can’t tolerate prednisolone side effects . I am weaning off down to 1 mg but all my pains have come back . Any ideas what to do .

[Buster1610]

been on Steroids since last April having a bad time with weight gain and anxiety. Started on 15mg now down to 1mg . Dr wants me to take methotrexate but I won’t see him till June . Any ideas what to do ?

[SheffieldJane]

I think if you have managed this far without adding Methotrexate ( that brings a lot of side effects) I wouldn’t introduce it at your stage.

Your GP may be able to give you something for the anxiety though - this is quite common. It is possible to lose weight gained with steroids by cutting out empty sugary foods and carbs. I am losing weight due to GI problems - this has been the only positive - bread and baked foods were the culprit. ( alas). Small portions have helped all round as well.

[Buster1610 in reply to SheffieldJane]

thank you for your advise

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your problems but Pred really is the only proven drug for PMR -MTX doesn’t do the same job in controlling the inflammation caused by the underlying illness. And if your pains have returned. -without Pred they are likely to get worse…so maybe you need extra rather than none …

Please speak to your GP about your anxiety- there is help out there both medical and counselling -although some of that may be due to adrenals struggling fud to fast taper -see link -

healthunlocked.com/pmrgcauk...

Weight can be addressed by cutting down on carbs -this is a good forum - with a free app -

dietdoctor.com/

[Buster1610 in reply to DorsetLady]

Thank you for your advise

[DorsetLady PMRGCAuk volunteer in reply to Buster1610]

Hope you can get things sorted …

[SnazzyD]

why does your doctor want to start a medication with risks when you’re on 1mg? Even my rabidly afraid of Pred Rheumy docs were happy by this point.

If your adrenal function is low which is very common after higher doses long term, that can cause anxiety or make worse any anxiety that was there for other reasons. I doubt very much it’s the Pred directly and just coming off Pred just to feel better may make the anxiety worse if it is due to low adrenal function. This will be the case until the adrenals start to work better. Going onto Methotrexate won’t help this aspect because it’s working in a different way.

Regards weight gain, I found that my tendency to put on weight due to Pred didn’t go just because I was on low doses as it does in some people. Granted, it was better but I still had to watch my carbs for quite some months after stopping Pred. I would also watch every bite you eat and drinks as you may find your answer there; it’s amazing how it ramps up in nibbles, especially if one is struggling with one’s head space.

[Buster1610 in reply to SnazzyD]

as I have been reducing prednisolone noticed anxiety and weight reducing but pains back

[PMRpro Ambassador]

At what dose did the pain return? You have the choice of learning to deal with the side effects and no pain or pain and less side effects. Even MTX isn't a guaranteed solution because it doesn't work for everyone, even to get a pred dose when they are used in tandem, If it dod, they would use it. They don't.

For the weight problem, cut your carbs drastically, expecially simle carbs in processed foods and added sugar. The GP should be able to offer help for the anxiety but part of the cause of that could be the low dose of pred and that the adrenal function hasn't got back to normal yet

[Buster1610 in reply to PMRpro]

thank you . I will speak to my gp

[Buster1610]

thank you

[Flivoless]

15 down to 1 in a year is very fast. If you don't have any pain it's possible you don't actually have PMR. If you do have pain, there's your answer, Pred side effects or pain I'm afraid.

[WaltzG]

I take methotrexate instead of steriods.... worked well for me with minimal side affects...but I know doesn't work for everyone.....easy to come off so I would say worth a try! Good luck

[Buster1610 in reply to WaltzG]

thank you

[PMR2011]

Going from 15mg to 1mg in a year is very fast for both the PMR and your adrenals! The goal is not zero Pred, it’s finding the lowest dose that manages the pain until the disease burns itself out (generally 2-5 years). As others have said, anxiety could be from stuttering adrenals. Might consider looking up in FAQ on this site recommendation for managing a flare. Then once you’ve found the dose that manages the pain, you can “manage” the Pred side effects. There’s also loads of info on here for that, including minimizing wgt gain.

Unfortunately for us we have to be the conductor of our condition. You will get through this.

[Buster1610 in reply to PMR2011]

thank you for your advise

[PMRCanada]

I take MTX but that is because I got stuck at 9mg of pred for over a year. I would not have considered adding MTX if my pred dose was 5mg or lower as this represents a low dose (with hopefully less side effects).

Weight gain can be addressed by various approaches and diets, and combatted by physical activity. I know this first hand. Anxiety can be addressed with medications and/or counselling….no shame in exploring options as living with anxiety, pred-induced or not, can be very challenging indeed. And dealing with constant, ongoing pain can also contribute to anxiety. So you do have some say and control how deal with both of these negative side effects.

What you don’t have control of is your disease activity and when/if PMR will burn out and go into remission. PMR pain is very debilitating and taking a high enough dose of pred to combat it is key. As others have mentioned, you are seeking the lowest possible pred dose that will address your PMR pain/stiffness.

It becomes tricky when pred side effects (or other health issues) complicate our goal of getting off pred (a process that can’t be rushed and requires patience). Perhaps you could go back up to the pred dose where you did not have much pain and then explore alternative ways to address the side effects, thus resulting in a better quality of life. It doesn’t mean you’ll be at that dose forever, but at least your quality of life may be improved.

Wishing you all the best as you deal with this quandary. Not easy for sure. We are here for you along the way.

[Karenjaninaz]

Buster, are you on any anti anxiety meds now? If so, if it’s the benzodiazepine family, prednisone impairs absorption of drugs in that category. Discuss with your GP; your chemist can also explain. Prednisone would cause withdrawal symptoms not the anxiety.

[Buster1610 in reply to Karenjaninaz]

Hi I am not on any anti anxiety pills .

[DorsetLady PMRGCAuk volunteer in reply to Karenjaninaz]

Prednisone would cause withdrawal symptoms not the anxiety.…

Sorry have to disagree there - anxiety is listed as common side effect of Pred - and advice is to discuss with doctor.

Pred side effects

[Karenjaninaz in reply to DorsetLady]

Yes, you are right but pred does interfere with the absorption of benzodiazepines. If a person takes them chronically, adding pred then can impede absorption resulting in the anxiety formerly controlled by the antianxiety drug. That’s why I asked; I not contradicting.

There are any unexpected drug interactions.