Advice before doctors appointment - Monday

[Kirklasu]

Hi,

My mum is weary and tired all the time; though she can push herself to do things (such as that 7 mile walk she did on her birthday in February)

She is also breathless when she walks anywhere. Both conditions have been noticeable for the last year.

I need to know if this is likely to be caused by the PMR before our appointment with mums normal GP at 10:30 tomorrow. Sorry for such short notice.

Since Feb mum went up from 1 mg to 15mg due to feeling so much pain after starting a new class of sitting keep fit ( and also doing that 7 mile walk) when she was only on 1mg of Pred. Before upping the dose she had organised assistance getting up from her sofa and loo. Once on the 15 mg we abandoned the gadget in the loo as she was so much better.

She came down to 10 mg and then 7.5 mg even though I wrote to her doctor asking her not to do this. Mum went back up to 10mg after speaking to another doctor who advised she reduce only by 1 mg in future. Mum has now been on the 10mg for a month but is still breathless and tired and week. We don't feel that she has stabilised.

Tomorrow we need to know if we should request staying on the 10mg for longer or reducing to 9mg; and if we reduce, how long should mum stay on 9mg before reducing to 8mg?

It would be really helpful if you could offer advice on these levels and also if her tiredness and breathlessness is due to the PMGR or not. How do you know when you have stabilised after a reduction? She is not experiencing pain.

Many thanks

Susan

[DorsetLady PMRGCAuk volunteer]

Hi Susan,

Breathlessness can be caused by the PMR and also can be a side effect of the Pred, so a bit of a double whammy really!

If she was on 15mg in February, then 1 would say she’s come down too quickly again. Personally I don’t think she’s been given a chance to stabilise at any dose poor lady!

If she’s not good at 10mg after a month, then I don’t think that’s enough for her. You could suggest an increase to 12.5mg or 13mg depending on what tablets she has, for a month to see how she is.

Then, and only then if she’s okay a monthly reduction of 1mg. But she does need to make sure she’s not overdoing it though, I know she wants to remain active, but in a sensible manner.

It’s good she’s not getting any pain, that should indicate she’s on the right track!

Might also be worth asking if a chest X-ray might be useful just to rule out anything else causing her breathlessness.

[Kirklasu in reply to DorsetLady]

Thankyou so much DorsetLady for your speedy reply. It is all very helpful for our meeting with mum's GP tomorrow and explains the likely reasons for how mum is feeling. Ihope we can convince mums GP to do as you suggest. I know we are not doctors on this website but there is a lot of experience and helpful guidance. I did provide a link for the GP.

Best regards,

Susan

[DorsetLady PMRGCAuk volunteer in reply to Kirklasu]

Hi again,

I see your comments to Jane about your Mum’s activities.

Somehow or other you must get her to ‘ease off’ - and I appreciate that may not be easy, but she is not doing herself or her illness any good with trying to go on ‘as normal’. She has a serious systemic illness and needs to build in rest - a little every day.

Get her to read this - even if you have to tie her down!

cdn.totalcomputersusa.com/b...

[Kirklasu in reply to DorsetLady]

Hi DorsetLady,

I have just read your link and thankyou for sending it. It's a lot to read but worth it and it's a very helpful way of thinking about mum's condition and 'managing' it.

Once again, thankyou for giving up your time to help us.

Best regards

Susan

[SheffieldJane]

There is a lot to take in here Kirklasu. When your mum increased from 1 mg to 15 mg, was the 1 mg a dose she had tapered down to? Did she do that gradually?

Then it seems that there was a rapid decrease to 10 mgs from 15 mgs. Was 10 mgs to 7.5 mgs done in one jump?

If the answer to the above questions is yes. I am not surprised that your mum’s system is confused.

She also did far too much when she was down to 1 mg. The subsequent flare didn’t have enough time to settle at 15 mgs. Then her reductions seem too fast and too steep. Has this dosing been guided by her GP?

Breathlessness and extreme fatigue go together with autoimmune diseases and the use of Prednisalone. In my view your mum needs a longer period of stability on 10 mgs and her reductions should be more like 0.5 each month, stopping at any sign of a return of PMR symptoms. Get a good pill cutter.

You don’t say what period of time your mother’s illness covers. PMR can last for years eg 2-5 or longer. Pred allows pain relief and relief from stiffness but isn’t curative. She still has the illness.

The doctor will want to check her blood pressure and heart to ensure that nothing else is going on, probably various blood tests and look at the side effects of any other meds.

The above is only my opinion based on the brief facts in your post. I am not a medic and I don’t know your mum’s medical history. Good luck, it’s hard not to worry. I’ve been there.

[Kirklasu in reply to SheffieldJane]

Thankyou SheffieldJane,

Yes, I tried to summarise and left out lots of details. My mum had been decreasing herself without much guidance or knowledge before we found this website. We can't remember the period of time that it took her but she began on something like 25 mg at some point in her history. Now that we have information from this website we are sure that mum decreased her dose to 1 mg too fast. She was very keen to get off the steroids. We had no idea her weakness and tiredness was in any way linked.

It was after the pain came back in Feb that I researched it and we knew she needed to go back up. She was put on 15 mg in Feb and after 3 weeks reduced to 10mg and then after 3 weeks to 7.5 mg ( and all this despite my letter to the doctor appealing against this sort of reduction pattern.)

At 7.5 mum was significantly worse so she called and spoke to an available doctor who put her back up to 10 mg which she's been on since. But is still weak and breathless. I understand that both of these can be linked with the condition and the medication.

All in all mum has had the condition for at least a few years but has not always been on medication. I think she has had at least two sessions of medication including this one.

