Advice on Prednisolone please

[villalatina]

My GP has put me on 30mg prednisolone reducing by one tablet each week. This is the 2nd time I've been on them but don't remember having such bloating and wind pains before. I have vasculitis and am resisting taking Methotrexate having read all the possible side effects. I'm seeing my rheumatologist on 8th April but feel as if I'm floundering and not in control of this situation. Can anyone offer any advice please?

[SheffieldJane]

What is the strength of the tablet you are reducing by?

[villalatina in reply to SheffieldJane]

I started on 30 mg yesterday but wondered about reducing to 25mg as I've had stomach pains and bloating.

[villalatina in reply to SheffieldJane]

I started on 30 mg yesterday but had quite severe stomach pains, which I still have so I wondered about just taking 25mg today.

[PMRpro Ambassador in reply to villalatina]

Did the doctor also put you on a PPI? Omeprazole or pansoprazole? Or calcium supplements?

[villalatina in reply to PMRpro]

I've been taking omeprazole for many years. I also take sachets of Questran as I have malabsorption of bile salts.

[PMRpro Ambassador in reply to villalatina]

OK - just it is VERY commonly associated with such GI problems when prescribed alongside pred

[DorsetLady PMRGCAuk volunteer]

Hi,

As you have RA you might be better asking this on the Vasculitis forum - linked -

healthunlocked.com/vasculit...

the use of Prednisolone for PMR and GCA as used on this forum is different, so not sure we can give accurate advice.

But, in RA the usual drug is MTX, Prednisolone is not usually used on a long term basis.

However, there are posts on its use - see here if you need info - but for PMR not RA -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

What sort of vasculitis are you taking the pred for? Is it rheumatoid vasculitis?

I assume you are taking 6x5mg tablets to start - but in PMR and GCA which we talk about here you would never reduce like that - it just won't work. But it is being used for you to reduce the inflammation while the RA medication is initiated and adjusted optimally.

If you have RA, I think the side effects of methotrexate - which is the gold standard first line treatment for RA - woud pale into insignificance compared with the potential damage RA and the associated vasculitis could cause if not well managed. RA causes erosion of the joints - and that is what causes the pain and deformity and disability that was so common before methotrexate was introduced as a standard treatment for inflammatory arthritis in the early 1970s.

ncbi.nlm.nih.gov/pmc/articl....

If methotrexate isn't tolerable for you or doesn't work, then they will try the next on the list - until they find the drug that works best for you. But they never start immediately with the biologics - many people use them with no problem too but every drug has potential side effects.

Unfortunately YOU are not in control - the RA is and you need the appropriate management to get any degree of control. In the UK there are fairly strict protocols for management strategies and you must start with the DMARDs for the inflammatory arthritis and work your way through the options. No point taking a sledgehammer to crack a hazelnut so you use the least powerful drugs first.

cedars-sinai.org/health-lib....

[villalatina in reply to PMRpro]

Thank you for your advice. It's all so confusing at the moment.

[Betty_H]

Hi villalatina . I'm on MTX for PMR not RA, but I haven't had any bad side effects since the first week. I was wiped out that week and sure that the MTX was going to be just awful. It's not. At least for me. Good luck getting everything squared away.

[Travs]

I have been on MTX for a while now with zero side effects, well maybe 10 mins of nausea the day after I take it. I started alongside a reducing dose of pred. Managed to get down to 5mg of pred before the PMR returned so a partial success. Got an appt next week to try and sort it out. Im hoping they will put me back on the pred along with another DMARD. Its depressing having to live on tablets but not as depressing as living with PMR.

[villalatina in reply to Travs]

Thank you for your comments. I hate taking new meds and know everyone reacts differently. Ho Hum!!

[90planetree]

Hi Villalatina I have only been on MTX 10mg (starter dose) for 9 weeks but have not had any side effects, except fatigue at first which has now subsided. I am taking it alongside pred for PMR/?inflammatory arthritis. Have f2f with rheumy on Friday. Good luck!

[villalatina in reply to 90planetree]

Thank you so much for your encouraging comments. The truth is I really don't like taking new meds but will have to grow up and get on with it.

[Sharitone]

I had MTX for 8 months, and although it didn't help much, I didn't have bad side effects, either. If you do get side effects, you can stop taking it; it's not like pred where you have to reduce slowly.

[villalatina in reply to Sharitone]

Oh that is really encouraging. Well I'm sure when I see my rheumatologist in April I'll be pursued to start it.

[48er]

Hello I first reported symptoms and was diagnosed with PMR 3 years ago. I was prescribed Prednisolone 30mg. I felt wonderful, normal, me! Immediately I was told by rheumatology consultant to reduce the dosage. 6 months later on 20mgs, the pain, stiffness and exhaustion started to return. My consultant decide to try Methatrexate September 2020. Unfortunately I contracted covid-19 1 December 2020 and stopped Methotrexate restarting end January 2022 for 6 months. Iwas then on 10mgs Prednisolone and feeling terrible. Methotrexate made no difference at all. I forced myself to get down to 7mgs Prednisolone but felt so awful, I went back up to 10mgs. Consultant prescribed Azathioprine, building up from 50mgs to 150mgs over past 4 months and can honestly say I feel worse than ever. He said it should make a difference and hopefully take over from Prednisolone between 3-6 months. I want to give it a chance, so although every day I debate with myself upping the dosage of Prednisolone as its the only medication that has made any difference to my agony (sorry to sound so dramatic!) I have had blood tests regularly and currently every 4 weeks. My consultant says my inflammation level is normal and says he is baffled why I feel so terrible. Gee thanks PMR!

