Quick update - 3 years since diagnosis.

[TrevConway]

Quick(ish) update from me as it may help others. I’ve had PMR for over 3-years. Actually GCA was suspected too at diagnosis, but never confirmed. I remember feeling like superman when I first took 35mg of Pred. Anyway, the PMR hads’t burnt itself out and after a couple of years with it, I couldn’t get below 12mg. After taking 15mg of Methotrexate weekly, tapering was great and over the following 4-months got down to 7mg. When on 6mg, I was sent for a pelvic scan as my symptoms were those of advanced osteoarthritis in my hip. I was also having private weekly Physiotherapy for pretty debilitating lower back pain. I had suffered for a month trying to stay mobile. At this stage I must add that I race a Caterham car, so I consider myself a young 62 year old. 😊. Anyway, having not been to a rheumatologist’s consultation for 6-months, owing to NHS cancellations, I decided to increase the Pred to 7.5mg and check in with my GP: I am now pain-free and have been for 3-weeks. In the absence of anything from the local Rheumatology department, I am going to see my GP again and ask for my Methotrexate to be increased to 20mg/weekly. I know that Methotrexate is not favoured by all on this site, but I’m a fan and will keep you posted.

[DorsetLady PMRGCAuk volunteer]

Hi,

Good that MTX suits you.

But as I have no experience of it, just one question - if the increase of Pred to 7.5mg has sorted out your pains whilst remaining at 15mg MTX then why are you intending to increase the MTX?

Or is that the norm - to increase MTX as you decrease Pred?

[TrevConway in reply to DorsetLady]

Blimey, I’m no expert, but I can tell you what I understand, having had several chats with my GP and the Rheumatologist.

PMR in most patients will burn itself out in a year or two. It will then be dormant and hopefully won’t flair up again during life. Clearly we’re in awful pain whilst PMR is present, so we take Pred to suppress falsely triggered inflammation, thereby stopping the pain. You guys explained it so well with the bucket analogy. The amount of Pred we take has to be sufficient to keep the PMR in the bucket. The severity of our disease will determine the rate at which the bucket fills. If the balance is incorrect, the bucket overflows and the awful PMR symptoms will be very apparent again.

Methotrexate is a chemo-agent and it targets the disease, not the symptoms. Long term sufferers must have a body/disease combination that doesn’t facilitate natural burn-out in a couple of years, so it makes sense to target the disease, if the patient wants to be free from

it and the side effects of Pred. I have osteoporosis and so i’d like to be off Pred. I’ve still got fluids in my neck and chin, which I’d rather not have either.

Methotrexate has clearly weakened the PMR in my body and reduced the rate at which the bucket was filling: hence I was able to breakthrough the 12mg barrier and get down to 7mg of Pred in a relatively short space of time. The Rheumatologist told me, back in March, that I’m on a lowish dose of Methotrexate, at 15mg and not to be surprised if I have to go to 20mg on this journey, which is a common dose. I’m at that stage I think because I simply can’t reduce below 7mg without feeling awful. I reckon if I increase to 20mg, the bucket will be easier to contain as I will be able to continue to taper at perhaps 0.5mg/month. If I can continue to reduce my Pred intake with a slight increase in Methotrexate, I’ll be on my way to where I want to be and i’ll report back.

[DorsetLady PMRGCAuk volunteer in reply to TrevConway]

“PMR in most patients will burn itself out in a year or two. It will then be dormant and hopefully won’t flair up again during life.”

Don’t know that I or many would agree that PMR burns itself out in a year or two - more likely 4-6years on fairly recent research.

Plus you must remember that as PMRpro says 7mg is a physiological dose, so your adrenal glands need to start working again! Which can add to the problems of reducing. When you say you feel awful - what exactly do you mean?

But if MTX works for you, then good!

[TrevConway in reply to DorsetLady]

Feeling awful - I mean: fatigue, shoulder and pelvic aches and pain. General stiffness and reduced mobility. Painful hands, which I know is strange.

I’ll sign off for now, but will post again in a few months.

