I have recently joined. I wish I had done so two years ago.
I have just read a description of Claudication of the legs and realised that is exactly what I have been experiencing. Having had Claudication of the jaw during GCA I can’t think why I didn’t relate it. Possibly because old GP mentioned steroid cramps. As a result I have been trying to reduce the prednisolone as quickly as possible and getting in to more trouble.
Finally increased pred dose to 10mg from 2mg on advice from Rheumy and voila, no more pain! I was told to do this for a week and then go back to 2mg. I went to 5mg but had to increase to 6mg. I then felt awful, sick dizzy and terribly exhausted and put that down to a/i. Then after a week at 6am experienced Afib for 3hrs. HR 155 with fluttering so very obvious. I had Afib 16months ago (also during a weekly reduction from an increase) and saw a cardiologist who recommended getting a Kardia device after a three day ecg showed nothing of interest bar ectopic beats which occurred at the start of PMRGCA treatment. As far as I know with my own monitoring increasingly intermittent the recent episode is the second. (I have learnt that you don’t always know.)I saw new GP that morning. My heart had returned to normal but he prescribed blood thinners.
Two years ago Before first Afib I had a heart ultrasound which passed and a coronary angiogram which also passed.
What I am wondering is whether I should be concerned about the recent and prolonged Claudication? Recent blood tests taken for and read by Rheumy have shown high AST CK and HDL levels. He was not concerned by the increase in muscle enzymes and did not explain a reason. (Needless to say CRP and ESR levels were normal). The muscle enzymes have been reducing, possibly because I backed off all exercise, but have increased with the recent blood test taken on the day of the Afib. Two weeks ago before this happened Rheumy tested for muscle myopathy which I don’t have and suggested more exercise inspite of the increase in pain if I did.
OK I am not going to be confused by muscle pain again and I am going to be more reliant on my own feelings and prescribing as regards what is going on. Is this enough?
Is Claudication of the legs and arms a frequent occurrence? And is it entirely due to a flare and nothing to do with steroids?
Meanwhile I am doing fine on 6mg and all sickness exhaustion disappeared after Afib?!! Could adrenals have been involved?
I am so grateful for this forum. I saw a post asking why doctors don’t explain or say more!! I suppose it is a huge subject and everyone is different?
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Ridge
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In terms of the claudication I would certainly ask to be referred to the local vascular service for assessment - they are the experts!
Do I understand you to be saying that you also have claudication in your arms as well? It isn't anything to do with steroids - and what did your GP mean by "steroid cramps"? People who take steroids often do develop more cramps than usual but it is only indirectly due to pred - it makes you lose more magnesium through the kidneys and magnesium deficiency can cause muscle cramps but you can be deficient even without taking pred.
Have you had a long term cardiac monitor? Days at least, but there are also longer ones as well. I have paroxysmal a/fib which is almost certainly due to the autoimmune part of the PMR having damaged the electrical cells in the heart. If it is short or not particularly fast I sometimes don't really register it unless I feel unwell and happen to get the pulse oximeter to check just in case. Fitbits and the like are also useful. If they aren't looking at the time I have an episode there is absolutely nothing to be seen once it is past. Glad your GP put you on anticoagulant therapy - that is probably the most important thing as far as my team here are concerned.
When I started on pred for GCA and PMR my BP was found to be high. The GP mentioned steroids increased BP. I was put on Lorsartan which did not suit and ankles swelled. Trial and error I am on 5mg Amlodipine and 1.5mg indapamide. I saw a cardiologist during lockdown as my heart was bumping and thumping. I had the Ultrasound and coronary angiogram three day ecg - all healthy. Ectopic beats were diagnosed which I need not do anything about. After first Afib 15 months ago the cardiologist asked me to carry the Kardia device and report any episodes to him. I haven’t needed to until now. But will discuss
Meanwhile I have had Covid twice and landed up in hospital overnight on an intravenous drip for a finger infection which was tracking up the arm. I had previously shown it to the GP. The finger was due to steroids suppressing healing and antibiotics or so I was told. I have also had two teeth out as antibiotics struggled to deal with infection because I was on steroids or so the dentist said. When I reported my leg cramps to the GP he said that steroids messed with electrolytes and offered quinine which I refused as more side effects. I increased potassium intake which didn’t help much so I put up with them. I also got a UTI which didn’t respond to first lot of antibiotics so was put on a 14 day course and ended up with an allergic reaction. That was the worst. After an episode of weird back weakness. Rheumy did an X-ray and suggested AA pills? The ones you have to stand up to take. I insisted on another Dexa scan which showed no need for them . Back is fine at the moment .
