Still struggling!!

[Tiggy70]

I’ve been back from my USA trip to visit family for 10 days now and I’m still struggling with aching in my hips and shoulders. I think I had a virus infection whilst I was away. I had a constant tension headache around my temples and behind my ears with extreme fatigue. I was terrified that I was developing GCA whilst away from home. I rang my Rheumatology nurse helpline in the UK. Fortunately the headaches subsided before I flew home. I’ve had ESR and CRP blood tests since my return to England which are in the normal range. My normal dose of Pred was 8.5 mg but I took 13 mg Pred for 11 days followed by 2 days at 11mg and have been on 10 mg since 28 December. My Rheumy will only allow me to stay on 10mg Pred for another 5 days then he wants me to start reducing by 0.5 mg Pred every 4 weeks. He’s also pushing me to try Methotrexate or Azathioprine.

I have plenty of Prednisolone to increase the dose again but don’t feel comfortable going against my Rheumatologist’s instructions. For the past two days I felt was improving but quickly after waking the aching is back with a vengeance today. I really don’t know how to proceed as this is new to me as I’ve managed to get previous flares under control quite quickly.

Thanks for your ongoing support.🌸

[PMRpro Ambassador]

For a start I'd say REST and really pace your attempts at exercise. It can take quite a while to recover from viral infections. Are you sure it wasn't THE virus?

[Tiggy70 in reply to PMRpro]

I haven’t been doing much in the way of exercise, just a short walk (half to three quarters of a mile) when the weather is fine and a bit of pottering in the garden (pruning that I didn’t manage to do before Christmas.) I’ve been trying to rest but I’m still suffering jetlag (10 days now) and I’m not getting quality sleep. It does feel like the PMR aching I’ve had in the past. I took two 500 mg paracetamol this morning but it hasn’t touched the pain. What I don’t understand is why after two days this week of feeling a bit better I’ve gone down hill again today ☹️

[PMRpro Ambassador in reply to Tiggy70]

Probably because on the days you felt a bit better you also did more!

[Kaaswinkel72]

yes, you have a dilemma here. Very unpleasant. But…it is your body and your life, you decide what you do or not. That is my opinion.

It is indeed impossible for you to follow your own judgment and please your rheumatologist who’s judgment is entirely different.

I don t know how long you have experienced PMR but most of us are pretty knowledgable and know what is good for us and what not. And also how to nip a flare in fhe butt: usually by increasing the dose of prednison until the flare has settled.

So yes, the choice is up to you….

I can only tell you what I would do: absolutely for sure I would follow my own direction as I have always done and stick with managing the PMR with varying in this case increasing the dose of the prednison until the flare has decided OK it is time to settle down.

At that point I sould decide to decrease the dose again.

Prednison has proven to help, all the other drugs sometimes help sometimes not…I definitely listen to my body and my judgment in this case won t follow the advise from the rheumatologist.

Success….remember the reumatologist is there to assit you, not the other say round.

[Tiggy70]

Thank you so much for your reply. I’ve had PMR for 2 years 5 months. Although taking my reductions very slowly I’ve had a couple of flares along the way but this is by far the worst and I feel I’m heading back to square one! The other flares I did get under control but apart from one they were with the Rheumy’s consent to increase the Pred. My problem at the moment is that if I go it alone I don’t know how much to increase the Pred by and for how long. I’ve already tried an increase from 8.5 to 13 mg for 11 days, dropping to 11 for 2 days, and I’ve now been on 10mg for 17days. I don’t feel 10mg is dealing with the flare. When my PMR was first diagnosed I was put on 15mg and have never during the 2.5 years been higher than that. The last 4.5 months have been extremely stressful for me. Two shoulder surgeries, 2 months of strong antibiotics, plus a Covid booster and a flu jab. I’m considering having one last try getting help from Rheumatology and actually saying that if they don’t help me I will be forced to take matters into my own hands. I’ve got no QOL at the moment. All my aching is in my shoulders and hips, classic PMR and feels all too familiar.

[PMRpro Ambassador in reply to Tiggy70]

I suspect that your experiences of the last few months have set you back to the start - this isn't a flare from overshooting the dose you need, the stresses (all of them) have poked the autoimmune disorder into full life again. You will most likely have to start from the beginning again. But to do that and have enough pred, your doctors are going to have to be brought onside.

[Tiggy70 in reply to PMRpro]

I think I agree with you depressing though it is. My biggest problem will be persuading my Rheumatologist to up the Prednisolone and help me out of this mess ☹️ that’s if I can get an appointment with him. I’m not due a follow up until mid April. I do have quite a stash of 5mg and 1mg Pred accumulated over the past couple of years but I have no idea how much extra I would need and for how long. I could get myself into a worse mess than I’m in at the moment. I’ll phone them tomorrow.

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

Any chance of getting GP on side, although they may defer to Rheumy’s viewpoint of course.

Do agree with PMRpro though, you probably need a complete reboot….unfortunately.

[PMRpro Ambassador in reply to Tiggy70]

And I agree with DL - first stop a come to Jesus discussion with the GP.

[Tiggy70 in reply to PMRpro]

I’ve just realised this morning that I may have been playing Russian Roulette with my steroids which may go some way to explaining how ill I’ve been feeling lately. As I take 8 prescription medications each day I make up my dosette boxes 2-3 weeks in advance. My Prednisolone comes in 1 mg and 5mg blister packs and I use a Sharpie pen to write a 5 on each of the 5 mg pills. I then cut each strip into individual pills and pop them in a pot marked 5mg. To my horror this morning I noticed that at some point in the past few weeks I’d marked up a whole strip of 1’s as 5’s. As I’m currently taking 10mg this means I may have only taken 6 mg some days or even worse 2mg. I thought my method was foolproof but obviously it’s not 😱😱. Why does all uncoated Pred. have to be white? I’m going to have to change the way I do things and be more mindful in future when doing it!

[PMRpro Ambassador in reply to Tiggy70]

Oooops!!!! It might be worth speaking to the pharmacy? They will set up dosette packs for you. Though personally - I'd not go to all that effort. I'd just pop out the appropriate tablet into the dosette box. They don't need to be in the blister pack.

[Tiggy70 in reply to PMRpro]

I thought I was being ultra safe writing a 5 on the 5mg tablet and putting the 1mg straight in the box with no blister around them. I still can’t believe I marked up some 1’s as a 5. It’s made me realise how a momentary lapse in concentration or being distracted can have bad consequences. I’ll be more vigilant in future!

[PMRpro Ambassador in reply to Tiggy70]

It is SO easy to do!!!

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

double oops!...

[Tiggy70 in reply to DorsetLady]

yes …. I hope I haven’t done any permanent damage to myself !

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

Hope not too....😏