Staying on prednisolone

[Chocolateluver]

Hi All, Would just like to know if being on a low dose of prednisolone forever is something that anyone out there is doing? I was on pred for 9 years and was slowly weaned off it, finishing in July 2023. To be honest I have had so much muscle and joint pain since coming off pred it would be a relief to go back on a small dose. I have also had a slight flare up so I think my consultant will be putting me back on it when I see him in February .

[Sharitone]

I believe quite a few peole are on1 or 2mg as a permanent maintenance dose. I have been told I can expect to stay on 3mg, though I haven't go that far yet.

[PMRpro Ambassador]

Put it this way - I have been on pred for well over 14 years and not at very low doses. I am likely to be on 7mg for life even with being on Actemra. I'm fine about it!

[Daffodilia]

Think Dr Dasgupta said 2 mg forever was ok

[Janet57]

I’ve been on Prednisolone since 2013, reducing to 3mg. When I saw the Rheumatologist last he said I might need to stay on it forever. I’m still reducing very very slowly but he said if I can that’s great and if not then that’s ok too. I’m 66. My dexascan results are good too. Minor deterioration in all that time. I count myself very lucky.

[SufferingMike21]

Hi I've been on prednisolone every day for the last 20 year's from 2.5mg to 100mg daily.I'm on 5mg at the moment and told I'll probably be on them permanently.

So we aren't the only ones Mike

[Hulotsholiday]

Haven’t seen a rheumy for some years and currently on 5mg and can’t get lower. Rheumy suggested some time back that I’d probably be on 2mg for life once I got to that level. I tapered to zero after some 6 years ( last year) but all symptoms returned within a couple of months and I had to start again. Don’t like steroid effects, but I’d rather those than the pain and inability to walk/move without them.

[borednow]

Started PMR 2017 and now down to 1mg on alternate days. I intend staying here. No opposition from previous GP and so far no discussion from new GP. I'm keeping very quiet and just carrying on!

[pammy_hyland]

Yes over 12 years now and staying on 4mg for life now xx

[Broseley]

A friend is on 5mg for life. If he tries to go lower, his symptoms return, so his rheumy has told him to stick to 5mg.

[S4ndy]

I have been on 5mg for the last 4 years. My Rheumatologist no longer suggests I try to reduce. My new GP is of the opinion that that dose is likely to be for life. I don't have many side effects except the moon face and the excess weight gain. I am overweight anyway and have gone from a fat pear shape to a fat apple shape. I am not good at sticking to a low carb diet as there are many things I cannot eat due to IBS. I seem to be able to function 9n 5mg and no longer flare like I did when I was constantly trying to reduce.

[AshPen9]

I'm on 5mg Chocolateluver. My rheumy says that I will probably be on Pred for life, and although he would like me to get 'a bit lower', he says that side effects at this level are minimal.

[Twopies]

thank you for this post! My old gp and my new gp said they had never met nor heard of a patient who had pmr for over a year. Their pa’s said the same. I told them I’ve never met anyone who had it less than 5. No response.

[PMRpro Ambassador in reply to Twopies]

Obviously haven't met many patients then!!! What utter tosh ...

Though methinks, if that is their attitude, their patients don't go to them for long and vote with their feet!

[Raven1955]

I am on Year 8 of my diagnosed PMR journey and am currently at the 1 mg level. I still try to reduce but in terms of many months instead of weeks and stop or go back up a little with my dose at the slightest hint of discomfort that I can't readily explain as caused by something else. My 4th rheumy, when I had managed to get to the 3 mg level a few years ago, said he was fine if I had to take 3 mg forever, especially because he felt the potential side effects were so minimal because of the low dose level of the prednisone. I'm amazed at the negative reaction people have when one mentions that he might take prednisone forever if it will help to avoid flare ups. In my opinion, many doctors and others have done an excellent job of portraying prednisone as an awful, evil steroid and of course people love a good horror story so it sticks in their memory. If I need to stay at 1 mg or higher forever, so be it. Quality of life is what it's all about.

[PMRpro Ambassador in reply to Raven1955]

"Quality of life is what it's all about"

Which is what my rheumy says every time I see him. When I said my QOL had been a bit ropey there was an immediate response with a plan to deal with it. He says he has quite a few patients on long term, low dose pred.

[Charlotteab]

I have been on 15 mg of prednisone for 6 months now, after being diagnosed with PMR last summer. Only very recently have I been able to reduce to 14 mg, after several failed attempts at tapering (by too much each time). My doctor thinks I should have been down to 10 mg by the time I see him on Jan 23, but that won't be happening. It's very frustrating. I worry a great deal about staying on this relatively high dose of prednisone long-term, but it's either that or go back to being in debilitating pain and unable to function.

[DorsetLady PMRGCAuk volunteer in reply to Charlotteab]

Your doctor may ‘think’ you should be down to 10mg… but if your PMR won’t let you, it won’t let you..so don’t let him harass you into reducing too quickly again. Assuming it was his plan in the first place.. he’s needs to be aware not everyone can follow the book to the letter..

Best of luck with tapering in future.

[Charlotteab in reply to DorsetLady]

Thanks DorsetLady! My doctor (like most doctors, I assume) is going by the standard textbook tapering schedule, which recommends dropping by 2.5 mg at a time -- from 15 to 12.5 then from 12.5 to 10 over a period of about three months. From what I have read on this forum and another I belong to, this schedule does not work for the majority of people.

