Backward steps

[Kingscorer]

Further to my post about too rapid reduction of prednisolone dose I eventually managed to speak to doctor and told to increase to 12.5mg for three weeks. Have now taken five larger daily doses but still painful and difficult getting started in the morning. Sleep very strange with vivid dreams. Bad news yesterday about a malignant diagnosis for a friend’s husband has made me feel very depressed. Is it usual to take so much longer to improve than when starting on steroids when response was very quick?

[PMRpro Ambassador]

It does seem to happen to quite a few - and is one reason why we warn people to try to avoid getting into a yoyo pattern with pred dose. If you have really flared - we think you would need more than just 12.5mg to get a quick result, so I think you just have to be patient and treat yourself as a poorly person to see if it improves. There is also the possibility that the underlying cause of the PMR has increased in activity or the PMR is a forerunner of LVV or GCA. Keep a note of dose/symptoms/changes for a while, it might be useful.

[Kingscorer in reply to PMRpro]

Thank you for your advice, much appreciated.

[Gala123 in reply to PMRpro]

How do you check if it is LVV acting out with worsening of PMR symptoms? This is what I keep worrying about.

[DorsetLady PMRGCAuk volunteer in reply to Gala123]

What exactly do you mean. A bit more info might help us to help you..such as when diagnosed - and both LVV and PMR at same time? What dose started on? What dose now? What particular issues have you had?

Have you seen this links-

healthunlocked.com/pmrgcauk...

[Gala123 in reply to DorsetLady]

I am responding to the comment by PMRpro above where they say that PMR flare can be linked to LVV activating. I was diagnosed initially with inflammatory arthritis but the after a PET/CT it turned out I have PMR and ‘mild’ LVV. Because I had started treatment for IA at that point I was already on methotrexate and had had am intramuscular depo-medrone injection and then a week worth of prednisolone 30 mg. After that there was a period of no steroids at all, just methotrexate. When PET-CT results came in, I was still living with uncontrolled inflammation with multiple systemic symptoms besides PMR pain and very high CRP of 194 plus anemia. I was the given another depo-medrone injection and placed on 5 mg prednisolone plus continued with methotrexate 20 mg. That was last March. I improved considerably, normal CRP, no anemia, no systemic symptoms. Just mild shoulder and knee issues. I was happy with this, my rheumatologist wants me to taper off pred. I am now on 3.5 mg and also started alendronic acid due to osteoporosis. However, and it may be a side effect of AA, I started noticing worsening of my PMR symptoms, rib cage pain and knee stiffness getting worse. I am worried that my LVV was not addressed enough and might be flaring, too. But how do I know, unless it get to the initial full blown stage which I don’t want to happen.

[DorsetLady PMRGCAuk volunteer in reply to Gala123]

Okay.. you do have lot going on. Mild shoulder and knee issues certainly sound PMRish…but if that was diagnosed ‘last March’ and you were only prescribed 5mg [alongside existing MTX] why is Rheumy urging you to get off Pred. PMR usually lasts a lot longer that 12 months… even the much touted ‘2 years’ is extremely optimistic. If your knees are feeling in worse, then would say 3.5mg is too low.

Not sure about rib pain, is that something new or have you had it before ? The most usual cause of rib cage pain encountered on this forum seems to be Costochondritis.

AA side effects do include bone pain [so my be that] and reflux..

Not sure there is such a thing as ‘mild’ LVV….😊

I had Cranial GCA, but there a few on here with LVV, including Sophiestree and Rugger to name but two, so I might be worth raising a new post asking for their opinions, not many are likely to see your comments tucked away in another thread…

[Gala123 in reply to DorsetLady]

Thank you for your thoughts. Yes, I thought about raising a new post.

[DorsetLady PMRGCAuk volunteer in reply to Gala123]

Please do, then everyone will be notified, and you will get responses from those with LVV..

[PMRpro Ambassador in reply to Gala123]

I think you are right to be worried - and I also think your rheumy sounds a bit blasee. Your pred dose should be enough to keep your symptoms at bay, and it isn't. MTX obviously wasn't doing much and to be honest I'm surprised such a low dose of pred was used, even with the depomedrone, but it wears off after about a month or so at best. Neither PMR or LVV disappear quickly in our experience as both Rugger and others will tell you, nor do I think MTX alone will cut the mustard.

Best to raise a new post as suggested and get the people who have had it involved.

[DorsetLady PMRGCAuk volunteer]

For record I agree with PMRpro.

When we usually suggest using the flare protocol [adding 5mg to last dose you were okay] assuming you were okay at 10mg that would be 15mg rather 12.5mg - so it might take longer to get flare under control. We also suggest you can stay up to 14 days at increased dose.

See you have been advised to stay at12.5mg for 3 weeks… hopefully that will be long enough, and then don’t drop back to 10mg in one go… try 1mg or 1.25mg reduction [if you have 2.5mg tablets that can be cut] for a month.

Plus as mentioned keep a diary of changes etc…

[Kingscorer in reply to DorsetLady]

Thank you, will do.

[Angelsmummy]

Sorry to hear about your friends husband.As for the dreams,stress and Pred will do this,happens to many of us.Really hope the pain settles for you.xx💐😜

[Kingscorer in reply to Angelsmummy]

Thank you for your reply. I suppose as we grow older we have to expect to hear a lot about our friends being unwell but it just seems constant in my group at the moment. Don’t feel I have much to offer in the way of support as I’m under the weather myself. Very kind of you to reply, it’s appreciated.

[Angelsmummy in reply to Kingscorer]

Really hope you feel better soon.xx💐💐😜

[PoolePerson]

sorry can’t really help with this. The pain always went if I increased the dosage.

[7Victoria]

hi, you certainly have a lot going on and I’m certainly not an expert, though I’ve been dealing with PMR for 10 years now.

I totally agree with the wise advice provided to you.

In my experience your dose of prednisolone seems too low and for not long enough even with methotrexate.

With your symptoms a higher dose would seem required with a slow managed taper once you’re feeling much better.

I now taper half a mg every 6 weeks but that doesn’t always ‘work’ but I’m at the point where I’m determined not to increase my pred regardless of any further flares as it’s been a long slow road down to 6 mg. 5 mg was once my stable place but haven’t been that low for years and now unfortunately have additional complications from years on prednisolone.