More information on MTX

[englishrose417]

The attached website Johns Hopkins Hospital some how sent me an email that covers Vasculitis which covers GCA it's just a bit more information. Not trying to tread on any ones toes because I have learned so much from the knowledgeable ladies on this website. Here in the States there is a dearth of information about PMR/GCA. I am waiting to get a second opinion as my Rheumatologist told me to stop Pred when I have decreased to 5 mgms. Decreasing weekly by 5 mgms from 40mgms he was not interested in NSDS or even talking about it. I am on MTX and found this article interesting.

hopkinsvasculitis.org/vascu...

[PMRpro Ambassador]

You've been told to stop abruptly at 5mg - after how long on pred? Please don't!!!

And reducing at that rate, even when on mtx, is unlikely to succeed in just 8 weeks. It's seen as good when you can do that with tocilizumab/Actemra - but if you could do it with mtx why would you spend all that money on a biologic? I must be missing something.

[englishrose417 in reply to PMRpro]

I started 40mgms Pred the end of April to stay at that for 4 weeks then start the weekly 5mgm decrease. I saw him the first week of July and he said to get down to the 5mgms and to ignore the NSDS. I made an appointment to see the Drs office Nurse Practitioner who has dealt with 4 patients with PMR she gave a me a regime to come down. I had to increase as I had really nasty pains in my feet so I went up to 20mgms and now I am down to 17.5mgms and waiting for a second opinion.

[PMRpro Ambassador in reply to englishrose417]

You have PMR? Sorry - thought you maybe had GCA from the dose, but either way, neither PMR nor GCA last only 2 months. They are both chronic disorders and last anything from 2 to 6-ish years before you can reduce pred to zero without a return of symptoms.

The rheumy started you on a dose that is the usual starting dose for non-complicated GCA and really too/unnecessarily high for PMR. The international guidelines then recommend a SLOW reduction to find the lowest dose that manages the symptoms as well as that starting dose did. That depends on how active the underlying autoimmune disorder is and how long it lasts. Taking pred only manages the symptoms, it does nothing to the actual illness so it will run as long as it wants - and nothing you can do will change that. Starting at a higher dose of pred to "zap it" doesn't work.

I've written this less for you than anyone else looking in - but I'm VERY glad you are looking for a second opinion and that it is at least "only" PMR you have. Because if that rheumy tried doing that with a GCA patient it would probably be classed as medical negligence!

[englishrose417 in reply to PMRpro]

He diagnosed me with PMR/GCA and told me he would have me off Pred in 6 months he put me on MTX 15mgms once a week. I had been having prednisone for about a year prior to seeing the Rheumatologist my Primary Dr would give me 30mgms then decrease it over a couple of weeks I would go back and complain of pain and tiredness and he would give me another course. I had torn out both Rotator cuffs over the years and was having shots in my shoulders approx every 4 months for the past 6 - 7 years. My husband had Leukemia and died 4 years ago, a week later I had a dematologist appt. and I had Mohs surgery I lost the tip of my nose and had 3 months of reconstructive surgery. Then I had a mammogram and I ended up with a quadrant mastectomy so I understand where stress comes into my diagnosis. I also had shingles last year.Prior to the last 4 years I have been fairly fit. I am waiting for a second opinion. My primary has thought for some time that I have RA and I saw a Rheumatologist 5 years ago he said no it was OA and that was the end of that. I don't think PMR/GCA was even a thought then. Thank you PMRpro for your reply and comments. I think the problem here in the US it is an illness that they don't know very much about and as pred is cheap and works the almighty dollar doesn't factor into it so why worry. I am a skeptic I know.

[PMRpro Ambassador in reply to englishrose417]

I'd agree with you - there are moments I wonder in the UK, in the US it is inbuilt.

But cure PMR is 6 months? If he can do that it's time he communicated it to the rest of us! But he won't do it with mtx - unless he can't tell the difference between PMR and LORA. Which I suspect may be the case!