explain this disease so can understand it better

[greenjanet]

i find the information on the net very hard to understand and complicated.:confused1:

can i have information from you guys and info on clearer web pages.

also does the medication stop the immune system alltogether?

janet

[Dirty Don]

I'll start, but there will be more knowledgeable and astute explanations coming from others on here. You have come to the right site! Basically, the immune system is 'fooled' by granulomas (small granules) which surround and eventually suffocate/starve the blood vessels. But, they are on the outside of the vessels...so the AI (autoimmune system) is fooled into thinking/attacking an infection which isn't really inside the blood system. So, the AI needs to shut down as it attacks the sinuses, lungs, and kidneys primarily, doing incredible ranges of damage to them. Mine is the sinuses, I'm a lucky one, no dialysis or such, just talk like a frog among other things. So, whilst the AI needs to be shut down, the granulomas also starve/strangle the blood vessels so tissues are damaged. How we get them, from where...no one knows. But, the disease is controllable nowadays, and for some, it can even go into a remission, medical or complete. Then the issue of the drugs used (primarily prednisone and numerous low dosage cancer drugs) can create their own sets of problems in side effects. For example, higher doses of prednisone made me rather edgy, and that's being gratuitous! I'm not sure if the drugs ever completely shut down the immune system, after all, as one person on here says, it is our 2nd brain!? But, as the AI system is compromised, certain precautions and drugs must be taken in order to stave off any infections.

OK, that's a start, I know many more will offer much more inclusive & detailed info...best of luck...you can get through this, it's just a life changer...

[Al]

Janet, there are parts of the immune system that have an inappropriate response. But no, the meds do not shut down the entire IS. Nor should they: the point is merely to keep the "wrong-headed" antibodies from proliferating. Taking down the entire IS would force you to live in a sterile bubble. Unfortunately, the standard technique does require taking down more of the IS than is desirable: Cytoxan destroys both T cells and B cells in huge quantities. Rituxan just affects certain B cell populations. But any tweaking of the IS contains risks--like of nasty infections. Still, it is the only remedy we have at this time.

As for the complicated web pages...well, this is a complex disease. Please describe what you are having trouble with and we will try to simplify the answer as much as possible.

Al

[greenjanet]

thank you sooo much it makes it clearer my husband is worried stiff, i want to know more so i can ask the doctor more questions janet

[greenjanet]

does methotrexiate cause many problems? and why does prednisilone blow you up.? mine started in my wrist and fingers, does the disease move around to different parts of the body lungs kidneys sinus thanks

[Dirty Don]

does methotrexiate cause many problems? and why does prednisilone blow you up.? mine started in my wrist and fingers, does the disease move around to different parts of the body lungs kidneys sinus thanks

I'm on mtx and pred...can't say I have any obvious side effects from the mtx in caplet form. I did experience some nausea at first as it's a once a week dosage. But doc split the dose in two 12 hours apart and I've had nothing since. Pred, on the other hand, has all kinds of stuff going on...it partly depends on your reactions to the drug also. I, at higher doses, became a bit edgy...ie. would argue with wife about a piece of paper on the ground...HUH???? It can also mess with your sleeping patterns too. I'm sure there are other things...some people have talked of cramping in the legs, etc.

Hmmm, prednisone blows you up cuz...it can. I don't know the medical reason, but it's a pain! As for the pain moving around to different joints...sounds like a symptom of active Wegs and, perhaps, flare activity. Once under control, that should go away. Hmmmm, watch it closely...one of my main symptoms was roving joint pain...2 days here, 2 days there, and so on.

[annekat]

I was recently switched from a low dose of CTX to a low dose of MTX, 10mg. per week. The doc suggested I split it into two parts during the day. I had no real nausea but was feeling sleepy and fatigued for a couple of days. I've now switched to just taking the whole dose at night before bed on a night when I can sleep in the next day. That seems to be working well. I don't know how it would be with a larger dose, though.

[greenjanet]

thanks so much for the info my doctor rang last night and said my liver is playing up again any idea about this ?