Decreasing Prednisone, symptoms

[Stella3]

I have now had GCA/PMR for two years and amazingly am now down to 3mg prednisone. I have been reducing very slowly. 3mg a day and 4mg the next. Now just 3mg a day for a month. I have been kept awake by muscle pains in my legs and am wondering if this is due to the Prednisone lowering. Has anyone else experienced this?

[SnazzyD]

Hello, it’s difficult to say without being you. Personally, I find that withdrawal at this level gives me overall a ‘cloud’ of pain all over especially at night. I can convince myself it’s muscular sometimes but there is no pain on movement or loss of function. My shoulder and neck muscles can feel pulled but it goes after a few days and is much helped by Paracetamol. I haven't had PMR, GCA and am currently dancing about with 2mg and 2.5mg. I have also dropped my dose by 0.5mg, changing slowly over 6-8 weeks before starting on the next 0.5mg. I think if I’d tried 1mg like you I’d feel pretty grim.

[Stella3 in reply to SnazzyD]

Thank you SnazzyD for your reply. I really appreciate it. I think that reducing by going 4 mg one day and 3mg the next day is sort of like doing 3 1/2 mg every day. I think I will go even slower next month. I really don’t want to go back up to 5mg. I will try some paracetamol to take care of the leg pain. If not I guess I shall have to reconsider. I ended up taking a sleeping pill as I couldn’t sleep. Don’t want to do that on a regular basis. It is really so helpful to have this forum to find others who are doing the same.

[SnazzyD in reply to Stella3]

Hmm, on paper yes, I’m not sure the body does the sums like that. In my opinion, not science, I think it notices 25% missing and gets upset so you have to sneak it up on you. Silly eh? I didn’t sign for this!...

[PMRpro Ambassador]

I agree with Snazzy. You could try a few days of 5mg to see if that helps the cramps - and drop back to 3mg if it doesn't. Is it only at night?

[Stella3 in reply to PMRpro]

Thanks PMRpro. No the leg pain is not mostly at night, though of course I think about it more when I can’t sleep. I am going to try paracetamol to tide me over the next few days to see if it goes away. It is so depressing to go back up with the prednisone....but I do know it might be the only way.

Thanks so much for your response.

[JulieR2]

Hi Stellar

I would say my biggest issues have been muscle pain. I started taking pain killers at night which really help. This also gave me the reassurance it wasn’t a flare.

[Noosat in reply to JulieR2]

Thanks for this post. Think I will try some night aspirin for the occasional leg pain/cramp

[HeronNS in reply to Noosat]

Try magnesium. Low magnesium can lead to muscle cramps. I've been at around 2 mg for over two years and it's only recently that leg muscle cramps became a problem - posted elsewhere the possible reason, but I'm nearly sure it's related to magnesium deficiency.

[Noosat in reply to HeronNS]

Am taking it. Will increase my dosage

[HeronNS in reply to Noosat]

Carefully - not too much!

[Stella3 in reply to HeronNS]

Thanks so much for your reply. I amazed that you have been at 2mg for two years. That seems an awfully long time. I guess one gets so hopeful when decreasing and to get so low and have to stay on a 2 mg regimen for so long....however, i have heard that one can live on 2mg for a long time without too many of the side effects that one would get on a higher dose.

I am going to work out exactly how much magnesium I am taking and increase it. I also get cramps a lot in my muscles....as well as the aching and weakness. So perhaps that would help with all that.

I appreciate hearing about your experiences.

[HeronNS in reply to Stella3]

Well, given the median duration of pred treatment for PMR is nearly six years, I'm over halfway there, so can't complain. Of course it would have been nice to be one of the few who really do go into remission at two years, but that's not as common as the doctors seem to think. I'm okay with 2 mg.

Although if you'd told me when I started how long it would take I'd have been shattered. I thought I'd be done and dusted in three months, not knowing that pred wasn't a cure!

[Stella3 in reply to JulieR2]

Thanks so much for this information. I am going to try some magnesium. I find that when I decrease my prednisone I seem to get flu like symptoms after a week, for a while. I am feeling somewhat better right now.

I hope your muscle pain gets better.

[powerwalk]

I get a lot of leg pain as the Pred is lower. I had horrendous leg pains for a long time before I went on Pred. I was told it was fibromyalgia. But the steroids got rid of it which is not meant to happen. It's actually one of the things I dread coming back as I used to literally roll around the bed with the pain. I am on 4.5 at the moment, they ache but nothing close to what they were. At higher Pred no pain at all. Hope you get it sorted.

[Stella3 in reply to powerwalk]

Good luck and thank you for your response. It seems that every time I lower my prednisone dose I get a reaction. I do hope you get off yours soon.

[PMRpro Ambassador in reply to Stella3]

Are the steps down small enough? Some people stuggle even with 1mg steps.