Pain !

[Viv54]

Hi everyone my my question is , i am doing DL method of tapering very slowly. It has taken me ages to reduce from 10 mgs Pred down to 7,5 i was going along quite nicely on 7,5 .Almost 10 days went past sympton free and i thought i would just stay there for a while, then out of the blue all the pain came back in all the usual place , i have battled for 3 weeks with it and finally in desperation i upped it to 8. Two days later im just about feeling human again but this time its really taken its toll! Who would have thought the half an mg would make such a difference .I am now wondering how long should i stay on 8 mgs as i dont want to go through that all over again. TIA . Viv🌷

[SheffieldJane]

This is such a tricky stage, it gets me every time. The adrenals add in flare-like symptoms, it is hard to read. We are talking grain reductions almost. Good luck! You’ll get there.

[Viv54 in reply to SheffieldJane]

Thank you ,yes it seems so small but causes so much havoc with your body.It was agony.I'm much more settled atm on 8.That's where I will stay for a while.🌹

[PMRpro Ambassador]

"Who would have thought the half an mg would make such a difference "

I first wrote a post with the same title on another forum probably 10 or 11 years ago! And that was 1/2mg over 2 days!

It is the dripping tap analogy - however slowly the tap drips, the bucket will fill up and overflow eventually. If you are even slightly below the dose that fully mops up the new inflammation caused by the daily batch of inflammatory substances, it will build up slowly until you feel symptoms. It doesn't matter how slowly you taper - nothing will get you below that "lowest effective dose".

You have identified your "lowest effective dose" - 8mg. that is how you do it, find the dose at which the symptoms start to appear - and go up a step. That is why it is so important to stay at a new dose for a few weeks at least before continuing, especially as you get to lower doses. The lower - the slower.

Not bad at all all things considered. I'm not quite clear though - did you reduce in small steps or spread the 2.5mg over a long period?

[Viv54 in reply to PMRpro]

I went from 8mgs reducing to 7.5 over a 3 week period, then bang the pain returned !

[Karendeena in reply to PMRpro]

Hi PMRpro, my Rheumatologist wants me to taper 1mg every 2 months (back on 5 after relapse) awaiting blood tests for ESR and CRP. Can you give me any advice on steadying this as I started pain again when I got to 3mg and gave up at 1mg as felt so much pain in shoulders and weakness in my arms. I have never had any pain in hips etc fingers crossed. I have been on pred now since May 2021 bar a break of 3 months back in September last year. Also, I seem to be suffering real mental health probs, I can't control my anger at times and I can just turn into the devil for no reason, then I get tearful and worry about everyone dying, it's awful and taking over my life. I can't take anti depressant because of the sotalol I am on for Afib 😥

[PMRpro Ambassador in reply to Karendeena]

Obviously you still NEED 3mg to manage the inflammation - and nothing will get you past that until your body and your PMR allows it. May 2021 to now is not long - PMR lasts a lot longer than that for at least half of patients and your doctors need to accept that.

The low pred may be causing the mood problems, Can your doctors not change your a.fib medication? The interaction is not with all antidepressants - there must be something else they could try. These, fluoxetine, paroxetine, duloxetine, or bupropion, do have a severe interaction because of a metabolic effect but are by no means the only drugs available. Talking therapies and CBT may help - no adverse effects there,

[Karendeena in reply to PMRpro]

Hi PMRpro, it's something to do with long QT with Sotalol, apparently there is a load of drugs that cannot be taken with it. My EP favours sotalol, in fact he wanted to increase it again as my afib episodes can last up to 30 hours plus. I really feel like antidepressants but going to try alternative therapies again as there is a lot going on in my life at the moment. - difficult 94 year old mum and relationship problems too. Not sure if the pred is adding to my aggression with these too people or I am just fed up in general, feel so sad 😥

[PMRpro Ambassador in reply to Karendeena]

Um - at a guess it just overload, I was the same with my husband. I could have had help but didn't think I needed it - you know what I mean, I knew I was overwhelmed but ... I did give in after he died and it has been such a help I wish I'd taken it up when it was first suggested a few months before he died at the point I was getting very ratty,

Oh yes - I know what the problem is with beta-blockers and the antidepressants I named, it is an enzyme pathway those types of drugs use. But there must be other groups of antidepressants that DON'T use that enzyme pathway.

Those are very long episodes - I couldn't cope with that! Do you use magnesium supplements? I find they help a lot with a.fib episodes.

[Karendeena in reply to PMRpro]

Yes, my episodes really scare me but my EP still says sit them out unless I feel unwell. My heart rate does go down somewhat after the first 12 hours and I can normally carry on. It's in the night it really bothers me as sometimes it feels like my heart stops and I wake suddenly. I have tried magnesium once but it made me feel sick and upset my stomach once. I might aske my EP though and give it another go. Thanks.

I have asked to see him before my next appointment in March 2023 but even in an emergency as a private patient for consultation only his secretary tells me t the earliest I can see him is February 2023. He's very much in demand as a top EP involved in new treatments worldwide and teaches also

[PMRpro Ambassador in reply to Karendeena]

Here the hospital uses small sachets of magnesium pidolate (a French and Italian delicacy) - if the alarm goes off while you are a patient a nurse appears a few mins later with a dose! If I get one as soon as an episode starts it usually stops fairly soon. They rarely last more than a couple of hours anyway. But I feel unwell enough to not even want to cook an evening meal - and they are very inconveniently timed!

