Flare

[Smokygirl]

Help please my wonderful knowledgeable friends.

After reducing successfully to 3.5 mg over three and a half years , I stayed at that dose for three months very happily. I then started my usual DSNS to reach 3 mg. All went well until I actually reached my goal of 3 mg then within three days all the pain came back with a vengeance.

So, I raised my dose to 8 mg for seven days. It took five days to work.

Yesterday, the eighth day, I dropped to 6mg and this morning I have pain in my biceps, shoulders and across my lower back. Should I go back to 8mg for a few more days and then try reducing again, perhaps in 1mg degrees?

I am very anxious at the moment about my hubby who is waiting for an atrial valve replacement —- he is 89 bless him. Perhaps this is causing my problem!

So grateful as usual for your knowledgeable advice.

Sending love and thanks to you all! Xxx

[DorsetLady PMRGCAuk volunteer]

Hi

Stress about your hubby (hope all goes well for him) -certainly won’t be helping.

I would return to 8mg for another week (14 days is okay before it impacts on returning to previous dose) -then try 6mg as you have this time -hopefully provided it works this time you can then drop again to 4mg -but stay at 6mg for at least a week.

Good luck

[Smokygirl in reply to DorsetLady]

Oh thank you so so much dear DL —- I shall do that. Xxxx

[Bridge31]

So, so sorry my friend. Exactly the same happened to me at 3.5. As you know I’ve been on 5 for months now. Started last week to try for 4.5 over 7 weeks.

Thinking of you and all fingers crossed for the valve operation.

Xxx

[Smokygirl in reply to Bridge31]

Hi my dear friend! OH’s procedure is not even booked yet as his specialist wants a second opinion because he is 89, so I guess we have months of anxiety before it happens 😟. As for me, well, I guess I’m following in your footsteps! It’s a bugger!! Sending lots of love xxxxx

[PMRpro Ambassador]

Stress definitely pokes at PMR - I needed far more when OH was ill. Have you been doing things you don't normally? Lifting, bending and so on ...

[Smokygirl in reply to PMRpro]

Actually my dear Guru, you are right—- we had a bad central heating radiator leak over Easter weekend—- black water all over the carpet in hubby’s study and that meant a lot of lifting of furniture and trying to bend—- which neither of us can do! If it wasn’t so damn painful it would be hysterically funny!

Anyway the engineer came yesterday and mended it and I shall wait until Monday when our weekly help comes in and let her try to clean the carpet.

I think you are clairvoyant my dear PMRpro!! xxx

[PMRpro Ambassador in reply to Smokygirl]

Unfortunately not - but for me, such stories come with a high index of suspicion after all these years

[Suet3942]

hi Smokygirl I’ve had the same problem. I successfully reduced to 3.5mg and then 2 weeks ago my husband passed out during the night and I had to call an ambulance which luckily arrived within 10 minutes. Fainted again and vomited while the paramedics were here and long story short he had a stomach bleed caused by anticoagulant meds which should have been monitored but weren’t. He was in hospital for 6 days. On a corridor for hours and then was vomiting and fainting and rushed into resus. I was so stressed. Not only have you got to worry about how Ill they are but also the bed and doctor situation. So all of a sudden my successful taper wasn’t successful any more and I’ve had to increase the pred for a while. He’s out of hospital now but we don’t know if he’s damaged the vp shunt so waiting to see the surgeon and he’s also got an abscess on his gum. Poor man has been through the mill. Onwards and upwards.

[PMRpro Ambassador in reply to Suet3942]

Sorry to hear that - been there, done that. The trouble is, the new generation direct-acting anticoags aren't monitored which is their USP and too many physicians are oblivious of the potential problems, especially as they don't read the small print about mixing them with other drugs which will result in raising the blood level. My husband ended up with his blood level being TEN times what it should have been, When he had a massive bleed the surgeons caught it and the head of the lab and I did some testing on my anticoag levels. It had to be taken 1-2 hours away from another drug or MY level was far too high too. I also needed a lower dose. I had specifically chosen mine as it had an antidote - the only one at the time. And OH insisted on going back to warfarin and bought his own device for checking INR.

Hugs to you - look after yourself too.

[Suet3942 in reply to PMRpro]

they’ve taken him off that particular drug thank goodness.

[Smokygirl in reply to PMRpro]

Oh heavens—- it’s all so frightening. You are so right they don’t read the small print or even communicate with each other! Xxx

[Smokygirl in reply to Suet3942]

Ohhh dear girl! How horrible for you both—- I really hope he improves quickly—- it’s such a worry isn’t it? Sending love xxxx

[Suet3942]

thank you

[Merryfield in reply to Suet3942]

An insane amount of stress. Congrats on getting through it❤️