I saw my Rheumatologist who told me in March he would get me off Pred. in a year. I had came down from 60 mgms to 20 mgms by 10mgms every 2 weeks. Yesterday he gave me my new regime decrease to 15 mgms for 1 week, 12.5mgms for 1 week, 10 mgms for 1 week 7.5 mgms for 1 week and 5 mgms for 1 week then STOP.
I am on 15 mgms of methotrexate once a week. I tried to offer him a copy of the DSNS but he says that his way is the way I am to use. I have been reading the great difficulties that many have suffered while reducing. I am very skeptical about this method I am sure the Methotrexate will not take over. I will be glad of your comments I am sure there will be some.
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englishrose417
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I tried to get from him how many of his patients had gone this route and with what success but he glossed it over by saying he might see 1 patient a month. My Primary doctor has a Nurse Practitioner who has worked with 4 patients with PMR one of whom is stuck at 5 mgms and cannot get down any further.
I think I will try the Rheumatologists route but at first sign of trouble I think I will work with the N.P. she and I have a really good relationship.
Like HeronNS my biggest worry would be your adrenal glands (we've both had niggles with ours) - so if you begin to feel really fatigued and light headed around 7.5mg it may well be down to them. Just be aware.
My own - fatigue for no apparent reason. Lasted for 9-12 months despite me reducing 0.5mg a time and using a slowish plan (5weeks in total). First noticed it around 6mg and disappeared when I reached 3mg. Okay fatigue-wise above and below!
Sure Heron will give you her view once Canada gets up!
Indeed, here I am at 11:30 am ADT! Example of what happens to me: pleasant but busy morning, socializing, walking, etc. Then walking home from the luncheon I attended (meeting people for the first time although we all shared common interest) finding it almost impossible to put one step in front of the other. Upon arriving home I collapsed in a chair and did basically nothing for about the same number of hours as I'd been active (something like 4 or 5 hours) before I recovered. I put that down to my adrenal glands producing enough cortisol to carry me through normal activity, but I'd been in a pleasant but apparently slightly stressful situation, and there was nothing extra to cover that. I was at that time at 2 mg pred, have since reduced to 1.5. So the adrenals are working, but they sure aren't as efficient as I'd like them to be. It's getting better.
Never mind the rate of the taper, which is startling to say the least, especially after 10 mg. But what about your adrenal glands? Are they going to step up to the plate within two weeks of your starting 7.5? Is he planning for you to have an adrenal crisis?
This article, although addressed to people with a different ailment, explains very clearly why and how people who have been on long term steroids must taper very slowly.
I found the article very helpful Heron, thanks for sharing it. I am so glad you have a practice nurse that you trust englishrose. I am aghast at the regime your Rheumatologist is ordering. I just know that I would be very ill indeed reducing that fast. It seems almost irresponsible and contrary to everything I have researched. You really need someone more acquainted with PMR. I would be seeking another doctor as a matter of urgency. It is done, I am with my second recommended Rheumatologist. She's great!
He's crackers - not only does PMR/GCA not often go away in a year, methotrexate does not work reliably in PMR patients even to reduce the dose - it does not replace pred altogether. If it did they'd use it in PMR. They don't. And it is held by many top experts that it has no role to play at all in GCA (which I assume you were diagnosed with given your starting dose, or has he ignored all international guidelines in managing PMR?). However - GCA may go away more quickly than PMR but that remains to be seen.
But above all - you are currently at a dose where your adrenal glands don't have to do anything. You may be very very lucky and your adrenal function may be able to take up the slack while reducing from 15 to zero over 5 weeks but somehow, after being on 60mg at the start, I think it is unlikely.
If it is PMR you were diagnosed with - you are still at what is commonly used as a starting dose - you would expect to be OK at that.
I'm very pleased you have the NP as back-up. But reducing as he says below 7.5mg though, do please be very aware of the risks of an adrenal crisis and be prepared to get medical help if you feel ill.
I think your assessment of him is right and I don't want to add Cushing syndrome to my medical list. I am seriously thinking of talking to my Nurse Practitioner as I have an appointment next week. She uses the DSNS method and I am sure she will talk to my primary doctor and if necessary I will change the Rheumatologist.
I have had GCA/PMR since July2010. I was started on Methotrexate in February 2012 and am currently taking 20mg weekly and 7.5mg Prednisolone daily.
I am sceptical about the efficacy of Methotrexate since I still have not been able to get to zero Prednisolone despite having taken this drug for over 5 years. Good luck with the taper.
hello englishrose ive been on 25mg methotrexate for 3months and managed toget down to10mg pred a day but it all flared again and i had to go back up to25 mg pred ive had no side effects on methotrexate but i was managing to reduce pred but you dont know whats coming next with gca what works for one dont allways work for others my rheumatologist and gp are baffled more hospital scans now to try to find out the cause best of luck if it works for you great
Thanks for your input. No two people seem have the same out come of being on Methotrexate and Pred. I also see that most people get a flare when they get to between 10 mgms - 7.5mgms even on MTX. I think I would rather try the DSNS I will talk with mt N.P.
I'm also on 4mg pred and MTX injections. My rheumy wanted me to drop to 2.5 from 5mg, but I said I wasn't comfortable with that and asked if I could go to 4mg instead. He said ok but I'm still in too much pain at 4mg. My CRP was 7.5 at 5 mg which I'm not sure if I should've dropped at all. I'm not sure if the MTX is doing much of anything.
