Methotrexate

[Phoebenooby]

I developed undiagnosed PMR and blocked femoral arteries a few weeks apart in summer 2023. PMR Medics now pretty sure the PMR inflammation blocked my arteries, but likely not there now but scar tissue blocking them. Rheumy is requesting another pet scan to check. If the inflammation is still there will try Methotrexate…. I have read some PMR sufferers are offered methotrexate to help with tapering , but is it likely to do more than the steroids have ? Also will it be ok to have a PET scan 9 months after the first one? If it’s scar tissue looks like I’m stuck with it….

[PMRpro Ambassador]

For some people MTX will reduce the dose of pred they need. It only replaces pred in a small minority of patients but you have to try it to find out if you are one of them. Nothing cures it - just time and the medication is to relieve symptoms in the meantime.

Some patients get PET-CT scans every few months if they are needed to monitor their disease, they are mostly used in cancer. The radiation load is classed as moderate and it isn't considered that the total load will be excessive - they do keep records and if you are approaching "too many" the need is always balanced against the risk.

In the USA. Medicare is limiting reimbursement to 3 unless the doctor justifies the need for more so if you were to google it, that would be why you find links saying "not more than 3". You can have more than 3 if they are required. But believe me - the NHS won't be doing any more than they feel is needed! They are very expensive and the waiting times are long.

[Phoebenooby in reply to PMRpro]

Hi, thank you. If I do still have infammation blocking my arteries, how will MTX a help? I know with GCA high doses are given at the start to get rid of inflammation quickly, but I have missed that boat…. I was started on 15mg and have got down to 4.5mg in a year, my arteries are still blocked but I can’t see how the inflammation is still there? I would like to be helped but am a bit reluctant to have another PET scan and more drugs if they are just clutching at straws, and it’s not likely to unblock me. I’m in U.K. so I don’t have to pay, that’s not the issue! 😊

[PMRpro Ambassador in reply to Phoebenooby]

Have they done your inflammatory markers in blood tests? Were they raised before? The PET-CT is to assess if the inflammation has reduced - that is what it shows as well as the structure. That will show whether any of the blockage is due to swelling due to inflammation or if it is more likely to be scar tissue.

In theory, the purpose of the MTX is to boost the effect of the pred - so you need less pred and get the same antiinflammatory effect.

I know you are in the UK - I just mentioned the USA funding in case you googled it and saw "not more than 3" which could suggest it was danagerous to have more.

[Phoebenooby in reply to PMRpro]

Ah I see! Thanks. My markers have always been normal, ( that’s why late diagnosis ) but I think you mentioned on an earlier post my results were not normal but slightly raised when they first said I didn’t have PMR. As I said I would love to clear my blockages but am just nervous about more radiation and drugs if there’s only a tiny chance it might help…

[PMRpro Ambassador in reply to Phoebenooby]

It is to know what is going on better - it is always difficult when the markers aren't clear to the doctors. But I really don't think you need to be concerned about the radiation - there is a limit as to how much we can be exposed to at our age!!! Different matter if you had a chronic illness at 20 ...

[Phoebenooby in reply to PMRpro]

Sorry to keep asking….. if my arteries are still blocked , how will MTX help if the pred hasn’t?

[PMRpro Ambassador in reply to Phoebenooby]

It depends on what the blockage is - if it is still inflammation, then it should improve the antiinflammatory effect of the pred but it also helps suppress the underlying autoimmune disorder that actually causes the inflammation so no more inflammation will be caused.