Steroid Withdrawal
Posted , 7 users are following.
Info please.
Diagnosed with PMR Autumn 2019. Had symptoms four months before that. Down to 5mg steroid by May 2020, stayed on that for 3 months - with very little help, info treatment or advice due to Covid. Felt isolated and uneducated. GP just keen to get me off steroid. Started taper. Been off completely for four weeks. Feel lousy. Disturbed sleep. Joint pain, tingling, extreme anxiety feelings. Okayish in am, by early pm want to go to bed to rest - that's when tingling and restless legs set in. No neck, shoulder, hip girdle pain. Have lost 18lb of steroid weight gain, still need to lose 16lb. Could additional weight be aggravating chronic knee pain? When do I know that adrenal function is supporting body function? I feel steroid has hidden a lot of my long standing joint pain e.g. knees and right shoulder ache. Had these for years before PMR. I developed steroid induced diabetes.
Review with GP this afternoon. Dreading it. Just going through the motions of me moaning and him concluding it's steroid withdrawal and I need to battle through it. Is there an alternative?
Many thanks for any thoughts on this.
0 likes, 8 replies
claire22107
Posted
GP rang and wants to do more blood tests. He feels it is steroid withdrawal, so is arranging cortisol level test. He wants to check my ESR again, Vitamin D and thyroid. He says it is pointing towards Chronic Fatigue Syndrome. I am not convinced. I asked him how long steroid withdrawal could take. He had no idea. I would be grateful for any others who have gone through steroid withdrawal. I really hope it isn't a relapse.
Anhaga claire22107
Posted
It is very unlikely that PMR is over in only one year. It sounds rather as though you got to 5 mg a bit too soon and needed a slightly larger dose and a slower taper. The median length of time patients have PMR is close to six years - not two as many doctors mistakenly believe. The way to find out if the pains you feel now are due solely to non-PMR issues, or if PMR is still lurking, is to take a dose of pred. If you still have some tablets on hand, try 5 mg for a few days. It may be enough, but if you feel you need a bit more, try a bit more. What dose did you last feel your best at? Maybe try that. If it's PMR it should resolve quite quickly and then you would need to start a slower taper. This is more than a flare where people feel returning pain, go up for a few days then drop quickly down. I think if you were to try that you might put yourself into a yo-yo situation and that is hard to get out of.
If on the other hand the pred makes no difference, then it's likely to be arthritis. I found my early doses of pred helped osteoarthritis but that came back at lower doses. However I have not been able to taper off pred altogether. I've been on it for five years, but for about four of those at or near 2 mg. The 2 mg does not help the arthritis, but if I taper I get returning PMR symptoms.
By the way you will find more patients contributing to a forum at HealthUnlocked. PMRGCAuk is the community you want on that health site.
Just read your reply to the post and I suggest that after a year the chances are indeed likely your adrenal glands haven't fully woken up yet, but I expect the doctor is muddying the waters when he wants to believe it's chronic fatigue syndrome and not just PMR hanging about. It can take a year to fully recover adrenal function after tapering off, but you are describing lingering PMR symptoms so I doubt you should have discontinued pred just yet.
Anhaga claire22107
Posted
I should add that symptoms rule, not blood tests. Up to 20% of patients never have significantly raised inflammation markers and even if you did at first that doesn't mean the markers will necessarily rise again after you come off pred. The reason they normalised is because pred was doing its job, not that PMR was necessarily gone! Pred isn't a cure. There is no cure for PMR, but for the majority of patients it does eventually go into remission.
EileenH claire22107
Posted
A different doctor would my suggested alternative! And yes, I know it isn't easy.
I echo everything Anhaga has said - and come over to HU!! Which is at least user-friendly and active
christine73918 claire22107
Posted
Hi I'm going through the same. Down to 1 mg of Predisalone every other day
Have the same horrible feelings everyday and I have put it down to withdrawal from the drug. Blood test say I am clear of PMR but that is rubbish. No real help for us I feel. Taking Biggenden Turmic Shot which has helped joint pain and B12 for energy levels.
Good luck
christine73918 claire22107
Posted
Hi I'm going through the same. Down to 1 mg of Predisalone every other day
Have the same horrible feelings everyday and I have put it down to withdrawal from the drug. Blood test say I am clear of PMR but that is rubbish. No real help for us I feel. Taking Biggenden Turmic Shot which has helped joint pain and B12 for energy levels.
Good luck
christine73918 claire22107
Posted
Hi I'm going through the same. Down to 1 mg of Predisalone every other day
Have the same horrible feelings everyday and I have put it down to withdrawal from the drug. Blood test say I am clear of PMR but that is rubbish. No real help for us I feel. Taking Biggenden Turmic Shot which has helped joint pain and B12 for energy levels.
Good luck
christine73918 claire22107
Posted
Hi I'm going through the same. Down to 1 mg of Predisalone every other day
Have the same horrible feelings everyday and I have put it down to withdrawal from the drug. Blood test say I am clear of PMR but that is rubbish. No real help for us I feel. Taking Bioglen Turmic Shot which has helped joint pain and B12 for energy levels.
Good luck