prednisone

[Bagpuss2021]

I had a call from my GP surgery yesterday, Doctor has refused to give me prednisone for my flare up until he speaks to rheumatology. Do I call back and speak to another doctor, as I have had the meds before for flare ups, and its never been an issue until now. what should I do?

[Oshgosh]

Do you have access to a rheumatology helpline.if you do,try ringing them.

If you don’t have access,perhaps you could try the consultants secretary.

[Runrig01]

I would probably phone your rheumatology team and speak with them. They may fax through permission for steroids. I ended up with severe adrenal insufficiency from taking steroids, as they atrophied my adrenals. It caused a severe stroke 3yrs ago due to an adrenal crisis, which is when they picked up the issue with my adrenals. I now have to think for my adrenals, and where most people will get a burst of cortisol when exposed to any stress good or bad, I don’t. Just yesterday my husband startled me and I quickly became nauseous, lightheaded, headache, and had to updose my steroids or I would eventually collapse. So i think your GP us wise to seek their advice. Any course longer than 3 weeks, or even a single steroid injection can result in adrenal insufficiency. They also can result in osteoporosis, diabetes, glaucoma etc. they are known as the devils poison for a reason. Are you already using regular nsaids along with your RA meds?

[medway-lady in reply to Runrig01]

So true and yes the devils work. A false sense of wellbeing that can mask the real issue which needs a medication adjustment or change. xx I have CKD so no NSAIDS at all.

[Mmrr]

I would call rheumatology too.

[oldtimer]

You can understand the caution - steroids will make you more susceptible to Covid. I had to wait for the consultant to decide on the balance of risks before increasing my steroids recently.

[AgedCrone]

Prednisolone is a drug to be very aware of…don’t try to get around what your doctor is telling you….over used it can cause very nasty side effects.Call your rheumy nurse to get advice from your rheumatologist.

[Mmrr]

Short term prednisolone should not be feared any more than any other medication.Rheumatoid flares can cause lasting damage too.

[medway-lady in reply to Mmrr]

True also a short term as a fix is a different thing to long term useage. And a b----r to stop using. Never mind the weight gain and moon face etc.

[Mmrr in reply to medway-lady]

I've been on prednisolone for several years, I hate to think what my life would have been like without it. It is the only med so far that has controlled my inflammation effectively and given me at least some life. What might my joints have been like without it ?I've had no side effects, my dexa scan was good. The side effects I've had from hydroxychloroquine, sulphasalazine, mycophenolate mofetil, MTX, Baricitinib and Tocilizumab have far outweighed any side effects from prednisilone, not to mention gabapentin, pregabalin and amytryptaline.

Would I like to be off it...yes...but I'd like not to take leflunomide or toficinitib either !

[Bagpuss2021 in reply to Mmrr]

I don't seem to get on with RA meds at all, bit no issues with prednisone. I know when you take steroids you have to be careful, but I think that's the case with most RA meds.

[medway-lady in reply to Mmrr]

I know what you mean it's about risk management and benefit. I've had injections and high dose for my CKD but luckily never the pills for the RA. Your list of RA meds is long and I've said this before but do wonder if RA is an almost lazy umbrella diagnosis and treated the same for most people but actually the variations mean that its actually several completely separate conditions that mimic one another and need completely different medications as the usual RA meds don't work and are in fact causing more problems. My mum had Oestoporisis it was awful the pain she endured was really nasty and she had several broken vertebra but had never taken steroids so perhaps its down to sheer luck or factors currently unknown. Much like why did I get an AKI from a common medication ? I expect there is a reason but no one knows what it is. x Do you think as well now that because of the Covid risk GP's are being a lot more careful with prescriptions for steroids?

[Mmrr in reply to medway-lady]

Yes, most probably GPs are being more careful with steroids, which is not a bad thing.As for what you say about RA being a catch all term, I had a similiar conversation with the surgeon yesterday, he commented that he thought my present issues are due to inflammation rather than a issue with the surgery. Synovitis was observed in all taset joints on 2 previous MRIs, one on my neck, the other my lumbar spine.

I agree and reported my hot, rheumatic back to my rheumatologist and the physio several weeks ago to be po pooed.

He commented that I don't look like the typical RA patient they operate on for such advanced spinal issues.

Apart from persistent neutropenia, observed even before I began RA meds, my bloods are usually normal in every measure , no inflammatory markers or rheumatoid factor/ CCP antibodies. Yet I can feel so hot, fatigued, stiff and achy.

I just don't fit neatly into the box of RA and kinda wonder, if those of us really struggling to find a med we can work with, don't have RA either.

[medway-lady in reply to Mmrr]

Thats exactly what I've been wondering if an RA consultant came on the site would they be able to see a pattern do you think? It always strikes me that its those with no markers that seem to have very much worse issues, so do they have RA or something else ? I tested positive for RA and pANCA so as far as I was told its an issue with antibodies at a nuclear level. I wasn't really too sure what was being explained as it was so complicated but have so far only had three meds all of which worked well. So MTX which didn't and made my hair fall out in handfuls then LEF again was great but the AKI stopped that even though it wasn't thought to the the LEF but they had to make certain I never took any med again that at the time could have been responsible for the AKI. Then Azathyoprine which was great for a year then was topped up with Etanercept which works too well and is causing me UTI's so now after Christmas its Abatercept. Oddly I use to get IBS but since taking the AZA thats stopped being a problem so a really good side effect. So I'm the exact opposite I do fit the profile and thats what I think may make me easier to treat. Isn't is just weird! It was my Nephrologist who did the pANCA test and gave me a lot more information than the RA consultant did but then again he just seems to have a lot more time for patients. Although the new RA consultant is lovely I think appointments are closer than those in the Renal hospital. RA is truly a disease that is discombobulating !! xx

[Bagpuss2021 in reply to medway-lady]

could be down to covid, I am unfortunately one of those people who can't seem to find anything that works

[Mmrr in reply to Bagpuss2021]

Snap

[allanah]

My GPS will never prescribe steroids, only ever rheumatology for flares as they say its a rhrumy consultant decision . xx good luck sorting it x

[Deeb1764]

My GP ( started 3 years ago)prescribes mine but when I was seen by a locum he would not do it. My regular GP saw me 3 days later and immediately issued it as he could not believe I was being told no by the locum. Yes it can be a devil drug but it also helps when other things dont. So call your RA team and see if they can make sure the GP prescribes when needed

[Bagpuss2021 in reply to Deeb1764]

mine was a Locum that wouldn't prescribe. rheumatology have given me a script now thank goodness.

[jarujuda]

Hi, I would ring rheumatology helpline. Steroids are the only thing that help me if I get a flare 😞 good luck 🤞

[Bagpuss2021 in reply to jarujuda]

Managed to get a script from rheumatology. just don't want to become a frequent caller 😀

[JulieMBrown]

I usually ring the Rheumatology nurse for steroids during a flare up and pick them up from the hospital pharmacy. Where I’ve had to ring the GP when I couldn’t get hold of the nurse, they’ve been really loathe to prescribe them and they have always instructed me to speak to Rheumatology as soon as I am able to ensure the steroids are right for me in the circumstances. Just proceeding with caution I guess but I get the frustration.

[Angels54]

Ring your rhuemy nurse and tell them our in pain , get advice.