Help please! Trying to get over a bad flare

[Tiggy70]

My last comfortable steroid dose was 8.5 mg in mid August. Under the instructions of my Rheumatologist I was told to keep reducing down. I did the DSNS method and reduced to 8mg but during the last week of the reduction I started to get aching in my right arm. This got worse over the following week so I contacted the Rheumatology helpline who told me I mustn’t increase the Prednisolone unless my next blood markers were raised. They came back normal. Following their instructions I stuck with the 8mg for a further 5 weeks until last weekend when I was almost back where I started 15 months ago with debilitating pain in both arms and hips. I made the decision to up my steroid dose to 10mg. I have had some improvement over the past 7 days but not the recovery I was hoping for. I was too scared to go above 10mg. I know I can only stay on 10mg for 10 days but I don’t know what to do when the 10 days are up. Should I drop down to 8.5 where I was last comfortable or taper down more slowly to 9.5, 9 and then 8.5. Because I’m doing this against the instructions of my doctors I’m too afraid to ask for their advice.

Your guidance would be much appreciated thank you. I feel very alone and miserable at present.

😕😕

Tiggy70

[PMRpro Ambassador]

You are going to have to because your rheumy doesn't understand all the aspects of PMR - like it takes time for enough inflammation to build up to raise the blood markers which are only surrogate markers. Some people don't get raised markers in a flare when they are taking pred for some time - they can lag behind symptoms for months and that is why symptoms always rule. The 8mg isn't enough, enough inflammation is there to cause symptoms and it just mounts up. You will need more - and you are running the risk of having to start over again from the beginning. It is also often diffucult to get such flares under control again without a considerable increase in dose. And all due to impatience ...

[Tiggy70 in reply to PMRpro]

Thank you. The impatience with the steroid tapering is with the doctors not with me. I understand the bad side effects of steroids but I’m “happy” to take it slow and steady even if it takes much longer to get there. This will be my 4th and by far the worst flare in 15months but they still say reduce.

[PMRpro Ambassador in reply to Tiggy70]

Oh yes - fully get who is being impatient but they have to learn they are doing you a disservice. Have you discussed it with your GP? Sometimes they are a lot more realistic.

[Tiggy70 in reply to PMRpro]

Thank you. I’ll try the Gp but I normally get the response that I’m under the hospital rheumatology dept. and that they have to make the decisions. I’m stuck between a rock and a hard place ☹️

[Viv54 in reply to Tiggy70]

Snap ! pushed back and forth ,this is half the problem !

[Sharitone in reply to Viv54]

Snap pool! It means you don't even know whom to contact if you think your dose needs increasing. And in this area, rheumatology line takes up to two weeks to answer!

[PMRpro Ambassador in reply to Sharitone]

I rang the rheumatology line in the Durham area years ago - they never did get back to me. Would have been all the same if it was urgent ...

[Sharitone in reply to PMRpro]

I actually spoke recently to the person who does the triage. She is an appointments clerk...

[PMRpro Ambassador in reply to Sharitone]

Yeee-ees - and she got which healthcare qualification?

[Tiggy70 in reply to Sharitone]

My Rheumatology helpline do normally respond within 24 hours so I should be thankful for that.

[Sharitone in reply to Tiggy70]

Wonderful! Are houses affordable where you live?🤣

[Viv54 in reply to Sharitone]

I really don't know what's going on atm.! Not everything can be blamed on Covid!

[PMRpro Ambassador in reply to Viv54]

They are are doing a pretty good job of doing so though

[Viv54 in reply to PMRpro]

Exactly😂

[Raewynne in reply to Tiggy70]

Take it slow.Listen to yourself.

[DorsetLady PMRGCAuk volunteer]

You may get a bit more relief over the next few days, and you could probably stay on 10mg for 14 days.... then maybe 9.5mg for another 2 weeks...see how things are then. you can then re-evaluate, but as PMRpro says, if 8mg is too low at the moment its too low.....and sorry to hear your doctors are so narrow minded.

[Tiggy70 in reply to DorsetLady]

Thank you Dorset Lady. I’ll stay on the 10mg for a while and hope that things improve. I’ve just been told today following an X-ray that I have osteoarthritis in my right shoulder joint. This is now in addition to my hips and lower spine. Just something else to add to the mix😩

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

Sorry to hear about shoulder…join the clan!

Theses exercises may help it deteriorating -

versusarthritis.org/about-a...

[Tiggy70 in reply to DorsetLady]

Thank you. I’ve booked marked it and will certainly give them a try x

[Viv54 in reply to Tiggy70]

We sound so similar , i have RA/ OA and hip and spinal problems !! Throw PMR into the mix and it can be really hard to deal with ! Chin up you are not alone 🌷

[Viv54]

I know how you feel this illness can make you feel alone at times .I was in a similar situation to you , going along lowering my dose as told. But what i did not realize was all the time my inflammation was rising !! I had a flare and after seeking advice from here , upped my dose to 10mgs. I had got down to 5.1/2. I was only going to stay at this level for a couple of weeks, but its now been 5 ! I started to reduce to 9.1/2 and by the end of the week was in agony again ! I have a Drs app next week . I will discuss it then with her , and take it from there. Good luck, Best wishes Viv🌷

[Tiggy70]

Hi, yes we do sound like we are in a similar position. I was diagnosed in August 2020. You’ve done well to get to 5.5 and I’m sure you’ll be there again soon. It’s so demoralising when we have to up the pred. It feels like failure but we’ve done nothing wrong. We are just following our doctors guidelines. Good luck with your doctors appointment next week, we will get there🤗

[pmr_nikola]

I am not a doctor, so can't tell you what to do, but I adapted the "protocol" for flares - if it were me I would add 5mg to last "painfree" dose ( maybe 8.5 or 9 for you) and take that dose for a week. Hopefully that will clear up the inflammation for you. Then you can jump back down to 9 or so.

