I have an excellent rheumatologist but it’s the first time I have seen her since before Covid. Earlier this year I saw a kindly nurse practitioner who wanted me to take methotrexate which I refused.
My rheumatologist had a different view which I am sharing for general information. She said had I been in my fifties she would definitely have put me on it but that at 77 it was unnecessary considering both age and yet more potential side effects. She’s suggested 10 more months of trying to get down on steroids (currently on 8mgs. Stressful year!) Then another dexa scan.
I explained I had neck pain and she got me an immediate neck x-ray ‘ Rule out another possible cause and if it’s not PMR it will give you the confidence to keep on reducing. It’s important to check that PMR isn’t masking other conditions.’
Just a couple of points of general interest and perhaps the importance of communicating with a good qualified Consultant rather than a good nurse practitioner. 😀
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Thelmarina
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Interestingly, I was also told I should be on Methotrexate because I was still young and been on steroids for over 4yrs. (I'm 65yrs!) and needed to get off steroids. I'm on 3mgs of pred. I refused too for the time being.
That was more or less my argument too. Rheumatologist didn't like being contradicted though and went on the offence trying to shut me down! Thankfully, all I've learnt here gave me enough of a voice to feel confident enough to stand my ground!
I was uncharacteristically really angry at the rheumatologists arrogance and ill-informed advice. Six months she's been dancing around my 'issues' with still no answers and therefore no treatment plan for moving forward... despite over 20 different blood tests and three x-rays. The stupidity of some of her comments & advice were beyond belief.
It's hard to reach a mutually agreeable treatment plan with such abject stubborness, and incredibly frustrating.
Me too, but like I already suggested...egos possibly get in the way!!
My son gets married in 3dys time so I'm off to the Cotswolds.
I have a rheumatology appointment when I return, but until then I'll focus on the wedding and take an extra few mgs of prednisolone to ensure I have the best possible day with the minimum amount of fuss.
If the rheumatologist doesn't like it.... tough! She's had 6mths to decide what's going on and failed, so I feel more than justified in taking things into my own hands.
Yes she is.....it was following a very amicable discussion that resulted in me not agreeing with some of her advice that she thought it might be helpful to refer me to her colleague (also at Southend) for a shoulder scan.
Her colleague was older and supposedly more experienced but also the rheumatologist who I felt wanted to 'lock horns' with me and gave me the inaccurate information and incorrect advice.
The first rheumatologist is much more open to allowing patient input.... she's just quite young still and not yet built up that breadth of knowledge that only time can bring.
I absolutely did! (It's a she actually. 😄)She was so arrogant though.
For instance, when she said she wanted me off steroids by Christmas... by 1mg per month (I'm on 3mgs) my exact words were;
"I can tell you now, that's absolutely not going to happen".
She asked why and I explained about adrenal insufficiency and a slow & steady approach, etc.
She said my adrenals were fine and would be, and seemed to have no concept of the connection between steroid reduction and the impact on the adrenals.
This was just one of many issues where I knew categorically she was wrong.
If I mentioned Dr Sarah Mackie she visibly scowled and shook her head.
I knew my words were landing on deaf ears but I stood my ground so there was little she could do.
I wrote a letter to the specialist PMR nurse complaining about the serious inaccuracies of the understanding of PMR that I'd experienced. She'd worked for many years with Prof Dasgupta and although she had to remain professional it was obvious that she agreed and empathised with me.
So adversarial! She could do with a course for people management! Good job you are feisty but for tired aching patients without a gift for words this woman causes pain.
Haha!...I don't actually think I'm a feisty person.
I certainly try not to be confrontational but I definitely won't sit back and listen to someone who's supposed to be an expert in her field, telling me things that I categorically know are incorrect.
My rheumatologist gets paid to do a job based on appropriate training, an expanding knowledge of her field of expertise and the ability to apply all of that to sound decision-making.
You're absolutely right.....anyone less able to self-advocate would not necessarily receive the best treatment programme for their own individual needs.
You HAVE got an excellent rheumy!!! Did you tell her what the nurse practitioner had said? Because SHE needs some retraining.
That is exactly what I have been saying about MTX all along. There may well be a place for it - but only if it doesn't cause adverse effects that make you feel worse than on pred alone. I was on pred at 57, should have been on it 5 years earlier. If I had been on pred at 52, would I still have PMR at 70+ having been on pred all along? And now apparently with adrenal insufficiency to deal with? I tried MTX - did nothing good as I couldn't it stick for more than a month, I felt so ill. They can't CURE PMR so anything used to reduce pred load must at least make you feel OK and not do any damage. That reduces the field a lot.
My rheumy encouraged trying MTX at age 59 after being on pred for 4 years of which I was stuck at 9mg for the last two. She reminded me I could always stop it at anytime if it didn’t suit me and that there were other steroid sparers I could try. I would not know unless I tried it. I was pleased to report no side effects when I did onboard it. She was also flexible when I suggested lowering my MTX weekly dose after I was repeatedly ill last winter.
As far as pred dose goes she was pleased and encouraged I got below 7.5mg of pred. Now our shared goal is for me to get down to 5mg pred. My taper has been slowed due to a number of factors but both of us are hopeful I will get there. She is totally fine with me tapering slowly which is appreciated, especially considering that many others report being pressured by their doctors to lower their pred dose quickly at great cost to the patient.
I consider myself fortunate to be one of the small group for which MTX is working without negative side effects.
I sure did! My first rheumy was horrendous….unprofessional, condescending, and actually accused me of lying and putting up my pred dose “without her permission”. Only lasted 3 appointments.
