Swollen Leg Solved

[Thelmarina]

Hi - I posted a query about swollen legs last week to see whether this symptom was part of our PMR ‘journey’. Things have moved on dramatically since then so I am sharing with you so that you get medical advice asap if you have symptoms such as mine.

First of all the contact and advice I experienced is in the Uk.

After my nearly eleven hour wait in A&E last Saturday I was put on blood thinners in case of a clot. On the following Tuesday I was called in for an ultrasound and a large ‘unprovoked’ clot was discovered. ( I loved the term as it implied that at least I hadn’t annoyed my leg! Basically it meant that there was no apparent cause for the DVT. ) I had all sorts of tests to rule out possible nasties, all of which proved negative. The care was brilliant. The conclusion is that both polymyalgia and the steroids give us a vulnerability to blood clots, and perhaps a short flight, heatwave in France, too much gardening here, may have made a contribution. Who knows? The Doctor/ Consultant said it was a very good thing that I came in when I did.

So if you have a swollen leg, calf or thigh - a calf that is reddened, painful and hard to the touch, don’t wait but get it looked at. The calf of my good leg measures 34 inches, my bad leg 38 inches. It happened in a week. A blood test will indicate the possibility of something lurking, an ultrasound will locate any clots. Then you can take stock, take blood thinners, keep mobile and possibly save your life! That’s a bit dramatic but I know how we all hope our symptoms will go away or improve 😅 I do hope this helps xx

[DorsetLady PMRGCAuk volunteer]

Wow, that’s a bit scary -so glad you’ve got the answer and the treatment.

[PMRpro Ambassador]

Hum - they might think it was unprovoked - that little history would have shouted ?DVT to me!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes, but you’re spot on! 😊

[PMRpro Ambassador in reply to DorsetLady]

But I mean - a flight, heat =dehydration, steroids, less the PMR, GCA would have raised suspicion more. But Mukyhtar seemed to suggest a lot of us probably have vasculitis rather than "just" PMR

[Predderman2020 in reply to PMRpro]

Interesting. Is Pred an instigator for clots. Interesting to know. I am on 8mls. But I have pain in my thigh high up behind my right leg. I thought it was fibrous (hamstring) but now worried. Thank you. T

[Thelmarina in reply to Predderman2020]

Worth checking out, probably exactly what you say! Still worth it 😀

[PMRpro Ambassador in reply to Predderman2020]

May be in some contexts - and at varying stages of treatment. There is double the risk of pulmonary embolism in the first month of high dose steroids for example.

arthritis.org/diseases/more...

[piglette]

The time I had to go to A&E for a possible DVT, the care was next to none. The NHS really came up trumps. It is a pity other things don’t have such a good reaction. I think the NHS can be pretty impressive in emergencies.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Always has been -hubby was often in with cardiac issues..it just the routine they struggle with.

[piglette in reply to DorsetLady]

I think you are right, although my sister in law had cancer and was dying and they were pretty bad then.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

It’s extremely worrying- and very patchy in places..

[PMRpro Ambassador in reply to piglette]

They aren't really set up for end-of-life care - my daughter has fought to get patients into a side ward where necessary but lots of the nurses don't know what to do and are scared. And a lot don't recognise the end stages either.

[piglette in reply to PMRpro]

She was only 52 which was really sad. The nurses were actually very unhelpful.

[PMRpro Ambassador in reply to piglette]

It's such a shame - they are too busy and uneducated all too often. It isn't fair on the family either. But on the other hand - the family often just want their family member in hospital rather than at home even though it isn't the right place. The UK is very afraid of death.

[Maryis80 in reply to PMRpro]

Three cheers for the Hospice at Home nurses who work in the community

[Gin13 in reply to PMRpro]

This is so true, the way my mother and us as a family were treated, pushed into a corner behind a curtain in a ridiculously packed ward with no care given to my mother was disgusting. I begged for them to move her so she had some dignity……luckily a couple of days before the end I managed to get a Hospice to have her, within 2 hours she was moved into the most loveliest place for her last breaths. My Dad is now at this point but I’ve kept him home and have support from the local Hospice, so much better for him.