Hi tiasbear, how did you feel at 5mg? Did you feel OK to drop? If you are in so much pain now it really does seem you should increase again to where you were last comfortable. Some rheumatologists seem to think because you are on MTX you can just drop large amounts of pred at a flick of a switch. Below 10mg I never dropped more than half a mg although I was not on MTX.
Some days were ok at 5mg and some not so much. This is my 3rd attempt going from 5mg-0mg. The first two try's didn't work but I wasn't on MTX either. So I was hoping the MTX would make a difference. I'm not sure if it is or isn't.
Hi tiasbear, a lot of people say that MTX really does not make any difference, although a friend of mine who started it right at the beginning with pred reckons it helped her. I think the jury is still out on MTX for PMR. It sounds like you may need to go a bit higher than 5mg to get the inflammation really under control. Reduction may then be easier.
Just to add to piglette's comment - while mtx may help you reduce it won't necessarily allow you to reduce to zero (in fact it probably won't), just to a lower dose than you may have done without and possibly with fewer reduction side effects. So maybe you have been able to get to 5mg instead of 7mg and more easily and comfortably. That is the case for one of the people I know on mtx - lower but not off pred.
That's good to know. I had a difficult time my 1st two attempts from 5mg-0mg. and had to go back up. (no MTX then) He wanted me to drop 1mg every two weeks, but I'm going to tell him "no way!"
Whatever the case of the PMR - at this stage you also have to consider return of adrenal function as you reduce. The slower you reduce the more likely it is to get going again without you feeling unwell. While you are above about 8mg pred the body makes no or very little cortisol - it is essential to life so if your adrenal function is slow to recover you may feel quite unwell so be watchful.
I think you have been very very lucky so far to be reducing by such great numbers. I am also of the opinion after reading everything I can find on methotrexate; that it is of no value in PMR/GCA. Even with the new drug that's being used in the US Actemra , once you hit 10 mg it's 1mg at a time and two weeks at a time. I would say be very careful and if your symptoms start to return be aggressive in locating your doctor for his advice. Then again you could continue to be lucky. I wish you the best I hope this works for you.
I came down from 20 mgms to 15 today so I am not feeling any change at this time. I am not happy about the regime the Rheumatologist has laid out and he adamant that is his way of treating PMR/GCA although he would or could not give me his success or failure rate. I am seriously thinking of having my Primary and his Nurse Practitioner treat me then I could do the DSNS method which seems to be the preferd way to come down off pred and perhaps stop the mtx. The heat and humidity at the moment is my biggest problem I feel more menopausal then anything else.
I just went to the rheumatologist and was given the same exact formula for the prednisone. I am currently on 15mg and will reduce like you are doing. I am supposed to start taking the methotrexate 5 pills of 2.5 once a week along with folic acid daily. How is this working for you? I am supposed to start this methotrexate next week and I am going on a trip on the plane. He said the methotrexate with not get me sick. Any advice would be helpful.
When I posted here saying I was to stop at 5mgms the replies came thick and fast that it was a bad idea. I had started at 60mgms. I saw the Nurse Practitioner at my Primaries office, she said no way and was bringing me down by 2.5mgms every 2 weeks. I got to 17.5mgms then flared up and so I went up to 20mgms. In the meantime my Doctor had talked with the N.P, and they had decided I needed a 2nd opinion. I had an appointment yesterday at The Mayo Clinic and saw the Rheumatologist he talked, listened to me, examined me, ordered blood and x-rays. (which the previous Rheumatologist had only talked at me and told me it was his way so I chose the highway) Here is his idea of medication. I am on 20mgms Pred. and to stay on MTX. for the time being. He wants me to come down from 20mgms by 1mgm every 2 weeks.I am to call him Monday for the results. The x-rays were of my feet as I get fleeting pains in both feet to exclude stress fractures. When I talked about PMR/GCAuk and the reduction he knew about it and also mentioned that Dr Gupta had presented in Southend. The "Aunties" were against stopping at 5mgms that was why I saw the N.P. and got a second opinion and I am glad I did. I will add any information he gives me on Monday. I am sure you will be getting information from the "Aunties" too.
He has a convenient crystal ball does he? He cannot know - and if it were me I would say I would start the methotrexate after I am home from my trip at a point where it won't matter if my body protests for a day or two until it gets used to the new drug. Probably the majority of patients are fine on mtx but quite a lot feel flu-ey for a day after taking it and some are nauseated. Neither would be ideal on a flight - or travelling of any sort. What's the rush?
I'm on Methotrexate and while it doesn't make me physically sick, it does make me feel very spaced out and a bit dizzy. I won't drive the day I take it. My friend who has RA is on a higher dose and it makes her sick. She says taking it at night helps. I must say after reading the information here, I'm sceptical about its value. I'm going to raise this with my Rheumatologist when I see him again in a couple of weeks.
I don't know that it is doing any good. I asked my new Rheumatologist whether to stop it but he said stay on it and we will visit it again in a couple of months. I don't read that any one is really enthusiastic about the results of taking MTX. Perhaps you will share with us what your Rheumatologist says.
Well I wanted to reread all of the post on using the Methotrexate with the prednisone. I have a appointment with my Rheumy tomorrow which was postponed due to pain issues increased dose. So at about 5 months I am back to where I started lol on 15 mg prednisone. Most recently at 17.5 lowest ever at 12.5 though he wanted me on 10. Anyway I suspect the cell on Methotrexate tomorrow for which I am not willing to assume the risk of side effects or potential or serious issues. We'll see what happens.
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