tapering dilemma

[Jantayl]

PMR since Nov 2017 - GCA Feb 2018. Managed to reduce to 4mg Pred beginning May 2020. Symptoms returned - sweating head and shoulders at night and stiffness in legs and hips. Sought your advice and increased to 9mg Pred daily hoping to return to 5mg after a few days. Blood test now shows CRP raised suddenly to 34 - was 0.5 Dec 2019 and 5.7 Mar 2020. How should I progress now? Try going down again to 5mg? Stay at the 9mg (symptoms gone at this level)? Or increase to say 20mg and start the long tapering journey again? I should mention that in the midst of all this I have had a UTI.

Seeking your guidance - thanks

[DorsetLady PMRGCAuk volunteer]

Hi,

I would stay at 9mg as symptoms okay there- no need to go higher if no issues. Increased blood markers may well be due to UTI not GCA/PMR.

I wouldn’t drop back down to 5mg in one go, that might be asking too much.

Suggestion - stay at 9mg one more week to make sure okay, then 7mg for 2 weeks (make sure ok) then 5mg for a month - and then reduce by 0,5mg a time rather than 1mg.

But to be honest both illnesses are still active plus you’re in the ‘adrenal glands need awakening’ zone - so the slower you go the better.

[Jantayl in reply to DorsetLady]

Thanks - I am reluctant to go higher just now. Been at 9mg for 4 days so I could stay at this for another week? I had been doing really slow tapering of 0.5 every 5/6 weeks from 10mg - hitting 4 seemed too far but my bladder retention issue is not helping perhaps and persistent UTI. I got such at shock at the high CRP - at 98 at the beginning but never near this since!

Thanks again - still waiting to find out liver and kidney test results.

[DorsetLady PMRGCAuk volunteer in reply to Jantayl]

Yes - stay at 9mg for a least a week, maybe two.

Hope your UTIs are soon sorted.

[Jantayl in reply to DorsetLady]

I hope so. Interesting that I am being treated at home as if in hospital. Changing times

[SheffieldJane]

The UTI could explain your blood test results. Even the common cold sends them up. Poor you. Did going up to 9 mgs help at all? Oh yes “ symptoms gone” I think I’d try and stay there whilst the UTI is being treated and then taper down and see if that works. I never had to return to the beginning during my 4 years of PMR but I did go down very slowly.

( anyway it all got ruined by GCA, which you really don’t want).

[Jantayl in reply to SheffieldJane]

I do have GCA since Feb 2018 and would not want to go back to those symptoms - been ok on steroids since then. I was at 15mg at Dec 2018 - been going very slowly since I think. Watching and taking advice from others experience on this forum.

Thanks for your help

[PMRpro Ambassador]

Was the CRP taken during/after the UTI? That may have a bearing - but it was creeping up between December and March anyway which suggests whatever dose you were at at the time wasn't quite enough. If it were me I'd stay at 9mg until the CRP is back to the low level you achieved. Then reduce again but slowly, not just drop back to under 5mg straight off.

[Jantayl in reply to PMRpro]

I suspected UTI 15 May - tel advice from GP and given antibiotic - 5 days till Tues 19th - head sweating and shoulder with stiffness in limbs came at same time - sought Forum guidance on 20th - increased to 5mg then9mg on Sat 23 as still feeling unwell and lack of energy. Urine turned cloudy again and tel advice from nurse practitioner on Mon25 May - given another antibiotic but had episode during night of fainting/ breathlessness/ shaking. Tel to 111 and passed to home care team on Tuesday 26 - blood test taken then - result yesterday. Awaiting results of other blood tests. I hope this explains the sequence - sorry it is so long-winded! Seems to be so much happening at the same time........and is it interconnected?!

[PMRpro Ambassador in reply to Jantayl]

What are the suspicions about the fainting/breathlessness.shaking episode? Did they not send a paramedic to check cardiac stuff out?

Do they suspect an upper UTI, i.e. ascending to the kidneys? That would contribute to the high CRP if it was taken during the UTI. A lower UTI infection doesn't significantly raise the CRP.