Mum is learning to work with the condition but still struggles with the idea of resting for a day after an activity day as she is used to 'just getting on with it'. But she has rested for most of March as she had a tummy bug ( or was it the PMR!) and in the last week has decided to get on with things such as driving out to a cafe with a friend or walking to the local shop and carrying a bag back. Trouble is the following day she did a full supermarket shop followed by putting washing on the line! But she has rested today and reasonable rest yesterday.

I hope this answers your questions. You have certainly helped us and you guessed correctly.

Many thanks

Susan

[SheffieldJane in reply to Kirklasu]

Hi Susan, your mum sounds amazing, but she isn’t getting the best out of Prednisalone with her pattern of taking it. It’s not effective as a painkiller every now and then for a few weeks. In fact this is probably contributing to her feeling rotten. She needs to stick with a course and taper very gradually over a long period of time, stopping the taper when she becomes symptomatic and resting at that dose for as long as it takes. It has taken me 2 years to get from 20 mgs to 7 mgs but I have had no flares. I need to nap every day and pace my activities. That way I can lead an almost normal life. I am guessing she’s older than me and the kind of person who always has to be busy. It is hard to adjust to a different way of being, but she needs to, for her long term health’s sake.

[Kirklasu in reply to SheffieldJane]

Thankyou SheffieldJane, I was thinking she should stick on the 10mg for as long as it takes or even go up slightly.

Many thanks and I'm pleased that you have been able to reduce to 7mg and stick there as its not so high a level. I hope mum can do something similar.

your advice is very helpful, it would be lovely if mum could manage as you do. I'm very happy for you and hope mum achieves the same with everyone's advice.

best regards

susan

[PMRpro Ambassador in reply to Kirklasu]

I, too, stick to the dose that leaves me feeling pain-free and reasonably well. I do almost everything I want to - although I do spread things out. Doing the washing is one job a supermarket shop another. And you might manage one in the morning and the other in the afternoon providing you rested in between. Pacing is very important.

Chopping and changing the dose of steroid also adds in various effects as your poor body has to deal with the changing level in the body. Keeping it stable makes a big difference.

[Kirklasu in reply to PMRpro]

Many thanks PMPpro, my mum will find his very helpful as she is only just learning to 'pace herself'.

Best regards to you

Susan

[Alliand]

Hi Kirklasu,

I have been up and down on steroids between 16 to 8. since being

C-ANCA + about 18 months ago after 2 short viruses, 3 months apart Within a day or two of recovering from 2nd virus, I was awakened with a sudden and intolerable pain in the upper body I had never had before which took me to a rheumatologist. Also now on methotrex weekly 15mg..after losing vision temporarily in left eye while tapering.

I became quite upset recently when I began experiencing shortness of breath after mild exertion. I think you mom is amazing for trying an exercise class and doing so much walking. I was an avid exerciser for 20+ years and now to just go out to the garden to cut a few flowers has become difficult.

But her activity may have been too much. She is probably not stablized. Because these diseases affect the whole body, it may be wise to ask for a cardiology referral, or at least to have her blood tests repeated to check for anemia and to have a doppler study of blood flow to be sure oxygen is getting where it needs to be.

I think the only way to know if one is stablized is with a complete return to normal for an extended period of time.

Best of luck...

[Kirklasu in reply to Alliand]

many thanks Alliand, this is most helpful to us. I do hope you are feeling better soon yourself. We have a very good idea of what we can expect and should ask for at mum's appointment tomorrow

best regards

susan

[Alliand in reply to Kirklasu]

My pleasure. I hope things went well at the doctor today. Stress and over-doing is an enemy to remission/recovery. Your mother is lucky to have you as an advocate.

[PMRpro Ambassador]

Is your mum having any other symptoms? Such as palpitations?

[Kirklasu in reply to PMRpro]

No, mum has not complained of anything like that

[Telian]

It's all been said Kirklasu, just to emphasise that your Mum's pattern of reducing and increasing her pred is not condusive to recovery of this illness, everything needs to slow down including her activities (think we're all envious of her for that). I understand she is not very happy to do that but it will take her much longer to recover if she doesn't - as SJ says if she can pace herself and include a rest each day that will be beneficial in the long term.

Best wishes

[Rugger]

Susan,

Your mum sounds to be an active person and I wonder if she would 'enjoy' being a member of a local support group - and you could go too. At our group in Yorkshire, we chat and exchange PMR & GCA 'journeys'. Have a look at pmrgca.org.uk to see if there's one near where she lives. (I'm assuming you are in the UK?)

I hope you got on well at the doctor's today.

[ipsidipsy]

Taking into account all the other wonderful advice given by members, has your Mum had her Vitamin D levels checked? I felt a lot of the same symptoms as her when reducing and had my levels checked they were very low - 12 should be between 78 and 125. I have been given a mega dose of Vitamin D 50,000 yes I did say 50,000 once a week for 6 weeks. Now on 5th week and feeling so much better, more energy etc. Had my levels checked this week and they are now up to 69, not quite right yet but the difference it has made to me is quite remarkable. Hope this may help.

[Kirklasu in reply to ipsidipsy]

Hi Ipsidipsy,

many thanks to you and all those who have spent time writing to me with advice.

I will be making a list of all the ideas for our next GP visit incase mum has not made progress (in a month).

Just to let those who have written how yesterday's GP visit went; we are happy with how things went. GP has agreed num should stay on 10mg Pred for a further month and come back to see her than. Also, is concerned in case the breathlessness and fatigue is not caused by the condition or the Pred and is sending mum for a ...... Cardiogram in case of a heart murmer (she thinks she hears something but not sure) and blood tests in case of anaemia.

She now seems amenable to reducing Pred more gradually.

I know you have all advised many helpful ideas which I will list, but we wanted to achieve staying on 10mg and slow reduction as a priority first. I think we did well.

best regards to you all and many many thanks

Susan