Big time flare up so now on 7.5 😱 update

[Margaret1951]

Hi all, as you know I had a big flare up after dropping from 5mg to 4mg as my doctor asked me to, silly me don’t think !

Still on 7.5mg but dropping to 7mg on Monday, fingers crossed for me.

Had a letter off a dr at my surgery who I have never seen since being there, THREATENED ME if I don’t go for a overdue blood test she is taking off my prescription ALL MY STEROIDS !!!! I was fuming and rang surgery to tell them excactly I do NOT like threats off a doctor who I don’t know.

The very kind receptionist has booked a nurse to come to my house and do it as I cannot get up there early in a morning,what with hips and diabetes, I have to also have a fasting one for my lipids. Asked her to get MY DOCTOR to ring me, he did yesterday afternoon and I told him my feelings on this threatening letter.

He was not amused with that doctor ! ( my doctor owns the surgery)

Told me to ignore it and he did a prescription for 100 5mg preds which I need, bless him.

He said if I get anymore problems to contact him anytime, bless him.

I am still cross with that letter, how dare she send me it, perhaps she wants me to end up in A&E !! then my fists would come out fighting !! Anyone else had that problem ?? That’s my moan for today 🤪 have a good weekend x

[SnazzyD]

Well one for sticking up for yourself.

Can I ask, do you introduce the new dose in slowly or do you do it in one jump from old dose to new dose?

[Margaret1951 in reply to SnazzyD]

I upped from 4mg to 5 mg with no luck,in so much pain went straight to 7.5mg,it’s just holding the soreness of my muscles off. Wondering if this cold weather is not helping either plus my bursitis. But definitely not going fast down,may even do a 3rd week on 7.5mg until my blood test is done.

[SnazzyD in reply to Margaret1951]

But when you go down, do you just go from old dose one day and then straight into the new dose for however long? As DL suggests, have you tried 0.5mg but introduce the new dose in slowly rather than a jump on day one?

[Margaret1951 in reply to SnazzyD]

Oh no, very gradual over weeks, I don’t mind how long it takes as long as no more flare up ! God was I miserable with the pain and soreness !!! I could hardly walk !! every word and step started with an F !! Good job I live on my own with my two chihuahuas !!!! 😂

[SnazzyD in reply to Margaret1951]

At what point in the reduction did things kick off again?

[Margaret1951 in reply to SnazzyD]

Think it was 4 days after I dropped the 1mg so quite fast !

[SnazzyD in reply to Margaret1951]

So you dropped down and 4 days after the new dose, it hit? If so, that possibly be withdrawal symptoms. How long did you suffer for before going back up?

[Margaret1951 in reply to SnazzyD]

Dropped from 5mg to 4mg after doctor said to try, then after the 4days of 4mg I had the flare up. I suffered think it was a week after going up to 7.5 mg not 100% now but need to stay on this does till I have blood test results.

[PMRpro Ambassador in reply to Margaret1951]

Yes - but the question is did you go from every day 5mg to every day 4mg overnight? Or did you do it over a few weeks? And didn't have any symptoms until you had got to every day 4mg for 4 days?

[Margaret1951 in reply to PMRpro]

Yes had been on 5mg for weeks then on to 4mg overnight then after 4 days of 4mg that was it !

[PMRpro Ambassador in reply to Margaret1951]

That was a 25% drop in 24 hours - no wonder you ached and some people take a few days to get the sterod withdrawal discomfort.

Next time try it like Snazzy suggests or using this sort of pattern:

healthunlocked.com/pmrgcauk...

[Margaret1951 in reply to PMRpro]

I will do, no rush for me anytime soon, I want some sort of good health over Xmas !

[SnazzyD in reply to Margaret1951]

I’m not surprised you felt bad. Just for comparison, I don’t have PMR, just GCA but I still had to drop by 0.5mg but introducing it as one new dose on week 1, 2 new doses in week 2, 3 new doses (not consecutive) and so on. Once every day was the new dose I sat at that until I felt stable. Took about 12 weeks for doses below 4mg and 6-8 weeks between doses of 10mg and 4mg.

[Margaret1951 in reply to SnazzyD]

I will get there in the end back to my 5mg and hope blood results come back ok !

[SnazzyD in reply to Margaret1951]

👍

[DorsetLady PMRGCAuk volunteer]

Hi,

Totally irresponsible doctor - obviously has no idea that you can’t just stop steroids in case like PMR or GCA. Hopefully senior GP will put her right - in no uncertain terms!

When you drop are you treating as a taper (I,e slowly over a number of weeks) or as as a step down following flare hoping to get back to 5mg quite quickly?

Whatever - may be sensible to only drop 0.5mg a time in future.

