PMR and Phlebitis Anyone?

[rockyandzeus]

HI All,

I have had PMR since 2011 but was not diagnosed until 2012.

I am one of those who do not show raised blood markers, but had a

'miraculous' recovery on a prednisone trial at 15 mg.

I suffered a vertebral crush fracture in 2016 and I was on Forteo

for a year, and have received once yearly IV infusions of Aclasta for

the past two years. My bone density has improved. I am currently taking

15 mg pred daily, and each time I try to reduce it has been a 'crash and

burn' by the time I am almost at 14 mg., using the dead-slow reduction method.

Most recently I have been diagnosed with thrombophlebitis in my foot and ankle.

I knew about as much about phlebitis as I did about PMR, (zero) and now I know more than I want to about both!

I have had doppler ultrasound twice to confirm that it is superficial veins involved

and not deep vein thrombophlebitis (DVT). However, the condition has worsened in

the last 10 days with numerous new areas with clots, on the top of the foot and inside ankle area. It is very painful, I can not wear most of my shoes, just house slippers and I must stop frequently to elevate my foot. My GP has started me on low dose short term blood thinners. Terribly stressed out as well being so close to Christmas and

now only one good leg to stand on, and only for a short time at that!

My question is this: Has anyone else on our PMRGCA forum been diagnosed with

phlebitis as well, and how have you been dealing with it?

Thanks in advance for taking the time to read this sad story,

Dorothy

[PMRpro Ambassador]

Are they sure it is PMR and not another a/i disorder causing your symptoms? Can't help with the phlebitis (thankfully for me) but there are some things that are associated with clotting disorders and being unable to reduce the pred dose at that sort of level should ring alarm bells to be sure there isn't something else going on.

I do hope it improves soon.

[rockyandzeus in reply to PMRpro]

Hi PMRpro,

I have had several rounds of blood tests to check for blood clotting disorders and all come back in the normal range.

it was a Rheumatologist who came up with PMR diagnosis... maybe a review is in order ...

Thanks for taking the time to reply... Merry Christmas to you and yours

🎄🎄🎄

[PMRpro Ambassador in reply to rockyandzeus]

Have you repeatedly "failed" at 14mg?

[rockyandzeus in reply to PMRpro]

Yes

[piglette]

I was diagnosed with phlebitis, although I am pretty sure it was not. I had the Dopler Ultrasound which caused a nasty blister on my leg as a side effect, which probably was due to the pred. For the phlebitis I had a procedure to remove a vein. It did not help though.

[rockyandzeus in reply to piglette]

Hi Piglette,

So sorry to hear that you have had phlebitis as well .

It must have been very hard to have a surgical procedure that did not solve the problem.

I truly hope that you will see relief, moving forward. It certainly is not an ‘add-on ‘ that we need in addition to PMR

[Blearyeyed]

I would be at a loss to give advice on this one except to say I checked to see which HU forum might be of more help to give you some answers about what could help you and which tests might help you find the right full diagnosis for you.

The Sticky Blood Hughes Syndrome group have a lot of answers about Thrombophlebitis .

The British Heart Foundation or Anticoagulant UK group also have members that suffer from Plebitis and Clots.

The Lupus forum may also have members that have suffered from either , or both, conditions and all of them may be able to give you more information and support to get the help and reassurance that you need.

Try joining each group on the HU forum and putting this post on each , also asking if you may be having another health issue that they may be able to help you with.

Please come back for PMR support though , and also to post and let us know what you find out.

Take care and sorry that your going through such a hard time

[rockyandzeus in reply to Blearyeyed]

Hi Blearyeyed,

Thank you so much for your thoughtful reply.... I had no idea that there were so many forums that had links to phlebitis.

My query was first to see if there was any commonality noticed by our fellow PMR sufferers with respect to episodes of phlebitis.....and there does not appear to be one if responses are any indication.

I am really hoping that the treatment my GP has me on will settle things down and if they do not he does intend to send me off to the appropriate specialists.

I wish you a joyful Christmas/Holiday season and blessings in the New Year!

[Blearyeyed in reply to rockyandzeus]

There may be the occasional person with both that hasn't answered yet on our forum. And you never know , there might be a few people with the same as you on the other forums , but like Us they started with one thing first and started only posting on other groups and aren't linked to ours. So you could still get more news here , but it might still be worth asking for more reassurance about treatments for Plebitis in the other groups too.

It's worth making friends everywhere . Good luck