with a smaller dose of pred... I'm down to 8mg (having got down to 6mg before a flare in the summer) any advice ? I must admit I do still feel pain too, but definitely want to take less pred as it has brought my bone density down and I have put on 14K in the last 15 months!any advice? I've seen that it suits some and not others and of course no idea how it would affect me...
the rheumy is suggesting taking methotrexate as a... - PMRGCAuk
the rheumy is suggesting taking methotrexate as a steroid sparer...
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It really is a case of you have to try it to see if it works for you - whether you can tolerate it and whether it does allow you to get to a lower dose.
However - with regard to the weight gain, try cutting carbs drastically, especially processed foods, added sugar and root veg and limit fruit except berries. It does work - I lost 35lbs of PMR and pred-related weight when I cut carbs and I am not alone.
Ditto what PMR Pro says about cutting carbs. Steroids hype your glucose which could tip you into diabetes. It did me. I was about 25-30 lbs overweight and prediabetic before steroids. I have since lost the weight but have full/blown D2. On two diabetes meds and was on Ozempic for a while. Ozempic helps you lose weight but one of the side effects can be queasiness for much of the day. Good luck!
Steroids helped get me into type 2 diabetes range. I got put on gliclazide but after. Months and a massive drop in carbs got myself into remission and off diabetic meds. Still in remission 6 years late and a lot lighter!
So glad to hear your discipline really paid off
As the others have said - ditch the carbs! I didn't put on any weight, in fact I lost more, which I actually could ill afford to do, but I was running high blood sugar so the incentive to live on salads and protein (nuts, eggs, cheese) was very strong. 
I'm vegetarian but seem the last few years to have been unable to tolerate the vegetarian's mainstay of beans and lentils.)
As for the bone density, have a read of my "osteoporosis" journey. You may get some hints from that as well:
healthunlocked.com/pmrgcauk...
It's always better to avoid introducing more heavy duty medications if at all possible, or at least keeping use of them to a minimum. Good Luck! 🍀
I have read your helpful article HeronNS. I was diagnosed with Osteopina of the hip and took AA up until 3 weeks ago when stopped the Pred. I want to improve bones without AA. I do a ballet class weekly and a yoga class weekly. Was swimming but have lapsed during the colder weather. I think I need to do more. Do you do some form of exercise every day?
Mostly I walk quite a lot, and I do exercises from a physiotherapist (have accumulated quite a portfolio over the years for nearly every body part!). I do tai chi for 15-20 minutes a day. Sometimes I use my Nordic poles, but have got out of the habit. Must start again. Swimming is helpful for bones only because it strengthens muscles which then exert more pull on the bones. You need to do weightbearing exercise, which is why I walk, but I know other people do other things, like sports or even weightlifting.
Thank you for your reply. I intend to up my repertoire a little. Keep up the good work and inspiration for others.
I went on methotrexate very reluctantly when I started yo-yoing around 8-10mg. I am one of the lucky ones. I have had no reaction to them and they have helped with the severe pain I had in my hands (probably arthritis too). I am now comfortably down to 4.5mg. Like others say you just have to try. The good thing is if it is not working you can drop it easily, not like your steriod journey...
I’ve (reluctantly) been on methotrexate since July. I thought I was doing ok and I was down to 5mg pred. However PET scan and bloods showed high inflammation and LVV. I had to increase pred to 40mg. I’m now on 10mg and a bit achey but nothing major. I’ve had no side effects from the methotrexate. I don’t know if it’s working… I suspect I’ll find out as I reduce my pred over the next few months (tapering by 1mg )
I started taking Mtx well over a year ago but stopped taking it 2 months ago pre surgery. I’ve no idea if it helpedto reduce the pred or not. I was on 16 mg and am now on 9.5mg. I feel somewhat better not being on the Mtx and having to inject the drug every week. Now debating whether or not to restart as it takes up to 6 wks to have an effect.
The literature refs are quite mixed on whether it does help with steroid sparing. I’m sceptical in my case.
On the topic of bone density, I am now having a break from alendronic acid after being on it for 6 yrs. the plan is to restart bisphonates via infusion in 2 yrs pending the results of a further dexa scan. I’m happier taking fewer meds.
Good luck, may be worth trying Mtx to see if it does help you?
Same here but it was a disaster for me and came off it, never to return, do read the small print
I’m down to 5mg of Prednisolone with the aid of Tocilizumab and Methotrexate. The Methotrexate ate is playing havoc with my liver function and I’ve been off it and then back on it at a reduced dose for a few months now. This is the last time I’m trying to reintroduce Methotrexate at a dose of 7.5mg.
I have been on Methotrexate for a few years now along with other meds for RA.I am on metojet pen injection which i found better than tablet form.As pmr pro said it is a case of try and see there is different strengths.I am down to 3mgs pred now just had first cortisol test was 195 to go for further test at hospital.I was off steroids two years ago for Polymyalgia but unfortunately it came back.Best of luck if you go ahead.
This is so helpful to me. My rheumatologist is adamant I go on methotrexate after the holidays and taper my small dose of prednisone. I’m dreading it.
There are no guarantees that MTX can replace pred. Don't care what they say!!!!
I am down to 3 mg. pred but have been told by my rheumy there is no way I will get off pred without taking MTX, since I have been on steroids for 3 1/2 years.....like many of us I am resisting, but just wonder if she has a point????
