What to do now🤷‍♂️

[Griggser]

About 5 or 6 months ago I had my first depo-medrone injections in an aid to break through the 9mg barrier. So following the DSNS method I’ve reduced down to 7.5mg but all is not good news. I’m feeling awful with my hips hurting, struggling when getting out of the sofa and going up and down the stairs. My hands are quite painful and my knees have joined the party.

I now don’t know what to do. Increase my steroids, but what level? Grin and bear it and hope my body adjusts? Don’t bother getting the next depo-medrone jab in January?

Im really unhappy with the side affects of the steroids, loss of muscle mass and very thin skin. I’ve also put on a bit of weight since having the d-m jabs which has all gone to my stomach. It’s all a bit depressing which leads to a oh blow it I’m going to have that piece of cake or a strong drink which I then have guilt feelings about.

On top of this I haven’t managed to get any relief from the post herpetic neuralgia pain in my eye, forehead and scalp. Of course I’m on a different drug for that (Pregablin @ 600mg/day) with the side affects associated. I hate what this illness has done to me and really would just like to be out of constant pain.

[PMRpro Ambassador]

A depotmedrone injection will only help you break a dose barrier for as long as it is effective in your body - and when the injections are used to manage PMR they only last for about a month. They let you get to a lower ORAL dose because the depot injection releases corticosteroid into the body - so as you lower the oral dose, the depot release tops up the oral dose. But it is all gone after a month or so - and you are back where you were but probably at a pred dose that is now inadequate to combat the daily release of inflammation and so it builds up again and you have symptoms again. i.e. you flare. And like any flare - no, your body will not adjust. You will most likely continue to get worse symptoms and if you aren't careful, you will be back to the beginning to get it under control.

I'm sorry - but there is no cheating, no forcing the issue with PMR. You need the amount of pred you need - or an effective steroid sparer. In the UK that would mean trying a DMARD as the biologics aren't approved for PMR. Some people get a good result with MTX or hydroxychloroquine but not guaranteed and you have to try them to find out if you are one of the lucky ones.

I have had PMR for over 20 years no, been on pred for 16 of them. Because I live in Italy, I get Actemra and it has allowed me to get from 19mg pred 3 years ago to 7mg now. I can't get lower - at 6mg the bicep pain stops me using my arms and adrenal issues raise their head. If 9mg was adequate to manage the PMR symptoms I wouldn't be on the Actemra. Is it SO bad?

[Griggser in reply to PMRpro]

I’m beginning to think that 9mg is my lowest and even at that level I’ve never been pain free.

I have tried all the steroid sparers with no luck. I do think I should probably have given methotrexate a longer streak. But that’s another not very nice drug!

[PMRpro Ambassador in reply to Griggser]

Certainly isn't. I lasted 4 weeks!

Have you ever been pain-free? I had 4 days recently, totally pain-free without any painkillers at all! Christian has decided I'm correct in my supposition that my back problems are GTPS+ and ignored the pain clinic fear of steroid injections. He did an ultrasound guided one for the sacroiliac joint back in the spring and two more a few weeks ago that have improved that result. I have days with no pain, days with a bit that 1 paracetamol tablet almost sorts. This time last year I had bought a rollator because I could barely walk into the village and back and carrying any shopping was almost impossible. It is what I have said all along - and it needs aggressive targeted treatment. And I think there are a lot of us in the same boat - same class at least!!

[Griggser in reply to PMRpro]

I’ve ever really been pain free. After taking the first initial dose of steroids I couldn’t believe the miracle of steroids as the pain went. Now did it go totally, no I don’t think so but I had fibromyalgia before the onset of PMR. You’ll probably remember I have had a rock and roll affair with steroids and at one point I was taking 40mg.

The levels of pain have fluctuated but where I am now is more limiting than it has been for a long time. It’s always been when I get below 9mg things become more difficult.

I was aware that the depo-me drone injections would wear off over the three month intervals but hopefully that my body would adjust to the lower oral dose and not flare once the d-m wore off, seems it was false hope.

I think the best thing I can do now is arrange a telephone consultation with professor Hughes as it was he who suggested the d-m injections.