[Margaret1951 in reply to DorsetLady]

I have decided to stay on 7.5mg until my blood test, not sure when nurse is coming, I can’t afford to have another flare up as I was crying most of the time as doing so well on 5mg for weeks. Once that is done I will taper by just 0.5mg , and stay like that a few weeks also, at the moment I am getting a lot of headaches but don’t think it’s my GCA ? I have been in remission with that for quite a while now, I think it’s because of all the upset I had with the flare up, and then that horrid doctor !!!! My Doctor will definitely be having words with her !!! He was not impressed when I read the letter, and told me any problems again I am to get in touch with him right away.

Patient and staff nickname him “ marmite “ , but I get on really well with him ( normally I break down and cry when I explain to him ! ) can’t help it 🙁 oh well .... life x

[DorsetLady PMRGCAuk volunteer in reply to Margaret1951]

Slowly does it in future then. As Poopadoop explained - healthunlocked.com/pmrgcauk...

[Margaret1951 in reply to DorsetLady]

Yes certainly, but hooked on jelly now for some reason !

[Hidden in reply to Margaret1951]

Cos it is wibbly wobbly... 😉

[Margaret1951 in reply to Hidden]

😂😂😂 they are jelly cones I buy from a friend who has a Turkish shop. And they are so lovely !! better than eating cakes every day 😱

[Hidden]

What a......

A taper might suit you better as others have implied. The tapers are in the pinned posts.

[Margaret1951]

I think my doctor was just trying to be helpful in his own way lol I should of just done 0.5mg and not told him but I can’t lie to him 😇

[PMRpro Ambassador]

Well done - too many patients would have accepted it and done it. I trust your doctor as senior partner gives the other doctor a lecture! Also that your doctor remembers that 5mg was working well - and the aim to get you to a lower dose has failed miserably because you've needed more to sort it out!

Was it from a doctor - or a pharmacist? It sounds as if they may be doing an audit to remove unnecessary prescriptions that people aren't cancelling.

[Margaret1951 in reply to PMRpro]

I don’t take threats to lightly from a doctor I never see at the surgery, think she is trying to prove herself!! she was not doing that to me... of all people I am the wrong one to mess with me ! Steroids are very important to us all and most of us can’t do without them. This was a doctor at my surgery who sent the letter, as I ordered more 5mg ones. My doctor actually owns the whole surgery and he was not amused by what she wrote in the letter to me, I know for a fact he will have words with her. Yes my doctor now realizes I should not of gone down 1mg but I never blamed him as he is so good to me when I have problems. Never mind back to square one again, and on a go slow with them ( like me lol )

[Tonch]

I also had a similar problem only after about 3 weeks on 4mg from 4.5mg Not sure it was a flare as such, just a very gradual worsening of stiffness I’m now back on 5mg and having decided to stick with that - forever if necessary. Still stiffer than I was when I was originally on 5mg, but I’m not budging until I go into remission. 5mg is safe apparently and I’ve had no side effects after 5 months.

[Margaret1951 in reply to Tonch]

Good that’s what I wanted to stay on ! don’t rush . Be nice if they could give us a cure.... in our dreams !! Wonder if they have tested giving anyone a complete blood transfusion!

[MamaBeagle]

Sorry you've had a flare and the bother - but VERY WELL DONE!!!!

[Margaret1951 in reply to MamaBeagle]

Thank you x

[Koalajane]

I struggled when going from 4.5mg to 4mg. By chance I had an annual PMR review so asked for a blood test to check my ESR. The result was my ESR had gone up to 27 from my usual 13. I only went up to 5mg and that settled the flare, my next ESR result was 16 so am staying on 5mg for a bit longer then will do a very slow taper to 4.5mg

[Margaret1951 in reply to Koalajane]

You did very well ! Hoping my esr is not high or increase again ! I am not going to worry, what will be will be 😇

[SheffieldJane]

I admire your feisty reaction to the ridiculous letter. A blood test is unlikely to tell them much about your need for Prednisalone and coming off steroids suddenly could cause a dangerous Adrenal crisis. Does he want a medical lawsuit?

Thank goodness for your own rational doctor and your own strength of character. 👏👏👏👏👏

[Margaret1951 in reply to SheffieldJane]

Yes I would of seen a medical solicitor and would of sued them no doubt about that !

[yogabonnie]

BRAVO YOU!!!

[Noosat]

Please take a deep breath and smile/meditate. It may feel temporarily good to get angry, but that anger is not good for your body. Tell yourself it is over and done with, resolved.

[Margaret1951 in reply to Noosat]

Easier said than done, can’t get any of my normal tablets now that I ordered !! Evidently a review is due by a PHARMACIST at the surgery, wow God help them tomorrow as I am going in the morning !! No , anger does not help my health but will certainly make me feel better after !

[Jackoh]

That’s awful Margaret! Good that you were able to contact your own GP and he has reversed all decisions previously made. It is stressful though when you get some GPs acting this way. I would like to see something written on my notes about this and your own GPs actions and recommendations so it never happens again( just in case he moves etc) x

[Margaret1951 in reply to Jackoh]

My own doctor won’t move thank goodness !! I shall feel sorry for whoever I see tomorrow ( read above noosat ) what is this country coming to !! Grrrrrr