Starting depo medrol monthly injections soon.any side effects apart from bone thinning known by anyone?

Diagnosed 2005 lupus sufferer

[Tigerlily4]

Can make you a feel depressed/edgy in the first few weeks but this passes after you've been having injections for a while. You may also put on weight, as with any other corticosteroid - limit your carbohydrate intake as much as possible. The worst for me is vastly thinned skin (especially on my arms, which are now extremely delicate), insomnia and more recently my feet/legs swelling in hot weather. However, all in all, it has suited me much better than oral steroids or anything else. Do please take calcium with Vit D every day and ask for regular bone scans though! Every 3 - 4 years would be ideal. My consultant let me go 10 years inbetween scans and I suddenly found myself with osteopenia last year. The effectiveness of the drug is also waning for me now but I top up with anti-inflammatories when necessary.

[Hidden in reply to Tigerlily4]

Thanks tigerlily4 most helpful

[vonnyrad]

Hello, tiogerlily4, I was very interested in your reply to 6161 as I have never heard of this particular drug. Could you tell us how long you have been on it and would you say that this drug's side-effects are more or less the same as being on oral Prednisolone? I have been on Pred continuously now for 30 tears, and have been told I will never come off it as my body is dependant on it, in fact, if I go only a few hours past my dosage time I can feel the withdrawal symptoms starting to kick in.I should so love to stop taking the Pred because of the side-effects, my worst is my legs, they are so fragile, and I now suffer awful ulcers if I get a bump or knock to my shins, which are so painful and take months and months to heal.My dermatologist said I have skin only normally seen in advanced age- I'm 52! If I could take something with fewer side-effects, but without depriving my body completely of its steroid 'hit' that would be so good!

[Tigerlily4 in reply to vonnyrad]

You're most welcome 6161 and hi Vonnyrad. I've been having depo-medrone injectons for 11 years now and first began when my innards could no longer tolerate the side effects of hefty doses of aspirin and that family of anti-inflammatories (voltarol, nabumetone etc), on which I'd been managing for a decade. I then tried prednisone tabs but they sent me stark raving bonkers ... seriously, who prunes hedges at 4am by torchlight, lol?! Therefore I was relieved to hear of this alternative. It's an extremely expensive drug though so you may have to fight to get it, depending on your particular Health Trust and Consultant. The good thing is its efficiency wanes over a period of time so there's no "OMG I must never run out of pills and always take them on time or I'll die" - ie. no "weaning off" is involved. This means that if you feel better at any stage you can simply skip an injection or leave it a few weeks longer before the next. The least on which you can manage, the better. I believe it's also better for my body/general health for it not to be assaulted by a particular dose of corticosteroids on a daily, ongoing basis. Psychologically empowering too to manage one's own treatment! The down-side is the injections only keep you really well and pain-free for about 3 weeks, after which it's a gradual downward spiral. The recommended maximum dose is 120mls every 13 weeks or 480mls per annum. However, this proved insufficient for me so I negotiated a 25% increase to 120mls every 10 weeks or 600mls per annum. Most years I've been able to miss one dose during Summer (I usually feel a bit better in warmer weather) but have injections closer together during Winter. However, it's efficacy for me seems now to be waning or perhaps the SLE is just becoming more vicious. Hard to tell. All-in-all, I thoroughly recommend it over the hassle of tabs though. The way my treatment is set up, I call the Rheumatology Ward of my local hospital, ask to come in for a jab as and when required and tell them how much I want. Unfortunately Vonnyrad, this drug will still thin your skin although possibly less overall than tabs. Know what you mean about your legs - if I knock my arms the skin simply peels off now. x

[vonnyrad]

Thanks so much for taking the time to reply, I do appreciate it.

I too have real problems with my stomach, 30 years of Pred and Azathioprine and 26 of Cyclosporin have seen to that, and I have never really been able to take anti-inflammatories due to my renal problems ( although they do work for me when I do take them on the odd occasion , e.g. when my gout flares up,but don't tell my doctors!). Being so dependant on the steroids has caused serious problems in the past , for example if ever I've had to fast for a particular test or scan such as a colonoscopy. It's Catch 22, I can't take them on an empty stomach or I'll simply 'bring them back up', and I can't eat as I'm fasting, ergo ,don't take them and end up in a terrible state due to steroid withdrawal.The last time that happened I was convulsing on the ward after a scan and the nurses didn't have a clue what was going on, thankfully, my husband had just turned up to collect me and realised, asked for a doctor to give me a steroid injection and I quickly came round, but it really knocked the stuffing out of me and aggravated the lupus.The Depo-medrone sounds better in that situation, as you say, no panic over missing a daily tablet, and kinder on the stomach.

However, I would really like to stop steroids completely for the sake of my skin- the peeling off of the skin sounds familiar, I had a knock last year on my forearm where the skin peeled back like a banana, couldn't be stitched and developed into an ulcer.I have an ulcer on my shin at the moment following a small skin biopsy of a tiny mole, I had 5 stitches but the centre couldn't be stitched as the skin wasn't viable, so a gap was left which turned into an inch square ulcer, been attending hospital twice weekly since the start of September, could do without it all, to say nothing of the wrinkly face- if only Botox was available on the NHS, it would be some compensation!

Thanks once again for your informative reply, I shall certainly mention it at my next appointment, well worth a try, especially as I have a colonoscopy due in the next couple of months which has been really worrying me due to what happened last time.This could be the solution!

Take care and stay well x

[Tigerlily4]

No worries. I'm so sorry about your ulcer and hope it heals soon. Try raw honey - some hospitals already use it and I hear with excellent results. My BF is a critical care nurse and big fan of naturopathy. Treating this wretched blight is a minefield! I've another tip for you to save your tummy. Voltarol suppositories (although may not suit you depending why you're having the colonoscopy). That's what I use now to top up the DM injections on the occasions they've not worked. I take 2 every other day rather than one a day but only when I really need to. Again, less is best. Thanks for the good wishes - back at you x

[gazorpf]

The depo shot caused my otherwise totally healthy daughter in law to have a pulmonary embolism. She was in the hospital for 8 days and on Coumadin for over a year. I would discuss this risk with the prescribing doctor and with your rheumatologist. Have you been checked for antiphospholipid antibody syndrome? If not, ask to be tested. This also causes clots. Since people with lupus are already at much higher risk for cardiovascular events, you really want your doctors to have an intense discussion with you before starting this medication.

[Hidden in reply to gazorpf]

Thanks gazorpf, I do have that complaint as well as vasculitus . Will have that talk. Am having to start these jabs as all meds are affecting my liver.