New to Prednisolone-information please

[SALI]

Biology withdrawn after two primary cancer diagnosis in last two years. Review only considered if 5 years cancer free. Body racked from 3 cancer surgeries and RA out of control. Trialing Prednisolone as options severely limited. Methotrexate did not work alone ir in combination.

Consultant advised risks of steroid use less than developing cancer for a third time.

4 months in now and sleep pattern wrecked, weight gain added to other meds effects.

Is there anything I can do to help myself. Due to stop after reaching 2.5mg target. Short term and long term effects? As I don't know where I go from there.

Thanks lovely community xx

[Runrig01]

Steroids are known as the devils tic tacs. Unfortunately I developed severe adrenal insufficiency from long term steroids. It was picked up when i had a severe stroke from an adrenal crisis. I now wake up with the feeling of having critical flat batteries, and takes 2hrs before I can feel normal and get up and about. I also have to carry an emergency injection, which myself and family are trained to use. Daunting for hubby at first as it long intramuscular needles, and I need it when I’m vomiting or diarrhoea, or injured.

They also cause skin to thin and bruise easily, cataracts are common, as is the weight gain and potentially developing diabetes or osteoporosis. Sorry it’s doom and gloom, the only positive is they give you energy and reduce your inflammation, but at a cost. I started on them for polymyalgia and GCA, where steroids are the only treatment. Any stress good or bad, now has the potential to make me very unwell, which it has at graduations, and last minute changes to travel home from Norway, both had me needing my injection. So i’m not keen for anyone to use them longterm if there are other options. Even arguing with someone can have me spiralling downhill, with nausea, headache, lightheadedness and blood pressure dropping quickly.

I do hope they are settling things for you in the meantime though. Also sorry to hear about your 2 cancer experiences, which as you say, requires you to be cancer free for 5yr before restarting biologics 🤗

[SALI in reply to Runrig01]

That for info and wishing you well x

[Fruitandnutcase]

Make sure you get a steroid users card from the pharmacy when you collect your prescription, you need to carry it with you I found out I should have had one after I was given the steroids by a pharmacy within the hospital and eventually managed to convince the pharmacist in a local branch of the same company to give me one.

Also watch out - I developed steroid induced T2 diabetes after I had been taking steroids for a little while - I was on a three month ever decreasing course for my inflammatory arthritis. Fortunately I had a blood test for something else a few weeks after I started the steroids so it showed up very early on. No one mentioned that could happen.

[SALI in reply to Fruitandnutcase]

Thanks Fruitandnutcase. I insisted on getting a card from temp pharmacists, even though she said I didn't need one. T2 diabetes has concerned me because of my weight. Already on hormone therapy meds for 5 years to prevent breast cancer coming back. Exercise doesn't shift it. Take care

[cathie in reply to SALI]

You can reduce the chances of developing T2 diabetes through careful diet. Reducing carbs has an incredible effect. Its worth checking this out - a close relative has done so and really reduced her blood sugar levels. Steroids do have an effect of increasing blood sugars so anything you can do to alter that when on pred is really worth it.

[Amnesiac3637]

Oh bless you, that sounds like a bellyful to be going on with and then to have to cope with steroid problems too……….🫣🥲

You haven’t been on the steroids very long by the sound of it so as you reduce the dosage the fluid retention - which is what gives you the main weight - will start to decrease. You haven’t said what dose of pred you're on at the moment so if it’s high then you’ll be much better when you get to 5mgs and below. For some steroids work brilliantly, in others they cause sleep problems, hunger, irritability and weight gain but, in most cases, the inflammation is vastly reduced so it’s a question of weighing up the options.

As above, the short term effects are as you described and long -term can do some considerable damage to bones, skin, eyesight and skin. BUT - you haven’t been on them long term ( years) so you should avoid the problems connected to higher than 10 mgs daily for any length of time.