Thanks for your ever helpful input and have a very Merry Christmas

[PMRpro Ambassador in reply to Griggser]

Your body isn't going to be able to adjust when the steroid in the system is simply too low for the amount of inflammation. I think what this has shown is that this is still a case of lots of disease activity not a problem of adjustment.

[tangocharlie in reply to Griggser]

I think some of us have a variant of PMR that is volatile and doesn't fit the text book pattern. To paraphrase Dr Mackie in thee latest edition of Newswire, while some people find tapering a breeze not everybody is the same. I'm a long-termer and have also tried D-M injections a few years ago which worked very well for a short while but aren't feasible in the long run because it is hard to control how much steroids you have in your body vs what your body needs at any given time. (I don't think that's grammatically correct but hope you know what I mean). I am currently on 11mg of Pred daily and on Hydroxychloraquine (HCQ) and I think the latter is what has enabled me to get down from 25mg per day 2 years ago, but there is no way of knowing whether it is the HCQ is doing the trick or not of course. I keep trying to go down to 10mg but even going very tentatively I pretty soon get fatigued and have stiff hips and shoulders and end up going back to 11. So for me 11 seems to be the sweet spot, for now at least. I'm dreaming of 10 so will try again in spring as i tend to flare in winter so don't want to risk fate. But what I'm trying to say is if you don't have the standard type of PMR then the standard treatment regime won't control it and we have to be flexible. We are where we are, we have to accept that and embrace it as there's no point worrying about it as me mam used to say

[arvine in reply to PMRpro]

Am I correct in understanding you lasted 4 weeks on methotrexate? As I have posted started on weekly injections just over 4 weeks ago, this Friday would be my 5 th injection, I have not felt much better , some days worse, some hair loss sime diaharrea, have appt tomorrow afternoon with rheumy, only phone appt, am considering to tell him I want to stop injections, to which I think his response will be “it can take much longer to notice the effects of methotrexate”, Can I ask why you only lasted 4 weeks on this drug ?

[Griggser in reply to arvine]

That was PMRPro who I’m sure will be along soon.

[arvine in reply to Griggser]

Yes I was responding to her comment , thank you

[PMRpro Ambassador in reply to arvine]

Because for me the fatigue was overwhelming and as carer for my husband it wasn't an option.

[arvine in reply to PMRpro]

Ah ok so some side affects do come on pretty quick then, thank you

[PMRpro Ambassador in reply to arvine]

As we keep telling you, everyone is different. You can only go by what YOU experience. And the longer you are on it, some of the effects improve, while others may appear.

[arvine in reply to PMRpro]

Oh yes I understand that, but will decide if I am willing to experience these side effects for too long and not having any improvement for daily pain, thanks for your input though

[tangocharlie in reply to PMRpro]

You've said exactly what I was going to say re the D-M injections and how they work

[reefswimmer]

I feel so sorry for you with the pain you are suffering. Just my opinion and I am not an expert, just a fellow sufferer, increase your steroids again and get rid of the pain. That's what I have done in the past and I have still managed to get off steroids completely. The first time I had PMR, it took six years and the second time it took one year. I have currently had PMR again for a year now. I got down to 4mgs per day and the pain came back and so I am currently on 6mgs per day. I'll start reducing again in the new year and see how I go.

If I'm NOT in pain, I can exercise....swim, walk and so I don't have a weight problem and I don't have muscle wastage. I do bruise easily and I have osteopenia, but as I am 71years old and female, I am probably not that much different from other females my age.

And don't feel guilty about having a drink. As long as you are not drinking to excess and if it dulls any pain you are feeling then enjoy a glass of wine in the evening.

There is lots of good advice on this website and lots of useful information that you will never get from some doctors. At least you know you will be getting advice from people who actually suffer from PMR themselves.

I just feel, you should take enough steroids to live a normal life and not worry about it. Eat well and exercise so you stay strong and so you don't get stiff and make the best of every day. Don't struggle on in pain and miss out on the fun things in life.

I hope you feel better soon. PMR just takes time.

[Pollyanna16]

Dear Griggser, I just wanted to pop in and say how sorry I am you are still suffering excessively. Do you still make trips to the Canaries and does that help at all? Im thinking with general feeling of well being. I hope you can have a good Christmas with your family and very best wishes from us all in the Truro group. xx PS & thank you to PMRPRO for all her input!