I was diagnosed with PMR in April and started on 20mg a day of Prednisolone which was reduced to 10mg over eight weeks. The tapering does not seem to have caused any flares but I feel that I have reached a plateau and have not improved since about three weeks after starting the Prednisolone. I would say that I am about 80/85% better than I was before starting treatment when my CRP had reached 50; it went down to 9 and was 12 when I was last tested a few weeks ago.
However, my consultant started talking about putting me on Methotrexate within a few weeks of starting the Prednisolone. She feels that it’s a much better drug and that long term use of steroids is unwise. She even said that she doesn’t think that steroids would be licensed these days because of the dangerous side effects. I feel that she has downplayed the risks and potential side effects of Methotrexate, saying that the clinic prescribes it a lot and that with the correct monitoring it is not toxic and patients tolerate it well. The information that I have read about it is rather alarming and I’m not keen to take it. As well as unpleasant and potentially dangerous side effects it will involve quite a lot of monitoring, changes to my lifestyle and vigilance about infections. I have told the consultant that I have no intention of shielding or asking the adults who I live with to change their lifestyles for my benefit.
I am concerned about side effects from long term use of steroids and I am wondering whether I should try to taper down the Prednisolone first and see how I respond. I clearly still have some inflammation in my body because I still have symptoms but they are very manageable. However, my consultant feels that it is unhealthy to have inflammation in your body.
I’d be interested in hearing people’s views. Methotrexate works well for some people but will it enable me to come off the Prednisolone within a reasonable period of time? If not, then I will be on two drugs with two sets of risks and potential side effects. Is that worthwhile?
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Siena62
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I would say to be down to 10mg within a few months is pretty going -and the attached show that 2 respected Rheumies recommend keeping patients at 10mg for a year-
Your Rheumy may not like it, but Pred is proven to work for PMR, MTX is not, in fact Prof Dasgupta has said similar in the past. Think I know whose opinion I’d follow.
Your rheumie seems to have been reading fake news. If steroids were considered that bad they would have been withdrawn from the market. Steroids are a wonder drug with side effects, if used correctly steroids can work miracles. They are prescribed for around two hundred different illnesses including Covid. Methotrexate is NOT a substitute for steroids in the case of PMR. Some people are on steroids for life.
"She feels that it’s a much better drug " - I have to ask, has she ever tried it?
So are a lot of things - but they don't work for PMR!!!! MTX works very well for a small cohort of PMR patients but by no means all. If MTX was so good for PMR they would use it from the outset - they don't. The few small studies are not really very exciting: it took a year to see a difference in cumulative dose and when they went back 5 years later there were no differences between the groups in terms of pred side effects. Even Prof Mackie in Leeds admits it either works or it doesn't - no middle way. And she has been very pro-MTX as well as being in the throes of a study of its use in PMR.
Will you get off pred in a reasonable period of time? That isn't the question - it is
a) will you tolerate MTX, whatever rheumies think, a study with patients with RA where it is the first line gold standard treatment, found that a third of patients couldn't tolerate MTX at all either because of side effects such as nausea/hair loss or their blood monitoring showed liver problems. Another third stopped it because it plain didn't work after 6 months and the rest said it was OK. I don't call that much of a gold standard nor a "well tolerated effective drug".
b) It won't help quickly - it will still be months before you are likely to see a great difference. Most people I know managed a couple of mg less but never felt "right" - they needed two hefty drugs instead of just one. Her claim pred would never be approved now is drivel - it saves lives when there is no alternative. Used properly and carefully the side effects can mostly be managed and even avoided. Just doctors only see one path: here, take this other pill ... There have been a few people who did really well on MTX and got off pred altogether - but only a few.
I'm sure I had a c) - but it's gone!!!!
Yes, she uses it a lot. For inflammatory arthritis - and PMR isn't an inflammatory arthritis.
Sounds like your rheumie doesn't know much about PMR and is more used to treating other things that respond better to MTX. That's most rheumatologists unfortunately. She may mean well but maybe doesn't see many PMR and GCA patients. As you are well within the average time to have PMR, if it were me I'd stick to standard treatment which is steroids and think about MTX in a few years if you have problems tapering. For the time you've had PMR you're doing pretty well to be on 10 and things are under control, don't rush it, if you reduce too soon or too quickly things often flare up again. Read all teh info on the FAqs etc onhere and ask questions when you need.