[PMRpro Ambassador in reply to Gin13]

My husband was ill during the Covid hiatus when they had 700 beds in homes unoccupied because of lack of staff - all those people were at home, all the home care options were exhausted and I was entirely on my own as the local Hospice service here was still to be set up. I was very encouraged yesterday at a discussion on the local news outlining the lacks they had identified and how they hoped to remedy the situation. Our equivalent of district nurses here were mostly blind to how quickly his state advanced at the end - he went from doing well at home to unable to get out of bed unaided in 2 days and I got the impression it was not something they had experienced. Hospice in the UK is superb - when it is available.

[ChrisinNam in reply to PMRpro]

"When it is available" is the key. My husband was in Hospice here in N Wales for his last week or so, and my grand-daughter (from Namibia) and I were accommodated there for four days, too. Brilliant care. More are needed all over.

[PMRpro Ambassador in reply to ChrisinNam]

Having access the the Macmillan and Marie Curie nurses is also a boon - nothing like that here. Volunteers yes, actual nurses no except the district nurses, and only ever for an hour at a time. That was my biggest problem - he needed 24 hour nursing care and none was available. Not even hospital beds at that stage because he deteriorated so quickly and there was nothing over the weekend it happened. Luckily the girls were here and one is a nurse with end-of-life experience. Of course, after he died I discovered a neighbour had been a nurse and still does some caring in retirement.

[Thelmarina in reply to PMRpro]

It makes a hugely difficult time so traumatic. I was lucky with my husband - but it was such a surreal experience!

[PMRpro Ambassador in reply to Thelmarina]

Never thought of that description - but you are right. I still feel as if I was standing outside looking in - and people's reactions seemed strange to me, even on the part of the so-called professional experts. The girls were frustrated too.

[Kayaksal in reply to Gin13]

My experience is that Hospice is the way to go for assistance when the patient is at that stage.

[PMRpro Ambassador in reply to Kayaksal]

It is - but as ChrisinNam says - "when it is available" is key.

[Karenjaninaz in reply to Gin13]

I went through that with my mom; we brought her to her home and hospice came with assorted helps. I had to hire live in carers though but it worked out. I felt like I was walking through fire those months- 2010.

[Gin13 in reply to Karenjaninaz]

I have had private live in carers for the last two years for my Dad and the Hospice arranged personal carers last year to assist, the funding was stopped for that 3 months ago after a conversation with me, no one came to see him even. I arranged private personal care too but then The Hospice stepped up again and got the funding back because he’s dying and is entitled to it. They don’t like us paying for private live in but I can’t look after him 24/7 and his wishes were to be home but I wasn’t to care for him. I’m exhausted by running everything for him, replacing carers when necessary etc etc I wouldn’t have done anything different though because he deserves to be as comfortable as I can make things for him. I’m going to miss him terribly very soon I know that

[Karenjaninaz in reply to Gin13]

I lived 80 miles away from my mom and was working part time. This type of care is exhausting by loved ones. Even with my medical/nursing training I couldn’t do it. When I look back I feel at peace because I did everything possible.

[HeronNS in reply to piglette]

Here things are so bad people wait months for cancer care. BUT my hubby's painful leg (well over a week now) has got him an MRI tomorrow morning! He called the doctor, second time, today. We've just spent half an hour learning how to use our telephones so he can call me when he's ready to be picked up.

[Thelmarina in reply to HeronNS]

I’m so pleased. Hopefully it’s nothing to do with a clot but so good to make sure. Let us know won’t you Heron? I have huge fellow feeling for leg sufferers!

[HeronNS in reply to Thelmarina]

He misled me. It was an ultrasound and they told him there was no sign of any problem. Also he didn't use the phone properly, so I waited for over an hour in a parking lot near the supermarket where I'd gone to shop while he was at the hospital (much closer to hospital than our place). While he walked home. Eventually, unable to contact him because he'd turned his phone off after being unsuccessful in trying to phone me, I went home, where he had just arrived. I have been more furious than sympathetic or relieved. 🙄😠

[PMRpro Ambassador in reply to HeronNS]

Men!

