Methotrexate or not ?: I saw my consultant last... - PMRGCAuk

PMRGCAuk
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Methotrexate or not ?

I saw my consultant last week, who is absolutely spot on. Now, she has said I may need to go on methotrexate after next appointment - may2019.

I noticed that you PMRpro didn’t and I wondered why. I’ve read the bumf on it and I’m undecided.

Posted too soon I hit the wrong button.

I have trouble getting below 5 mg and I’m presently 7.5 mg 2 days and 8 mg 5 days which is fine at the moment. I reduce .5mg one day a week.

I have both GCA& PMR.

Thanks

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I agreed to try it though stipulated I would stop it after a month as I was heading for an international meeting in Seoul. Whether I would restart it depended on my experiences. By the week before we travelled I could barely walk into the village - the fatigue was worse than anything I ever had with unmanaged PMR. The mtx appeared to emphasis things I have been told are pred side effects - and which I had never experienced with pred alone, at any dose. I was hungry - not for me the nausea that means most people lose weight, I gained a kilo in a month and it hasn't gone yet! My hair fell out in handfuls despite folic acid, the bruising was epic compared to pred alone.

But above all - you are already at a physiological dose. mtx is unlikely to get you down that last 5mg - apart from anyhting else it depends on the return of adrenal function from here on in and mtx has no part to play in that. Most doctors are delighted when GCA patients are at that low a dose. Immunologists are concerned about adding immunosuppressant drugs to pred - for good reason. It appears to increase the long term risk of other immune system problems, not least cancer. And it adds another layer of side effects - which I would say is totally unnecessary. mtx does not replace pred - whatever she tries to tell you.

She is talking rubbish I fear. My answer would be a firm no.

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I can’t be doing with any more side effects - my hair is just nearly back to normal, my weight is fine. My body is one big bruise and the fatigue is manageable at the moment.

I need to think about this.

Thanks

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May I ask what happens when you get below 5mg?

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Hi

Pain so bad in hips I can hardly walk - shoulders very painful as well.

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Have you tried reducing even more slowly than you have been?

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Hi.

I have been reducing .5 mg over 7-8 weeks for 3 years now with a few hiccups and I think the consensus is if you’ve been on pred for more than 2 years to try methotrexate.

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Well, there are plenty of people with bad tales to tell and there are those who have written at other times who are doing well on it. It is undoubtedly a powerful drug with potential serious adverse effects. I’ve noticed over the years in work and on the receiving end that most doctors play down adverse effects. It is a tricky decision and one where you need to get an unbiased risk assessment of whether a low dose like 5mg, if it works for you, is really so injurious as to justify Methotraxate. What exactly are they worrying about? Also, I would want to know what their plan is to guard against adrenal insufficiency if they try to drop you fast. Have they checked with a Synacthen test that your adrenals are capable of taking their new faster reduction plan if you start Mtx?

I don’t have PMR, just GCA and I have been surprised at how tiring and painful reduction around this level can be especially in my shoulders for a week or so. It starts after 2 or 3 days of a couple new doses in the week, especially if they are consecutive days. You might have some of that, but you know your body. Some people have said the same, pushed through and come out the other side. However, it’s a tough call to know whether it’s a flare or not.

If you do start on Mtx make sure they schedule frequent blood tests including a baseline set before therapy. See below what should be offered under heading Monitoring Requirements. Good luck with it all.

bnf.nice.org.uk/drug/methot...

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Lots to think about thanks

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I think not - what evidence there is, is that IF it is going to help it should be started at the beginning so after 2 years it is a bit late.

And the 2015 Guidelines say nothing of the sort - Recommendation 7 here:

rheumatology.org/Portals/0/...

The median duration of pred treatment for PMR is 5.9 years. mtx doesn't replace pred, it may reduce the amount you need - but at this stage you have both PMR and adrenal function in the game. 5mg is a low dose - mtx is pointless now.

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I see recommendation 7 and wonder because I’ve had 3 strokes whether consultant thinking of that as she says there’s no evidence linking GCA to stroke.

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REALLY? Not my impression - she really needs to get uptodate and she wouldn't be my rheumy much longer.

There is an increased incidence of stroke in the first year after diagnosis of GCA. And this study

ncbi.nlm.nih.gov/pubmed/176...

came to the conclusion that stroke is "a rare but dangerous complication of GCA".

This ncbi.nlm.nih.gov/pmc/articl...

states "Patients with GCA are at higher risk for developing subsequent strokes [3–5]." - giving 3 references to the claim.

One of them, ncbi.nlm.nih.gov/pubmed/247... says

"Giant cell arteritis (GCA) is the most common vasculitis in people ≥50 years and can be associated with stroke. We aimed to evaluate the epidemiology and characteristics of stroke in patients with GCA."

So others, with a far greater knowledge of GCA, are of the opinion it is so. Who is she to disagree?

It is something I have asked experts a few times - the slightly pathetic response was that "it is an increased risk - but the risk of stroke is still small..."

Not if YOU happen to be the person with the stroke.

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SnazzyD I've been below 5 for more than 2 1/2 years. Ocular pressure reduced to normal, blood sugar became normal (although I never did go back to eating many carbs from grain, not a big sweet fan anyway) and I suppose any bone thinning has slowed or stopped. The deathly fatigue which first hit at about 7 mg has gradually gone away, but I do tire easily and I seem to have a degree of myopathy and need to see my physiotherapist fairly regularly for various pains which are not PMR related although may be a result of a combination of age and pred treatment. I never gained weight but have lost a bit more (I now weigh 100 lb, more than 20 lb less than I weighed most of my adult life) and as for hair and nails, probably pretty much back to normal. I do find my scrapes, cuts and bruises heal much more slowly than they used to, but in the course of this PMR journey I've passed the 70 milestone so a lot of the creeping decrepitude is most likely due to Father Time.

