to restore variation to the immune system, although it is a little less successful at this with one type of T cell. The disease model fits for psoriasis, where it is easy to imagine a plaque causing lineage of T lymphocytes becoming dominant and wreaking havoc. Maybe DMF works by creating a better balance of leukocytes?

Anyway, good luck with your treatment. I think I can definitely add curries to the list of no-go foods for DMF. No headache thankfully, but a kick in the guts I could have done without.

Cheers,

Bill

Bill, we are hijacking Fred's Stelara thread. I have an answer to you over here in post RE: Bill's pure dimethylfumarate thread

[jiml]

Anyway, good luck with your treatment. I think I can definitely add curries to the list of no-go foods for DMF. No headache thankfully, but a kick in the guts I could have done without.

Cheers,

Bill

Thank you Bill. What! No Curry that's helped my decision even more, I love a nice curry.

Roughly about 2/3 of the patients received a 20% reduction in symptoms of PsA. That number is probably a lot lower in the general population. A 20% reduction mathematically is not much. It becomes simply idiotic to find one treatment that give you enough relief with PsA and P.

Mmmmmmmmmmm doesn't sound so interesting now with those figures is it worth the extra risk, or am I better just muddling through and popping the odd pain killer when it's bad. I have another three months before next appointment so it's something to think about.

I'm hungry now, think I will have to go and make a nice curry for dinner.  

I love my curries as well the fact I'm on fumaderm doesn't seem to affect me at all. Bill also said bananas are a no no for him for me they are fine nothing seems to affect me badly. So what messes with one persons stomach is fine with another it's a matter of trial and error....

[Fred]

Update: Four weeks after my last shot and things are better (not brilliant but better) hardly any psoriasis again, still a patch on my legs but it's just flat and pink instead of raised and flaky.

Psoriatic arthritis is a lot better and I'm managing to do more stuff again which is nice, I'm at last able to get my arms up and can carry on where I left off with the house.

Psoriasis score: Down from 10 and back to 5 again which is about where I was before it flared up.

Psoriatic arthritis score: Down from 18 to 5 so a good improvement there, big toe is still the worst but then my toes always are the worst.

As to what caused the flare up I will never know, maybe Stelara is still failing and I could end up just getting one decent month from every three. I'll just enjoy it for the moment and see how things are in another 4 weeks.

[jiml]

Update: Four weeks after my last shot and things are better (not brilliant but better) hardly any psoriasis again, still a patch on my legs but it's just flat and pink instead of raised and flaky.

Psoriatic arthritis is a lot better and I'm managing to do more stuff again which is nice, I'm at last able to get my arms up and can carry on where I left off with the house.

Psoriasis score: Down from 10 and back to 5 again which is about where I was before it flared up.

Psoriatic arthritis score: Down from 18 to 5 so a good improvement there, big toe is still the worst but then my toes always are the worst.

As to what caused the flare up I will never know, maybe Stelara is still failing and I could end up just getting one decent month from every three. I'll just enjoy it for the moment and see how things are in another 4 weeks.

It's good news that things are looking brighter for you, I am hopeful it was a blip and not the stelara failing .... I know you will stay positive, let's hope it continues to improve ... Be good to see you back working on the house again