Had ultrasound guided sclerotherapy (UGS) 5 May 2015 after changes in my legs to my vascular system. Horrendous night cramps being the main problem since in inception of PMR last year, diagnosed January 2015.
Healed well and still have pesky vein r lower leg that hasn't quite responded to the therapy thus far. Night cramps almost no existent now - I am hugely thankful for this factor.
My question please:- have developed swelling of both ankles now over the winter months. Previously more obvious last summer in r ankle only where I often had pain in ankle joint region - a small amount of steroid injected by Rheumy corrected this although & note the swelling is back and equally in both ankles.
Off to see Rheumy next week and compiling my list.
I have complained from several times to him that I have breathlessness the odd day/night some times when I don't feel so well. This is not often, however no two days are the same as you will all know.
On a good day I go to my fitness class (gentle rhythm and movement for over 50's) with absolutely no problem breath wise and my ankles do not cause any pain.
I am very careful too, as I tear tendons and ligaments easily having had my share of Cipflox over the years for respiratory issues. Steroids not aided me in this respect but cope OK & know my limitations.
I would like to know why I am holding fluid like this and note the ankles are back to normal in morning.
I do use the bathroom at least twice during the night.
Any feedback gratefully accepted as always.
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Megams
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Steroids do tend to make some people retain fluid so that could be one cause.
"I have breathlessness the odd day/night some times when I don't feel so well" - what do you mean by that? Do you mean that you have brief spells of feeling unwell that coincide with feeling breathless? Are there any other sensations? Fast heart beat, palpitations? Does your chest, up towards your throat feel tight or uncomfortable? Do you feel dizzy if it happens when you are standing?
If you said yes to any of those I'd suggest you discuss it with your GP (firmly, don't be fobbed off). Your rheumy might help I suppose but they seem to me to be a bit blinkered about "not my field" and I'm not sure I'd trust them on cardiology! I had vague symptoms like that which were put down to pred. It wasn't, it was atrial fibrillation - at least based on the fact that I don't have those episodes since it was identified and treated! And the swollen ankles also disappeared...
Both steroids (pred at least, not sure about hydrocortisone) and PMR can lead to irregular heart beats and if they get out of hand can cause those sort of symptoms. Best of all would be an ECG while it is happening - and my GP had suggested dialling 999 if it went on too long, sometimes it was 15 or 20 mins. I thought that was a bit OTT and never did - but in retrospect it was the right thing to do. Paramedics have an ECG machine on board - and that would show it immediately. Otherwise you are dependent on the appointment to have one coinciding with an episode - and of course it never happens. Even a 24 hour ECG won't show it if it only happens a couple of times a week.
I can have an off day feeling unwell with no specific symptoms per se.
Then for whatever reason if I haven't been able to go to sleep until late the previous night, this too contributes to a general feeling of being decidedly "off" the next day.
Last week had an eye infection plus a pimple on my back - flared into a large nasty red sizeable circle - both infections now under control but for what ever reason put my sleeping pattern out for days on end.
Due to a genetic atrial septal defect (hole successfully closed with open heart surgery 1988) some electric's, T3 and T4 are faulty and could not be repaired at time of surgery. May have mentioned this before? I don't take meds for this thankfully.
When I am over tired from lack of sleep previous night and/or trying to go to sleep at night the heart jumps all over the place some times, almost feels like a sudden rise in B/P then eventually settles - definitely more noticeable since beginning my steroid intake. Have not mentioned this to Rheumy come to think of it.
Whilst I have lived with and adapted to my occasional missing beats/ palpitations, I note since the PMR inception, I am inclined to feel a little anxious at the time of noticeable faster heart rhythm - do my deep diaphragmatic breathing to try & settle myself down.
Must add, that memories of having been asthmatic as a child with no inhalers and as an adult with pneumonia with inhaler (yaaah) the deep recesses of the mind remembers the struggle to draw breath.
I did have an ECG plus blood test 5 months ago as I experienced chest discomfort/pain out of the blue previous evening. All OK .
