Flare up or just Fatigue?

[Motida]

I have tapered to 7.5 mg this month using Dorset Lady's table, but in the last few days I have pains around the hips which is only relieved by sitting down. I wake up around 4.30 a.m. and so have several spells of faitigue/deep sleeps in the early evening.

When I am out I lean against counters or walls if this happens and after 10 mins I am ready to go again. I also have breathlessness which has all been checked out - not heart or lungs - just steroids. The same is with the blurred long sight. I am having a cataract operation next month but was told the blurred vision may persist.

I wonder if I should raise the pred dose by 5 mg for two weeks or soldier on at 7.5mg which has taken a long time to reach? First dose of 15 mg October 2022 .

Would be glad of your advice please. Thank you

For everyone on our Forum, all good wishes for 2024 and thanks for being there. You have all made such a support.

Female 80 UK

[SheffieldJane]

Your sleeping pattern sounds very like mine at the moment, I do sympathise and I also get sweeping fatigue at inconvenient times. The hip pain is concerning and I would get it investigated. It sounds a bit arthritic to me. I hope your cataract operation is a complete success, I have heard really good reports of the improvement it makes. I wouldn’t be inclined to increase your Pred dose until you have had an X Ray and or an MRI scan, in view of the unpleasant breathlessness you experience. I only got relief from mine as my dose decreased. Leaning against a wall or counter sounds quite extreme. I was most bothered in bed at night and used to prop myself on pillows and have a fan blowing in my face. I hope things improve for you soon, you are coping with quite a lot.

[DorsetLady PMRGCAuk volunteer]

I wouldn’t be soldiering on -suggest you treat as a flare initially -and see the result.

It if helps then return to 7.5mg or 8mg and stay there until you have recovered from your cataract replacement. That will then give adrenals a bit more if it’s them as well.

Although you may disagree, there really is no rush…

[Motida in reply to DorsetLady]

Thank you both for prompt advice. I will do as you suggest particularly with the cataract procedure coming up - raise the dose for most of January by whatever it needs to control the inflammation.

The pain is not exactly in the hip joints but around the whole pelvic girdle as if it is not going to hold my body up - a kind of weakness and tightness. . I only lean against things when there is nowhere to sit down. Once seated I am okay. The breathlessness is if I have to walk up inclines, stairs or hurry, so is manageable. I am also overweight now 75 kgs (from 63kg) and only 5' 5" tall and people remark on the moon face, so that does not help breathlessness. The good thing about moon faces is they iron out any wrinkles! A bit like the botox look which some men go in for apparently.

Thank you again.

[random901 in reply to Motida]

Ah yes. That "weakness and tightness" you describe is very familiar! I lean on the work surfaces in the kitchen to take the weight off the pelvic and torso areas. My sight hound does the same thing!

[Orange_2022 in reply to Motida]

I felt the same about the moon face...suddenly no lines! Mine reduced at around 7mg onwards but it had it's pluses! 😁 I lost 3kg by reducing what I ate for lunch (had miso soup which is good for the gut and bones and very low calorie and something else small eg piece of rye bread with marmite eaten slowly!), and cut out all 'treats' for a while.

Hope you feel better in due course...it can be a roller coaster. Good luck!

[PMRpro Ambassador]

It sounds a bit as if you could be developing some trochanteric bursitis in your hips - and that could be due to the PMR not being adequately controlled by the 7.5mg dose. I recognise those symptoms - got the t-shirt!! You might find that a few days of 5mg extra and back to 8mg is enough to make you feel better. Don't soldier on - things are more likely to get worse not better and you will need more pred to get it under control again.

[Satya70]

Guess I tapered too fast from 10 to 8.5 over two months. Seemed slow to me but had a flare up I’m still not recovered from 2 months later. Doing a MUCH slower taper this time. Tired of thinning hair, extra weight, stiff hips and thighs, limited mobility but trying to stay positive.

In the bright side, cataract surgery has had great results!

Good luck with all you’re going through!

[DorsetLady PMRGCAuk volunteer in reply to Satya70]

Good news on cataract.

And you will get lower - but as many have discovered you cannot rush things…PMR has its own timeline - so good luck with that too.

[PMRpro Ambassador in reply to Satya70]

Don't worry - however slowly you taper, you won't get lower than the "lowest effective dose" . The trick is to allow plenty of time at each new dose and be vigilant for any signs of the new dose not being enough so you can go back to the previous good dose without delay.

[Gaycreasey]

However low you manage to go, in stressful times you may always have to increase your pred. I was at 2.5mls (I take liquid pred) and then suddenly I was told I had a lesion in my bowel and would have to have an operation and then chemo. It’s a strange process which we non medical people know very little about. Of course you immediately want the op to get the thing out to stop it spreading. However, at 76 years old there are many other protocols to be gone through and the waiting is the worst thing. I am due to have the op on 12th Jan and am currently keeping myself safe from Covid etc so no celebrations or mixing with others. I’m finding it hard to do anything much because the lesion is causing anaemia so I have very little energy and a lot of dizziness. Small distractions are the best, a short walk along the seafront, a stroll in Sheffield Gardens or even talking to my daughter and granddaughter through the window. It’s like the pandemic all over again. The problem is that if I get Covid I will not be able to have the op for 7 weeks. I now take 5mls per day and that seems to be keeping the pmr flares at bay. Good luck everyone and a happy, healthy new year.

[PMRpro Ambassador in reply to Gaycreasey]

All the best - hope it all goes well.

[Motida in reply to Gaycreasey]

Fingers crossed all goes along safely on 12th Jan for you. Thank you and all our other companions for your comments about the effect of stressful times and PMR. It is so supportive to read the advice and experiences of others when you live alone. It's important for me to remember that millions of us have PMR and GCA, and just sad that there is so little apparent research going on to find a fast cure or ways of preventing it.

Also a pity that pred has so many side effects. Thank goodness for Audible books to listen to though, ready for pred's regular wake up time of around 4 a.m!

Thank you again for all your support and stories.

[PMRpro Ambassador in reply to Motida]

A 4am wake-up call is just as likely to be the PMR as the pred, That is when the daily batch of inflammatory substances is shed in the body and it often wakes me.