Oh dear another Rheumi e with ridiculous opinions, I wonder why if steroids wouldn't be licensed nowadays, they haven't been working over the years to replace it!......
I would be changing my Rheumy, after I showed her this:
Information and Tips for people with PMR and/or GCA from Professor Bhaskar Dasgupta’s talks in Cardiff and Bristol on 24 May 2019
Bhaskhar Dasgupta.
1. Have your eyes tested once a year when taking steroids as they can cause damage to the eyes such as cataracts and glaucoma. You should also have an annual check for cholesterol (fasting lipids) and blood sugar control (HbA1c).
2. If you have GCA and have been on high levels of prednisolone and then start having eye problems like double vision, this is more than likely a result of the prednisolone and not GCA, particularly if this occurs in both eyes as GCA usually only affects one eye.
3. Side effects of steroids are most pronounced when the dose is 10 mg daily or above and the accumulated dose is more than 5-6 grams. If this cumulative dose is exceeded please discuss with your doctor regarding alternatives. Therefore, it is very important to get the dose exactly right for your needs – not 1 mg more or 1 mg less. The benefits of maintenance prednisolone under 5mg such as 1-3 mg daily generally override the risk of side effects.
4. Everyone is encouraged to keep a record of their cumulative dose of prednisolone and take it with them to their medical appointments.
PMRGCAuk have produced an Excel spreadsheet that you can use to help you record this information. It can be downloaded from our website under Homepage/Resources>Useful Documents and saved to your PCs. Or email info@pmrgca.org.uk and request one. We can also send you hard copy.
5. Sometimes as prednisolone is reduced and pain returns this could be from the PMR symptoms reappearing. However, it might be pain from osteoarthritis which is no longer being masked by the steroids. In this instance it is better for non-steroid pain relief to be used.
6. Exercise is important; Steroids cause myopathy (muscle damage/wasting) and fluid retention can occur which causes swelling in your lower legs and ankles. Exercise is the key to maintain muscle strength and improves circulation. Once muscle fibre is lost, it cannot be regained.
7. Long term use of prednisolone can cause depression. It can also cause sleep disturbance that leads to poor quality non-refreshing sleep, tiredness and lack of energy.
8. CRP is the gold standard blood test for PMR and GCA and is the same test throughout the world unlike ESR and viscosity. Persistent reading above 10 is a cause for concern. However, there is no need for checking blood tests too frequently. Steroid dose should not be adjusted based on blood test results alone.
9. Cut back or cut out alcohol when taking corticosteroids. A well-balanced diet with adequate dairy intake will help in reducing steroid side effects.
10. In my experience Methotrexate is not as effective in treating PMR or GCA as it is for rheumatoid arthritis although some trials have shown a small beneficial effect. Leflunomide, based on open case experience, is often more effective as a steroid sparing medication for treating both GCA and PMR. We are searching for resources to conduct high quality trials with leflunomide. Such a trial in PMR is running in Netherlands.
11. In many parts of the country, patients are already able to access their NHS records online and can then check the results of their blood tests. Please check whether this is possible with your own GP practice. You can also nominate someone you trust to access them, through GP online services. It is important for you to understand the meaning of the blood test results.
End
Then hopefully you will have educated her a tiny little bit.
PS: Professor Dasgutpa is a world leader on PMR & GCA.
Exercise is the key to maintain muscle strength and improves circulation. Once muscle fibre is lost, it cannot be regained.
😦That's really scary! I hope plodding around the house and up the stairs is enough! I don't understand the difference between flabby muscles that can be strengthened with exercise, and lost muscle fibre that can't.
Nobody, including the Physio that the NHS sent me to, has ever said that to me. The Physio said that the pred could damage my tendons, ligaments and muscles and prevent me from strengthening them while I was taking it but not that I couldn't recover once I stopped.
Thank you. Increases my concern about my 2 older sisters - both very large. One is determined to exercise even though she has problems with breathlessness but the other hardly leaves the house.
Very true in the case of my older sister. She complains about people who try to help her. Unfortunately she forgets which of us she has complained about to and that we talk to each other.