I find arrythmia/tachycardia problems seem to increase with a flare - and they were associated with the PMR originally

[Jantayl in reply to PMRpro]

Yes I have had ECG - monitoring heart - all has been ok so far. Suggesting kidney scan - would have to go into hospital for this. Blood test taken for ESR? Doctor coming to see me later. Will know more then.

Anyway I am Covid negative! - as I expected as we have been very careful.

Thanks as always

[PMRpro Ambassador in reply to Jantayl]

Unless the ECG (or any other monitoring) was done while you were having the "episode" it might well show nothing - I just described elsewhere what happened to me before they found the arrythmia with alternating tachycardia and bradycardia that was causing my similar episodes. Mine is paroxysmal atrial fibrillation - may last a few minutes or an hour or so and disappear as suddenly as it started! And was probably caused by the autoimmune bit of PMR. I had complained about the dizzy spells, even said it felt as if there was a long pause in heart beats - but because they never saw it, it didn't exist. Luckilu I was at home when it finally got me but I still fell and hit my head. No permanent damage done luckily but think what could have happened if I had been driving????

[Jantayl in reply to PMRpro]

Your experience is really interesting and does sound similar in some ways. doctor has suggested monitoring of heart for 24 hour period. Would have a gadget round my neck? Could still stay at home. I’ll see what is said today but will be more positive if this is suggested again.

I do appreciate your continuing support

[PMRpro Ambassador in reply to Jantayl]

I never got anything from a 24 hour Holter, had had several. I also had a 4 day one but it was a button to be pressed when "it" happened and then it started recording - too late to get anything and not continuous. I was about to request the "closed loop" version - new and not available before - when events overtook it all! That sort is worn for several days and runs a continuous loop with the previous 4 minutes always recorded. When you press the button the stored recording is sent to the computer at the hospital. So it happens and isn't missed.

The "episodes" started as single, barely noticeable events. While I was on methotrexate I noticed them more and over the following 9 months they got steadily more frequent. Was that associated? I'll never know - but I do love my pacemaker!!!!

[Jantayl in reply to PMRpro]

Thanks for info. It’s helpful to know others experiences. The weak feeling and light headed ness seems to relate more to the UTI. I have had the palpatations and rapid heart beat but that came when I was on a high dosage for GCA. It has been ok over the past year or so - time just passes! We’ll see what more blood tests tell me later. The doctor is also going to speak to my rheumatologist (appts had been cancelled). I’ll let you know of any outcomes

[jinasc]

I know this sounds odd, but try this for the UTI - teaspoonful of bicarb with as little water as possible. Repeat 4 hours later..............it works for me and has done for years.

[Smokygirl in reply to jinasc]

Me too! Best tip I was ever given!

[jinasc in reply to Smokygirl]

That came from my Mam and her sisters, then down through daughters.

I think it must be really an old wives tale.

Where did you learn about it?

[Smokygirl in reply to jinasc]

My Mum!!! Maybe it’s a Geordie thing! It really works though.

I always found that the sooner you do it the better and after the four hours you have to drink loads of water.

[jinasc in reply to Smokygirl]

1st sign and out comes the bi-carb.

After I asked you, I started wondering - so I put Bi-carbonate of soda+UTI in the search engines..................I could not begin to tell you how many have put stuff about it.......NHS, BUPA, NCBI for starters and most of them saying OK, just be careful with it........no more than what we said.................

I had never thought about looking it up before.............whew

[Skysey]

Hi Jantayl. I am at the beginning of my journey as was diagnosed with GCA in January 2020 after symptoms began at the end of November 2019. You have done very well to reach your low dose of prednisolone. I am also on Methotrexate as I have had flares when reducing to 30 mgs. I can’t really advise on your situation as not really experienced enough as yet! There are a lot of members on this forum who are experienced and have lots of knowledge on GCA and PMR. I have found their support and advice highly valuable. Glad your symptoms are diminishing and hope you recover well from this recent set back.

