New from the UK

[freakyschizogirl]

i'm on 5mg of folic acid once a week, starting monday i'm having 3x 7.5mg methetrexate and currently on 40mg pred.

[Sangye]

Freaky, you should not wait until next week to get an acid-blocker. You can do major damage to your stomach in just a couple days on 40mg pred. Please call your doc and demand a scrip today. It's unbelievable that he made such an error.

[eileenv]

I'm on 7.5 of pred and have been on this for a year i never new about taking acid -blocker. i had one episode of terrible heartburn that lasted all night but that was months ago.

[freakyschizogirl]

I've just rang the Rheumy's secretary and asked if i should be on an acid blocker, she said she'll get back to me. Thanks guys, i've been having some sensations in my stomach since tues. If he has made a mistake this early on i can hear Addenbrooks calling!

[Sangye]

Freaky, meanwhile you should get an OTC acid-blocker to give some stomach protection. Tell the pharmacist that you're on 40mg pred and ask for a recommendation.

[freakyschizogirl]

ok thanks Sangye...my Rheumy's sec is getting very arsey with me when i rang her back. Saying he was unavailable. I said well its a pressing issue. She said ring GP. GP's not in. Then Rheumy's sec rings back, Rheumy said to reduced down to 20mg pred and see GP next week....He's obviously incompetant. I will be getting Referred to a vasculitis centre now. Not having mavericks mucking about with my health.

[JanW]

Why would he have you cutting your dose of pred in half all of a sudden, Freaky?

Maybe the FA dosing schedule is different in the UK. For what it's worth, though, I take 7 mg a week (1mg/day) and am on 17.5 mg mtx per week. Things to be concerned about with mtx are mouth sores, extreme fatigue and nausea, and FA has been proven to combat those symptoms pretty effectively in some people.

[Fran]

Hi JanW - I have been in remission for approx 11 years but take 10mg methotrexate (tablet form) once a week, and like you take 5mg folic acid every day. Hope your foot has improved. best wishes.

[Jack]

You cannot just halve your Pred dose with no medical indications to support it! It is a bloody powerful drug and should not be treated in such an off hand manner.

I'm furious at your standard of treatment!

I think you are going to have to look after yourself for the time being. In your position, I would maintain the Pred dose and do my best with my GP or Pharmacist to tackle the stomach issues. You can buy Zantac over the counter if you need to.

[Doug]

Doug, I'm so sorry to hear what you're going through with insurance. How far are you away from getting Medicare? I'm sure you've checked into everything, but I wonder if you've looked at Health Savings Accounts? That's what I had for private insurance (self-employed) when I got dx'ed. It was great coverage. $3,000 annual deductible, but 100% covered (all medical and pharmaceutical) after that. I contributed some money to the monthly savings account, which I used to pay for holistic treatments, etc.... They raised the premium so much that I finally had to cancel it-- in 6 years it went up 400%. By the time I canceled it, the premium was costing me 84% of my monthly disability income.

It might be a decent option for you. I have no idea what it would cost with a history of Wegs, though.

I think it's criminal that any of us have to worry about things like this. I'll second your angry face.

I have been stewing over the application for the CHIP insurance (over-priced/under-insured insurance for people with hopeless medical conditions, alcoholism, etc.) for a few days now. They ask for levels of detail I have no answer for, and make the process so daunting, I am about to say "f" it, throw my fate to the wind. I think it is criminal, too, that we have to go through this, and wish Wegener's granulomatosis on every insurance company executive in America. Not very Christian of me, I know, but if I start praying now...! Seriously, I feel very vulnerable just now, and will try to keep you up to date on my efforts. I have a tendency to give up when it involves insurance companies, which is an attitude I have to conquer.