methotrexate

[Jeff vinc]

I have a concern right now and i am sure that somebody can give me an answer.
I am taking mtx 20 mg a week and i am tapering down prednisone currently at 25mg and 27.5mg alternated days. But when i am taking my prednisone later than the usual time ( if i forget my preds at home which happened a few times) i have bad headaches and i feel a lot of pressure in the sinus area and eyes. I've been on mtx for 5 months now and i wonder if it really work for me. Seems like i have flares when i take my preds later then my usual time and when the preds kick in, i feel better. is the MTX is working or if not i wonder why i feel that way before i take the preds....

[pberggren1]

Hard to say for sure Jeff. But it is best to take pred at those doses as early in the morning as possible with breakfast and an acid blocker to protect your stomach. Do you see a Wegs Specialist? Have you seen an ENT recently?

[Jeff vinc]

I do see a rheumy and he is really good and he have about 10 patients with wegs but i will only see him in 3 months. I can call him if i need to. I haven't seen any ENT specialist yet.
After 5 months on mtx i believe that it would keep me out of troubles if it was working but most of the time before i am taking my preds i feel pressurized and i have headaches and it is worst when i take the preds later( i am usually taking it always at the same time ). I always feel better when the preds kick in. I will definately have to call my doc because when i was diagnosed, they noticed a little mass behind my left eye which was some granulomas and everytime i have an headaches, i feel like its coming from this area ( that would explain my headaches and pressure on sinus and eyes).
But again, 6 months on preds and 5 months on mtx... this shouldn't happen if the mtx was working, right?
no side effect for mtx and the only side effect for preds on my part is moon face and a little bit of weight gain.
I will call my doc on monday about this just to make sure.

[pberggren1]

Ya, I would get your doc on this ASAP. I agree that if the mtx is working you should not be feeling like this. And with them finding the granulomas behind your eye it is even more paramount that you get things in action quickly. Does your doc consult with a Wegs specialist? I highly recommend that he does or you go see one. It makes a world of differenct having more confidence in your doc. My previous doc had 20 Wegs patients but was not a Wegs specialist. My new doc has diagnosed hundreds of cases through his career so I trust him very much on his deicisions. Rtx is a new promissing drug for many and may be the answer for you but only a Wegs specialist can make the call on the drug choic which is not many to begin with.

[Jeff vinc]

Thanks for the info Phil. I would have to do 4000 Kms to go see one because the only vasculitis center are in the Toronto and Hamilton area so basically, it is impossible for me to go see a doc overthere but i will call them to get a specialist and i will tell my rheumy to call the specialst. I don't like doing that but it is my health.
I have a good insurance plan but i wonder if Rtx is covered here in canada. I think its something like 10k per shot or for all shots?...

wait a minute..you are in saskatchewan and you have a specialist? there must one in Edmonton maybe, i guest ill do some research.

[pberggren1]

Yes Jeff, I have a Wegs Specialist right here in Swift Current and Marta has one in Edmonton that trained with Dr. Specks at the Mayo Clinic.

I am currently trying to get 4 infusions of rtx approved through Sask Health at a cost of 14 grand total. Marta had hers covered earlier this year.

[jmmilliorn]

Phil,
You give good advice. You are a man who knows. Thanks for your posts. I am a new forum member and only recently diagnosed. Reading all the comments from the "old times" really helps newbies like me.

Thanks.

[freakyschizogirl]

Reading about everyone picking their nose helps me

My dad jokes that i wouldnt have the disease if i had left my nose alone as a child....too late now!

[jmmilliorn]

I'm not touching that with a 10ft. pole. Ooops! That sounds even worse.

[delorisdoe]

Could plasma infusions be the same as ivig infusions? If so I had that towards the end of my cyoxan treatment many years ago and I sometimes wonder if it played a part in my drug free remission.