[Jantayl in reply to Skysey]

Thank you for your kind thoughts. I seemed to be doing well in my first year to Sept 2018 then had difficulty going from 10 to 9mg - small flare and up to 15mg in Oct which did help. Rheum at the time suggested Methotrexate which I took for month over Christmas/New Year. Did not find this helpful and stopped taking it in January 19. With new Rheum I then started reducing again - very slowly - and was doing well until blood test not taken when due in early March and rheum appt cancelled due to ‘virus’ situation. I think I then have just reduced too much to the 4mg. Anyway I am now on 9mg and advised to stay at this for a month with further blood test to be taken in 2 weeks - so just hoping this works although can never be sure!

[Ullswater]

I agree Jantayl, this site is so helpful. I was diagnosed with GCA Feb 2019, with steroid infusions, biopsies, the lot. I've been tapering down , but since Xmas I have really struggled with the symptoms you mention. Despite Covid, I went for a PET scan and its confirmed PMR, probably started before GCA symptoms.

I had reached 5 mg, but wasn't managing. My consultant suggested 10mg for a week, then taper down 1mg a day back to 5. Yesterday i was at 7mg, but this morning the pains are tearing again. Sticking with 7mg for a few days , but unsure what to do next if things don't settle. The experience that folk have on this site is so helpful . Mentally I have reached the stage of thinking, I'd rather take higher doses than be so restricted by pain in my life. These are precious years.

[PMRpro Ambassador in reply to Ullswater]

Stay at 7mg as long as it is still enough. 5mg was obviously not enough and it is often difficult to tell where the boundary was. QOL is all - and 7mg is a physiological dose, about the same amount of corticosteroid your body makes naturally as cortisol. If you take less pred, your body will just top it up, and most experienced rheumies stop worrying below about 8mg.

[Ullswater in reply to PMRpro]

Thank you !

[kalimche]

Hi Jantayl, you mention "sweating head and shoulders at night" - I get the head sweats at night too (and also a couple of times in the day when I have been out walking in the sun...) Is that a common symptom of the PMR or taking Pred?

[Jantayl in reply to kalimche]

Hi kalimche

For me that was one of the symptoms among the standard others that I experienced before the diagnosis for PMR - which I had not heard of and knew nothing about until I found this site. I just wondered why I could not get out of bed one morning and had to crawl to the bathroom. Fortunately this is behind my now but I am ever aware of returning symptoms of stiffness etc. In saying all this I have still managed to remain active and walk daily - and looking forward to getting back to this.

[kalimche in reply to Jantayl]

Oh god yes - I shudder when I remember back to the pre diagnosis days - the pain in my shoulders and neck and impossibility to get out of bed! I have been tapering down 1 mg every month or so, but was stuck for 1 month at 7.5 because my neck was stiff. It wasn't getting worse - but neither was it getting any better. Anyway I am now on my 4th day dropped to 7 mg and am OK. I think we just have to remember slowly, slowly!! Hope you get your's sorted with your GP.

[PMRpro Ambassador in reply to kalimche]

Yes to both! PMR will lead to sweats, GCA even more so. And for some people pred causes sweats. So either/or or both!!!

[Dubler]

My dr told me when I had a uti it would do no good to do labs because my sed rate would be in the 100+ range. Infections of any kind will raise them.

[Lauren103]

Hi

I began with PMR and GCA in 2017. I have been tapering since then. I have had many setbacks. I have had to begin again at a higher dose. If 9mg worked and your symptoms quieted down - I would try 10 mg and go from there. Go slowly and listen to what your body tells you. I am now at 5 mg daily and it has been a struggle to get here. When I got down to 6 mg I had to cut the 1 mg mg pills into four quarters. Dropping by a half mg at a time was too much. Are you getting any input from your doctor? Now that your markers are rising he/she may have another plan for you to follow.

[Jantayl in reply to Lauren103]

Yes. Also. Rheumatologist suggested staying at 9mg for a month and then to start reducing again - blood test to be arranged for 2 weeks to identify whether this is working. Not feeling so good this morning but this may pass. I’ll just keep it all under review and contact Rheum again for guidance. I am still waiting for other blood test results re urine infection.

Thanks - it does always help to listen to other experiences.