Leg scans

[bubblyalex]

Sooo no nearer an answer on the pitting, swollen and loss of feeling in the feet. They were only interested in the dvt question at the vascular unit.

My heart rate is up generally again 150/100 today. Not impressed at my body at all. Talk about misbehaving! Lol but not lol.

The best ... not really...news... the dvt found over three months ago hasn’t gone or reduced in any way or shape at all. The only good thing ... it hadn’t got bigger. I’m fuming. The vascular unit dragged this on having told me that it would take three weeks to dissolve then they kept shifting the time line every time they called to see how I was. I knew it wasn’t right after a month. Medway-lady was totally right about riveroxiban. It doesn’t work. The only reason I’ve had this scan is because my rheumy pushed hard on it. So they’ve put me on pradaxa now ... read the leaflet and it say you shouldn’t take it if you have a stomach ulcer... I told them I have gastritis ... which leads to ulcers.

I’ve left a message for rheumy/gp now. Fed up and worried that I may have heart problems now 🙄 seriously had enough. But I will get up and keep going ... after I’ve had a cuppa and some Christmas cake to cheer me up.

Keep safe everyone 🥰

[Marionfromhappydays]

Pleased you've been in for your scan, im really surprised they haven't been checking the progress of your previous dvt and noticed the drugs weren't working 🤷‍♀️

Not that I am an expert or anything !

You worrying about your BP isn't going to help it *don't hit me* (I sound just like my mum saying this), so enjoy your cake and cuppa and deep breaths x

Let's hope these new drugs do the trick with the DVT .

So they literally just didn't address your swelling or give you any indication as to why you've got it ?

[bubblyalex in reply to Marionfromhappydays]

Don’t worry ... not going to hit you 😊🥰. You are quite right. Remaining calm is important... What is annoying me is the blasé attitude and excuses for the raised blood pressure. That and the pretence it is white coat syndrome... not with me it isn’t. Never ever had that. It’s odd really because I remember one reading at 140/90 several hours post knee wash out in Salisbury ... they were rushing about worrying about that enormously... so why is 4 readings days apart of 150/100 or thereabouts ok. 😠 A little too convenient that my feet are swelling, losing feeling and the pitting has arrived at the same time.

They didn’t examine my feet at all... no questions... totally disinterested ... only scanned my arteries and veins. That’s all.

What was also interesting is that a call out for people not to got Salisbury because it was struggling... the place was deserted. Car parks empty. There were only 3 of us in vascular for 2hours... . Only a handful of people having blood tests. Blood test nurses standing around. All the consultant rooms I passed empty and no patients waiting with the consultant just sitting there... not even on the phones. Vascular is within the rheumy and physiotherapist department. Thank goodness I am no longer with the rheumy there. Off in one I think I am. 🤭

[Marionfromhappydays in reply to bubblyalex]

Do you have an appointment to see anyone else ?

I would ask about your blood pressure and why this isn't causing concern with them ( not that it's super high, dont want you to worry that it is. ) I think clinically maybe its not super high ?

Write down all your questions and speak to your GP, worrying about this is going to make you feel worse.

So sorry the hospital were so narrow minded in their treatment of you x

[bubblyalex in reply to Marionfromhappydays]

No appointments other than for rheumy. I know my gp will get on it if it’s needed. He’s very responsive and sensible. The same goes for my rheumy. Sorry for the rant. I did go off a bit there lol

[Marionfromhappydays in reply to bubblyalex]

You aren't ranting at all 😘

It's frustrating for you that you can't get an answer. Seems like the hospital were too preoccupied at staying within their own specialism and not treating you as a whole person !

Ring the GP maybe ? X

Hugs

[springcross]

How frustrating for you ba. So as you say, it's back to the GP/rheumy. Have you tried searching on HU for your symptoms with Amgevita. Someone else may at some time have had the same or a similar problem?

[bubblyalex in reply to springcross]

I hadn’t thought of doing that. Thank you Springcross. 👍🏻😊

[springcross in reply to bubblyalex]

Hope you can find out something. xx

[Niao]

You really are having a frustrating, confusing and incredibly tough time of it all right now! I hope the cuppa and cake have had a calming effect! Hang on in there best you can and hopefully there will be some positives soon. Xxx

[bubblyalex in reply to Niao]

Thank you Niao. More cake needed 😉☺️ I at least have a great gp and a great rheumy. I won’t be reliant on Salisbury for help or tests thank goodness. I hope you are ok.

[Niao in reply to bubblyalex]

Just you eat as much cake as you like! Though of course then you stand the chance of adding intestinal chaos to the mix! I was feeling rather fed up but now ,reading your post ,I realise I'm not that badly off at all! 🙂

[bubblyalex in reply to Niao]

I’ve had to move the cake out of sight lol... I’ll sent some to you ... maybe it will help you feel better too 😊

[Niao in reply to bubblyalex]

😆 Thank you! You take good care and rest those legs.

[Pippy25]

I am so sorry that you are no further on and I don't blame you for feeling frustrated too. I really hope your GP/ rheumy can do something for you. I hope that cake helped and send some supportive wishes your way. You have been through a lot lately so sending if I may a hug for you too. xx

[bubblyalex in reply to Pippy25]

Hug gratefully received. Thank you Pippy. I hope you are ok enough. I know it isn’t easy.

[Mmrr]

Wishing you well 💐

[bubblyalex in reply to Mmrr]

Thank you Mmrr. It’ll be fine in the end eh.