If you have higher dose longer then 10 days then gradual taper is needed to reduce - please keep that in mind.

[Tiggy70 in reply to pmr_nikola]

Thanks for the advice. It’s so hard to know how to approach a flare.

[Nextoneplease]

I am sorry your doctors are putting you in such a difficult position. In my view, they leave you with no alternative to taking some decisions yourself. As 10mg is only partially helpful, I wonder whether going up to 12mg for a couple of days would help? Then drop down to 9 if total of Increased dose is not more than 10 days? Or taper more gently if more than 10 days….basically you need to get the inflammation down before reducing.

Wishing you all the best 😊x

[mgrogers99]

If you aren't following the MDs orders (I am not either..so no judgment!), how do you get the dosages/refills of prednisone you need? I am in the US and am worried about getting enough of the correct tablets.

[Tiggy70 in reply to mgrogers99]

At the moment I have some tablets in reserve as my prescription is slightly over what I need each month. I am prescribed 5mg and 1 mg pills each month. I mix and match these doses to get what I need each day.

[mgrogers99 in reply to Tiggy70]

Thank you. Because I am not following the rheumatologist's orders, I may not get what I need to continue with my plan... I am just going to hope it will work!

[Tiggy70 in reply to mgrogers99]

🤞🤞

[Raewynne]

I don't think increasing by only 1.5mg would be enough to bring your relapse under control.My Dr and Rheumatologist don't know too much about the side effects of reducing etc but fortunately we have this site and I have been through it before.We have some good information on here from specialists. It's your body.It may be best to increase a bit more to get it under control than get worse and be back to the beginning.Try to talk to your Dr though .It's not a rush to get off the stuff.Your health is most important. 😊

[Tiggy70 in reply to Raewynne]

Hi Raewynne, thanks for your feedback. You may be right about the 1.5 increase not being enough. I’ve now been on this dose for 10 days and although I’ve had some improvement not what I was hoping for. To be honest I’m really scared to up the dose even more. I feel like I’m experimenting with my own health using an extremely powerful drug. I have spoken to a helpline nurse who has told me to stay on the 10mg for another 3 weeks then begin a slow taper of .5 mg a month. Just by upping the dose by 1.5 mg has brought back the symptoms of feeling spaced out, weepy and irrational. It’s a minefield isn’t it?

[PMRpro Ambassador in reply to Tiggy70]

You would probably have been better adding 5mg for a few days, that is usually enough and up to 7 days you can drop straight back to the old dose or the dose above without tapering. The result is quicker so the agony less.

[Tiggy70 in reply to PMRpro]

So I’ve basically blown it this time around and I’ll have to stay at 10mg for another 3 weeks then a slow taper. It looks like I’m learning the hard way😩. If it happens again (which I pray it doesn’t) I’ll do the quicker, shorter route. Thanks for your support PMRPro as I know you’re going through a very difficult time.

[HeronNS in reply to Tiggy70]

Actually, someone has suggested adding another 2 mg to your dose, making it 12. Having this year gone through a similar experience, in my case caused by increased disease activity rather than too fast reduction, I recommend seizing the bull by the horns and going to 13 or 14 for perhaps 4 days, then stepping down gradually to a mg above your last good dose where, all else being well, you would stay for a couple or more weeks then start a slow taper again. I learned to my cost that I could not drop directly back down to the desired dose, but had to take between two and four days each at intervening doses to go down. It isn't slow if it works!

[Tiggy70 in reply to HeronNS]

Hi Heron, thanks for your suggestion. I’m really wishing I’d done the 5mg increase 10 days ago. It was my first bad flare, and upping the dose was against the wishes of my doctor and to be frank I was quite scared and still am. If I up my dose to 13mg for 4 days what dose do I take on day 5? Do I drop to 12 for a few days, then 11 etc. thanks Tiggy70

[HeronNS in reply to Tiggy70]

To tell the truth I had to find my own way. First I tried the few days at higher dose then dropped down rapidly, and this had worked a couple of times in the past when I'd flared from reducing too quickly, but the symptoms also were quickly controlled. This year has been a whole other animal and in some ways very like beginning all over again. I give you my experience not so much as an example of the "right" way, but as a possible alternative.

Whatever you do, don't taper until your symptoms are properly controlled again. Doctors may be afraid of pred, but they need to be mindful of the fact that uncontrolled inflammation is worse, and pred used with care is a gift.

[Tiggy70 in reply to HeronNS]

Thank you for your insight. I’m quickly realising that “one size doesn’t fit all” and we have to try to find our own way with this illness. I regret allowing this current flare to go on for 7 weeks against my better judgment. I certainly won’t let that happen in future!

[Raewynne]

Hi TiggyYes it is a minefield.Ive just reduced 12 to 11 and I'm feeling quite tired and my glaucoma is worse.I hope it settles down soon.This drug does not like us reducing.I suffered very bad steroid myalgia in the beginning.I couldn't walk at all.Gradually recovering.I have a scooter so that gets me out and I can feel better.

Hope you can resolve this soon.

[Tiggy70 in reply to Raewynne]

Thank you, I hope you too feel better soon.