If it reassures you, I have been on steroids for 34 years at an average dose of 7.5mgs per day ( occasionally increasing to 10 mgs for flares). I never put weight on at that dose and am still 57 kgs as I was all those years ago and I’m 71 yrs old. I have recently developed glaucoma, have osteopaenia and mild steroid myopathy in my quads but very fortunately have never had gastric problems from prednisolone. They’ve been the only constant drug throughout all the very many I’ve had (all the DMards, biologics and now the second JAK) that have kept me on my feet and functioning relatively normally.

So, don’t give up hope for a good result, be in control when you see your doctors so you know exactly what they’re going to do and how best you can be helped, keep in touch with the fantastic community on here who will all support you and stay as positive as poss. Wishing you all the very best!

[SALI in reply to Amnesiac3637]

Thanks. I was doing so well. Been through the trial and error combination of meds and finally lucky enough to get funding for humira/imraldi. Stable. Got my life back. Then cancer turned everything upside down like it does. Wishing you well x

[medway-lady in reply to SALI]

It’s a horrid journey your on, I understand how hard it is as I had an AKI and as put on high dose steriods and the RA meds were all stopped for a long time even though some are used in renal transplants. High dose steriods caused me to gain a couple of stone in weight, the moon face, and it was awful.But the reality is there was no choice and it was a hard road. Although I tried to stay positive and at least the A KI didn’t hurt. I wish I could help more as my husband had cancer last year and it is such a nasty disease it changes lives in ways that RA never can. I had a blue card to carry too. I hope you remain cancer free for all time to come.xx

[SALI in reply to medway-lady]

Thanks for taking the time to reply, and sorry it is difficult journey for you too. I have had counselling to support me, as you say it is difficult to be continually positive. The steroids are helping with the pain. Wishing you well x

[Pooch22]

hi Sali I was diagnosed with cancer 2 months after RA diagnosis. I had to stop all RA meds due to radiotherapy. So hadn’t started any biologics, I didn’t start a biologic until 8 years after the cancer diagnosis, I think it’s a combined decision with you, Oncologist and RA consultant on best/safest treatment options. I suggest you get a review with an endocrinologist as they will check adrenal functions before you come off the steroids etc to check adrenal gland function. Mine put me on alendronic acid for a period of time to protect bones (beware drug has a long after effect you need to be aware of). She also put me on vit D and calcium.

It’s a very difficult time with so much going on with surgery treatments etc….and pain which steroids do assist. I did have to go in as day case for steroid infusions as the pain was unbearable, my RA consultant arranged this and also liaised with oncology which helped us all in decision making, when you have so much going on, and different cancer types have different risks as I am sure you are aware of.

I did have counselling (cancer specialist) as I was a bit overwhelmed which did help but not for everyone but I needed someone to help as I felt I didn’t want to offload to those close to me.

Naproxen and co codamol helped with the pain but cocodamol doesn’t help with tiredness, but helps you sleep but again depends on your needs.

It was quite hard coordinating everything but do use the specialists and their knowledge to help you through.

Wishing you all the best and feel free to contact me if it helps

J

[oldtimer2]

I've been on prednisolone on and off for more years than I care to remember. The only problems I have had with it were when I was on high doses for Polymyalgia Rheumatica and bone marrow failure. (I did have weight gain and problems sleeping then.) I'm usually on a maintenance dose of 5mg but currently (I've developed vasculitis) on 20mg.

I keep close control of food intake to minimise weight gain. I have no sense of 'being full' when I'm on higher doses. I do daily flexibility and strengthening exercises for my muscles and bones and am fortunate to have few problems despite my age of 82. I can remember being told that it was unlikely that I would live past my mid-fifties....

For me it's a trade off - it allows me to live a more or less normal life and has controlled many of my symptoms. To be honest, I never thought that I would reach this age and most of the time I enjoy life and am active in the community. I can garden (not more than an hour at time) walk, do a little circle dancing, give talks to groups, and belong to several social organisations.