That's my less than encouraging story. Not sure if I've helped at all but good luck 😊

[PMRpro Ambassador in reply to 48er]

"He said it should make a difference and hopefully take over from Prednisolone between 3-6 months"

Only if he got the diagnosis wrong in the first place and it is actually LORA (late onset RA). If all these blasted "steroid sparers" they tout were so good at getting us off pred - why don't they use them in the first place?

[48er in reply to PMRpro]

So what to do? Up the Prednisolone as the only thing to help? I really can hardly move and holding down a full time job is hard going. Oh and I have long covid too just to confuse the issue. Lucky me!

[PMRpro Ambassador in reply to 48er]

If it is PMR then you need the right dose of pred - don't care what he claims about AZA. I know how you feel (not just saying that, I can't move without sacroiliac pain at present), We oldies are amazed at anyone who is able to carry on working at all, never mind full-time.

[48er in reply to PMRpro]

I qualify as an oldie for sure at 73. I wonder if these pred substitutes help anyone? I just want to delay upping the pred dosage so the consultant can't say the improvement is down to the Aza. What is the difference in treatment for LORA and PMR, if the diagnosis is wrong? 1 (or is that 2?) of my problems is I also have osteoarthritis and long covid so symptoms cross over and difficult to differentiate

Thanks for your thoughts

[PMRpro Ambassador in reply to 48er]

Oh well - I'm younger than you and have been retired for a while! I worked with PMR but I was freelance and worked from home, sitting in front of a computer - no commute, easy enough but even it had its hard moments. It was a lot easier after I was offered pred!

Basically the mainstay of management of PMR is pred. In inflammatory arthritis the DMARDs are pivotal - because they do what it says on the tin: Disease Modifying Anti-Rheumatic Drugs. They act on the disease mechanism and reduce the erosive damage done to the lining of the joints - a very fundamental difference in the diseases, it doesn't happen in PMR, but it is what leads to the deformation and disability in RA.That tends to happen late or not at all in LORA and some doctors will still use low to moderate dose pred to manage the symptoms. Moot point I suppose if that is enough.

But although LORA can present looking like PMR, with a polymyalgic onset, you cannot tell between them in the early stages, they have done studies on it. I really doubt AZA will do a lot in PMR - it might help on LORA but it might not.

[Raven1955 in reply to 48er]

Of course it's not the same for everyone but I've had PMR for 5.5 years now and just got my Pred dose down to the 3 mg level while still working full time. I truly feel that without Prednisone there isn't a chance that I'd have been able to keep working. Is it easy? No way!!! It's a constant, CONSTANT balancing act of dosage, rest, gauging your level of physical work versus pain response, level of stress vs how your body responds. Energy vs exhaustion. Every action has a reaction and without paying close attention to cause and effect you will end up in a world of hurt. If I push too hard and physically over do it, the micro tears in the muscles along with the PMR really let me know to back off. The micro tears take longer to heal for a person with PMR. Patience required. PMR is a vicious (expletive deleted) mistress who, as soon as she feels wronged, has no problem kicking your butt out the front door and locking you out until you behave.

Morning, noon and evening I'm "listening" to my body to see if it's starting to grumble. I ignore it at the risk of flaring up - NOT a good trade off. There are many weekends that I need to be a total vegetable, resting so I can heal and stabilize in order to be ready for the upcoming work week. Other workers will doubt you have a problem when you're doing well. Years ago I had a major flare and tried to keep working as I tried to get the flare under control. Since then nobody at work has ever again doubted that I have a chronic problem. They got to see me crumble in 24 hours. Recalling that flare makes it very easy for me to stay focused on the balancing act while at work. I don't want a repeat of those days of hell.

Yes, I'm at 3 mg but that's just a number. It could be 30 mg. What matters is being able to keep the PMR asleep and having a consistantly comfortable quality of life. God bless Prednisone!!!! Bottom line - take what works at the level that works. In my book that's Prednisone/Prednisolone. Best wishes to you.

[villalatina in reply to Raven1955]

Thank you for your reply. Since joining this group I'm feeling less isolated and hearing everyone's stories and how you cope encourages me.

[48er in reply to Raven1955]

A lot for me to relate to in your reply. Too true, bless prednisolone! I'm a survivor, (encephalitis at 5, paralysed and blind for 3 months fully recovered) and won't be beaten, but this has had me break down many times. I feel disabled and elderly before my time. 3 years ago I gardened, danced walked and enjoyed a fabulous physical relationship with my wonderful husband who is 16 years younger than me and so supportive - all gone! After next appointment to review my condition and medication I am upping pred until I feel human again because I know AZA ain't going to work

[PMRpro Ambassador in reply to 48er]

With PMR you should be doing what you want to do and enjoy. Life is too short to not enjoy it - it isn't a practice.

[48er in reply to PMRpro]

Consultant message steroids destroy organs, frightening message! Starting to feel don't care!

[PMRpro Ambassador in reply to 48er]

Oh dear - wonder which of MY organs have been destroyed after 13+ years on pred .. All seem to be working as well as expected.

I think it is appalling when doctors say things like that - it isn't true, it depends a lot on dose for a start.

[48er in reply to PMRpro]

Thank you I'm beginning to abandon faith in his advice, I guess I just wanted to prove him wrong factually. Only 2 weeks to go for appointment with rheumatology nurse on 1 April LOL!

[PMRpro Ambassador in reply to 48er]

They'll probably be better

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Mine too!