[DorsetLady PMRGCAuk volunteer]

I would be staying at 8mg for a while longer…. You are at a tricky level as SheffieldJane says -and winter always make tapering more difficult..so hold fire until you really feel a lot better….

[Viv54 in reply to DorsetLady]

Thanks, I will can't face that pain again.🌹

[autumnlass in reply to Viv54]

I know exactly where you’re coming from!!! I’ve had the dragon bite me at that level of 8 mg twice now too!! Won’t let me go lower! 🌷

[Viv54 in reply to autumnlass]

Thanks for your reply ,a dragon it certainly is, im just staying at 8 for now, cant face going any lower atm! 🌷

[autumnlass in reply to Viv54]

I managed to 7.5 mg last August and then WHAM in middle of September around the time of the flu shot and Covid Autumn Booster - it bit me the biggest bite of them all! Was moribund for October flaring and fatigue. Rheumy stepped in and put me on MTX 10 mg with 15 of Pred. Four weeks in and taking Folic Acid as well - the dragon has gone virtually, and no side effects so far with the MTX. Had 2 tiny mini flares and a bit of weariness and can’t do as much. The mini flares pitch up shortly before I take the next dose of MTX. Hopefully I’ll get down with the Pred … wishing you all the best - keep the dragons away, they’re horrid. 🌈🌷🌺

[Viv54 in reply to autumnlass]

Thank you so much, sadly I'm allergic to MTX, it made me so ill on top of everything else !.So it's back to 8 and staying there for quite some time 😊

[autumnlass in reply to Viv54]

Im sorry that the MTX made you feel wretched. I was absolutely dreading the MTX. My daughter took it for her RA and went into remission until last February, when it flared again. Now she takes Hydroxychloroquine and she’s okay. She was fine with MTX. Im surprised that I haven’t had any side effects, perhaps the folic acid helps. Also I’m surprised that it’s working so quickly too. Only 4 weeks.

I’m sure you’ll come down successfully. Like you I tried 2- 3 times and GP said he was referring me to Rheumy. When I collected the MTX prescription the pharmacist saw the fear in my face and said ‘ for some it’s been a miracle drug’…. I was rather cynical but so far so good. We’ll all overcome! 🌷🌷🌈

[Viv54 in reply to autumnlass]

Brilliant that it's helping you good luck on your journey. Fingers crossed I get there. Slowly but surely🌹

[autumnlass in reply to Viv54]

Hoping both our journeys are successful! Thank you. 🌺

[Zozoi]

hello, I ve been on 6mg for 6months now, dropping 1/2mg usin DL methods from 10mg. I was at 5mg before my Covid booster in dec 2021 but it provoked a flare up, then was hit by Covid in March and since then stuck on 6mg. Reading DL response reminded me that winter in more difficult to tapper, I may just resign myself and stay on 6mg till spring as I ve not managed to stabilise at even 5.5mg despite several attempts. Now onto my 4th year of GCA, having started at 60mg in Nov 2028, I ve learnt it is not worth the moral knock back you feel everytime the Dragon bites back, nor it is worth the time it takes to stabilise. 6mg it is. I ll attempt the 5.5 in March.

[Viv54]

Hi yes I agree I struggled for over 3 weeks on 7,5 but I Could not tolerate the pain any longer.So back to 8 and staying there, for quite a while.🌹

[MiniSpec]

When my GP told me to reduce my Pred from 4mg to 3mg I pointed out to him that I've had GCA twice because of reducing the dosage. I started on 15mg of Prednisolone per day 13 years ago, and the first time I got GCA was when I reduced from 11mg to 10mg, and the second time was 2 years later, after I'd got down from the 60mg per day I had to take to overcome the first bout. When I reduced from 10mg to 9mg the GCA flared up again and I had to go up to 50mg per day. Doh!

Many years later I'm now down to 4mg and don't want to get GCA again, so I told him I'll happily reduce the dosage, but at a very slow rate, as it's the percentage of change that causes the problem, i.e. 11 - 10 is a 9% reduction, 10 - 9 is a 10% reduction, but 4 -3 is a 25% reduction, so to your body the difference is much more pronounced than at higher dosages.

This seems to be what causes the problem. If only they made Prednisolone in 0.1mg tablets as well as 1mg and 5mg, we could safely reduce the dosage 0.1mg at a time, and not provoke our adrenals into overreacting.

[PMRpro Ambassador in reply to MiniSpec]

It is unlikely to be the change in dose that causes GCA - the GCA was still there but the inflammation was being controlled by the higher dose, the lower dose was not enough and the inflammation built up far enough to cause symptoms again. People manage to cut and get 1/4 tablets, 0.25mg, and by using one of the slowed tapers you can make the change in dose very gradual. Producing such low dose tablets would be very expensive.

[lalar]

I am glad I read this today. I started at 8 mg three weeks ago and doing the DL slow taper but got my booster and felt awful so quickly went off taper and still at 8mg. My rheumatologist also had my CRP checked about two weeks and it went way up. It is almost as high as it was a year and a half ago when I went on the prednisone.

[PMRpro Ambassador in reply to lalar]

Was that after the booster? That can raise the CRP too.