Please help me to understand?

[Jlml]

Good evening,

I hope you are all having a good day.

I am quite confused as to whether my symptoms are due to polymialgia or withdrawal symptoms from Pred.

I was coping quite well and managed to reduce my dose to 5.5 mg a day but a couple of weeks ago I had a flare up which included the usual pain I get under my arms , down my sides and across my chest and back with occasional pain in arms and legs. Also I became quite depressed , with no energy for life and no interest. This is not like me.

I was in Spain for 2 months over the winter and managed to reduce quite well but I think I may have rushed the last couple of drops of pred.

I spoke to the rheumatologist at the hospital who wanted to put me on methotrexate alongside the pred. I am not keen on this idea. I have been trying to reduce pred for 18 months now which is not a long time?? And I would rather keep trying. After much discussion she agreed for me to up the pred to 6 mg for 2 weeks and then reduce back to 5.5. I tried this but it did not help so I increased to 7mg and low and behold , I am much better and so is my mood. I have taken 7 mg for 5 days so should I now drop back to 6 and then in a few weeks drop back to 5.5 or stay at 7 for a while against the rheumatologist advice?

And do you think my symptoms ( including my mood) are due to the disease or steroid withdrawal?

Sorry for so many questions but I am feeling rather lost.

[SheffieldJane]

Your stage of tapering is so tricky because of the Adrenal glands adding their struggle to your woes. It took me 3 attempts and a year to finally get from 7 mgs to 6.5. One day things just felt different and I got down. It is a pity that you have a King Canute of a Rheumie who seems to think he can order a disease process to obey him, like the tides.

You are right 19 months is not long to be reducing the medication for a disease that’s median duration is 5.9 years.

Do you think anything triggered your flare? Like stress or overdoing it? It maybe that you just overshot your ideal dose, to contain inflammation, for now. As PMRPro says this is not a race to zero Pred but a nuanced attempt to find your optimum dose to control harmful inflammation. I think that your mood elevation alone shows that you moved in the right direction. I’d be inclined to rest there for a while. It is a great pity that your Rheumatologist is not your ally in this, it makes a huge difference. Sometimes, the most stress flows from those who are supposed to help us. I am talking as someone who after 4 years and and a recent new GCA diagnosis when I was at 3 mgs for PMR that was dying down symptom-wise, has developed Glaucoma, Cataracts and Steroid Induced Diabetes. So these are the foes your Rheumatologist faces for you. Hence the steroid sparer moot, ( Methotrexate) that can speed things along for a proportion of patients. Tapering in tiny, well spaced steps is recommended for the recovery of your Adrenal function at this stage. Maybe another frank discussion with your Rheumatologist, on the careful management of this stage is required? Good luck! It is a lot of balls to keep in the air. I hope the Spanish weather is giving you a boost.

[Jlml in reply to SheffieldJane]

Hi Sheffield Jane,

Thank you for your help and sorry to hear of your additional conditions. It sometimes seems there is no end to all of this. I will try to taper really slowly and have another frank discussion with the rheumatologist in a months time or so when we speak next.

Please take great care of yourself and it's lovely to know we all have each other for support when we have wobbley times xx

[Jackoh in reply to SheffieldJane]

Loved the King Canute analogy!!

[SnazzyD]

I bet the mood is due to poor adrenal function. 7mg is a neither here not there level due it being still a bit high for the adrenals to wake but edging to too little for the body’s needs, depending on how much you absorb. I found any stress at all was too much, and by stress I mean a trip out for a coffee (ooh remember those?) or some annoyance. 5pm was my worst time with jitters and crying. I do wonder if the stress on the body can cause a flare. It was enough to trigger another hair falling out session and it felt like a summer on another planet. I introduced the new dose at 0.5mg a time gradually over 6-8 weeks down to 5mg during which I still found life a trial, oh the fatigue and moodiness. After 5mg things improved and by 3mg better still, but 7-5 was the hardest hump. I felt I had to get through it but at snail’s pace.

I don’t think I could have coped with your regime of jumping by 1mg or more once I got below 8mg. Perhaps before throwing in the towel and going to a steroid sparer, try a reeaaally slow taper first.

[Jlml in reply to SnazzyD]

Thank you SnazzyD. Sometimes it all gets too much doesn't it? The low mood was really worrying me but perhaps by trying a slower reduction it will help.

Take care and all the best for your recovery.