She might have... but I doubt it. Many have been on Pred for longer than you have and have got off pred successfully. {me included 4 and half years and much higher doses for GCA}....think she's led a very sheltered life. 😏
Thank you! That is actually what I wanted to hear. It's bad enough coping with steroids, plus stuff for COPD and a persistent UTI without taking on more drugs.
Certainly not when you are as low as 3mg...
Yee, I suppose 3 mg. is low - it is difficult to keep a sense of balance sometimes, and this is one reason why this forum is such a godsend. Literally.
I’m never sure why some doctors get in such a tizz when patients are on doses below 5mg. 🤦🏻♀️
Maybe its the pharmaceutical companies putting pressure on the doctors.....
No.. they’d be putting pressure to keep patients on Pred -not get off it!
unless Meta is a lot more expensive? PRED is cheap at least
Was talking about Pred and humlies doctor adding in another drug when at 3mg… and yes, MTX is much more expensive than Pred so pharmaceutical companies might be pushing that…
Ah... but they might be flogging MTX!
Maybe …
If you have a persistent UTI, the last thing you need is MTX!!! Are you on an antibiotic for it? Is it a culture-proven infection or cystitis symptoms all the time?
Yes, it is culture proven, and I have had 3 lots of antibiotics which have definitely helped, but I am left with a continuous feeling of cystitis. I am wondering if diet would help, and was fascinated to find, according to one website, that I should avoid cranberries since they are too acidic! I am also wondering if this is another side effect of pred; I seem to be having more side effects recently than I did in the first 3 years.
Have you tried D-mannose? It is the sugar in cranberry that has the effect - without the acidity. The other thing that causes the irritation can be calcium supplements - do you take AdCal or the like?
No she doesn't - even Prof Mackie agrees with me that if a patient is at 3mg or a similar low dose it is very silly to add another powerful drug in the hope of getting the patient off a VERY low dose of pred. Three and a half years is not long in the world of PMR (whatever your rheumy thinks, PMR does NOT last 2 years and then disappear) and there are two factors to be balanced, the PMR and your adrenal function which must return.
In much of the non-English-speaking medical world, patients often remain on pred for years but, unlike me, at a very low dose, under 5mg/day. No-one turns a hair! I had my Covid jab yesterday, here the form is always inspected by a doctor and the lovely young guy I saw yesterday wasn't in the least surprised at how long I had been on pred. Not sure how old he was - but he looked about 16!!! I gathered from the other staff that he is well regarded. My own rheumy is a world name in the field - if he isn't panicked about low dose pred, why should anyone else be?
Thank you again, PMRpro. More encouragement not to go down the MTX/hydrochloroquin route. How nice to have a lovely young guy in attendance, especially if he is well regarded! Hope you see him again at your next jab....
I haven't got PMR humlies, but I take Pred for another auto-immune condition. I'm on 5mg and struggling to get any lower. My rheumy says that it is safer for me to stay on the 5mg than to introduce mtx. He thinks that I'll be on Pred long term, and says that, whilst side effects at that level do minimal damage, he would like me to get a bit lower. However, as long as I can manage on a maximum of 5mg he won't be asking me to introduce any DMARDs. My friend has had liver problems after long term mtx use, and I was working myself into a frenzy about that and hair loss, so I'm really relieved that mtx is off the agenda for me at the moment. I hope that your rheumy supports you in avoiding it!
That's very interesting - thank you. What a divergence of opinion there is in the medical world (and in every other part of the world!) I think my rheumy has shares in MTX. It is great that the department rings me every so often to find out how I am, but somewhat wearing to have to refuse MTX every time. (Mind you I had the same sort of battle with statins, and it took about 10 years before they finally gave up the struggle) How long have you been on pred?
Just over 2 years humlies, which we know from this forum is not very long! I got to 5mg quite quickly, but have been there quite a while. Just done an incredibly long 6 month taper which didn't work. I think you're right about the divergence of opinion. When you add together the large number of inflammatory conditions, the difficulty in definitively diagnosing some of them, the variation of symptoms experienced and the variation in individual responses to medication, I suppose it's to be expected. My rheumy often smiles at my list of questions and can't answer all of them, although he always tries. I think this is because sometimes they are irrelevant! He is kind though and listens. I hope that your rheumy does the same.
I know. 😩
What dose of pred are you on - you say small dose, how small?
Sorry so long to reply. I’m on 4. 1/2 mgs now. Coming down from a short time up to 6.
Your rheumy is crackers! In terms of adding MTX that is - he might be quite sane otherwise ...
Yes. We have a very short supply of Rheumatology in our state. His practice abhors prednisone use. I have been on low dose since late 2018. It began to get me through my kids’ weddings/3 weddings in 2 years! I found how much it helped my back pain. Then Covid and my doctor had Covid probably 3 times so he became cracked🤦♀️ lol and away I went happily on 3 mg. Recent
Rotator cuff surgery and I upped it to 6. And have been slowly reducing. I’m 66 years old. I feel like if this helps me live a better life then let me choose!! I might add I’ve only recently been diagnosed with Dysautonomia by a superb neurologist The gift of lupus keeps on giving. He as well wants me to quit prednisone. And you say???
He may abhor pred use - but on that basis he either has to bite the bullet for PMR patients as it is the mainstay of management, consistently get funding for and use an IL-6 inhibitor such as Actemra or Kevzara or annouce he won't/can't take on PMR patients and they should look elsewhere.
When it is a patient with something else - such as lupus - where pred is the medication that WORKS and at a low dose - then it is poor practice to want to add a drug that he doesn't know works to get the patient off a low dose that DOES work!
Thank you. You have given me the strength to say no. I see him in February
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