[DorsetLady PMRGCAuk volunteer in reply to Charlotteab]

Yes it is standard, and although it works for some [maybe the majority, because if it does, they don’t need our help] but certainly not for everyone.

[PMRpro Ambassador in reply to Charlotteab]

I'd been on that sort of dose and above for 3 or 4 years and hadn't been much under 10 for most of the last 14 years.

[Charlotteab in reply to PMRpro]

Wow -- that's a long time! Have you had any health issues arising from the prolonged prednisone use?

[PMRpro Ambassador in reply to Charlotteab]

Not that we can identify. No significant change in bone density last time I had a dexa after about 11 years and I have not taken a bisphosphonate, just calcium and vit D. No sign of steroid-induced diabetes. I had severe muscle wasting while on methyl pred for about 6 months as well as other nasty adverse effects but the muscle returned when I switched to pred. I have had atrial fibrillation as long as I've had PMR - the autoimmune part probably caused it, certainly wasn't due to pred as I had it long before being put on pred. I gained weight due to relative immobility caused by PMR and comfort eating in the 5 years before diagnosis and then methyl pred later - but after switching to pred and switching to low carb eating I lost a lot of it, 35lbs over 18 months several years ago and I'm now still the same weight I was then.

[Charlotteab in reply to PMRpro]

That's good to know -- I'm glad you haven't had any serious side effects from the pred! I seem to be tolerating it fairly well too, although I won't find out what my blood pressure and blood sugar levels look like until I see the doctor next week. I'm getting bloodwork done today. I'm taking a bisphosphonate medication along with the pred since I already had osteoporosis before I was diagnosed with PMR. Am also taking calcium and vit D and eating a calcium rich diet. I have noticed some weight gain while on the pred, but so far, that's about the only side effect.

[Ceathrua498 in reply to Charlotteab]

I've been on steroids for nine years now, starting at 60mg, after been diagnosed with GCA but was then told I didnt have that. Ive been diagnosed with Stills disease and I'm down to 5mg and have been told by my rheumatologist ill probably be on that for life.When I go lower I have a flare. Dexa scan was good last time.

[PMRpro Ambassador in reply to Ceathrua498]

We have another member with Stills!

Stills - maybe you have things in common!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Think she has moved over to other forums, but hopefully will access this and reply.

[Stills in reply to DorsetLady]

Still here, been off site a bit whilst having lots of scopy pokeys to rule out cancer which they appear to have done. So now I only have Stills to moan about again… and migraines and LS and….. the state of the planet 🤣

[DorsetLady PMRGCAuk volunteer in reply to Stills]

Yes I know you’ve been elsewhere -just call me nosy… good news though… 🌸

[Stills in reply to DorsetLady]

😉 you noses I like to be the center of attention. November 22 I had Covid and flu vac together, first time for the flu as not old enough yet. Within a week I felt quite ill and Stills flared. By Feb 23 I was quite unwell then had three deaths with three months to deal with. My Dad, step Dad who both passed on the same day then 8 weeks later my ex husband. My adult sons were distraught and I think this was the final insult to my system and I actually spoke to a GP albeit a locum.

Bloods showed Ca125 so cancer investigations started and other causes ruled out. Various meds, tests and ER visits followed but symptoms persist as does my joint pain and new joint pain too. All the poking has found nothing but I’m still unwell. As you and PMRpro advise I have only read current medical stuff mainly sourced from HU and it lead me to thyroid issues. Stills is AI and thyroid can be AI - thyroid conditions seem extremely complicated to treat and diagnose properly so I’m not going to pursue it unless things get worse. In the meantime it’s just another level of pain and fatigue in top of Stills. I learned some interesting things along the way :

PPIs can obscure endoscopy results yet they prescribe them first.

Stills can cause raised liver enzymes which is reason they thought cancer.

Stills can affect the workings of the inner ear cause vertigo and migraines.

The hysteroscopy does not rule out ovarian cancer.

Reactive arthritis should be considered.

No one knows about Stills and when they hear AI and rheumatoid they raise eyebrows, reach for anti depressants.

Good friend of mine who is a retired nurse said psychosomatic disorder to me…, so I read up and seems possible.

So now I’m trying to think positive and make it all go away but I’m convinced Stills is involved and wish they would consider that before poking about all over the place. I think I need a low holding dose of steroids, I never had any side effects when I was young from them but guess it’s a whole new ball game at 61, 62, 64….

[DorsetLady PMRGCAuk volunteer in reply to Stills]

Such an awful lot to contend with... so sorry - and no, nothing gets any easier as you get older..

[Stills in reply to PMRpro]

It’s me, I’m still here and still have Stills. I’ll respond to the postee

[PMRpro Ambassador in reply to Stills]

I thought you were!

[Stills in reply to PMRpro]

Stills had such similar symptoms and pain levels to what I read here it’s so useful and comforting

[PMRpro Ambassador in reply to Stills]

As you know - why we're here ...

[Stills in reply to Ceathrua498]

I’m a fellow Stills sufferer. Diagnosed aged 17 in 1979 now 61. Lots of stuff in my bio. Please feel free to ask anything at all. I’ve been steroid free since my mid 20s but never pain free.