Just curious if anyone else experiences this?

Whether it is associated with the PMR or not, the numb arm needs to be looked at. It is possible that you are suffering from fluid retention that is leading to a pinched nerve but there are other possibilities. 30mg is quite a high dose to start on for PMR, 15mg is the recommended usual starting dose. If you were on a lower dose I'd suggest it might be the stress of the infection.

Some people do find they get wobbly sensations and blame it on the pred. When you say you get aching legs what do you mean exactly? Is it when you have been walking, climbing stairs or something? If so, does it improve when you stop exercising? If so it could be claudication and your doctor should have a look and consider possible GCA - you can have it without visual symptoms.

Eileen

Thanks for the quick response - the aching wobblies just comes from nowhere, not after exercise. The dead arm only lasts a minute or so and goes off.

I'm aware of gca and trying not to be hyper vigilant! Just because it can doesn't mean it will, but any of the symptoms that I think I might have do worry me. One eye feels like it has something in it most of the time and the both water a lot (which I never used to have) but in truth I don't think gca is an issue atm.

The doctor did start me on 20mg pred, but when I first saw her (having previously seen another) I was so disabled and in such pain that when after a week/10 days it wasn't completely controlled (although still miraculous) she upped it. Last review in Dec she was really pleased, but said wanted one more month to consolidate at 30mg and then start slow reduce from mid Jan. I think she read up on all the literature and is well aware of the dangers of rebound flare if reduce too quickly.

Probably nothing to worry about re the weakness bit, I'll mention it when I see the doc - just thought I'd take advantage of all the experience on the forum and see if it was something normal with pmr that I'd missed reading about.

Thanks again

Jenny

Jenny, if you have 'just' PMR, such a long time on 30mgs really shouldn't be necessary and could certainly be contributing to what you describe as "wobbles" if by that you mean a feeling of weakness and shakiness within your body. I had to start on 40mgs due to GCA and I can certainly relate to such "weakness and wobbles".

You say that you originally started on 20mgs for a week to 10 days but were advised to increase to 30 as your pain wasn't completely controlled "although still miraculous". The pain of PMR is rarely "completely controlled" in spite of steroids - they are not curing the condition but merely reducing the inflammation that is causing the pain and whilst most of us experience a big improvement very quickly after starting treatment, very few of us become pain-free - around a 70% improvement is generally experienced.

As well as getting your GP to check the issue with your arm and your blood pressure, if you haven't already done so, get a good optician/ophthalmologist to check your eyes and hopefully that should give you some reassurance - good luck!

Thanks so much for your response.

Would you experienced contributors agree with 10% dosage reductions down to 15mg? That seems to be the recommended through the posts on the forum. But what intervals between reductions please? Reduce weekly? Fortnightly?

Advice gratefully received

Jenny

2.5mg seems to be OK for most people down to 15mg even though it is more than 10% - but not everyone manages it. If you are someone who fails at 2.5mg at a time then going in smaller steps of 1mg is a good idea and will work for most people. Or 2.5mg at a time to 20mg and then slower. The 10% applies all the way - it means you have to reduce the drop as your daily dose reduces, to 1/2mg in the later stages and there are other tricks then too.

I personally am sure that reducing and sticking at that dose for 3 weeks to a month is the minimum - you have to allow your body to get used to the new dose to be sure it is still enough and that was what I did down to 10mg. I also also had a week or so taking the old and new dose on alternate days.

Now I spread my reduction over a long time - I don't go from old dose every day to new dose every day as fast. New dose on 1 day, 6 x old, new dose 1 day 5x old - steadily decreasing the number of days between old and new until I get to alternate days, and that is just a 1/2mg drop! If I still feel good I have a week on alternate old/new before setting off on the next 1/2mg. But I have struggled to get below 9mg/day for the last 4 years - doing it this way I'm heading for 5mg/day and have had no problems at all so I'm feeling quite happy.

Jenny,if you had raised ESR and CRP blood tests markers at diagnosis, then those tests should be repeated before any reduction and used as a guide, together with how you feel, as to whether they have normalised sufficiently to take a drop in dose. If they have, and if you have a definitive diagnosis of 'just' PMR and not GCA, then at this high level of 30mgs, you should be able to comfortably take a drop of 5mgs to 25, stay there for a week when if all well you can try a 2.5mg drop to 20, again remaining there for a week to 2 weeks. As you have had difficulty and have been yoyo-ing up and down the doses, then it may be wise for you to keep to these smaller reductions, so going to 17.5 from 20, but again going by how you feel. You might feel a worsening of pain immediately following a reduction but this could just be related to steroid-withdrawal pain as opposed to returning inflammation - this is where the repeated blood tests, if applicable, can be helpful. I managed faster reductions than this from the high doses but we are all different in the way our bodies react to both the disease itself and the steroids. It's a learning curve for each one of us, but I hope that helps.

My esr at first test was 27, not high, but 4 at next test after steroids - so it was high for me.

Thank you both for your help - my review with the doc is next week - I think I'll probably tell her I want to drop 3mg the first couple of reductions and then smaller amounts. But I'll listen to my body and act accordingly.

Many many thanks.

i have just been told by my gp that i have pmr and have been on pred 15mg for a month, i have just read mrs o`s message about the wobbles and would like to ask some of you for some advice, i frequently have a case of the wobbles in my legs and feet, sometimes my feet feel like lead weights at the same, this happens usualyy in the mornings, is this some thing i should be worrying about and do i need to tell my doctor. have to say i am worried

thankyou in advance for any replys

Hello Lynda

Many of us with PMR describe the feeling in our legs and feet like walking through treacle - does this describe what you are feeling? It is caused by the inflammation of PMR. It isn't unusual that the feeling is worse in the mornings after stiffening up in bed overnight and whilst waiting for the daily steroid dose to kick in. Long term steroids can weaken the muscles so it is always important to have a daily walk, even if you can only do 10 minutes at first. Try not to worry about it as the stress won't help your PMR, but, of course, it's always wise to check out any new symptoms with your GP.

MrsO

hi mrs O thank you for your reply. i have had an appointment with my doctor this afternoon who has booked an emergency appoinment for me at the eye clinic on monday morning and bloods the following day and told me to have a very quiet weekend and that should any changes occur i must dial emergency services straight away, so i am pleased that i read about pmr as i would never known that i am a high risk case. please anyone who has any concerns dont be afraid or embarresed to contact your gp asap. My high risk is connected to gla