Flare?: I have successfully reduced from 24mg down... - PMRGCAuk

PMRGCAuk
11,304 members20,605 posts

Flare?

Manchild
Manchild

I have successfully reduced from 24mg down to

16mg after about 7 months. Now down to 15 and

that dose does not control my symptoms of pain

In legs and back.

If I contact my Rheumy he will again be a

broken record about going on MTX...

Instead, should I go back up a few mg for a few days to see what happens? Looking forward for your very informed replies.

21 Replies
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I've been on MTX for a year now. I started after I had a second flare of GCA symptoms on reaching 25 mg of pred per day. Since then I've reduced to 10 mg successfully. I won't take anything the doctors dish out to us without question, for example I refuse to take bisphosphonates, much to the annoyance of my rheumy. However I do think the MTX has been useful to me. Having said so, I know I haven't had any terrible side effects and that some people do.

PMRpro
PMRproAmbassador

Although I have serious doubts about its use I did agree to try mtx - after all, I've had PMR for 14+ years and been on pred for 8+ years. Had I had no side effects I'd have carried on - but I did and said I wasn't prepared to spend months feeling that ill.

I think it probably is worth trying it to see if it doesn't cause unpleasant side effects and if it helps - but if it doesn't, no point continuing it.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

You are still early days into PMR, but as PMRpro says - if you are content to, then you could give a trial. You may find it works for you, then - if it does all well and good, if not then you can stop it! And stop the Rheumy wittering!

Manchild
Manchild
in reply to DorsetLady

Well, for some reason today I feel much better! Just may stay on 15mg for a couple of more weeks and see what happens.

Really don’t want to add another MTX at this time, but will consider it if I don’t

Feel better. I have an appointment with another doctor next month so will see what he thinks.

Sorry to be “wittering” about my current rheumy, but he drives me nuts at times.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Manchild

I quite agree - why add in another powerful drug. Personally I wouldn’t either, but it does work for some. Fortunately I was never pressured to try it, but after 2 appointments I didn’t bother to see a Rheumy for my duration!

PMRpro
PMRproAmbassador
in reply to Manchild

"he drives me nuts at times."

As good a reason as any to find another - unless he has any outstanding redeeming features...

I’d that a rare bird? Lesser spotted wittering rheumy???

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Daisychain12

Unfortunately not- quite common in some parts😳

I did have a couple of X Rays that identified osteoarthritis in my knees and arthritic deterioration in my lower spine. Pred touches neither. Be sure that your pain is PMR pain, if it is helped by painkillers it’s not.

On the other hand I found that my early days at highest dose (15 down to the high single digits) dealt with all my aches and pains, including OA. These returned with tapering.

I tried to tell my GP that today and he wouldn’t have it. He used to be great, now he can’t wait to get me out of there but agrees to every referral and diagnostic test I ask for. I felt quite concerned for him. The U.K. is driving it’s doctors over the edge.

Bad as things are in Nova Scotia for some reason UK doctors looking to escape are coming here. Is it a case of the grass being greener on the other side of The Pond?

That’s a worry Jane. Doc with burn out is not good. Xxx

Hi Manchild

My dr. told me Mtx works best if it is given early, at the start of prednisone.

Also, it is very hard to tell if it is working or not. The only way you can tell is to go off of it and find out. Generally, people say, after going off of it that it was working better than they thought. A lot of the pmr pain returns and pred. needs to be increased.

I agreed to go on it early in treatment. I used the shots instead of pill form to help with some of the side effects. Although it helped me to get down to 6mg of pred. from 15 mg in about 8 months, I couldn't deal with the side effects any longer . Since stopping MTX, I had to continue to increase pred. to stay somewhat comfortable. For the last year I have been trying to reduce from 15mg and I am now on 10.5mg. Hope this helps.

piglette
piglette
in reply to Linny3

I have heard that MTX is supposed to work better if started at the beginning. A friend was given it on diagnosis and she went down pretty quickly and was off pred after around two years while I carried on with it. I think there is a certain amount of luck involved too.

Manchild
Manchild
in reply to Linny3

Hi Linny3,

That is what I am worried about- having side effects from taking the MTX. My doctor is trying to assure me that any side effects will be minimal and I will be Able to get down to 5mg relatively quickly. Needless to say, I am very skeptical.

PMRpro
PMRproAmbassador
in reply to Manchild

He's taken mtx himself has he? I have - my side efefcts weren't minimal, they were as bad as PMR without pred and that is something I can speak about with authority, I did it for 5 years. Not everyone has problems - but until you try you don't know.

And where does he get his proof on reduction from? It might - it might not.

piglette
piglette
in reply to Manchild

Some of these doctors could work for the pharmaceutical companies as drug reps!

PMRpro
PMRproAmbassador
in reply to piglette

Maybe they do?????????????

piglette
piglette
in reply to PMRpro

I think you may be right!!

Seven months is still quite early days for PMR which can last 6 years or more. You've done well to reduce from 24 to 15mg in that time. I and others reduce by 0.5mg each month. If I were you, I'd be happy to do that and take another 30 months to aim towards zero - although, of course, it could take longer or less time.....

Me: PMR since May 2016. Tapering on DSNS to 4mg.

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