Advice from gp

[Rebel21]

I was due to see my gp today after 7 weeks waiting, but got a phone call to say it was cancelled due to covid 19. Although I understood the reason I did say that I would prefer to talk to a doctor as in the last 7 weeks I have had 2 changes in prednisolone dose and needed my bloods checking. Especially as I am still struggling to walk and have swelling/oedema to both legs. The doctor rang me yesterday and said he didn't feel I needed a blood test at this time as it was not worth the risk of going for the test. He asked me what dose of Pred I was on and then advised me to reduce it as quickly as possible. I explained that I had reduced it to 15mg this week, but was worried because I was still feeling extremely fatigued and struggling with pain in legs meaning I am struggling to walk or even stand. His answer to this was I was to reduce it by 2.5mg every 10 days to get it down to 10mg and then reduce by 1mg monthly, he then said I will have to put up with the relapse if it happens and in his own words, we will sort that out when all this Covid shit is over. I was a bit taken aback and didn't really answer him. It is only when I have thought about it all yesterday and overnight, that I am not happy with his advice. I do not want to relapse to the state I was in last November when I couldn't even turn over in bed and some days couldn't get out of bed. What do people think, am I being unreasonable, I do understand that these times are unprecedented but I have to be able to function.

[PMRpro Ambassador]

Personally I do appreciate his view of Covid19 - but maybe he was having a particularly bad day even in that context to be quite so forthright! Not at all professional!

IMHO he is wrong about letting it relapse and a reasonable reducing plan should have been offered - but we can help with that providing you have enough pred. I have read your profile but it would be helpful to know what I am about to ask: How much improvement did you have on the starting dose and have you been at 15mg the entire time since xmas? The stress of Covid19 may well aslo be contributing to your problems - PMR doesn't place nicely with stress.

Are you still working? If so, you can tell them you need to self-isolate because you have an autoimmune disorder and have been on over 10mg pred for more than 4 weeks so according to the BSR guidelines plus their scoring system this means you are at high risk should you contract Covid19.

Your swollen legs may well be helped by cutting the amount of salt in your diet and also the carbs - both can contribute to fluid retention when you are on pred, especially if you are forced to be inactive. The low carb also helps with steroid weight gain. Also, whenever you sit down, put your feet up - I never sit at the computer without doing so, I moved from my desk to the sofa with a small table and foot stool so I could and the difference it made is amazing.

This is just to start - this is the link to the Dead Slow approach to reducing. You could try it to reduce 2.5mg at a time - it will work if you are still well above the dose you are looking for but no-one can tell that unless you try it. 1mg at a time is much better. DL also has a slowed taper plan. Then you can see how you get on.

healthunlocked.com/pmrgcauk...

[Rebel21 in reply to PMRpro]

Hi when first diagnosed last November had a really good result within 2 days when started on 15mg, then a week later developed bad headaches and the prednisolone was increased to 40mgs as they suspected GCA. I had all the tests and after a week was told by a hospital consultant that it was not GCA and told to reduce back down to 15mgs over 5 days. Then the middle of December developed a bad flu like thing and leg and bilateral shoulder pain. Had decreased the Pred to 12.5mgs as instructed by doctor. Went back to work end of december but only lasted 2 weeks before I found I could not manage my job any more. Had bloods taken in mid January and CRP had gone up from 5 to 12, having been 45 at diagnosis. Pred was put up to 20mgs by doctor and symptoms seemed to relieve, apart from about a month later my legs started swelling and became like lead weights. Spoke to doctor who said stay on 20 for a month then reduce by 2.5mgs. Reduced to 17.5mg beginning of March and then down to 15mg since last Monday. I don't feel any worse at the moment so thinking it maybe because of the steroids. I have been off sick from work since mid January and there is no way I could go back and do my job, I am a trained nurse so too busy and too stressful. I don't have any other medical problems or didn't have prior to diagnosis, I was not on any medication prior to this.

[PMRpro Ambassador in reply to Rebel21]

On the basis of that I would say you should continue to taper the pred dose but more slowly than the GP said as that is crazy in PMR - try the other measures suggested for the swollen legs. If you asked you'd have heard there are lots of people with PMR who have the concrete legs problem so maybe a post about that might gain you some advice but it is difficult to decide if it is due to the PMR or something else. Obviously at the moment you are not likely to get much in the way of investigations to look for other problems.

[Hidden]

I suspect GPS are under as much stress as everyone else in the NHS but manners cost nothing.

Looking at your posts since last December it is a confusing and confused process of up and downs of pred with no relief. There may be another dx that needs to be done. But I must say that fatigue was my predmin by symptom for PMR and lasted and year or two to varying degrees. Are you on others meds, have other health issues that might explain swellings etc? Sometimes if pred hasn't really worked, then either pred hasn't been managed well in terms of up and downing or it's not PMR. Perhaps others may help more but it may be a time to follow a slow taper if you have the pred, and if the symptoms get worse it's evidence that the dx is correct. You are only what 6months in? I felt rubbish most days and ended up at 13 to 15mg for the first 14months after a disasterous reduction to 8mg. I really don't know if this helps...there must be another dr you can at least speak to regularly, but it's is a bad time to have issues. 🌻

[scats]

I feel it is unfair to subject you to more stress than you are already under. in such difficult times. My PMR always responds to stress almost instantly, and you have my sympathy.

I can not improve on Pro's advice, I too work from a sofa with a footstool and side table.

I hope you get things sorted.

[Blearyeyed]

Yes , I agree with Pro.

On the one side your GP is trying to protect you in their opinion by getting you on a lower dose during the Covid crisis.

But they probably , and understandably , did not have time to think through the wider issue that having a Full Flare of symptoms of your PMR could affect your ability to cope fighting another Disease because of how it could reduce your General Health.

On the other side , people in our long term Chronic Conditions will get understandably concerned that not getting our routine monitoring , double checking what is going on in a Flare or getting dose advice may make them worse and more vulnerable or in need of help.

Take the advice from Pro .

After the Crisis , monitoring will go back to normal .

In the meantime , it's our job to use what ever other advice we have and good , regimented Self Care at Home so we can help reduce the symptoms we have and understand that the GPs and Hospitals need to concentrate all of their time on dealing with Emergency Care. Not just for Covid sufferers either , but for others with Severe Infections or Injuries and Chronic Issues like Cancer , Heart Disease and Lung issues too.

If you want more advice on how to cope with your Flare in pain or symptoms , side effects , accompanying issues , self care and coping with tapering please use the Forum as much as you need to help you . If this does not help and your symptoms become more urgent your GP will definitely be happy to help by phone again , to the level that is available to them and doesn't put you at risk.

Post yourself or Search through the wealth of old advice and links if you have a specific question or need to feel less Stress from coping with PMR under Covid Rules.

Take Care xx

[nuigini]

PMRpro has provided advice on the taper. I can tell you that I had legs of lead and swollen feet, ankles and legs during the first few years with PMR (currently in year 6). Never determined the reason for the swelling but it was kept under control with compression knee high stockings. The swelling stopped about a year ago and I can't really say why. It may have been a change in blood pressure medication.