update on update of aneurysm

[luv2read]

Well the doctor finally called me. Yes, I talked to the actual man himself! We discussed my options and came up with monitoring it every three months, which puts me in October. It has taken my doctors since early July to figure this out! While I’m not happy about that, I love this option. If it has grown even a little bit, he wants to operate. Again, due to my vascular issues and family history he is concerned. I feel as if a weight has been lifted off of my chest. (No pun intended).

Thank you to everyone for all your kind words and thoughts while I try to get through this very scary time. It truly helps me feel incredibly lucky and blessed to be a part of this forum. God bless you all!

[PMRpro Ambassador]

That sounds about right to me. What took them the time?

[luv2read in reply to PMRpro]

I did talk to his nurse every other day and he was not communicating with her at all regarding anything about me.

I do know that he is in surgery most days, but I still felt like a forgotten patient , which I know doesn’t make him seem like a good choice for a doctor, but he does have phenomenal success with aneurysm surgeries.

[Miacaro45]

Sounds like a good plan. 👍🙏🏻

[Numptybrain]

So pleased you got a solution acceptable to you. It’s so difficult just waiting but at least you now know they are keeping a close eye on you, rightfully so. Hope you feel a bit better now knowing this.

Take care

Wendy xx

[Phoebenooby]

hi, just read your posts about PMR and pad, I have posted on here about similar problems. I had PMR symptoms for 6 weeks then PAD symptoms…. PMR wasn’t diagnosed for 8 months and no one is sure if PMR caused my femoral blockages. I have no calcification…..

[luv2read in reply to Phoebenooby]

I had PMR for about 9 months before my first stent was put in my right femoral artery. I don’t think it was due to that though. I think at that point I had GCA (which took them forever to diagnose too).

[PMRpro Ambassador in reply to Phoebenooby]

The PMR itself almost certainly not, it hasn't been shown to affect large arteries, that is GCA. But it is possible there was an element of GCA in that PMR. I had horrendous thigh claudication that went as soon as I started pred and had also had sore scalp and jaw claudication that had gone away after a month or two. I didn't know then what I know now or I'd have made more fuss about it!

[Phoebenooby in reply to PMRpro]

I have had all the tests and my femoral arteries are blocked bilaterally but I have no other build up anywhere at all. I’ve been tested for blood clots etc. basically they have no idea why I have it. It hasn’t improved at all with the steroids. I did read an article online about PMR affecting femoral arteries and it was treated with high dose steroids like GCA and it disappeared …. https%3A%2F%2Fncbi.nlm.nih.gov%2Fpmc%2Far...

[PMRpro Ambassador in reply to Phoebenooby]

Can you remove the u= at the beginning of the link please - as it is the link takes you to the redirect page but no further. I'd like to read it,

Since PMR is now being regarded as part of a spectrum, I see no reason why LVV shouldn't do that. And you get subclavian stenoses like that - why not femoral?

[Phoebenooby in reply to PMRpro]

Has that worked? I can’t open it at all now!

[Phoebenooby in reply to PMRpro]

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

[PMRpro Ambassador in reply to Phoebenooby]

Got it now!!!!! The whole URL has to turn blue for a link to be created.

Interesting - but I suspect it hasn't engendered the interest it should have done.

[Phoebenooby in reply to PMRpro]

Did you read the second link I sent? About a 48 year old woman? I’m just wondering if I just have had a high first dose of pred like GCA? I’m having vein mapping soon, no one knows what it is!

[PMRpro Ambassador in reply to Phoebenooby]

Yes I did. Sorry, not quite clear what you mean by a "high first dose of pred like GCA"

[Phoebenooby in reply to PMRpro]

Oh in a hurry! Reading about the 48 year old woman, I am wondering that if the Drs had seen a connection between PAD and PMR they may have treated me with a high dose of pred say 60mg like they do with GCA …. I was reluctantly started with 15mg ( no raised blood markers) and this has made no difference to my claudication.

[PMRpro Ambassador in reply to Phoebenooby]

Yes - that is an interesting conjecture isn't it. They used to start patients on 30mg pred for PMR until they decided that was far too much and cut the level. A not very large study found that 75% of patients started on 12.5mg got symptom relief in a month. Apart from the fact that meant their poor patients were in pain for longer than they needed to be, what about the other 25%? My experiences over the years do suggest that starting at a higher dose and then tapering fairly rapidly down to 15mg often results in a shorter time at moderate doses.

In the meantime, they have decided there is a spectrum of disease from PMR across LVV to cranial GCA. I suspect there are quite a few patients who apparently "only" have PMR but there are pockets of GCA scattered around that are harder to get sorted out. Their fear of pred does us few favours when we have something "different" in our version of PMR/GCA.

[Phoebenooby in reply to PMRpro]

I emailed the head of rheumatology in oxford a month ago ( Raashid Luqmani) but he didn’t reply!

Good morning Professor,

Apologies for emailing you personally.

I have been seen by the Rheumatology team at the Nuffield hospital in Oxford after being referred from the vascular team at the JR.

Long story short, I had undiagnosed PMR from June 23 to January 24 when I was at last given prednisolone. A few weeks after the PMR symptoms started overnight in June I developed claudication on walking. I was then diagnosed with PAD in September.

I had several tests and scans in the November and December and the vascular team were perplexed by my unusual case, as I only had bilateral femoral blockages.

When I had a further appointment with Dr Lee in March this year and told him of my PMR diagnosis he sent me to Rheumatology at the Nuffield. They requested a PET/ct scan to check for LVV, which was inconclusive.

I am very worried about having mis diagnosed GCA affecting my femoral arteries.

I have attached the file I found online, I was also recommended to contact Mr David Jayne who also said there was a connection between femoral blockages and PMR, and advised me to be seen by your team in oxford which of course I have already done.

Thank you for reading this and would appreciate your thoughts.

[PMRpro Ambassador in reply to Phoebenooby]

Aye, well. We haven't heard many good reports from there!! They think themselves something special, being Oxford and all!!

[Phoebenooby in reply to PMRpro]

Oh really….well that’s where I am! I was recommended to contact David Jayne but although he replied he just advised me to go to the Oxford hospitals! I find it so frustrating… I’m doing well with my pred taper but am still unable to get about much because of the horrendous cramp when I walk….🙈

[PMRpro Ambassador in reply to Phoebenooby]

Joel David gets good reports, supports slow tapering. But whether he'd be any help I don't know. If you have contacted others, you could try him.

[Phoebenooby in reply to PMRpro]

pubmed.ncbi.nlm.nih.gov/161...

This is the one about a 48 year old woman

[Grammy80]

I just saw this post...and am happy to hear you will be checked every three months. That is what Northwestern Hospital, in Chicago, Illinois, did for my son. It is peace just knowing it is closely monitored. A big relief for you, I am sure. My best, of course.💞