[Hindags]

I’d hang out at 7 for a few more days and then use a DSNS method to get back to 6 . See ( steroidtaper.azurewebsites.net) . I found printing it out very useful. There are 26, 38 , and 52 day plans. Take it slowly. Your HPA has to come back online. You may have more residue of inflammation than you thought. If you use the 38 day plan you will be at six in 38 days ready to reduce to 5.5 or 5....depending on how you feel.

[Jlml in reply to Hindags]

Hi Hindags,

Thank you for your support. I will take a look at the link you have suggested. X

[PMRpro Ambassador]

If you have your usual PMR symptoms then it is most likely to be a flare because youhave tried to go to too low a dose. You are not reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did.

It may work if you reduce more slowly and in smaller steps - here is an explanation:

healthunlocked.com/pmrgcauk...

Having reached a physiological dose - similar to the amount the body makes naturally in the form of cortisol and which is essential to life - I personally think it is silly at this stage to add in methotrexate, which DOESN'T guarantee getting to a lower dose and for many introduces adverse effects of its own. Were you stuck at above 10mg I would say have a go - but at well below 10mg, no.

[Jlml in reply to PMRpro]

Hi PMRpro,

Your advice is always appreciated. I have printed off the slow taper you have suggested and will give it a go. I really don't want to start on another medication to add to the mix. X

[birdwatcher in reply to Jlml]

Hi Jlml, I was going to tell you about my experience from back in 2016-2018, then recommend that you seek out PMRPRO, but I’m glad from your reply’s that you found her. Everybody on here was amazing, but I have to tell you that she helped me no end with her advice. I really tapered off the pred slowly, and like you, when I got down to about 2 mg I had a worrying flare that seemed to knock me back. I, like you, got discouraged and fed up, but I took the guy’s & gals advice on here upped the pred, stayed on it until I felt really comfortable about reducing oh so slowly. It did the trick. After two years I was off the pred and never looked back. Incidentally it took me another two years to get off of The Lanzoprosil They had put me on to Supposedly, protect my stomach. I know I have been fortunate to get over my condition, that was diagnosed as PMR. Just one thing, are your vitamin D levels ok. I would strongly recommend a supplement if your in any doubt. A couple of things I remember from the time of the onset of my condition. 1. I was recovering from a really prolonged virus that affected me for months, lost my sense of smell and taste for weeks . 2. When I had the blood test that confirmed the inflammation in body, they also told me that my vit D was really low. They put me on a high dose supplement. Just saying! I am fully recovered and feeling really well at the moment. So don’t give up hope. Best advice I can give you is stay close to PMRPRO. Good luck & God Bless.

[Louisa1840 in reply to birdwatcher]

Agree. PMR Pro is the REAL DEAL!!!!

[Jlml]

Thank you so much for all your advice, this site is a real lifeline 😘.

Do we think that the physical symptoms are due to the disease, so at 5.5 mg it's not enough to keep the disease at bay but also the mental side at 5.5 is due to side effects and adrenal function which is something I will have to work through at some point?

I had a blood test a few weeks ago and everything was ok except for Erythrocyte sedimentation rate 27 (0.00-20.00) and percentage hypochromic cells 6%. (0.00-2.50%)

[PMRpro Ambassador in reply to Jlml]

What was the ESR the previous time and at what dose was that? That ESR may be OK if it is stable. But if it is above what it has been at higher doses of pred it is a warning you MAY be pushing it with the dose and the inflammation is lurking. I'm not saying increase the dose yet - but the ESR needs to be checked again before you reduce to be sure it isn't on a rising trend. All sorts of things can raise it, not just PMR, so it could be something else. But ...

[Jlml in reply to PMRpro]

Hi PMRpro,

The rheumatologist said it was similar to the last one which was in Jan.?

[Jlml in reply to PMRpro]

Sorry, I would have been on 9 mg at that point.

[PMRpro Ambassador in reply to Jlml]

I wonder what similar means ... If you were well on 9mg it sounds as if that may be your personal normal sort of level.

[kulina]

I tried three times to reduce from 7 mg and even with the slow taper recommended here, it was impossible. It felt like I would never be able to reduce but in time I did and now I'm at 4 mg. I could only reduce by .25 mg. at a time, never a larger dose, and with the slow taper you can imagine how long it took to reduce from 7 mg. I think it's normal so don't get discouraged.

[Jlml in reply to kulina]

Thank you everyone for all your support and advice. I am going to start on the very slow reduction set out by PMRpro and I will let you know how I am getting on. Stay well everybody xxxxx