So all in all I have understood very little about PMRGCA and have a horror of steroids.
I was feeling very alone until I found you lot. I am so grateful.
I have found a new GP the one who put me on the blood thinners. I won’t go back to the local one who told me I had a virus causing the crippling headaches and to tough it out as there was nothing that could be done and put me on an antibiotic that didn’t work for two weeks. Neither the GP who seems to dislike steroids more than I do
Perhaps I should see a Vascular team but for now I am luxuriating in being pain free and no longer exhausted I will make an appointment with new GP to discuss.
Sore arms and claudication isn't necessarily the same thing. Claudication is muscle pain that develops when you use the muscles but the blood flow is impaired and can't cope with the extra demand so pain starts after a short time - it goes when you stop the activity and returns when it restarts. Arm pain in PMR/GCA can be claudication but it can also be just sore muscles.
Quinine is one way of dealing with cramps - but a bit old-fashioned and rarely used. Lack of magnesium is more likely than lack of potassium.
As for the one who told you it was a virus and gave you antibiotics - I'm appalled and disgusted!!! Wrong on so many counts ...
I have been reading all this with great interest and would like to have your thoughts on muscle pain and possible claudication of my legs. History back ground. On steriods for 6 years. Came off them 2018 with no return of PMR except after covid injection. Bi lateral hip replacement 2018. Fractures at T12 T8 6 weeks after op. Currently under spine specialist. Decompression operation in 2020 which did not stop pain in my lower leg. Saw spine specialist recently and he wanted to do another decompression op which I am thinking about. Pain now down the whole of leg and through hips although not in upper part of body as when I was first diagnosed. My doctor does not feel it necessary to see a vascular expert. There is a lot going on here but my instinct is telling me it is not just coming from pinched nerves in the back. Could it possibly be claudication from vascular problem. They have also tried steroid injection in L4 and again in L5. I could not argue with the man at the top but wonder if even he has got it wrong. Bone density is now as good as it can be my taking good supplements
I am so unqualified to reply to you and have no idea. I am so sorry you are going through all this. But this is the right place for sound advice so hang on in!
Claudication is defined as pain that appears when you are walking after a short distance and then is relieved when you stop walking only to return when you start again. In advanced cases you have pain in the extremity even at rest. Does that that fit with your experience? Cold or blue-ish feet is also seen.
Thank you so much for your reply. I do not have cold or blueish feet at all. Everything seems to be working well there , except I have some red marks around the ankles which I am told is a weakness of the veins on the return system. I am probably searching for an answer that is not there. PMR is a form of vasculitus I wondered if this could still be the case even though I have been off steriods for 4 years. Is this worth checking by a vascular man do you think.
Oh dear no. Local GP said I had a virus right at the beginning after antibiotics did nothing. He said it was a virus and would eventually go. I had told him the pressure in my head was so bad I had to stay upright and not lie down and it was like molten lava which was trying to burst through my eye. Know what I do now I get upset even thinking about it. The rich bit was when having got help elsewhere I went see him and he said ‘if I had diagnosed you I would have put you on a much higher dose of steroids’. !!! I was totally speechless! Someone suggested that perhaps he had forgotten I had been to see him four times! Maybe!
It was in February this year while I had Covid and a UTI that he prescribed 3 days of Nitrofuratoin which worked but the UTI came back after 2 days . So he the prescribed Trimethoprim for 7days which didn’t work at all so he sent a further 7days with instructions to complete the course. It is now down in capitals on my notes that I am allergic to Trimethoprim.
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