[Monkeysmum]

Oh that’s rotten news ba. I hope rheumy/gp are more use. Cake most definitely prescribed for medical reasons on days like this. Sending big hugs your way xx

[bubblyalex in reply to Monkeysmum]

Thank you and thankfully I can see on the app that my gp has already booked me in to speak to him on Thursday am. This is so reassuring in so many ways... particularly if he was super worried ...he would already have called... as he has in the past. 👍🏻

[Neonkittie17]

Hugs Bubbly. x

[bubblyalex in reply to Neonkittie17]

Thank you 🙂

[Kags1068]

Dear Alex

I'm so sorry to read all this. You've had such a tough few months, and you have stayed so strong and cheerful. I really do feel for you.

As you have had to learn very quickly, you have to be very proactive in your care (which can be exhausting in itself). You are doing a grand job of it though and I hope you manage to get a quick response from your rheumy team.

Keep eating that cake and feel free to add a little nip to any drink you fancy!😁xx

[bubblyalex in reply to Kags1068]

😊 Funnily enough I did drink a little over Christmas ... a small glass of wine or a G&T each day for a few days. I felt incredibly guilty for drinking and had wondered if this might have been the problem... I did tell the out of hours doc and he thought no... I’ll let my gp know though .. blood tests today which should give me my results tonight... in time for speaking with my gp. 🤞🏻

[springcross in reply to bubblyalex]

🤞 x

[Hidden]

Sending hugs 😘

[Summerrain14]

I really hope you hear back from your rheumy team soon. It is so frustrating when people don’t listen to us as sounds like this with the DVT team. x

[bubblyalex in reply to Summerrain14]

Thank you Gail. It sure was like that. I think if I had had the other nurse she would have been more interested. Ahh well 🥰

[Summerrain14 in reply to bubblyalex]

So frustrating for you. You have so much to deal with as it is. x

[bubblyalex in reply to Summerrain14]

I’ll eat more cake today I think ... while making turkey pie filling for the freezer ❤️

[medway-lady]

Try not to worry a simple blood test tells them if the DVT has gone. But its arterial and very painful so your lucky you had a scan.In my experience in a way its good news it hasn't broken up and gone into your lungs to be PE's. They would worry more if you were short of breath. Slowly dissolving is better than breaking up and to be frank its vital to keep moving the legs and ask would a pressure stocking help ? it wasn't necessary for me but my clots were in the lungs as well as leg. If it helps keep moving the leg and never cross the feet when sitting down you'd get the nurse swiping off the bed. I stress no matter how hard it is stay mobile to prevent PE's and be patient. Trust the Heperin or I can't remember the name of the other clots stuff and then see what the doctor says. In 6 years I've seen a Haemotologist twice and really things have moved on and so have intelligent inhibitor drugs. I'm puzzled why you weren't given them but perhaps the clot wasn't big enough to warrant them as they are powerful with no antidote so it would have been a bigger risk. Anyway I hope your feeling better soon but please do keep moving that is really really important. I used to do from the bed to loo, bed to kitchen etc to round the garden but it takes time. And in cold weather its advisable to do indoors as Riveroxaban will make you feel the cold more.

[bubblyalex in reply to medway-lady]

Thank you Medway-lady. It certainly is a relief that it hasn’t gone to PE. What I have is on the way back up from the feet on the inside of my calf. I will ask them about stockings and heparin. You saying about the cold really resonates because I have been so very cold all the time especially in the legs and feet. More so since being on riveroxibam. Why don’t they tell you this when you say how cold your feet and legs are eh. 👍🏻

[medway-lady]

My DVT made my leg hot not cold, did you bang your leg or fall on it ?

[bubblyalex in reply to medway-lady]

Only since they diagnosed it. I’m on a high dose pred and have been since. Jan. 20mg and then 30mg since July.

[medway-lady]

Have you read the PIL for Pred. ?I I think it may cause bone pain. I know that when I got Shingles last year it was so painful that it was first thought to be a broken hip. Its worth reading so you can ask the GP if it could be linked to Pred. Pred does affect the face "moon face" it might affect other places. I don't know but when I was put on Pred for the AKI it was responsible for a lot of odd things. And renal were anxious I did not to have it for too long as it can cause bone thinning. I'd do some reading about Pred. but I was on 100mcg. I'd wonder if there is link. I'm not medical so suggest you read up but do not get alarmed as that will push up the BP. Try to stop looking at the area, and touching it too. As a clot is best left alone. It is hard but when the sausage clots came up in my elbows it was so hard to ignore them, it was torture to stop feeling to see if swelling was going down. Like never pick a scab. lol It took months to disappear so patience is vital too.

[bubblyalex in reply to medway-lady]

I must be lucky because I can’t see it or feel it 👍🏻. Pred is a both a good med and a bad one isn’t it. My rheumy is beside herself trying to get me to a place I can at least reduce it to at least 10. moon face is defo here as is weight gain once I went up to 30mg... risk of diabetes is growing ... all in all I really need to get off it. As my rheumy says long term damage will be occurring in all likelihood. 😏 Rituximab is imminent to try and sort my knees shoulder and so on ... 2nd week of Jan I think but waiting for confirmation. I hope that a lot of problems will fall away if they get the RA responding to treatment. 👍🏻 I hope you are ok and had a nice Christmas.

[medway-lady]

Look up Phlebitis , and moon face will go. Please try not to stress as that is the enemy of high BP. Even taking my BP raises it as it hurts a lot. Pred has a place but isn't the answer to RA just a short term (hopefully) fix. So try not to worry as the current pandemic is making everyone including me jumpy and hopefully it'll be over soon and then thinks will get better for all. I had a delivery of Etanercept today, it works well and I hope the RIT helps you. If you want you can PM me and again, try not to worry.

[bubblyalex in reply to medway-lady]

Thank you Medway-lady. I have my calm with my gp tomorrow so hopefully I’ll get somewhere with him. Rheumy will call when she can.

I am so glad you have a med that works well. Thank goodness for that 🙂👍🏻