Don't know if /adv/ can help me but here goes..
Last year I was told I have Psoriatic arthritis, the Doctor told me if I don't take a drug called methotrexate I'll be in a wheelchair within 10 years.
The thing is my Dad had the same problem and took methotrexate. He ended up with liver failure and a host of other issues. Bare in mind I'm 28 and would be on the drug probably for the rest of my life.
I currently take Naproxen which will fuck my stomach with continued use
So here is my question, would you take a drug that could make you feel like shit for 4 days out of 7 for the rest of your life? Or risk being in pain and joint damage, this may never happen.. or I could end up crippled for life.
Having endured both the effects of long-term naproxen usage and the specter of liver issues myself, I'd take the latter. I know it's a horrible way to go but the crippling pain of your stomach lining dissolving away is a horrible way to get there.
I saw 2 GPs, the first gave me the Naproxen with no warnings, the second sat with his feet on the dsk and said "well, guess your just one of the unlucky 1 in 10"
The specialist took me a year to finally see, he looked at my hands, told me what I already knew "you have Psoriatic arthritis" told me about the drug, I laughed and he said, cold as fucking ice "well I'll see you in 10 years when you end up in a wheelchair"
No other advice, didn't talk about other drugs (there are a few, all shitty).. No idea where else to go.. also I'm a UKfag so I'm stuck with the NHS, it's free but it sucks
Been doing that, also cut out coffee, found it helped quite a bit but I can still barely open my hand in the mornings even with the tablets.
Thanks for the advice though.
Someone else suggested weed but honestly I couldnt get any even if I wanted to
Also, I heard vitamins D, K and B play a role.
Have you tried curcumine and fish oil? L carnitine? Dead sea baths?
Stress might also play a role.
I feel you man. I'm sorry I'm not being any helpful.
I truly wish you the best.
You're correct, NSAIDs will have an effect on your stomach, and then your kidneys and liver in the long run.
Methotrexate is kind of a shitty drug and recent studies show it doesn't have a statistically significant benefit over placebo in Psoriatic Arthritis (PsA).
A few new studies have shown promise in using TNF inhibitors like Infliximab, as well as another drug called Leflunomide. Side effects, though uncommon, have been reported with both.
I don't understand how the medical care system works over there. Seems as though your doctors only acknowledged the "traditional" therapy for PsA. There are other options. They're not perfect, but signs point to them being better treatment options than methotrexate (or prolonged NSAID use).
Yeah I looked into the other drugs and their only offered if the Methotrexate causes "a reduced quality of life" which pretty much means, unless it almost kills you then we wont give you anything else.
The NHS is a double edged sword, yes it's free but that means you only have access to the drugs their willing to pay for.
Plus, not that i'm a genius or anything but I've found that if you actually start asking questions or actually do some research and point out how shitty a drug is, the doctors here panic, close ranks and you will never get an honest answer, their used to 70 year old grannys taking whatever and saying thank you.
Yeah, in the NHS plan, you should be able to get access to TNF-alpha inhibitors by failing methotrexate (e.g. by finding it intolerable because of stomach issues or fatigue). Since people can fail drugs based on qualitative issues, who knows, you might 'fail' methotrexate in the first two weeks of taking it.
Return to the (or find another) specialist and ask them to enumerate all the options for you and how you would get access to them.
Explain that you are concerned about a genetic predisposition to liver disease when on methotrexate because of your father and would like to explore your ability to access other options thoroughly first. Not a doctor on earth should find that an unreasonable request.
That's great advice. I have another 3 months till I see him again so I will try and talk to him about it. The guy looks ready to retire though and I can't really explain through text how dismissive he is.
Honestly I'm thinking of changing GPs too, I had an ear infection a while back.. saw 3 different GPs (at the same clinic) and they all failed to spot it, by the time I actually got it looked at I ended up in hospital for a week with a possible Temporal bone infection, luckily it hadn't spread that far.. took me a year and a half to even see a doctor who finally said "shit son, your ears pretty bad"
I'd suggest you look into "helminthic therapy". It's not a particularly appealing way to go, but there's a lot of evidence that hookworms have a positive effect on helping regulate autoimmune disorders.
I read about it recently, i don't know how i'd feel about it but I look at it like this..
I have a few options
>50 year old chemo drug
>Stomach wrecking drugs
>no meds and pain/ possible joint damage
>alt treatments which may not work but wont kill me
Breaking it down like that the last two options are the most appealing
The major drawback of deliberately infesting yourself with hookworms (assuming you're keeping your parasite load reasonable so that you're not having issues with intestinal blockage or anemia) is that the worms can end up in places that they're not supposed to be. Basically they're supposed to enter your body via skin, travel to lungs via bloodstream, then be coughed up and swallowed to end up in your upper GI tract. Hookworms larvae are very small and the species that generally infest humans don't have a part of their life cycle where they encyst (like tapeworms) so they're not usually a problem, but a larvae growing somewhere like your brain could be bad. It's apparently pretty rare (unlike with tapeworms) when this happens.
If I had a serious condition involving something like arthritis, crohn's, or lupus, I would be willing to try it. Something like food allergies or hay fever -- no matter how severe -- I would probably live with the symptoms even though allergies are where hookworms are more clearly beneficial in moderating immune system response.