Three months ago complained to Rheumy about my breathing which I've complained about before but not loudly enough obviously - left side of chest region.
He pressed on upper left chest sternum and at back, I yelped loudly.
When I questioned why this was so sore, he believed the tendons/ligaments have been effected from when sternum previously opened from surgery.
I guess this is feasible.
I am now likely to think that Cipro has added damage over the years as I had torn tendons so easily in the past and again presently as mentioned.
Anyway Rheumy gave me 3 small cortisone injections into 3 separate rib sites - 2 at front and one at upper left back. Wow I could breathe, instantaneous.
I guess I should go back & see my GP & chat to her with a suggestion that maybe it is time for a check up with my Cardiologist - I have had a halter monitor over the years & wonder if this would pick up the erratic side of the beat which presents (some times) mostly at night.
Trying to tie in the timing of an ECG is tricky as you say - if I was in trouble I would not hesitate to ring 111.
How have they treated your atrial fibrillation and will this go away once your PMR is in remission do you think?
Take good care in meantime and thank u so much once more.
Yes, my a/f is treated medically with propafenone and BP meds - very successfully. No, it is unlikely to go away as my electrics are also hardly ideal - that is what the cardiologist reckons was damaged by the autoimmune part of PMR.
I'd think a repeat 24 hour Holter - or even longer - would be a good idea. Once the electrics get a bit wobbly they don't stay the same, they could be getting worse and maybe now you might benefit from some medication. I was started on 2 tablets of propafenone, one morning, one evening. A follow-up Holter showed I was having episodes in the evening which I was totally unaware of so she added another 1/2 tablet in the late afternoon. Over this summer I forgot it a few times (it's a pest, it is due at a hopeless time, I remember too early and then forget!) and had obvious episodes in the late evening as a result.
And that back and rib pain - any chance of Bowen therapy? Sounds an ideal candidate for that! Seriously, that is what I would try - nothing to lose except the cost and I feel as good as after a massage after it!
Wow what a wonderful response - thank u so much for this information.
Firstly I have been seriously considering Bowen therapy because I understand how you have benefitted greatly from it.
I will need to Google who is in my area as I have not come across anyone who has had this therapy nor know a therapist.
I would far prefer natural therapy any day over on-going strengthening and cortisone injections.
We are truly blessed to have a choice.
What can I say about the cardiac side with PMR? This comes as a surprise to me, was not aware of this factor.
Would you be inclined to think you have been affected due to your PMR not being treated until much later in the onset?
I think I remember some of your history?
Does this happen to everyone or are those with a susceptibility become predisposed?
What does scare me a little is my gut/intestinal issues when taking on board any new meds - I am sure there will be an answer because I need some answers for this breathing and intermittent spacey heart beat.
Glad to know I am not the only one with memory issues - I write notes to remember things to get done during the day............
Going to try and get some sleep and deep breathe at the same time.
I honestly don't know if being diagnosed sooner would have made a difference. I'm fairly sure that it started early-ish in the PMR story but I was hardly aware of it then. Here they did an echocardiogram 3 years ago when it was finally diagnosed properly and decided that suggested I'd had raised BP for some time as there was thickening of the ventricle wall. When one was done earlier this year they said there was no real sign of thickening, just minimal. So was that operator difference or has it gone back in the last 3 years since I have been on BP meds? All the time before I'd been told what good BP I had, never above 130/80, even the day I was admitted. Days later it was high! Still is when a doctor measures it but otherwise, at home, it is 110/70 much of the time - until I cut back on one of the BP meds it was more like 100/60 or even lower with a pulse in the low 50s/upper 40s which was a bit hairy on hot days!
A/F is common in our age groups - becomes more common with aging. In RA though it is known there is a higher than usual rate of a/f - when I asked rheumies about it I got an evasive "it's common in that age group". That wasn't what I asked - is it higher than usual in this particular sub-population? I suspect it is and it should be watched for.