Sometimes the exercise improves the deathly fatigue too, But yes, it is important to keep moving, doesn't need to be a lot. Pre-pred I found aquafit good even with the fatigue - no opportunity to do it here unfortunately. I know quite a few people who have a mini-ergometer cycle and that does a great job of keeping legs going. It doesn't have to be all at one go - 5 mins several times a day is as good as half an hour all at once.
Thank you everyone for your comments. Could I ask what the ‘accumulated dose’ referred to in point 3 of Professor Dasgupta’s advice is? How does it differ from a daily dose which is measured in
The accumulated dose is the total dose taken ….which is why it’s quoted in grams rather than mgs.
For example over 4and half years with GCA -and obviously much higher doses initially (starting 80mg for 2weeks, 60mg for 6 weeks) my accumulated dose was just under 20 grams-considerably higher than someone with PMR alone.
I have been on Methotrexate for two months so far so good. I have been taking steroids since May 2020 for GCA and have had continuous side effects tbe whole time. Some of them like hallucinations have been very scary. I am hopeful the methotrexate will help me reduce the steroids below the 10 mg l have been of for 6 weeks.
I can only speak as i find , My GP gave it to me because i was in so much pain ! within a couple of hours of taking it started to feel really weird and dizzy, then the vomiting and upset stomach started. It took me two days to recover from one tablet, never again for me it felt toxic! on the other hand people on the site have breezed through taking it, But it was not for me.
In my ‘daily digest’ this appeared immediately below the post from Knit11 linking a study by NIHR showing increased risk of cardiovascular disease with even low dose steroid use long term. I wonder if it is articles like this that are driving the push to get us off steroids asap?
I’m in Australia and my rheumatologist is of the opinion that I shouldn’t be on steroids any longer than necessary. I started on 25mg in December 2020 had two flares at 5mg (no symptoms, just blood markers up) in August and October 2021. After the second one she started me on MTX. I’m now on 1.5mg pred daily and 20mg MTX weekly with bloods tested every two months and all good so far, no symptoms, no side effects. During this time I’ve had colonoscopy & endoscopy, wisdom tooth extraction, and Covid, with no change to my regime and no issues that I’ve noticed. I’m able to do more in terms of walking distance, exercise etc although not as much as pre PMR.
Reading through everyone’s posts is always illuminating, and helpful, and I feel very fortunate indeed that my own journey seems to be going well so far. What strikes me is how it is very much an individual pathway, we each have our own idiosyncrasies, and other health issues that may impact both on the disease and the drug regime, and the medical advice we receive can vary according to our consultant’s training and experience. I expect this doesn’t help you at all, but I do wish you well going forward.
I think people have covered a lot of what you write but my instinct would be to get a second opinion. You are entitled to see someone else, if you ask your gp they can do that. I am not sure where in the UK you are but people on here might be able to help you.
My Rheumy wanted me on MTX immediately but armed with the vast knowledge and real experience of pmrguk members I felt empowered to argue my case for not taking MTX and we finally agreed to differ. Never regretted that decision and I now get on very well with Rheumy who is now prepared to listen to patients and not merely rely on the PMR handbook.
I went on it because I’m diabetic and my rheumy wanted me off steroids asap which I agreed with. I have had no side effects from methotrexate. I think it HAS helped me taper from 7 to 5mg uneventfully. Everyone’s different. 😎
My first rheumy started pushing MTX at my first appointment. I had been diagnosed with PMR six weeks prior. I had lowered my initial dose of 20mg down to 15mg. I found it bizarre that she hadn’t even given me a chance to lower my pred further! Due to this, and her causing me to flare and accusing me of lying about putting up my pred dose, I stopped seeing her after only 3 appointments.
I went on to lower my dose down to 9mg where I got stuck for 2 years. I started seeing a new rheumy last fall and reluctantly started MTX in January as a steroid sparer. I’m lucky in that I have no real side effects and it’s worked thus far, but it’s slow going and still yet to be seen how “successful” it will be overall.
For the reasons you and others have cited, I didn’t consider MTX until I got to a place where I struggled for a considerable period of time to taper pred. A slow pred taper may work thus allowing you to onboard another potent medication (that isn’t recognized for its ability to treat PMR specifically).
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