[Thelmarina in reply to HeronNS]

Words fail - good news though 👍🏻💕

[PMRpro Ambassador in reply to HeronNS]

Our hospital does at least make that phone call for them!!!

[HeronNS in reply to PMRpro]

Well under the circumstances I wish he had got them to do that. See my reply to Thelmarina! The main reason we have the cellphones now is to use in these very circumstances. When I was stuck in ER after hurting my knee in 2020 no one could call me and I couldn't call out, although I did ask the nurse to give hubby a call to tell him not to expect me home for a long time, and later when I was released so he could come get me. Having a phone of my own would have been nice.

[Thelmarina in reply to HeronNS]

Told my brother to turn on his cell phone so I could tell him where I was at Stansted. He read my texts in France, our destination …😜

[SheffieldJane]

Good advice thank you. I am so glad they found it. 💐

[Thelmarina]

Delicious!

[Elispeth]

Thank you Thelmarina for taking the time to write and inform us of this condition. This whole discussion has been very informative for me and it will certainly help me to continue to take good care of myself. I live in a hot country myself and have just returned on a flight back from the UK to a heatwave. I hope that your health will continue to improve. Best wishes x

[Thelmarina in reply to Elispeth]

Thanks Elispeth, I’m glad if this helped. We get these things out of the blue so it’s good to know what they may all mean. Good luck! 😄

[HeronNS]

I'm so glad you got diagnosis and treatment. 🌼

[Thelmarina in reply to HeronNS]

Thanks Heron 😀

[Mystik]

Hi thank u ! I have been having issues for a swollen leg over few months been to emergency few times had blood tests scans X-rays m already taking blood thinners ! Nothing was found just keep saying it’s muscle spasms or arthritis lupus

M having an mri done soon

Thank u once again

[Thelmarina in reply to Mystik]

So pleased you’re having your MRI - they need to uncover the cause! Good luck!👍

[Sophiestree]

I had a dvt at 17 (1975) which they called idiopathic iliac vein thrombosis... same thing I guess, definite evidence on ultrasound/scans but no cause. Was only on warfarin for a short time though and then given heparin prophylactically for any hospital procedures after.

[Kayaksal]

I can't say I'm glad to read your post, but I am definitely interested to know of someone else who has had an 'unprovoked' DVT. I had a DVT last November and was given the same 'unprovoked' diagnosis. But, nothing was mentioned about the possibility of being on prednisone as being a possible factor. At this point I am taking a blood thinner, wearing compression socks, not crossing my legs (I was amazed at how much I did just that), not sitting for lengths of time...The other thing that I noticed is that I was having heart palpitations - not frequent and for short periods of time. Those are now gone with the blood thinning medication. I had not thought of any connection until recently when I read that blood thinners can be used to treat the palpitations.

Thank you for sharing your experience!

[PMRpro Ambassador in reply to Kayaksal]

Not sure the anticoags reduce the palpitations - but they certainly reduce the risk associated with them because of clot formation!

[Maryis80]

Similar happened to me four years ago, a year after diagnosis of PMR.GP thought swollen leg was steroid related but when I had my first consultation with private rheumy he suspected DVT and I had an ultrasound a few days later which confirmed his diagnosis.NHSthen took over which was very efficient and four years later I am on Apixaban for life! The GP apologised for not having picked it up earlier

[Thelmarina in reply to Maryis80]

Phew!

[USAGCA]

I had a large clot on my abdominal wall after large doses of prednisone. I was evaluated for pancreatic cancer! No matter how much I showed them that prednisone can cause thrombosis, they insisted that it was cancer. I took aspirin two to three times a week until my pred dose came down to 6 mg.

[winfong]

So glad everything worked out. That all sounds a bit scary.

Had no idea about the blood clots. One more fun thing to look out for.

[cycli]

I had full blown PE in October 2020 9 months before being finally given pred. I do believe that I had been suffering from symptoms of GCA and PMR for years and trying to cope. There was no other contributing factor to cause it. There has to be a triggerbut I don't think pred. should be blamed for everything.