Advice on medication

[jaybee58]

I have been reducing dose of prednisolone but have got to 12.5 and am having a lot of muscle pain, aches and cramps in my legs and feet so once again I am going up to 15mg, this is the second time I have had to increase the dose due to aches and pains returning when on 12.5. Having just spoken to the paramedic at my surgery who has been monitoring my dosage he has written to the rheumatologist to see if they can put me on an alternative to the pred due to the problems I am experiencing in reduction.

Can anyone advise me what alternatives they might suggest and what side effects etc. I should be worried about. I am worried that the side effects might be worse than the ones I am experiencing on the prednisolone, also I want to be ready with any relevant questions once they get back to me.

Thank you

[PMRpro Ambassador]

If you have PMR then there is no alternative to corticosteroids. They might suggest adding methotrexate as it seems to improve reduction for some people but it doesn;t work on its own.

However - first of all try reducing more slowly - 1mg at a time. How long have you been on pred? What dose did you start at? When does the pain start - immediately or after a few days on the new dose?

Second, get some magnesium supplements which may help the cramps. The paramedic should check bloods too - calcium, potassium and sodium. They can all get out of kilter on pred and lead to cramp.

[jaybee58 in reply to PMRpro]

I asked about reducing by 1mg and was told they liked to only use 1mg reduction once you get down past 10mg. Hoping the rheumatologist will suggest this when they respond to the letter from my surgery.

Pain starts within a few days of reducing.

Started on 20mg in June 2020 and was totally pain free until I got down to 15mg, I have a few little niggles on 15. The pain at the moment is in my thigh muscles, it feels like I have run a marathon.

[PMRpro Ambassador in reply to jaybee58]

"They" may not like to use 1mg - but experience on the forums has shown that some people can't cope with 2.5mg at a time and top experts in tapering pred say "not more than 10% of the current dose at a time. By 15mg that is already 1.5mg and falling. And it is far preferable to reduce 1mg at a time and not induce withdrawal symptoms that are confused with a flare and so the dose is raised again. It may sound slow - but it isn't slow when it works better,

[jaybee58 in reply to PMRpro]

I had another catch up call from the surgery yesterday, where they suggested I go back up to 20mg if the pain continues just until the rheumatologist responds to their referral. I told them I am reluctant to go all the way back up to 20mg and will try to stay on 15 mg as long as the pain is bearable and I can continue to work etc. Because they foresee a longer time on the steroids they wanted me to start on something to protect my bones which I am very reluctant to do, my bone scan showed no problems at the moment when I had it done a few months ago. I haven't been on the steroids for 6 months yet and could still get down to a lower dose by Christmas if they let me reduce at a slower rate surely. I know this is a long process and 6 months isn't a long time for me to have been on them, is it?

My weight is a problem, I know I should cut out carbs but I am genuinely hungry all the time and nothing stops the hunger but I crave carbs. I lost 8 stone between 2012 and now and have put on probably half a stone but that was down to previous lockdown as well as the steroids, its gone on my stomach and face and moved from my arms and legs I think, thank goodness for face masks they hide the hamster cheeks. I just have to learn to be better with what I eat.

Sorry for the rambling.

[PMRpro Ambassador in reply to jaybee58]

Often you find that switching to low carb helps the hunger cravings even after only a week or so of being really disciplined - it is the swings of blood sugar that causes them the pred makes your liver release sugar from body stores, then lots of insulin to combat that and it overshoots so your blood sugar goes too low and you crave carbs to bring it back up so it becomes like a roller coaster. Trying to remove as much of that s you can really does help.

You definitely need to be on calcium and vit D to protect your bones - that has done me for 11 years of pred, I still have a good dexascan result much to the surprise of the local osteoporosis expert! I took just 4 tablets of the bisphosphonates - they aren't always necessary but you have to be careful with calcium and vit D and keep an eye on the bone density result to be sure you aren't one of the unlucky ones.

[Rosebuddy]

Hi,

I did prednisolone for 5 years with major side effects partway in. I had extremely difficult time titrating down but I have been off it for 1 year 6 months. One of my docs said that I needed to get off it and that it wouldn’t be easy. It was close to impossible but with perseverance and by adding alternative meds for pain from inflammation I have been successful. I still have to manage my pain meds carefully daily but what I am taking has fewer irreversible repercussions and I am getting my life back. I added (2) regular strength Tylenol, Licensed CBDA without use of ANY THC, (1) naproxen of 250 mg, and one baby aspirin. I am not looking back. I have pain but it is manageable and less every month that goes by. I lost 51 pounds, haven’t had an adrenal crisis since going off, lost moon face, hair slowly starting to grow back, can get out of bed without help, and not depressed as I was. Am no longer dizzy. Sodium is no longer low. I am not a doctor so please run everything by your physician because what works for one doesn’t work for all. Eileen told me about dead slow and almost stop. That is what I did. I titrate down at the almost stop pace it was so slow but worth it. PM me if you want and we can exchange notes. I wish you the best. I’ll support whichever way you go as I know how hard it is to do this and want to help anyone with this struggle. Blessings.

[Rosebuddy in reply to Rosebuddy]

I forgot. I take the two Tylenol twice a day. Sorry.

[Jamie751]

Suggest you take note of what PMRPRO says, which is always sound advice based on personal experience. The thing is, that Pred does not cure this autoimmune condition, it only masks the pain and discomfort. It seems that the underlying PMR will improve (or not) on its own. I have learned through my own experience - and advice from others on this Forum - that if you are having problems getting below the level you are at, that is what your body is telling you it needs at the moment. Any reduction needs to be done with kindness to your body. Over ambitious reduction of Pred will often result in yet more pain and discomfort. I have reduced from 40 Pred to 13.5 which is where I am now. So far so good, but I fully expect problems when I get down to 10 and below, we shall see!

[Fran2young]

Hi Jaybee

It really is frustrating and I don’t know why, but it is very common getting past certain milestones. I’m on 3mg now and every time I try to go to 2 and half, I get terrible pains. But I remember the same happening when I tried to get below 7. But maybe it’s just timing as I think it was either the third or fourth attempt at getting below 7 that worked.

So don’t be disheartened. The right time will come along. But I did do the very slow method. One day of new dose & 6 days old dose, then 2 days new dose & 5 days old dose, 3 days new dose& 4 days old dose and so on.

All the best

[Meggsy]

Hello jaybee, I would go with PMRpro’s suggestion of a 1mg taper from 15 to 10mg. It worked for me. From 10 I have been tapering at 0.5mg each time. Presently 3mg. Good luck and all the best!

[jaybee58]

Thank you all for your replies. I am back up on 15mg with pain still in my thigh muscles, just waiting for the rheumatologist to get back to my surgery and hoping they will suggest a 1mg reduction.

[Red1404]

Hi, my mum has had gca and also pmr. She is now 84.Until they dropped her prednisolone to 5mg she cant walk. They then reluctantly Increased it to 7.5mg about 6 months ago but still cannot walk. I am soooooo angry that they just class her as an old woman and I do know that prednisolone is a horrible drug but she has said herself that she would rather have a decreased lifespan rather than this one. We have fought for 2 years to have this increased but to no avail. Please give me some advice. A previous clinician put her on 40mg to test it at first and didn't even recognise her after a day because she was out of bed in hospital and walking up and down stairs. I dont want her back on 40mg but surely it could be increased to a level which brings her back to normality. Even though my mum is 84 she was very fit and walked quicker than me who is 30 years younger! We are in Scotland. If anyone has a private surgery which we could attend that would be gratefully appreciated.