Interesting and encouraging! I am 55 and have been on more or less 12.5 mg pred. the past year. As you started MtX 10 weeks ago. No side effects on currently 17.5 mg... (20 toomorrow) I may see some effect, but no miracle. Goal is as you 7.5 mg pred. Did you fell any improvement or did it just allow you yo taper pred.?
I did have the sensation of the MTX “kicking in” for lack of better words, but it was when I stopped it for 3 weeks once last year that all the painful symptoms returned, so I knew it was doing something. I suspect MTX May suit me because I have other autoimmune “stuff” going on that responds well to it.
It has allowed me to taper from 9mg pred down to 6mg however when I tried to lower to 5.5mg I started experiencing adrenal insufficiency symptoms. It was also my son’s wedding so I have stayed at 6mg (also stayed at this dose due to symptoms triggered by a massage and subsequent stress from a family matter). I leave for a 2-week trip in 2 days so I may try to taper again upon my return.
I have been on mxt for a year with only feeling nausea now and again. I was on 5mg of pred and am now on 3mg I am doing a very slow taper will stay on 3mg for 2 months then change to this tapering that works for me. I will change to 3mg one day 2mg next day so you alternate your dose each day. I have been doing this for 2 years and I think it has worked for me. Then in 2 months I will go to 2 mg every day.
It does seem to be variable (MTX). I agreed to try it after two flares when I was on around 5mg pred. This was two years ago. I started on 20mg MTX weekly. I got to zero pred one year ago. MTX was reduced to 15mg earlier this year, and recently to 10mg. Our plan going forward is - all being well - to reduce to 5mg next spring and thence to zero. I developed PMR while in Australia and started MTX there but returned to UK earlier this year so my care has been split across two different rheumatologists (geographically and also private and NHS), both easy to talk to and willing to listen. I haven’t noticed any particular side effects and feel very fortunate to be where I am today.
How very sensible. I too have refused Methotrexate - I have Vasculitis Anca- and at 75 will carry on with steroids periodically to keep my joints moving.
That’s very reassuring information Thelmarina! I’m having a similar battle with a rheumatologist who wants to put me in methotrexate - I’m 75 , trying to reduce very slowly from 8mg and really don’t want to introduce another drug - I’m already on a cocktail of drugs!
This is a very interesting discussion for me. I am 61 years old and was diagnosed with PMR 18 months ago. I am now on 3mg Pred, have good but not total symptom control and my last CRP was 5. This, however, is not good enough for my consultant who has wanted me off Pred and onto MTX from 3 months in. She is very concerned about me being on long term Pred at my age and, I think, is worried that something else might be going on.
I have resisted MTX so far but my BP and Cholesterol have both gone up and that does concern me. I feel that there's no point being on two drugs at the same time and she hasn't convinced me that I will definitely be off Pred within a short time. Plus, I don't want to get a lot of illnesses and be bouncing on and off Pred. I'm also concerned about the association with cancer, which I don't regard as a trivial risk. I would be very upset to lose my hair. I'm not a pretty woman and I need it! I feel that she rather downplays the risks and side effects of MTX, which she seems to regard as a rather benign, well tolerated drug with few problems, unlike Pred, which she has told me she doesn't think would be approved if it was being developed today.
When you read up on MTX the idea of contacting your doctor straight away if you get, say, a sore throat is laughable.
It disturbs me that you have to wash your hands after touching MTX, presumably so that nobody else is harmed by merely coming into contact with a trivial amount of it. How toxic must it be?
I've looked around the internet and the evidence supporting the use of MTX in the management of PMR seems to be decidedly thin as far as I can see.
Having said all of the above, everyone's circumstances are different and some people may benefit from MTX when Pred is not working well or isn't well tolerated.
I had to switch off of Prednisone (7.5mg) because I was developing Macular Degeneration. So I switched to 400mg Hydroxychloroquine over a one month period. It was successful and after reducing HCL for two years, I am now completely off of everything. I still have “ghosts” of PMR every once in a while, but for the most part, no further problems. I am 74 (male) and US. My rheumatologist was excellent and I could literally call her office and FaceTime with her (during Covid and after) anytime.
So. . . .there is hope that the disease will at least go into remission (if not go away completely). And there are alternatives to steroids and/or Methotrexate.
Not a doc here, so I am just relating my experience with PMR. As an aside, I still firmly believe my taking Simvastatin led to my four year battle with PMR,
I am male 74 too. Cuttently on 12 mg prednisone and on 20 mg mtx weekly. Rheumatologist says he thought pmr at first but now psoriatic arthritis. Also in pa. Who is your Rheumatologist. Thanks
Interesting. I'm 74, on 7.5 mg pred now after 2 1/2 yrs and my rheumatologist wants me to start methotrexate!!!! There's not a lot of consistency within the NHS is there?
I am 81 and currently tapering down to 4 mg. after a flare. I too have refused MTX in the past and from what you are all saying I don't think it is going to make a huge difference to my recovery anyway. I too am on a cocktail of drugs; I have however agreed to take hydroxychloroquin because it seems to have fewer side effects - I wonder how many others are on this?
Mine like yours is Golden. i am down to two mg at age 78 and watching symptoms as we go to make sure PMR symptoms not masking other conditions. Trust you good rheumatoligist!
I was going to say, from stories I've read on here, sometimes the nurses know best, sometimes the GPs, sometimes the rheumatologists (rarely, but sometimes :)) But truth be told when it comes to treating PMR even the 'experts' know very little as negligible research has ever been done. In 12 years I've learned to seek different advice and opinions from many by askign lots of questions and challenging what I'm told, but ultimately you have to make up yor own mind as to what to do. The only advice that has been consistently right and useful is that which I've got off this forum
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Need a good rheumatologist please
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Update re Sensible GP, Rheumatologist not so much…
Rheumatologist thinks I may have GCA
Good appt. For a change