I wish you all well. Take care.

[DorsetLady PMRGCAuk volunteer in reply to TrevConway]

Hi,

Fatigue could well be adrenal glands.

All the rest, including hands, are signs of PMR not being controlled.

[PMRpro Ambassador in reply to TrevConway]

Two totally false assumptions in there for a start:

PMR requires a median duration of management with pred of 5.9 years. Only 1 in 5 is of pred in 1 year, by two years that has risen to about 1 in 3. A lot of us need pred for a lot longer.

Methotrexate targets the disease mechanism in rheumatoid arthritis and other inflammatory arthritides and reduces damage to JOINTS - it has no effect on the disease process in PMR which is an underlying autoimmune vasculitis. Joints are not involved in PMR/GCA and are not damaged. mtx seems to change the way the body metabolises pred, potentiating its effect so you get the same result for a lower dose.

[PMRpro Ambassador]

Good to hear you are doing well.

It's fair enough when mtx doesn;t cause adverse effects - but when it does it is another matter altogether. But I wouldn't see any reason to increase the mtx if I was doing that well at 7.5mg after only 3 years. It is a physiological dose.

[Blearyeyed]

You are clearly well experienced in knowing when your symptoms need that extra help and what you need to do to help it when the appointments are too far away.

Thanks for posting your update and giving us more information about your experience if Methotrexate .

It's really helpful to read things on the different drugs , both good and bad , because it helps anyone giving regular advice on the forum to get a better picture of how well these things work so that they can offer a more complete answer on how these can benefit others.

And helps all forum readers whom might be thinking of taking MTX but are apprehensive a little more peace of mind about the decision.

[TrevConway in reply to Blearyeyed]

Thanks... that’s all I wanted to do: share my experience as it is. I’ll post again when (if) I’ve got something worth sharing.

[Griggser]

Thanks for your post, it was helpful to read. I’ve been in ores for over 4 years and can’t get below 12mg without lots of pain and discomfort. Currently I’m on 18mg as I recently had to go up to 20mg to get relief. I’m still in pain and my legs feel like cement and I also get fatigued very quickly. My crp reading are the lowest they have ever been and a recent mri has ruled out any problems in the hips where I get most of my pain. I’ve been retired 3 1/2 years now and am 63. I would love to hillclimb my JCW mini but struggle to maintain it, but never say never and I’ll keep tinkering! I have tried methotrexate and it did not help, nor did several other steroid sparing drugs but glad it’s helping you.

[TrevConway in reply to Griggser]

Thanks Griggser. I’d have no hesitation in recommending MTX if your Consultant suggests it. Seem that you’re in a similar situation to mine pre-MTX. I occasionally had to go back up to 15mg from 12mg and was frustrated. I’m a lot better now and will will post again to update on progress. Good luck.

[Marijo1951]

I've been on MTX since December 2017, starting at 10 mg per week, then increasing to 15 mg after a couple of months. I was originally prescribed the MTX because I couldn't get below 25 mg of pred without a flare up of GCA. The only problem I had with MTX was that it knocked me out like a Mickey Finn if I took it in the morning, so I lost the rest of the day to the sofa. I now set my alarm for 10 p.m. every Friday night and take it then with no problem. I feel pretty certain that the MTX has helped me to reduce my pred dose, although the fact that my rheumy is happy for me to manage my own reduction must also help. I have my blood tested for liver function every month as a safeguard.

I'm now on 7 mg pred per day and have been for about 4 months. At first, when I reached 7 mg I experienced even more extreme fatigue than before (something I didn't believe possible at the time...) My GP had me tested for diabetes, thyroid problems etc but nothing came up. I don't feel so bad now, so assume - though I wasn't given a synacthen test - that it was something to do with my adrenals waking up. I very rarely have typical PMR or GCA symptoms and when I do, they are mild and fleeting. I've agreed with my rheumy to get down to 6 mg pred per day by the time I see her again in January.

[TrevConway]

Thanks for sharing... it’s helpful.