You have other health problems and need to keep going. If prednisolone helps you do that, then that's fine. It sounds as if you areabout to try to come off them altogether, though, if you are down to 2.5mg. Is that the intention? What is going to control your symptoms (and inflammation) then? Have a look at the treatment pages on the NRAS website - methotrexate is not the only DMARD. What about the others? Have you been through all of those? I'm on azathioprine - old and cheap, but for me it works.

[Mmrr]

I take quite a different approach to steroid use than many. I've been taking oral prednisolone in varying dosages for over 5 years , due to not being able to find a medication that controls my RA sufficiently.

Also remember that all medications have side effects, some brutally so....MTX would come into this category for me.

Oral prednisolone has given me a quality of life that I would not have had otherwise. During the 5 or so years I've been taking it, I've had 2 grandsons born and have had the physical ability to be involved with them at some level.

Without oral prednisolone the involvement it would not have happened.

As a family we had a holiday to Cornwall and I spent 7 days enjoying the wee boys and my children. Amazing memories were made and few stories to go down in family history. We timed arriving in Lands End at the same time my son arrived in his mammoth cycle from John O'Groats, I saw him cross the finish line. Without oral prednisolone the holiday would not have happened.

I holiday every year up the North of Scotland with my partner. We have fabulous memories of dark sky nights, wildlife, scenery and just being together.

Without oral prednisolone the holidays would not happen.

I moved to a more suitable house for me and bought an automatic car, both of which would not have happened without oral prednisolone. My car gives me freedom and living in a more suitable house makes day to day life so much easier.

I have had meals out, days out , visitors, people that I have visited in abundance over the years. I've had a big birthday and lots of other family celebrations.

Without oral prednisolone, none of the trips out and visits / visitors / celebrations would have happened.

As for weight gain it isn't inevitable. I lost 3 and a half stone whilst taking 20 mgs prednisolone a day....because I regained some mobility and was able to burn calories again.

The downside, I had a stress fracture of my hip 3 months ago and a hip replacement. The surgery and recovery from, being much easier than I anticipated. Much easier than living with unmedicated RA.

Alternatively I could have refused oral prednisolone and sat at home for over 5 years, with none of the experiences above. Most likely depressed and anxious....and my own hip.

I've spoken my steroid use over with my rheumatologist and come to the decision that I prefer to be involved with life, enjoy what I can and accept the risks they bring. Rather than sit at home with no life and take the risks of immobility....DVT, Cardiovascular disease, joint issues through lack of mobility and, and, and...

There are risks in everything you do, or don't do.....don't let the negative views of oral prednisilone take away the possibility of a quality of life that you can enjoy.

I'm still on oral prednisolone after my hip fracture, I had a DEXA scan, my bones are not so bad. I've been unlucky with the fracture. I did accept a IV of Zoledronic Acid to try and minimise risk of further fracture.

You may be lucky and not have any side effects ?

[Jordie20 in reply to Mmrr]

Great post, said beautifully, feel very much the same

[Jordie20]

I am sure there will some posts here about steroids and the negatives, too which they will be spot on and right! But… from a positive perspective I’ve been on low dose pred for 15 years (sometimes higher if a flare) and all sorts of other pain relief, vitamins etc (but I’m mostly allergic or poorly respond to all other arthritis meds including most biologics). So for me, it’s been AMAZING! It has meant I can still be a mum to my teenagers, be mostly present and able to do normal stuff, even occasionally walking the dog or attending conferences. I’ve also been able to study/work from home full time and am about to do a PhD…. Without it…. I wouldn’t even be able to stand up or get dressed or hold my handbag, let alone be to smile, have fun, be a parent or partner. For me somethings I just have to reconcile, but having had many times without pred, and poor response to arthritis meds, I can tell you I would be permanently in hospital or worse. Just my thoughts xx good luck and all the best xx

[SALI in reply to Jordie20]

Thanks for sharing x

[SALI]

Thanks to everyone for information, support and wisdom. I hope to have better understanding and control on this new stage of my RA journey soon. Wishing you all the best 🙏

[Jordie20]

Wishing you all the best too