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.

[Belinda]

Jeff,

I am also on 20mg meth (just started a few months ago) and on 10 mg pred, and it has made no difference at all the the sinus pain, eye pain and pain in my airways. I actualy think my joint pain has increased since I started on the meth. I still need to take 8 panadeine and 1 tramadol everyday to function. I work fulltime and have 3 kids to look after so I need to be funtioning. I am seeing my specialist next week to discuss what is going on, and I have an appointment with a proper wegs specialist at the end of June.

It is interesting to compare notes with someone who is one the same about of methotrexate as me!

[pberggren1]

Jeff and Belinda, I believe you need Wegs specialists involved in your case right away. Belinda, you are under huge amounts of stress working full time and having 3 kids so end of June is way too long to see a Wegs specialist.

[Sangye]

Hi Belinda, glad to hear you're going to see a Wegs specialist. I agree with Phil that the end of June is probably too far away. If it were only sinus issues it might be okay. I'm concerned with your airway pain and severe overall pain. That sounds like highly active Wegs, which can become life-threatening. Has your doctor talked about increasing the pred at least? 10mg is not nearly enough to hold back Wegs.

[Chris G]

Jeff - I have a similar experience with mtx. I started on 20mg in November, and 40mg of pred. As I tapered the pred thru December and January, my symptoms started to slowly return. When I got to 20mg pred, with continued mild symptoms, they increased my mtx to 25mg, and then up to 30mg last month, and we changed again to injectible mtx at 30mg. I was having some bad "mental" side effects at that high a dose - real difficulty concentrating, and feeling like I was drunk for a couple of days after each dose. I'm rambling - but basically, the mtx was not controling my symptoms - it seems it was the pred that was controling it. The doctors agreed, and we tried adding imuran to my drug regimen - which gave me horrible stomach side effects...... so now I'm off that.

Now, after 6 months of fooling around, I'm back up to 22.5mg pred, while still taking 25-30mg mtx injections. We are working toward changing me to rtx very soon.

The granulomas behind your eye are very troubling! I think it's time you stop fooling around with mtx too.