Some advice, please

[Billswife]

I have not posted for a long time but have been following the daily thread and have often picked up some very helpful information. I have been tapering using DSNS taper and am now on 4mg Prednisolone. Would you advise me to taper even more slowly now as I have bouts of fatigue, which is new, and just a feeling first thing in the morning as if the shoulder/upper arm aches are “hovering in the background” until I take my morning dose of pred, and then they seem to go. I have to add that since my original PMR diagnosis I have now been diagnosed with hardening of the arteries in my legs, worse in right leg, and spinal stenosis with disc collapse in the left of my back causing pressure on L5 nerve root, diagnosed by MRI, and I am awaiting a neurosurgical appointment. If it’s not one thing, it’s another! My lovely GP who was so knowledgeable about PMR retired recently and my current GP wanted me to get off steroids “sooner rather than later”, so I have ignored that and she has referred me to Rheumatology, which is grossly understaffed in my area. I trust all the advice given on this amazing site and hope to hear from you as I am aware I am now in the vicinity of my adrenal glands perhaps beginning to come to life. Many thanks in advance for any advice you might be able to give.

[DorsetLady PMRGCAuk volunteer]

If you aren’t already reducing by 0.5mg a time, I would be inclined to do that from now on….so long as you have Uncoated plain white tablets the 1mg can be cut using a pill cutter - available at any chemist/some supermarkets/online.

Or if you have 1s and 2.5s they can be mixed & matched.

Slower taper will help adrenals as well….

[Billswife in reply to DorsetLady]

Thank you DL. I have been reducing using 0.5mg for each taper and feel that this has been the right thing to do. I am already pill splitting 5mg (to produce 2.5mg) with 1mg tablet and splitting 1mg tablet for 0.5mg (giving 0.5mg), resulting in 4mg daily. I also have a “stash” of 3 pmts of 1mg tablets, valid until May 2023, which I keep in case I develop any signs of GCA, hopefully never needed. I think I will remain with 4mg until I feel safe to reduce another 0.5mg. Many thanks for the prompt response; this site is invaluable and very much appreciated.

[diana1998 in reply to Billswife]

I find a sharp knife works well. My pill cutter went blunt and crumbled the 1mg pills!

[DorsetLady PMRGCAuk volunteer in reply to Billswife]

There is no rush…..any dose below 5mg is causing very little in the side effects line….but just go at your own pace. You know when things are right and when they’re not. 4mg may be YOUR level just for now.

[Billswife in reply to DorsetLady]

Thanks again Dorset Lady, that is the conclusion I have come to so will stick to 4mg for the moment and try to get the other medical issues sorted out.

[alangg]

Reducing from 5mg to zero seems to be the hardest and longest process in most people's journey and the fatigue is possibly caused by your adrenal glands 'waking up' slowly as your body asks them to produce the steroids that you have been supplementing orally.

My advice (as a non-medic) is that your quality of life is possibly more important than the possible side effects of a fairly low dose of pred and, if you are coming to terms with other diagnoses, then the stress and angst is not going to help your PMR.

If it were me, I would aim to stay at a dose that I know is working until I am through the stressful time and also confident that the PMR is stable before I very slowly taper again.

[Billswife in reply to alangg]

Thank you very much for your response. I will stay with 4mg at the moment and concentrate on getting the other issues treated. I have had a fairly uneventful PMR journey so far and would like that to continue.

[123-go in reply to Billswife]

A wise decision.

[PMRpro Ambassador]

If it were me I would be slowing down - you are very close to the 2-3mg that Prof Dasgupta told us last summer he often keeps patients at long term because it reduces the risk of relapses. And as well as the smallest possible step down - I would consider taking longer between drops too.

What on earth makes them think we WANT to be on pred at all never mind any longer than we need to be? I would love to have them sent back to physiology lectures ... If what you have done so far has worked - why rock the boat now at a safe dose? And the adrenals are possibly the greatest limitation now.

[Billswife]

Thank you PMRpro. You will see from my previous posts that I have now decided to stay at 4mg for some time yet and concentrate on my more painful medical issues. The new GP who wanted me to get off Pred more quickly obviously needs better knowledge of PMR which I realised the first time I spoke to her but she did ask if I would be OK with being referred to a Rheumatologist so I said that would be fine. I am not holding my breath for that appointment as Rheumatology in this area is struggling . I will continue to seek advice from this forum, as the level of knowledge is phenomenal, and the advice given has been invaluable to me and so many others. Thank you all again for all that you do for us.

[PMRpro Ambassador in reply to Billswife]

Seems an appalling waste of resources sending a patient who is happily at 4mg to a rheumatologist!!

[Cross-stitcher]

We seem to have been on parallel journeys here. I was diagnosed in April 2019. I have not had any flares of my PMR, but I have had to "stand still" several times on my journey down the Pred ladder, firstly at 7.5mg, then at 3.5 mg, and I have now spent nearly 3 months at 1.5mg, with occasional days at 2mg, especially if I know there will be some extra stress or activity on a particular day. Personally, I would be quite happy to stay at 1.5 or 2 indefinitely, as I now feel I am over the "adrenal hump" and have no remaining side-effects from the Pred. I am still taking a small (reduced) dose of Omeprazole and a calcium/ vit D supplement but more as a precautionary measure than out of real need. My recent DEXA scan was good for my age. Good luck "training" your new GP and for the further treatments you have scheduled.

[PMRpro Ambassador in reply to Cross-stitcher]

You've done really well - hope the GP is accepting it happily as they should do. Prof Dasgupta would very likely suggest you were fine and allow you to stay there as long as you like.

[Billswife in reply to PMRpro]

She, or someone in the practice, always signs my requests for repeat prescriptions so I will just continue as I am doing for now. Should I ever hear from a Rheumatologist I will definitely consult this forum before I will be making any changes. Thanks again.

[Billswife in reply to Cross-stitcher]

Thank you for responding Cross-stitcher. I was diagnosed in June 2019 after three and a half months of pain and have followed advice from this forum and from Kate Gilbert’s book. The GP who first diagnosed me gave me no inkling of what I would be dealing with, but on joining a new practice due to relocation, I encountered a GP who had a real interest in PMR, recommended this forum to me and was also an advocate of a very slow taper. She has unfortunately retired and my current GP merely referred me to Rheumatology who, in her words, will be able to recommend drugs which will help me to get off steroids more quickly! I have decided not to consult her about PMR but simply continue to follow the advice of this forum. I will be staying with 4mg and it sounds as if you have found the lowest dose of Pred to keep you on track so very well done. I don’t think I will concern myself too much with “training” my new GP, lol, but will concentrate on whatever Neurosurgical procedures are recommended for my other issues. Glad to hear you are so well and long may that continue.