No - after about 18 months it got that low on the meds I started on and since I wasn't feeling too great I checked my BP for a couple of days. I found it was consistently at a maximum of 100/60! So I got permission to try halving one of the tablets - and it improved it no end. I suppose the drop on the same dose had a lot to do with both losing weight and lowering the pred dose.
Did I have other tests? Honestly can't remember - it was well over 3 years ago.
Thanks again that is helpful to understand and makes perfect sense all round.
Re tests - I should have been more specific, it was in relation to your heart issue other than having an ECG & Holter Monitor. What I was wondering was if they did an Echo to observe the heart beating as well.
Yes - I said I'd had an echocardiogram in one of the posts so I didn't mention it again. I had one at the time when the a/f was recognised, just an echo then, and another earlier this year as a follow-up and with a stress test because there was a bit in the ordinary ECG that can either be because you're female or because you have perfusion problems that could indicate a potential heart attack. All fine. I'd also had an echo done about 6 years ago, also all fine apparently. At least they didn't say anything at the time.
Thank you for this and will come back to this post when we sort my heart issues out .
Going to be interesting to see how my heart deals to the extra load of hydrocortisone.................... Am building it gradually and hope to reach 80mg today after managing 75mg by late last night.
Medical communities are hugely in denial. I'm guessing your Rheumy did not want to be "held accountable" for your heart issues? One less for him to worry about. I presume your GP arranged a referral to cardio, separately, not Rheumy?
There are millions of articles on Cardiac issues in any autoimmune conditions, which are essentially multi-system diseases affecting several or all of our organs. Drs aren't good at "orchestrating" different sub-specialities. They tend to focus on one thing - this approach does not work in autoimmune diseases where many things essentially go wrong. They are Rheumy drs and these drs are sadly not autoimmune specialists (they think they are - sort of - but they aren't). Apparently, there was the first autoimmune hospital somewhere (I think, it was in USA) where patients can go to different departments instead of frequently being shunted into different departments at different hospitals (except lucky few patients with access to "multi-disciplinary" dep in top hospitals).
Thank you - I keep trying to explain this belief rheumies have that they "specialise in vasculitis" - no you don't...
There are two departments I know of in the UK who use this multidisciplinary approach for patients with autoimmune disorders so they can have 'one-stop' management.
I'm sure there are others (I hope but I suspect it is more faith that fact).
I started having swollen feet and ankles on starting pred, I did try manual lymphatic drainage. My feet too are OK in the morning. I also have been getting cramps for which my GP gave me quinine sulphate which works brilliantly. I had sclerotherapy UGS in May but in my thigh area. It is still quite lumpy and there is still some pain. The vascular surgeon said everything looked fine when I saw him recently and he did an ultrasound.
When u say manual lymphatic are u saying u massage your ankles?
I remember you having your UGS a week after my procedure and I can tell you that both my legs are still lumpy where the body is slowly trying to absorb the discarded vessels.
I have healed well despite one area not having responded so well.
I was told it would take up to 6 months or more for the old vessels to dissipate .
Still have bruising from areas redone a 6 weeks ago & must say did not feel too well the following week or 2 - wonder if these chemicals do our depleted immunity any good at all.
Glad all went well and the vascular surgeon felt everything looking fine.
I too have swollen ankles which reduce in the morning and are worse at night. They concern me because I have SVT for which I take bisaprolol which seems to keep it under control and I haven't noticed any correlation between SVT episodes and the swelling. However, I have made an appointment to talk to a GP about this and possibly to have another 7-day monitor - 24 hr doesn't seem to show anything and even the last 7-day picked up only three episodes. Last time I saw an EP I didn't have the swollen ankles and his advice was to continue with the bisaprolol but |I'd like another check in case the electrical system is worsening. I hope that with a slow but steady reduction of steroids everything will be resolved
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but otherwise, at home, it is 110/70 much of the time - until I cut back on one of the BP meds it was more like 100/60 or even lower with a pulse in the low 50s/upper 40s which was a bit hairy on hot days! 
Swelling in legs
Legs and Ankles
Pred and fluid retention 
dodgy knees and ankles