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You are surely way under weight! Are you tiny?

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I never used to be. In my early days I was usually the tallest (and youngest) child in my classroom. I towered over earlier generations but was within average range for my age. Then in the past couple of decades the younger women are towering over me, and I have shrunk by at least two inches. I hit 150 lb when I was about 15, and promptly cut back what I ate at lunchtime - I was being fed two dinners, really. I went to 135, and over the years gradually lost more, settling at between 120-125 after the children were born. I had a feeling I would be a thin old lady as after every crisis I would have lost weight most of which never came back. but I didn't expect to be disappearing! My BMI, allowing for the loss of height, is 17.2 which is scary.

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This is rather scary if you are of normal height.😟

I am 164 cms (was 166 cms - age and OS changed that) and weigh 135 pounds, which is fine.

I can eat what I like, when I like, not like many with PMR, I was one of the lucky ones that lost weight.

Enjoy the Christmas goodies.🍾🍸🍷🎂🥂🎄🎄

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As there's a baker in the family we get a surfeit of goodies! I guess I'm about 162 cm now. Used to be 167.

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Lord - hope I don't lose 5cm! I only just scrape in at 155cm (5' 1") anyway. I was once told at a medical for nursing that I was barely 150cm (4' 11").

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I looked into this extensively as my Rheumotolgist wanted me to go on it as a steroid sparer. I had had a flare at the time. I looked at the potential side effects & decided that they were a lot worse than pred side effects & thanks to this site realised that it's relatively normal to have a flare. Furthermore, my brother had an allergic reaction to methotrexate and became temporarily paralysed; he was alone and unable to reach for the phone to call an ambulance

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Omg it gets worse. I’m so sorry is your brother ok now ? I’ve got 6 months to think about this.

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My GP has several patients on it who are not experiencing any side effects

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Totally agree with everything PMR Pro says - I was put on methotrexate after 7 months of pred when I was at 22.5mg having started at 60mg for GCA. Within a few weeks I felt so ill, utterly exhausted, hair fell out, staggered on for four months and then came off it. I quite quickly began to feel better. I was prescribed it because of the damaging side effects of high dose pred,but at 7mg the side effects are so reduced I can't believe it's necessary, plus as PMR pro said you can't reduce quickly because of waking up the adrenals, so why prescribe it. I just am so reluctant to add yet more drugs into ones body after the ordeal it's gone through! I am sitting on 7mg for a time, under the Rheumatologists advice, to let my system readjust.

My sympathy, it is so difficult to know what to do.

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Thank you

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After 6 years with PMR now on 6 mg pred and have been injecting 15mg mtx which seemed to help for 11 months. Then got pneumonia and had to stop mtx. Don't think I will go back to mtx. Still recovering from pneumonia and find it hard to even get up the stairs. My legs and shoulders seem to have got bad again but will wait till recoverd from pneumonia before making any changes. My lack of mobility really hacks me off.

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Thank you for reply. Get better soon

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Slowly, slowly - you’ll get there.

🍀🎄🍾🍸

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I was put on weekly 15mg mtx by specialist (in France). Am now 20 months in with PMR/GCA and down to 6mg Prednisone. Maybe a bit early to judge whether or not adrenal glands are getting back into gear. Fatigue is minimal and quite manageable ( just 1 hour midday rest per day). I can manage gardening, lots of stairs all day, long dog walks, hauling in the wood and foreign travel etc. Apart from some initial hair loss (all growing back now) I haven't had any upsetting side effects. It may be a question of individual tolerance? I have 100% confidence in the specialist but have brought up the question of yes/no mtx injections and mentioning this site as reference: PMRpro's experience is quite scary so next consultation (Feb.) I'm going to air my concerns again.

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Thanks it’s a difficult decision to make and there must be good and bad experiences out there.

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I am trying to come off mx, my hair has been falling out which I am upset about. I take it every other week now with a view to stopping it altogether.

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Did it help reduce steroids ?

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It did at first Pamela but can’t reduce easily now. X

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Why "trying"? You can just stop it, unlike pred.

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I have been on 15mg MTX for 40 weeks now. Not too many side effects. Yes, serious hairloss, but that can be a side effect from the prednisone too. (I have a wig now.) I started with 60 mg pred in january, and was on 10 mg in may. So it seems the MTX did help with tapering. Had a flare in july after a very nasty tummy bug and had to go back to 15mg. I am now on 10 mg again.

Everybody reacts differently on these powerful medicines. You can always stop if it doesn't work for you. (Not with te pred of course, but with the MTX.)

All the best!

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Diagnosed with PMR/GCA (May 2016) I was on high doses of prednisone gradually tapering over a period of about a year. Methotrexate was then introduced (15mg once a week). The melding of Prednisone and MTX has continued with close monitoring; prednisone being reduced gradually to now 1mg every other day and MTX 20 mg a week. I take folic acid and get a prolia shot every 6 months to counteract negative impacts to my body. I've had no adverse affects from MTX. I know there are many opinions on MTX and I've researched a lot of documents but decided that my rheumatologist and I would work together on this plan as it seemed to be the best one for me. So far so good with good blood work results and the lessening of pain. (please note: this is just addressing the MTX issue and doesn't take into account the usual prednisone side effects and then withdrawal symptoms, all of which I had.)

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I understand there are so many different experiences with methotrexate - thank you for helping

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This forum is so good for people to be able to share different experiences and help us all make the right choice. Good luck with whatever method of treatment you choose.

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