Does PMR cause breathlessness and cold hands and feet?

[Motida]

I am 80. UK based. Diagnosed after a 7 month battle in Oct 2022 and started on 15 mg Now on 9.5mg but started to get breathless. I take a preventive asthma inhaler for years but never suffered badly.

Saw the GP on Monday and it seems all conditions are now put down to PMR, including cold hands and feet (I do have neuropathy CMT(?) but never suffered so much and now breathlessness. Pulse rate is nearer 99 rather than mid 70 per minute. That is the Pred apparently!

The GP typed the whole ten minutes of the appointment which gave the impression of them not engaging in what I was saying and what I had typed out for them. I mentioned feeling very unenthusiastic about life - but that is down to age! Blurred vision also age or Pred.

In short would just like to have a list of the most common symptoms to check out, so I am not accused of being "a middle class worried well" which a former GP told me. Put me off ever since.

Many thanks

[PMRpro Ambassador]

Doctors like that make so angry - both of them. You are right, all the blame is put on pred and PMR and they may miss things as a result. And at 80 - I think you are allowed a bit of leeway as "worried well" since you would like to continue in that state!!!

There are so many things that may - or may not - be down to PMR and pred and breathlessness is one of them, However - I'm surprised any of this has only become a problem as the dose gets lower. What was your pulse like at the higher doses? How do you measure it? Have you got a pulse oximeter - mine shows the rhythm of your heart beat on one of the settings which I find quite useful. Are you on any medication for BP or the like?

There is programme on channel 5/5* called GPs behid closed doors. It should be compulsory viewing for many GPs as it shows best practice which many of them could do with adopting!!

[Motida in reply to PMRpro]

Thank you very much being in touch. I use an oximeter and an arm cuff Blood Pressure machine once a month. Glad to say that the pulse rate seems to have gone down to around 80. I take 25mg of Losartan a day as well.

The main symptoms I have now are

Sweating/hotflushes day and night but was told they are a hangover from the menopause - really? Lots of cramps in the hands during the day alleviated by squeezing a small ball. One hand is always cold where I had a Carpel Tunnel procedure which left me with depleted sensitivity in the fingers. Night cramps which start in the big toes and then travel to the shins and groins. Spray them with deep heat and that helps. Weight gain but on the same diet as before starting on Pred. GP said it is water retention and that's why I have a reduced urine flow rate and then urgency. Tenderness on the top of my skull but tolerated. Sudden fatigue where I feel faint and must sit or lean against something. Dropping off to sleep during the day. Pain in the top of the buttocks in bed which comes and goes - thought it was around the kidneys. Crops of skin tags in the groins which come and go but may be related to the disseminated Granuloma Annulare diagnosed 10 years ago. Blurred vision which cannot be alleviated with a new prescription for distance - not sure why not. Low mood or lack of get up and go feelings! Breathlessness which I am going to follow up on with another GP if it does not improve, as that is not PMR related.

What would be really helpful is to know which of the above symptoms are directly related to PMR. I wanted to put them into an easy to read list but it would not allow me. Does PMR home in on other conditions like under active Thyroid, GA, neuropathy and make them worse?

Once I get a better understanding, I will make sure I am not fobbed off by the GP if something else crops up. Most conditions can be figured out from NHS choices and OTC treatments now. The main thing is that the GP promised to prescribe Pred whenever I asked, so that is a big anxiety gone. The normal Annual blood test may not be so easy to get though.

Enjoy whatever the weekend offers to each of you. Thank you for sharing all your contributions and for the prompt advice from Dorset Lady and PMR Pro.

[PMRpro Ambassador in reply to Motida]

"was told they are a hangover from the menopause" - really NOT! What utter rubbish. PMR/GCA and pred can both result in sweats, especially if the pred dose is close to the lowest effective dose and you are bordering on a flare as a result. If your sweats were well away after the menopause, they didn't magically return.

Cramps - try a magnesium supplement, that may also help the heart problems. Pred depletes the body or various things, including magnesium. Low Mg results in muscle cramps and sometimes heartbeat problems.

Weight gain - cut carbs drastically, especially processed carbs and added sugar and limit fruit. It isn't just fluid retention, pred triggers the liver to release glucose from body store in liver and muscle. Excess is then stored as fat - you can't control that, you can control dietary intake of carbs. It works - and you should be able to lose the weight if you cut enough.

Sudden fatigue can happen when you try to do too much - and also the need for a nap - but it and some of your other problems suggest to me it is worth looking at your heart rate when they happen and possibly also your BP, I had similar problems which eventually turned out to be atrial fibrillation with tachycardic and bradycardiac episodes - when the bradycardia happened I got hot and sweaty, dizzy, my BP plummeted and I felt very faint. Eventually I collapsed during an episode, hit my head and ended up in the ED - where they discovered I was having pauses in heart beat of up to 7 seconds, a pulse of under 10 for short periods. No wonder I felt faint! A pacemaker sorted that. My atrial fibrillation was caused by the autoimmune part of the PMR damaging the sinus node that governs heart rate.

Blurred vision is not uncommon on pred - it can also be associated with GCA but sometimes it just is what it is. Some of us just moved our specs up and down our noses and that helped! You have seen an optician - so shouldn't be cataracts, another potential gift of pred though not always. The optician did check your eye pressures I hope - pred can cause them to go up too though again, not always.

Breathlessness can be cardiac related or PMR-related if you are trying to do too much - your muscles are working much harder, It is also an unusual but real adverse effect of pred.

Some people find their hypothyroidism is worsened by PMR - depends.

You can't see a more sensible GP I assume? If there are several in a practice it is worth trying them out - had I tried others in my practice my PMR might have been recognised sooner!